Thank you Pam and Paul
I had never heard of this condition before this interview.
What is remarkable to me is that a hip replacement was suggested which was not necessary. wow. There is a lesson here to get more information on any diagnosis because it might not always be accurate.
The other fascinating thing for me is that this is a condition which resolves. That is like...unheard of for many medical problems. I wonder what causes it to just...go away on its own.
I hope that Paul fully recovers and comes back to tell us about the healing process.
Great interview!
Hi MM, thanks for stopping by! There's seems to be more women, in their 3rd trimester that have experience with this, but young men also are subject to TMO. I found it interesting that this is rare but has been in the medical literature for a long time.
I don't truly understand how it resolves, other than that can happen with inflammatory disorders, but inflammation isn't the only hallmark of this disorder. Paul has to be very careful not to fall or bear weight since it can cause a fracture due to the micro-damage that occured to his femoral head (femur head that fits into hip socket) from this.
Some speculate that low vitamin D could be a cause, but I don't know if that's been verified through clinical studies. I wouldn't want to deal with this, but it is a self limited disorder and resolves, but we don't actually know why.
We do need to realize that osteoporosis and rare forms of bone loss do occur to young people, and I read a lot about pregnant mothers who have something similar to this or this all the time. We have to stop thinking that bone loss is an older persons disease. For the most part it does occur to older people but also to many young ones too. That's why I've tried hard to shine a light on these disorders with the young, and did an interview with 1 member that have Idiopathic Juvenile Osteoporosis, and a doctor that treats this. We have to get the word out that the young are at risk too. Many have secondary disorders that can cause bone loss at a very young age-from birth on-but most of these rare disorders are diseases of exclusion, meaning all secondary causes have been ruled out before IJO and others, can be given as a diagnosis. I've gone off track talking about IJO, but TMO reminds me of this so much since it affects the young.
Thanks for joining us!
You raise some very good points Pam!
One thing I also wondered is if they figure out how this type of osteoporosis resolves...would it give us any clues as to how to cure chronic osteoporosis.
Why should people care about this topic? Like you say this isn't just an "old" person's disease or a just a woman's disease. Osteoporosis can affect men as your interview shows as well as young people. The other reason to listen is that the fractures caused by osteoporosis can cause disability or even death. Knowing about good bone health is vital information for everyone.
Went to the International Osteoporosis Foundation site and the statistics show the facts about how serious this condition can be.
For example...
Worldwide, an osteoporotic fracture is estimated to occur every 3 seconds, a vertebral fracture every 22 seconds.
1 in 3 women over 50 will experience osteoporotic fractures, as will 1 in 5 men.
That last one made me take notice. That is a lot of people!
And how about this statistic from BBC news: Studies show that 20% of women who suffer a hip fracture die within the next 12 months.
Here is another quote from the same BBC article for members to take notice:
"But despite the fact that half of women over the age of 50 will suffer a bone fracture, only 4% say they worry about developing osteoporosis, compared to 56% who fear cancer."
Some experts say that as many women die from the fractures caused by osteoporosis as they do from breast cancer yet we don't pay attention to this risk. Many people don't even know that they have bone loss.
So what you do here Pam is of great importance. We just need to get more people to hear your message.
Keep doing what you do. You are helping more than you know.
MM
I wholeheartedly agree!
My oldest sister has just been diagnosed with bone loss and it totally took her by surprise. She does yoga, exercises, eats right, takes her vitamins...etc...but she still has this condition. I worry about her. And I worry about me too as I have the same small frame as my sister. This very well could be a health issue for me as well and good lord...I already have enough health issues to worry about. So this is one reason I am very interested in this topic. But long before my sister was having problems I came here to read Pam...as she is very good at what she does on this site in both leading the community and presenting us with the latest information on osteoporosis and related conditions.
Your advocacy and political activism are extremely admirable. We absolutely need more of this in order for osteoporosis to take more of a priority in education and prevention.
I do hope you stay active on this site and post now and then about how you are doing.
Thanks for sharing your story....and great interview Pam!
MM
Bravo Paul! Well said! If we could all do what you've done, write to our representatives, they would have to listen. I know I've written about the cost of DXA scans going up 4 years in a row, but so far we've only seen a stop-gap measure where the price was frozen for a time, but now it's going back up again.
Many here and I'm sure in England are out of work, and even though a DXA scan isn't considered all that expensive, it is a lot of money for someone who has very little.
Keep doing what you are. Some day this work has to pay off, even if it kills me (just kidding). I'm a bit passionate about spreading awareness of bone loss in younger individuals and it may have to do with the fact that I see these young children, still in stollers, at my bone and mineral docs office and my heart just breaks, it truly does. She treats thing like, osteomalacia, Pagets, osteoporosis, idiopathic juvenile osteoporosis and other metabolic bone disorders so that's how I know that it's out there, from just one place, which is a reaserch facility. There are children being affected by bone diseases every day. Also parents losing custody of new borns because they sustain broken femurs at 2 months old. Usually they find that the mother was vitamin D deficient before and during pregnancy, but if your gyno doesn't treat you and says oh you get enough D from food, what is happening to the baby? Then Social Services knocks on your door and wiskes the baby away even though no trauma caused the bone to break. Again, I'm getting off track and away from TMO, but since this disorder is seen in women during their 3rd trimester, it reminds me again of these other stories I constantly hear.
Hopefully we'll find a solution to this soon, because the stats have always been rather alarming (thanks MM for posting those). We need to pay more attention to this, and once and for all know that it's not for just those over 60-70. Heck I've had osteoporosis since my early 30s, but now it's in the osteopenia range and I'm much improved.
Keep up the good fight and I sure hope your pain has lessened today!
Pam
I too hope that Paul will be able to let us know how he is doing with recovery. It would be so cool to find out what's happening and when, so we can keep track of this. It will also help the many others who may be dealing with this and haven't posted yet. I'm sure some lurk, which is fine, but if anyone wants to jump on into our discussion please do.
Paul, if you have anything you want to add or correct that I have said, feel free to post, when you have time. We'd love to know how your days are going and any new successes or obstacles you might encounter.
Take Care, and thanks again for bringing life to our interview!
Pam
fascinating! I'm glad you got the proper diagnosis, Paul! Hopefully this will heal on the faster end of the estimate.
Thanks for a great interview, Pam!
Thanks Lene! So glad you read Paul's interview and made the time to stop by. Thanks so much! Paul is an inspiration to me and I know to us all! His family has a lot to be grateful for and I know they appreciate and take care of him too. I hope he recovers soon and the incredible pain, from this, goes away soon.
Please do take care of your bones and have that DXA or QCT soon
Take Care!
Pam
This article truly hit home for me as I am going through the same thing right now.
The end of October last I suffered a overuse stress fracture in my left knee. It became overtly swollen and painful and did not go away even after two months. I was told to stay off of it and did for the most part. Around the first of the year I begain noticing a raw, burning feeling/pain in the back of my upper thigh. The pain rapidly progressed and spread throughout my entire lower left side. The pain was beyond excruciating with any movement. I got an x-ray after three weeks which showed no major fractures but the pain was so unbearable that I had my Dr. schedule an MRI. This showed diffusely abnormal signal intensity in the femoral head, micro fracture, and edema in the bone and most of the surrounding soft tissue. It was extensive. The day before last, I was referred to a rheumotologist who did a bone density scan which showed that the problem hip's density was far lower than the other or any other part of my structure. So, the doctor has decided on a diagnosis of transient migratory osteoporosis, probably stemming from my original knee injury.
Hopefully, more will be learned about this and will at some point be treatable as I think this may be the cause of many hip replacement surgeries.
Hi RavenRose: We're so glad you've joined us and shared your story. I do believe that this disorder is greatly misunderstood and occurs more than we'll ever know. I'm also very sorry you have to endure this and the pain!
Are you receiving any type of treatment? Are you able to do physical therapy, or is the pain too intense? If you could get an order from your Dr. for this, providing it's recommended, you may want to consider aqua-therapy first since it's a non-weight bearing form of exercise.
It's interesting that this stemmed from your knee injury, since joint injury can cause this, through the Regional Acceleratory Phenomenon. What you say below is very common with this disorder and I'm glad you had a doctor who knew enough about TMO to give this diagnosis and didn't jump into a hip replacement.
"...diffusely abnormal signal intensity in the femoral head, micro fracture, and edema in the bone and most of the surrounding soft tissue. It was extensive." Bone marrow edema is a hallmark of this, so it's great they found that so they didn't proceed with another diagnosis like hip fracture.
I hope Paul has a chance to jump in here and help you out with some suggestions from his personal experience. May I ask, are you in the U.S. or some other country? It might help to know to hook you up with others I've encountered with this disorder.
What are the plans for this? Has a treatment plan been mapped out, or are you just waiting for recovery after a time of non-weight bearing on this leg?
Thanks so much for joining us, and do keep us informed on your progress, if you can. I really appreciate that you found us and this interview and hope others do as well, since not much is written about TMO.
Good luck and come back anytime.
Thank you, Pam. I certainly would be grateful for any information or even experiences to relate to from Paul. I am from the U.S.
Although this began in my hip 9 weeks ago, I was just diagnosed with TMO this past Tuesday (after tests done on Monday) by a specialist I was referred to, given the news via phone from my Dr. who was on his way out of town, so there hasn't been time to really discuss it. I am hopeful that they will begin some mild therapy soon as I have lost much muscle mass since I injured my knee in late October. At present, I am on protected weight-bearing/bed rest and hydrocodone for pain. The testing on Monday caused a setback and an increase in pain, for this reason I am opting out of the suggested bone scan until I feel that I won't be causing further damage. Still awaiting the results from the blood testing.
Also, should note that my other hip is also mildly affected now.
Again, any information on this is much appreciated.
That couldn't have been better to hear. Today was a "bad day" emotionally, I don't think anyone would understand, if they didn't have something like this, how difficult it is sometimes to cope. Frustration, pain, and uncertainty tend to prey on the mind with this and it seems like it will never be over.
My Dr. wanted to put me on Forteo but after researching it I feel that it isn't the right treatment in this case. If the TMO resolves itself, I would like to procede without any drug treatment. Forteo has been shown to increase bone mass, however it is upwards of a thousand dollars a month, and not always covered by insurance. My bone loss is regional and the med can't distinguish that so it could enlarge the bones that are not osteoporatic.
I have read that TMO affects middle-aged men and pregnant women mostly, I do not fit either of those categories.
Anyway, thanks for your imput and hope your TMO is about over.
Yes, pain in the shin bone! Mine comes and goes, but is rather sharp and feels like swelling in the bone.
As long as the bone density test didn't show any major loss in my other hip, I am hoping that it isn't progressing, although it is the same kind of pain, which is a unique pain.
I think I omitted the fact in my first post that the MRI results on my hip, like my knee, showed a small subchondral insufficiency fracture of the femoral head. So, there where two fractures and the TMO. My pain was off the charts for over 4 weeks. There is some relief now compared to the beginning and hopefully that trend will continue. On Monday morning, I was actually seeing a light at the end of the tunnel, but going through the transport and testing at the clinic caused some damage to the area and now have gone backwards some.
Right now I am most worried about cirrculation in the affected leg...if there is anything that can be done to keep from getting thrombosis.
Hi RavenRose, I'm glad Ruimon has been such a great help here! I agree with his words of wisdom.
There is one thing I'd like to mention about Forteo. I totally understand your decision to treat this without meds, I think only you can decide this and you have to go with your gut.
I took Forteo for 2 years, and it is used for shorter periods of time with things like pelvic/hip fracture healing and repair. It can speed the healing process and stimulates bone growth so some get pain relief with it. Not all have this side effect, if you will, of pain relief, but some do. I don't think Forteo would cause an over-growth of bone, but I also can't say that with any certainty either. In a clinical trial at the University of Rochester, they used Forteo for 12 weeks to help with pain and regrowth of bone during the recovery period.
I just wanted to add this about Forteo, and think you should stick to whatever decision you make.
Are you taking anything that would cause a blood clot, like hormones, or do you have a history of clotting? I have the opposite problem, blood doesn't clot well (Von Willebrands) but I have been checked for clots after every spinal surgery due to the inactivity. Also, Evista can cause clots, so be careful with any meds that may promote this. If you have any warm areas with pain and swelling get to the hospital asap. You don't need an order for this if you are a clotter. They'll do an ultrasound right away and if they find one will keep you in the hospital and start anti-clotting meds. You may want to ask about the possibility of taking something to prevent this. Heparin is one option and is given short term unless a clot forms, then it could be longer.
Good luck with all this and keep us posted-okay? I'm so sorry about the pain and hope it goes away soon. Paul is right, when you have pain, do something to counter-act it that is positive, or that makes you feel better emotionally.
Hello RavenRose,
Sorry to hear you are suffering with this.
Yes, you will experience muscle wasting due to your inability to walk. It happens quickly. I am a 190 pounds male in good shape...I dropped down to 165 pounds...my thigh is normally 22" around...dropped to 12". The muscle all came back...but it gives me an opportunity to tout physical therapy.
I didn't take any drugs for this (bisphosphonates)...didn't have any surgery performed (decompression)...but I did have good physical therapy. This is so important!! I can't stress this enough. They will help you manage the pain and guide you through recovery of your strength. They won't know anything about TMO. You will have to educate them on what it is and they should let you work at your own pace...but you need to keep using your joints and challenging your body to get back to normal.
It will take what seems like forever to recover. When you look back on it, the time will be measured in weeks...but when you're going through it, it seems like it's never going to end or abate. The pain leads to muscle atrophy which leads to more pain. My muscles ached when going through the wasting process. The PT definitely helped me recover faster and resolve the pain faster.
Best wishes, DaveCat
Hi RaveRose, I hope you have a chance to read about what I posted on blood clots and Forteo (unrelated). No hurry, but just wanted to clarify that the trial "linked" in my reply explains the study on Forteo and pelvic/hip frax at the University mentioned can be correlated to femoral head fractures. Not saying to think about this, just thought you'd like the information about pain and healing with Forteo even though you don't want to take it.
Have a great weekend! And take care one day at a time.
Pam
Hi Pam,
I just read your bio and sorry you have to endure such an ongoing and, I'm sure, painful back problem.
I think Forteo does have it's better applications and back problems and regular osteoporosis would benefit from this treatment. Exciting, the microchip administraton, as when the doctor explained it to me I wasn't sure I could give myself the shots everyday and I'm sure this would help those who are going to take it. I also think medical science research needs to step up their studies on female hormonal administration as the current modes are too dangerous or can't be taken for long enough. I have read up on men's treatment enough to comment , but in an increasing middle and late aged population I think this is very important.
I certainly hope there is improvement for your condition and thank you so much for this very informative and helpful forum.
Hi RavenRose, thanks so much for your concern, I do appreciate it!
As Paul and Dave mentioned, it seems like this is a tough-it-out type of disorder and meds wouldn't help much (referring to osteop meds). I hope someone can answer your question about opiates. We do have pain mgte docs here, so maybe I can see if one will check in???
For those reading this...Forteo is nothing like a regular injection, and I do hope the microchip is available some day, but we all know how long it takes to get through the FDA-to market- process; many years.
Just in case anyone is interested...Forteo injections are sub q and the needle is the size of an eyelash (looking at them now, by BD, 31G x 5/16ths-8mm needles). They also come in 3/16ths of an inch too. It doesn't hurt and the only side effect I had was an occasional bruise, which is pretty good since I have Von Willebrands and bleed easily. Of course others may experience totally different side effects, but the injection is the same for all. Here's a video on Forteo just fyi. I hope I'm not sounding like a broken record here...but for those with osteop...you may be interested.
I hope your pain goes away soon, and wondered if you've tried an egg-crate on your bed or tempurpedic mattress? Tempurpedic has a 90 sleep trial if you want to try one for free...well it may not be free, but you can change your mind and not pay a cent.
I had trouble sleeping on my side for months due to bone harvesting at the iliac crest, so I know a little about the pain lying on your side. I had that done 4 times and then used the bone bank for the other 3 x's. I still have trouble sleeping in any position, but it gets better when you can find the one thing that might help you, so try as many suggestions as you get.
I too use the elevated commode, shower bench, long handle sponges and wedge on our bed. I won't bore you with my long list of other things, that I use in the car etc., but you get the idea. I also had a grab bar put under the mattress to help with getting up from a reclining position.
So glad you all could connect here! You all have such wonderful advice and are so willing to reach out to one another, this is the true meaning of patient advocacy.
Take care Raven...we're all pulling for you, Paul, Dave, TheProcess, Alexa and anyone else reading this.
Lurking is great, but if anyone is reading this and wondering whether or not to jump in...please do We'll talk to you all later, I just can't sit any longer, but I will check back in to see how you all are doing and thanks sooo much again!
Pam
Pam, great interview! My best to Paul!
Having suffered from this first hand, reading every case study on the web, reading this article and scanning the comments...some thoughts:
Paul (at this point) has TO. It hasn't (M)igrated yet (TMO). Time will tell...they say it takes up to 18 months to recover...that's TMO when multiple joints are affected. The disease goes through them one-by-one. It doesn't affect all of them at the same time. As soon as you're on the mend, another one will fail. Distribution between the two conditions is 50-50. TO usually only affects the hip...TMO can affect any load-bearing bone/joint. It has been speculated that these have different causes...but the cause is unknown of course.
Just because "osteoporosis" is in the name of this syndrome don't draw any correlation to that condition. TO/TMO is caused by swelling in the marrow pockets (TO/TMO is aka "bone marrow edoema" or BME). The body reacts to the swelling as though the bone is damaged (and maybe it actually is/was). This causes the body to perform bone removal and re-reconstruction. The painful part is the swelling...reflecting on the MRI as water. The risky time is after the pain when the bone is compromised but you feel a bit better. Someone commented that osteoporisis is not thought of as being painful...even in this syndrome, that stage of the disease is actually not (too) painful. I think the pain at that point is residual from the BME). There's really not much to learn from this disease (or share) with regard to traditional osteoporosis.
I think Paul did well not to take traditional osteoporosis medications. In fact, NSAIDs and anti-osteoporosis medications may inhibit bone repair as much as it inhibits bone tear-down. You just have to weather the storm...
Yes, avascular necrosis is a common mis-diagnosis...it takes an expert to read the MRI correctly. ANYONE with an AVN diagnosis should raise TO as a possibility alternate explanation.
My own tests specific to comments and possible causes raised in the comments:
Vitamin D deficiency -- My tests were normal during the disease itself and a little low afterward...so I don't know if you can infer anything from my tests.
Bone scan -- I had a bone scan on the "good" leg (before it was involved). The scan was normal...the radiologist said there was no risk of TMO in that leg based on the scan...and 8 weeks later I had TMO in that leg. That was the clincher that it was TMO...and not low D or just fragile bones. I think you can infer from this that it is not caused by weak bones or illnesses that cause weak bones...you need to look for what is causing the swelling...which is usually not a focus due to the more common name TO/TMO and not BME.
Auto-Immune -- Fluid was removed from the bone and joint...the ortho said if it is an infection we'll see 100,000s of white blood cells. If it is auto-immune, we'll see 10,000s of white blood cells. The count came back at 1500. Everything was perfectly normal except higher than normal calcium (but not high enough to be pseudo-gout). That was what one would normally see after a bone injury as the body tears down in prep for reconstruction.
I didn't see this, but it may be mentioned somewhere...the disease affects men in the 40s-50s and women in their 3rd trimester. The only abnormal test I had was low-normal testosterone. I am on a testosterone replacement therapy (TRT) now but I don't know that hormones are to blame. If Paul also has low T also, then it might be worth investigating further.
I am doing fantastic today...I'm working out...can leg press 600 pounds. I just started jogging again (only 1 mile though). Not all the kinks have been worked out of me yet, but I feel like I will have 100% recovery soon. The condition took 18 months to work itself out...which intermissions between attacks.
Thanks for bringing attention to this Pam...best wishes to Paul. I hope you only have TO :)
Thanks. Dave
Hi DaveCat,
Good to see you again on this comment board. Thank you also, Pam, for letting me know this existed. I will be happy to offer any assistance I can to anyone going through this. I want to say, though, that DaveCat has a wealth of information and knowledge and really helped me on another forum board when I was looking for information or just someone who could understand what I was going through. In some of the darkest hours, he gave me much inspiration and really helped me pull through this....thank you, Dave.
I was female in my late 50's in relatively good health when this started in spring of 2011. I am one year out from the first signs and symptoms of transient osteoporosis of the hip.
My experience is a lot like Paul's. Without going into a lot of detail on this first post, I will just say that I have never experienced such pain and frustration as I have with this condition. The pain escalated to upwards of 9 at times and no medication, other than Norco (hydrocodone/Tylenol), would work for me. Bed rest for a couple of months, loss of independence, depression, frustration at the slow progression back to normal, crutches for 5 months, cane for another 2 months. You name it, I've been through it with this awful condition.
I finally started to walk again the end of September of 2011. After being on crutches for so long, I'm sure I misaligned my spine and gait and have been going to therapy for the past several weeks for back issues.
Now the good news: I am better, and you are going to get better! I am walking now and have almost resumed my normal daily activities. I never would have believed I could have recovered to this point as the pain and disability were so intense. I almost feel sorry for my ortho doctor as he had to deal with me every 30 days looking for answers when there really are known. The only thing I could do with this is let it run its course, didn't weight bear for several months, and took pain medication. You can't rush the recovery and it is slow, but it does happen. I sometimes think the worst part is the emotional toll it takes on you when you are at the mercy of this. Trust me, I know.
This is an amazing thread. I have Regional Migratory Transient Osteoporosis. I am in the final stages (I hope!). It started in October of 2010 and the pain was significant for the first 4 months. I was misdiagnosed several times before finally sending my MRI back to the states (I was living overseas when this developed), which is when I received my RMTO diagnosis. I certainly could have benefitted from crutches and bed rest but none was advised for me, so I soldiered on. I simply took an NSAID to cover the pain and did nothing outside of work. As it stands now, 16 months later, I still have bouts of pain. The pain 'ping pongs' between my hips. Just when I think the disease has finally run its course it begins again. However, the pain has never been as severe as in the initial stages. The pain has ever so slowly decreased. Unfortunately, this is just one of those things that takes time. I have read that it can take up to 2 years for it to be over with. As others have said, remain positive.
Hi Dave! Thanks so much for stopping by! I'm glad you explained your hormone levels, since I wondered if D or test/estro could play a role in this disorder.
The muscle waisting you mentioned sounds very rapid, compared to say inactivity from other injuries/surgeries. Since you can't weight-bear for a pre-determined amount of time I could see how easily this would happen! This is another difference from surgeries where they get you up and moving as fast as possible to prevent this, and clots. Did they let you try aqua-therapy? I did this after spinal surgeries, for several months, then you graduate to land exercise (weight loading).
If you want to post any pertinent links, on TO/TMO studies here, please do!
Thanks again for sharing with us and the best of luck to you! We're so glad you are recovered!
Hi Alexa, welcome!!! So glad you could join us! That's fantastic news that you're better now, but sad that you had to go through so much with this. The pain you all talk about sounds horrific!
You mentioned that the crutches caused some back problems, which sounds typical to me. Did it also cause shoulder issues? I've often wondered...if I ever "had" to use crutches, would my low back and shoulders survive. Is it possible to use a walker instead and absolutely keep the weight off the one leg? I know that sounds difficult, but I wonder what those do that just can't use crutches.
How about sittting...is that excruciating as well? I'm trying to figure out what the other options might be for those who can't use crutches or walker since there are those patients out there!
My question about sitting has to do with using a wheel or power chair, is that a possibility?
I better stop asking so many questions, but this is such a profound type of injury with the pain and physical limitations that I think others may need to know these answers.
Again...I'm so glad you are better now and you guys could join us! Stop by any time and if you have any links to post go ahead.
Take Care!
Hi TheProcess! Welcome! Thanks for stopping by. Could you tell us what the misdiagnoses were? Like Paul, who got a avascular necrosis dx, did you hear that too? This disorder becomes more mysterious with each post! How in the heck did they finally send your MRI to the U.S.? Did you think of this or was one of the Dr.'s on the ball?
Sorry that the pain ping pongs between your hips, but at least you are at the end of this, or close to it! Wow, I can't imagine NSAID's being enough for the pain, but I guess they worked for you. I know if I take any of these I start having bleeding problems and then bruising, terrible stomach ache etc, so I just can't take them. I really have to watch the orders in hospitals because one of the often prescribed pain meds after surgery is an NSAID, and if they give me that my H&H drops fast and I need transfusions...not fun! I actually had a nurse try to give me one after a hysterectomy and right on my id it said I was extremely allergic to it and she said I can give it to you anyway, other wise you're going to have to wait 8 hours for the pharmacy to send up something for the pain. I told her don't you dare give that to me and toughed it out until they could send something else up, which was more than 8 hours...what a horrible day that was. I wasn't in the mood to have transfusions or internal bleeding.
Thanks so much for telling us your story! Feel free to post again and add anything you want to. I'm sure the others will truly appreciate it.
Best of luck to you!
I was actually in Korea when all of this started (I am not military). I saw 5 doctors there and no one was able to give me a correct diagnosis. The first doctor said it was just a torn muscle. The 2nd doctor thought it was hip synovitis or some other disorder I can't now recall. The 3rd doctor simply didn't know and recommended me to his superior who thought it was AVN and wanted to do a biopsy. The final doctor thought it was a fractured subchondral. Well, I got sick of the whole thing and just took the initiative to send my MRI back to my father (who's a doctor luckily enough!) and he had it read by a specialist who said that it was RMTO. What a long story, eh? Anyhow, the pain was unbearable but I had no other options but to bull my way through it. I keep praying that the end is nigh!
Hi Pam,
Thanks for the reply. As far as sitting, that was almost impossible for me for the first few months. My best position was in a semi-reclined spot on the bed which took the pressure off of the hip and femur bone. A wheelchair would have been nice to use, except that you are basically housebound for the first few months and navigating doors and turns in my house would have been impossible. The walker would have been a good possibility, but I got to be pretty proficient on crutches and didn't pursue that.
A piece of medical equipment that was truly helpful was a "toilet riser" which simply sits on top of the existing toilet, but raises the height about six inches. It has handles which aid in lifting yourself also. I also had a shower chair, which was amazing after weeks of literally bathing out of a plastic bucket. They also make a metal brace (hand rail) that fits over the side of the bathtub for easy access into the shower. If anyone is interested, I can send you the link to order from Amazon.
My upper body got a good workout from the crutches, and I didn't really have too much problem with my shoulders. It's the lower back which is the problem. I just completed 15 sessions of spinal decompression therapy on a DRX9000 machine, along with chiropractic adjustments and dry hydrotherapy. In the beginning, it was very, very uncomfortable on the DRX9000, but gradually got a lot easier. They claim an 87% success rate for people with herniated, bulging or other disc problems. I definitely saw improvement, but I also witnessed firsthand people who had simply amazing results. There are some really good reviews and articles on the DRX9000, but as with anything, it also has some people claiming it's not what it claims to be.
Prior to this condition, I had worked for almost 20 years as a freelance court reporter and spent upwards of 60 hours a week in front of the computer. I feel sure that part of the back issue now is all of the sedentary work I did prior. Just another testimony to the benefits of regular exercise to keep yourself healthy and limber.
As DaveCat says, it's really important to do the physical therapy and keep up the exercises at home. You probably won't be in a physical position to do them until you are past the extremely painful stage. As soon as you're up to it, please start some program to start strengthening your muscles. It is very important.
Wow TP! Your Dad's a doctor. Sure would like to know where he is located, but I know that wouldn't be kosher. I'm getting the impression that not a lot of doctors know about this, or maybe they've just forgotten about it, not sure.
The nomenclature on the dx name is interesting too! TO, TMO, TRMO, RMTO and the rest or maybe they're just acronyms.
Keep us posted on how you are doing and if anything else should arise-okay?
Have a great weekend.
I just want to add that PT can also include massage and joint manipulation. When it was too painful to exercise, the therapist manipulated the affected joint. It was teeth grindingly painful at times but I truly believe I have better mobility in those joints today because she kept them moving with a full range of motion. The joints that did not get that TLC are a bit stiffer than those that got manipulation. The massage was helpful in reducing the muscle pain associated with muscle wasting. It also may stimulate blood flow and possibly blood flow to the bone (one theory is that this is caused by blood flow disruption to the bone). You also have to keep up the strength in the areas not affected (which is hard to do if you're incapacitated). Because this disease can migrate quickly, if you haven't tried to keep up strength in the "healthy" areas, they can be hit next and it becomes a one-two punch to your system.
I was first affected in the right knee. No PT and I was very weak. The second attack was in my right hip. I was really kicked when I was already down. The second attack lasted longer than the first and was much more painful. I attribute that to the lack of PT and going into the second attack in a weakened state. I was also on high doses of NSAIDs for the pain. I do believe that this prolonged the healing process significantly too.
After these initial bouts I was switched to narco pain relief and Tylenol. I also started getting PT and the next two bouts were shorter in duration...recovery came faster. Just as painful...but I was better at managing it with the PT and pain relief.
I was only confined to bed for 2 weeks with the first attack. In hindsight I probably should have been up and about...with protected load bearing on the leg, of course. No PT and being completely off my feet put me in a worse condition than later attacks where I tried to challenge myself through it (without risking a broken bone).
I want to confirm that the disease can definitely cause depression. You take for granted that you can walk and then suddenly you're unable to. You don't know what's going on...this is VERY rare. The doctors at UCSF never saw this disease before. I was paraded around the ortho's office and introduced to the doctors like I had one a prize. The diagnosis process takes a long time...often resulting in dead end and wrong diagnoses. The pain sets in rapidly but the recovery seems to take forever. Hang in there...you will get better and you need to be patient. Don't push your doctor into treating you with something worse than the disease itself (surgery or drugs with harmful side-effects).
I also want to mention that because this disease is diagnosed by exclusion...TO describes the symptom, not the cause...there are many illnesses that can cause these symptoms. TO refers to the idiopathic version (no identificable cause). Everything from bone cancer, auto-immune disorders to organ function issues can cause these symptoms. You should have a thorough work-up by your doctor. I was tested for 21 different illnesses including such far flung things as Lyme Disease and bone TB.
I'm curious whether the women affected had onset roughly the same time as menopause. I strongly suspect that there is a hormonal component to the cause of the disease...but I haven't seen any evidence of that in anyone else's cases.
Best wishes. DaveCat
Hi Dave,
You mentioned a possible connection with menopause changes with the women on this thread. That very well could be, but personally I had been out of that for quite a few years.
One of the things I considered during the "thinking months" of this down time was that I had had quite a bit of overwhelming stress in significant parts of my life just prior to developing symptoms. It was a time where there were three major stressful events that just happened to occur at just the same time. Not just your ordinary, everyday stress, but significant issues that were just a little overwhelming. I'm just wondering if this had triggered some underlying issue and gave rise to this condition.
I don't know if anyone else can look back and say the same thing, but I do know that disease often takes over when there is significant dis-ease.
Yes, dave, it definitely seems to be hormonally conected. In Alexa's case, the stress she was under could have affected her adrenal system which serves as a backup for replacing hormones. I very much believe that when they say it affect mostly men and pregnant women in their third trimester, or men 3 to 1, it is only because this is an underdiagnosed condition and many women are getting hip replacements that maybe don't need them and that this is an equal opportunity disease/malady.
TheProcess...Persistence and education/research sure does pay off!!! It now sounds like all of you had a dx of AVN, first, Wow!
Glad you stuck to your guns and informed both your Dad and the rest what YOU thought was going on! Patients should never be underestimated, since they are the one living with the disorder and could probably educate many a doctor! Does your screen name have anything to do with all this? It sounds like such a process to go through to reach recovery or the beginning stages of it at least.
Take Care!
My fingers are crossed that you only have the one bout. I had right knee, right hip, left inside knee, left outside knee...with intermissions as long as 3 months between attacks. Try to keep up the muscle strength in the areas that aren't affected. Keep taking those steps...but don't over-do it! DaveCat
Hi Paul- Woohoo what an achievement! So happy to hear about the steps you were able to take! Great Job! Please do keep us posted on what your Rheumatologist tells you at your appointment. I'm keeping fingers and toes crossedand sending good vibes your way.
I would love to hear you are well on the road to recovery and your trip/vacation can take place as planned! Your family must be so thrilled. Dad is making head way...way to GO.
Hope the weather is nice there and it still isn't too cold. We have an absolutely gorgeous day here. Not too much wind and plently of sun with flowers in bloom. Wish I could post a picture showing you just how beautiful it is, and how my hubby gave me a "just because" bouquet of gorgeous yellow daffodils-I'm so lucky!
Hang in there and keep making those wonderful advances towards improvement!
Take Care and let me/us know what you find out...we'll be waiting with baited breath 
for the good news!
What Alexa says seems so familiar to me. Laying down in an inclined position...this is how I've had to sleep for over two months, which is rather hard on the lower back. The raised toilet seat is a must. Hygiene is "the best you can'. My husband and I have worked out a quick and time efficient way to wash my long hair at the kitchen sink.
Sitting is still painful, I cannot yet sit on a sofa and even the rented wheelchair is only good for about 15 minutes, enough time to eat. Waiting for a time when I can at least sit and watch TV for a while on the couch.
Unfortunately, my elbow has developed severe tendonitis that extends to my shoulder (hopefully, there isn't a fracture there as well, as I have weak arms). That will have to stand because I need to be somewhat mobile to take care of myself.
I have some questions. First, how long was it before you could sleep on your side again? Secondly, for those taking opiate pain relievers, did you have trouble stopping them?
Hi RavenRose,
I slept on my back for probably about two to three months in one straight position. I had almost forgotton about that until you brought it up. I think my mattress now has my body outline permanently engraved into it. It was a gradual transition to where I could eventually turn on my side (the affected hip) and sleep. That was one sign I knew it was getting better.
At the worst of my pain, I was taking about 14 Norco pills a day (3-325); two pills about every 2.5 hours. Yes, that's a very toxic dose, and I hate to admit to that, but I made my doctor fully aware of it, and, of course, he was concerned. I was concerned. At that point, however, I would have gladly exchanged the relief of pain for an addiction that I knew I would overcome, if need be. The pain was just that bad, and I didn't care about becoming dependent on a drug if it would stop the wretched, horrible pain. Over the last several months I have reduced the intake down to 4 a day, which I think is now acceptable. I plan to reduce that to zero very soon. I can tell that my body used to be somewhat dependent as I would occasionally have watery eyes and sniffles that can be attributed to a hydrocodone dependence. I am happy, though, that I am finally phasing this medication out of my life.
Hi RavenRose,
I also developed bursitis in my right arm from straining it holding onto a shelf trying to get into the shower. (Not to mention strained quad muscles on my right leg from the extra weight lifting myself from sitting). This was the least of my worries at the time, but my ortho doctor gave me a cortisone shot and the pain was relieved.
Your body is simply not prepared for the weight shifts and compensations you're going through just to get through simple everyday physical activities.
In fact, my ortho doctor was delighted when I went in with the shoulder/arm bursitis. He said, "Finally, something I can fix."
Hi Alexa,
Thanks for the reply.
What you say is almost identical to what I have been experiencing. I understand the severity of the pain you're talking about. No one else seems to get it, even the doctors. During the first month it was so bad that I was in a panic and there was no relief, even the meds weren't handling it. I'm glad you weren't affected by taking so many though, that was quite a bit. I understand though because I was at a point were it didn't really matter what would happen....just stop the pain.
Reading your posts is bringing a lot of (bad) memories back to me :)
Regarding pain relievers: I escalated the pain meds based on need. Tylenol -> Aleve -> Codeine -> Vicodin. I only reached the top of the ladder during a few periods. I'd say mostly I was in the Tylenol/Aleve pain level (I was still in a lot of pain but I was just coping with it as best I could). No problem stopping them. I'm sure I was taking a dosage that was toxic at times and talked to my doctor about it. He wasn't concerned as long as it was short term.
Sleeping...ah yes...it was impossible to get comfortable. I have a bad back and have to sleep on my side. When my knees were affected I had to scissor my legs or put a pillow between them. There was nothing pleasant about sleeping.
During the second bout I was moving to San Francisco and was living on my sailboat. The showers were about 1/4 mile walk from the boat. Every morning was an ordeal to get to the showers...I had to stop frequently and recover from the pain. When I got to the shower I couldn't get my leg over the shower pan! Getting groceries was a similar ordeal...I remember sitting on park bench with a bag of groceries thinking I was stuck and couldn't make it back to the boat! They weren't "full" bags of course...just a bit of food to get by a few days. I thought "someday I'm going to walk from the boat to the store and think what a short distance!" That day eventually came.
I was fairly active throughout the 18 months...never missed a day of work and traveled for work and pleasure...the thing that was most irritating was all the able-bodied people shoving you around on the street. I now have an appreciation for people using canes, crutches and wheelchairs.
Best wishes. DaveCat
@DaveCat: What you say is absolutely true. I was amazed at the intolerance and rudeness displayed to people with disabilities using any form of physical aid. On the very rare occasions I would venture out by myself, I had doors slammed in my face, jostled, given the stink eye, etc., etc. I even mentioned this to my doctor. I remember one event where I was on crutches, a back brace and, of course, medication. I only went out when I absolutely had to, but on this day it was a must. I had a disability sticker and used a handicap space in front of a store. After I had returned to my car, loaded the crutches in the back, felt my way along the side of the car to get back in, and sat there for a minute just to regain my strength, I had an older man come up to my car, stand there and just glare at me through the windshield. He just stood there and shook his head, left my car and glared at me the entire way into the store. I just burst into tears.
I have no idea how people with chronic disabilities put up with this. It is cruel and despicable treatment. I also now have a true appreciation of those with physical challenges.
Hi Alexa, this is a topic that really infuriates me!!! Is it possible the man didn't see the back brace, crutches... you limping around the car??? I'm only playing devils advocate here, because I've seen this first hand with my husband. I know how much this hurts and have experienced it many times, and it actually turns into shouting matches, but I refuse to do it anymore.
My husband is substantially disabled and if you were to see him you'd have no doubt of that, and we have to use disability parking spaces because he literally can't walk very far. Just far enough to get the electric cart. However, we still have to deal with this!! He can't drive, so I do all of it, and often deal with the wrath of others. My husband no longer lets any of this bother him, and frankly I don't know how he does it. Since I drop him off and wait, people see me sitting and waiting for him and ask about my parking in the space. Now I just ignore them!!! When my husband arrives, via electric cart, and they see how difficult it is for him to walk, they usually feel bad and offer an apology, but not always.
I feel for you, and hope you won't have to use the disability parking much longer. You certainly deserve to use it and NO ONE should chastise you! Stand up for yourself, and I bet it won't happen as often.
Take Care
Hi Pam,
Yes, it is very possible that the man did not see what I had gone through to get into the car. The crutches were in the back and I had taken down my disability sticker because it blocks my vision when driving. I was simply trying to catch my breath and had been sitting there a minute or two. I will give him the benefit of the doubt on that one, but it was still uncalled for and it hurt.
My heart goes out to you and your husband with what you have to deal with. I can somewhat understand the attitude with all the people who "borrow" disability stickers and are truly able-bodied. But still, it is so heartbreaking to truly experience what you deal with on a daily basis. I am so glad to hear your husband has developed a shell against these attitudes. My hat is off to you.
Hi Alexa,
My hat's off to you too! I just hope you don't have to deal with this type of insensitivity anymore.
My husband frequently sees me getting upset about the rudeness he endures and asks: Why are you so upset? Who cares what someone thinks! I don't know how he does it, I truly don't, but am glad he can see the world that way. I suppose it's because he doesn't see a lot of it, that I do, the long, long stares at his braces/orthotic shoes, the kind of stares that you think take a pix why don't you it'll last longer...But then that reminds me of my thinking in grammar school, and I hope I've evolved since then 
I sure hope you are better soon, and never have to deal with this stuff ever again!!!!
Take Care and have a great Sunday!
Yes it's so sad what people with disabilities have to put up with. I never noticed (and sadly I may have been one of those shovers...not because I was mean...I just wasn't paying attention) which is sad. All able bodied people should spend a day in a wheelchair just to see what the experience is like. Different topic than TO but it really opened my eyes. Even things like where the curb cutouts are placed. It was insane...the cutouts never match...they're offset by 20 feet making the disabled have to cut through pedestrian traffic. I may not be explaining that right but all the little things like the snake-lines that put everyone in single-file and switches back and forth and back and forth...with no allowance for the disabled.
There were happy stories too. I went out too soon without my cane. Half-way to PT my knee buckled in the middle of a busy street. I was paralyzed in pain. A kind woman helped me to the curb where I braced myself against a newspaper vending machine. Then it started to rain! I eventually got a cab to take me to PT where they came out and carried me out of the cab. The therapist dropped everything and spent almost an hour trying to calm down the pain. The woman who helped me, the cabby and the therapist were my heroes that day.
The odd thing is you look "normal" when you're dressed. So people think you're faking it. Alexa, I'm so sorry to hear about your story. I think we can only hope to be more compassionate to others and educate our family and friends.
- DaveCat
DaveCat, that's a very uplifting story....thank you. Your angels were looking out for you that day.
I did not mean to be such a Debbie Downer with my tales of woe. There are good people in this world. I also had a good experience. A friend had dropped me off at the ortho's office at the front with two big double doors when I was on crutches. She drove off to park the car, and it started raining. A gentleman, who had to be in his 80's, got out of his car with his disabled wife, walked (or hobbled, I should say) halfway across the parking lot and opened the doors for me. He said he didn't like seeing me standing in the rain. I almost cried at this thoughtful gesture.
Having this certainly does change your perspective. Seeing the challenges that people with disabilities have to go through on a daily basis, just to do the things everyone else does by rote is a lesson in humanity, for sure.
The few times I had gone to the clinic since this began, I also noticed how things aren't set up for the disabled, even in a health care facility. There was a wheelchair accessible bathroom, the problem was that a wheelchair didn't fit in it unless the door was left open. There were other things I encountered and when I'm better I plan to give them a bucket list on some adjustments that need to be made.
RavenRose, I agree how sad it is to see that most handicap allowances don't work. Please make yourself heard about this when you can! You have no idea how much power you have until you use it. I'm sure you've done this before, but please do it again.
Have a great Sunday and I hope your pain levels are lower today.
I found this website/pdf to be somewhat basic but informative. http://www.acta-ortho.gr/v603/04.pdf
Their theory on the involvement of pregnant women seems to be more generated to vascular impingement. Having a job where I sit a lot I have wondered whether this could be a factor, as well 
.
@RavenRose: Thank you for posting the link to that article. In all the months I researched this condition, that one article was the most informative I found. I would take copies of everything I found on the Internet to my doctor and would usually get the deer-in-the-headlights look when I did, but I was simply trying to be pro-active. He admits that there is very little in the literature and not much research to go on. That will be very helpful to others who are looking for anything regarding this condition.
Your welcome, Alexa. I'm glad you found it helpful.
I know what you mean about the doctors, luckly the rheumotologist I'm seeing knew what this was as he researches these things but I got the feeling when I spoke with him on the phone last Tuesday after he met with my ortho doc and the physician who read my MRI that they were not necessarily in agreement with him probably because this isn't something familiar to them.
I've read some speculation on here about possible causes. I agree that women may be affected as often as men...but the diagnosis gets missed.
A co-worker (male) had almost identical symptoms at age 39...it affected both his knees (not at the same time). It was left a medical mystery. His rheumatologist diagnosed it as gout...but his medical doctor vehemently disagreed with that. He now thinks he had undiagnosed TMO.
I was under a lot of stress...Alexa and others have reinforced that. I was also vigorously exercising for the first time in a long time. The first symptom I noticed was stiffness in my knee. I immediately connected that to the jogging I was doing...so a diagnosis of "stress fracture" was not unexpected. The other joints...I have nothing to correlate anything to. I just went for a long walk when the left knee was noticeably sore.
After tons of tests, the only suspicious things that came up for me was low-normal testosterone and the fluid taken off my knee had a lot of calcium crystals in it (but not to the threshold of pseudogout).
Thanks. DaveCat
Here's a list of what worked for me:
* Cortisone Joint Injection (knees only) -- it significantly and almost immediately decreased the pain in my knee.
* Physical Therapy -- even if you can't walk you need to keep up your strength in the unaffected limbs. Also, you need to crawl before you can walk...PT helps you rebuild strength in your legs before you are full-out walking again.
* Massage and Joint Manipulation -- the muscle atrophy caused cramping and pain in my legs and feet. The manipulation helped me retain full range of motion.
* Fluid Drainage -- I had the fluid removed from my knee once. I can't say this had any positive or negative impact on the disease.
Other treatment options that I am aware of but I chose not to pursue:
* Bisphonates -- they inhibit bone loss.
-- I chose not to take these for 3 reasons: 1) possible negative side-effects; 2) they also inhibit bone repair...because TO is "transient" there is a lot of re-building to be done and 3) case studies that recommended this treatment had recovery results no different from people who did nothing.
* Calcitonin -- inhibits calcium absorption (and bone mineral loss).
-- I probably would have tried this...Paul experienced negative side effects from this drug. It wasn't available in the US (and may still not be). Similar to bisphosphonates but this drug only inhibits bone mineral (calcium) loss.
* Surgery -- core decompression relieves the pressure in the bone and pain.
-- I chose not to have this procedure done because: 1) it was invasive; 2) negative side-effects included bone death, fracture, infection and/or death and 3) overall recovery time was longer than people who did nothing.
* Vascular-dialators -- some patients in the UK were given powerful drugs to improve blood flow in/out of the bones (relieving the negative pressure).
-- I didn't really consider these because there were severe risks associated with the treatment and they were only recommended if the patient was "stuck" and not showing signs of recovery. Not all patients showed improvement and it was difficult to say if the improvement was from the treatment itself or would have occurred naturally...that is, not all patients saw improvement.
I followed a very conservative treatment strategy. It's very hard to do...even your doctor will want to "do something".
Please let me know if anyone has questions about the treatment options. If there is an interest in something I'll see if I can find the original case studies (it's all on the Internet btw).
Best wishes. DaveCat
Hi Dave, how long ago did your experience with this start- I'm sure you mentioned that but can't find it? The reason I ask, is that Calcitonin, although something I haven't tried, has been available in the states as a nasal spray and injection for a very long time.
I haven't read too much positive about it, except that I've talked to those who say it helps with the pain. The injectable Calcitonin was FDA approved in: 1991 and the Calcitonin nasal spray in: 1995. It's not considered a first-line of defense for osteoporosis treatment, and then we aren't talking about traditional osteoporosis either.
This could be an option if you were looking for pain relief, but the side effects on the resorption of bone, may not be what you'd want to look for, but it does inhibit osteoclast activity. It's never been considered a first line of defense as far as antiresorptives go, but I actually looked into it for pain relief, but never tried it, in the end. Chart on all osteo meds.
You must do what you think is best for you, and we all will have varying reactions to these meds, so do your research on any thing you might consider.
Have a wonderful evening all!
Pam,
I wish you were around when I was going though this! (12/2009-6/2011) You are right of course about Calcitonin...and sadly with this disease you have to do your own doctoring (which is sometimes OK...and mostly better than your own doctor :). When I researched anti-osteoporosis drugs I got the availability of Calcitonin wrong...it's the only drug I didn't discuss with my doctor...because I *thought* it wasn't available here. Probably worked out for the best anyway, because I really would have given it a try from what I read about it at the time...and Paul had a bad time with it.
Yes...treatment is up to you...I'm not recommending anyone do what I did (or not to try things that you think might help...and possibly shed light on the cause). The list above is everything I read on the Internet about BME/TO treatments, and what I ultimately chose for myself.
My strong opinion is though, that your outcome will be the same with conservative treatment...and without extra side-effects and complications.
Thanks. Dave
My therapist really went at my speed...so there were times when all I did was electrical stim, ice, massage and/or manipulation.
Here are the exercises I did (described as best as I can):
Stationary bike with no load (just motion)
Straight leg raises (lying down and on my side)
Single leg presses (when I was improving)
Bridges (raising your butt while lying down)
Pilates (core and balance exercises...very low/no weight)
Step up/down
Balance (stand on a rubbery block...two leg and one leg)
Band exercises...the bands were various elastic strengths
Loads were added as I improved.
The therapist also manipulated the joint...slowly testing the range of motion and pushing my limits. This turned out to be very important. I discovered that if range of motion was maintained from the start, I kept 90% of it by the end...and 100% was soon reached again after recovery. This was also the most uncomfortable thing the therapist did.
Once I got "better" and PT was no longer justified, I got a trainer at a high-end gym who was a former PT. She took the PT regimen I had been on and moved up from there. At that point we tried aquatic physical therapy but I was too much better by that point (I think this would have helped earlier though).
As the disease had it's attacks and remissions, I went from nothing (knee) to PT (hip) to gym back to PT (knee-knee) and back to gym again.
I hope this helps. Remember that I couldn't do all of the exercises at all times...the therapist I had was great. I did as much as I could do with each session (2x week). I was supposed to do exercises at home too, but I wasn't too successful with that.
Thanks. DaveCat
Thanks Dave,
Your posts are always so detailed and rife with good, solid information. Much appreciated! I think I will wait for my MRI results on April 4th, if there is no sign of fracture I will start a program at home and then with a therapist.
If I may ask, how long from onset of your hip pain did you begin?
Thanks...
PT wasn't ideal with the hip because it started pre-diagnosis. I had the knee issue first...that was chalked up to a "stress fracture" and left at that. I was feeling much better (months later) and starting to do stairs and things. I went bowling and noticed pain in my hip. 2 weeks later I had trouble getting off a plane. I was stranded in Denver (missed connection)...in the morning I couldn't bear any weight. I took a cab to the airport...to a wheel chair to the plane...wheel chair after landing to a taxi to the ER.
The doctor in the ER laughed at me when I said the hip had "the same thing that was going on in my knee." He lectured me on how impossible it was to have two stress fractures in the same leg...and I believed him. I thought it was muscle pull at that point. He prescribed PT, a strong NSAID, cane/crutches as needed and said if it didn't get better in a month to go to a regular doctor.
I didn't last a week...I had just moved so I got a primary care doctor in SF. He sent me immediately to the ortho. An MRI confirmed another stress fracture...or "early AVN". My MRI films from Milwaukee arrived and a few weeks after that we had a diagnosis of MTO.
Sorry that's a long answer to a simple question...I had started the PT almost immediately (2 weeks in)...but we *didn't know* I had an underlying stress fracture of the hip yet. The therapist at that time said they don't treat the cause...they deal with the symptoms...so it didn't matter what was wrong, the treatment would be the same. That's what she said at first...but there were several instances where I had bone pain after PT or from walking around (shin-splints for example) and she completely freaked out...making me stop everything immediately.
So...I think you should go now, but realize you may only be getting maintenance treatment...massage to prevent the cramping of your muscles, exercises to keep your good leg working and manipulation to maintain range of motion (as pain allows).
Another thing that was good about PT was having a professional giving you hope and inspiration 2x a week. I saw my doctors much, much less frequently. It was very good to have the routine...to go somewhere...you can start to see progress...and you have someone you discuss issues with who understands anatomy.
Sorry it's like taking a drink out of firehose when anyone asks me anything! :)
Best wishes, DaveCat
Hi DaveCat,
The progression of my symptoms and experiences were much like yours. I began with escalating pain in my left knee in late October, one month later MRI diagnosis of subchondral fracture (Dr. said it was like a dent of the femur in the joint). The pain and swelling were excessive for the injury due to bone edema. The outside knee area was also affected. My doctor aspirated it and gave me a cortisone shot which might have helped had I not slipped and hurt it an hour after the shot.
Two months later at the very beginning of January pain began in my left hip, it increased over the the following weeks to unbearable levels. I went to the ER to make sure it wasn't fractured although I had done nothing to cause a major fracture. The ER doc took x-rays and said no major broken bones and said he thought I had a sciatic problem and to maybe see a chiropractor (can only imagine what would have happened if I had done that). Having had a sciatic nerve problem before I knew that wasn't right. I called my ortho doc for more meds they said we should finish up on the knee before going on to the hip. I told them that couldn't tolerate the pain, they said come in for an MRI. I got the results of the MRI one month into it-he termed it an insufficiency fracture at the subcortical aspect of the femoral head along with edema seen throughout the interochanteric left femur, femoral neck and head, joint effusion, and edema throughout the soft tissues. The doctor was very concerned because it was highly unusual to have two stress fractures at the same time along with such a plethora of bone swellings, especially when I was on limited weight bearing for my knee. He actually used the word "YUK" to describe it. He referred me to the rheumatologist. My appointment there was at just the right time to reveal a 32% bone loss in my femur compared to my other bones which were near normal levels.
I am most impressed with your independence during your illness and recovery. I would not, still could not, be able to be as mobile as you were. I hope it gone for good, for you! Thanks again for all your advice and descriptives, this whole thread had really helped.
Oy! yes, that all sounds so familiar. I'm sending you a virtual (hug)!
For both of us it took a long time to get to any diagnosis. It seems the medical establish moves with lightning speed to diagnose most everything else...but bone and joint problems move at a snail's pace. A friend has been incapacitated for a month and just got a diagnosis of a torn meniscus. Another month just to hear if surgery is recommended.
I wasn't as mobile as it sounds! I had days working from home, major pain meds and assisted walking (W/C, cane and crutches). I got around independently just because I had no help and didn't want to lose my job or starve! I had a system for getting in and out of the boat on one leg! You get very creative...
Hang in there...think of it this way...you're getting new bones/joints! Your body is rebuilding itself (never mind that it is doing so in the most painful and protracted way). If you need someone to talk to (anyone btw) send me a private note.
DaveCat
There was a point in time where my doctor had stated to me that "he thought he was going to have to pull the trigger on me." This meant a hip replacement. I was at the height of the pain curve, totally miserable, and just about ready to do anything to relieve the agony of it all. I was totally frustrated and he was frustrated at my desperation. My instincts told me, though, to just hang in there a little while longer. I am very glad I did, as the recovery actually does take place.
I also opted not to pursue the alternative treatments as DaveCat outlined since the recovery time seemed to be the same with or without.
To sum it up, this condition heals and recovers on its own time schedule. Patience and acceptance is one key to surviving the long haul.
In the meantime, clear your psyche of all negativity and feed your mind with good, solid, positive books, experiences, and people. I was able to read authors I had been putting off and some of the books I read were life-altering. I had to learn it was okay to be good to myself, become a little self-centered, rehab my entire mental and emotional well-being, and I now feel like I am emerging from this a much better person. I hope your personal journey gets you to this point very soon.
Hi Paul,
That is very good news regarding your affected hip! I pray that the worst is over and you're on the mend. That's very encouraging. Somewhere I read that there is a 40% chance of migration, so I chose to believe I would be in the 60% group.
Don't get discouraged, though, if the 2 to 3 bounces up to 5 or 6 and back down again. I had a lot of "teasing" along the way until I reached this level of recovery.
One of the best books I read on healing affirmations is "The Dynamic Laws of Prosperity" by Catherine Ponder. The title sounds like it's about financial success, but it's really about manifesting all good things in your life, healing included. I began practicing the affirmations daily and saw some very interesting things happen, all for my highest good. It really was amazing. If you're interested, you can check out the book and read the reviews on Amazon.com.
Please keep posting your good results! It's helping us all very much.
Paul,
I'm glad to hear you're doing better...yes, you are on the mend...as Alexa states, you'll have days that will tease you into thinking you've taken a step backward. Also, every little ache and pain will seem like a sign it's migrating. You'll know it when it migrates! There will be no doubt about it. Just like you're hip, the pain will be so severe you won't be able to walk. The muscle atrophy can cause a lot of aches and pains that aren't a sign of anything new developing.
I was sure my left hip would be involved...and I had several very embarassing predictions that never came to pass (thankfully!). From start of pain to immobilization was days to 4 weeks. I had about 1-3 months clear between each attack. The largest rest was between right and left leg. Rt knee 1/2010, rt hip 5/2010, left knee inside condyle 11/2010, left knee outside condyle 3/2011. The hip was the worst and longest. I'm sure everyone is different with this disease but that nicely tallied up to 18 months.
Sadly it was a rare day I experienced any kindness here (perhaps it's a US thing). I now recall museum security calling the police because I sat down on a bench in an exhibit to give my arms a rest (from the crutches) and I refused to get up. I was sitting at the exit to the exhibit and that wasn't allowed. I was also waiting for family members to get through the exhibit and the only place to go was to balance on my crutches in the gift store they force you to walk through at the end of the exhibit. I "ran" out of the exhibit back into the museum and found a stall to hide in and cry until it was clear for me to leave (and yes, I passed the police who were on their way to "get" me). I thought I should have just stayed and gotten hauled out by my collar.
Thanks. DaveCat
On the subject of recurrence, I was going to add this earlier but didn't want to muddle things, I think it is pertinent though and I'll try to make a too long of a story short.
Three years ago, at this very time of the year I went out to feed the birds, the ground was frozen and lumpy. My ankle started to hurt, I didn't remember twisting it but must have. I was unable to do my treadmill that morning. The ankle gradually worsened until I was unable to walk on it. At 6 weeks I went in and got an MRI which revealed bone swelling and nothing else. The doctor gave it little consideration and treated it like a sprain or break over the next 9 months with treatments like a walking boot, a ridiculous handmade brace, and a plaster cast all of which made it worse, the last I actually tore a tendon because my muscles were so gone by then. Finally, she sent me to PT which helped a lot but it was a slow process of two and a half years. There was never any diagnosis for this...until now.
It was a "eureka" moment last week when my rheumotologist diagnosed TMO as the cause of my hip and knee, but mostly because it was obvious that that was also the cause of my ankle pain three years before, that still carried a big question mark. Prior to the ankle injury, I was extremely active and remember thinking a week before that I felt better than I ever had, talk about tempting fate.
Also, for Paul, my other hip has been feeling similar as well, and I'm sure there is some bone swelling, but the density test was good for it and so I'm hoping yours gets better without incident. I'm kind of following in your footsteps here. Just wanted to let you know that recurrence may be down the road but...hmmm...why borrow trouble?
Paul... I sure hope this "isn't" migrating! Maybe the pain is referred from having to protect the other hip? Like an over-use kind of injury/pain. Do ya think? I just hope this doesn't mean the other hip is now affected. Do whatever you need to, to protect this other hip.
Please be careful and do all the things you've learned to do to protect your leg/hip etc. Keep us posted-okay? Keeping my fingers crossed this isn't a sign of additional problems!
Take Care!!
Hey you guys...Love ALL the pictures! Glad you uploaded them.
Hi Paul...now don't get mad at me but...how bout this http://www.youtube.com/watch?v=mN7Xs9WVNBU
Beach Boy's I Get Around.
Seems apropos...love the way we danced back then Seems pretty simple bouncing and slapping legs!
Paul, you're not having a good day, and I am so sorry. Your description today mimics what I went through at some point. I honestly thought my unaffected hip was getting affected and I felt the same sensation you describe. I remember just sitting down in a heap with my head in my hands thinking I couldn't go through this again. The good news is that it went away the following day.
One of the things I learned recently during chiropractic therapy was that all of your muscles, ligaments, and tendons are tightening up on you during this process. They specifically concentrated on the major tendons running down the front of the thigh and the buttocks area. I remember they worked on the piriformis muscle, and in fact, I received five shots to help loosen it up. When I first walked in, they told me that my back was completely locked up and it took several weeks to loosen things up. Things were so tight I could feel the tendons/ligaments snapping at times, and it was also painful.
From a layman's point of view, I'm just wondering if your ligaments and tendons are causing this current distress. The range of pain sensations during recovery covered the gamut, and I never knew what to expect from one day to another. And DaveCat is right, every little twinge is going to be meaningful, and we tend to read more into it sometimes than is there. But there is no denying a pain scale of 5 to 6.
I was also admonished by my doctor for doing too much. He would ask me what my activity level was and when I told him he would tell me I was doing more than I should. (And this was very little activity) Sometimes I would pay for over-activity the following day.
As far as the rash, that's a new one. I did not experience a rash.
Hi The Process! I was just wondering how you're doing, and if you had an particular regime you did for rehab after your problems with this disorder.
If you have time, and can share with us that would be great! Thanks again for joining us; I think we've all learned a lot from each other and I hope that can continue even if some of you are well past this.
Hoping you are doing well and that you have time to jump back in again!
Pam
I am wondering if any of you who have had this had experienced any major spasms in the upper thigh. When I wake up on occassion I have one where my (hamstring???) muscle seems to stretch itself out, a rather uncomfortable feeling. Maybe this is from sleeping on my back as I still cannot sleep on my side.
Yes, I had muscle spasms and cramping, particularly at night. Both over-use and sedentary activity will cause problems. I had bottled water brought in by the case and drank it day and night for the electrolytes. I also increased my intake of magnesium. I'm not a fan of bananas, but would eat those for the phosphorous. This routine relieved the spasms/cramping.
This condition is like the gift that keeps on giving. You never know what new pain or sensation is going to pop up. It's a series of, "What the heck is this?" It's a nice variety of referred pain and weird attacks of odd feelings/pain.
Do you have any food cravings? All I wanted to eat was lettuce and fruit. It was a good way to drop 20 pounds, but I found the cravings interesting.
Hi Alexa,
I haven't had any food cravings, in fact just the opposite. My appetite is completely gone...I think it is from the Vicodin. Nothing tastes right, everything is bland. Can't wait until I can stop taking this stuff. Having cravings for "good" types of food is great, your lucky is wasn't for pasta or steak.
Hey RavenRose, have you ever tried MG gel or topical apps for the muscle spasms? I get these all the time and have trouble with some of the oral MG caplets/tablets, and don't always have food high in MG to eat when this happens. The other problem is it seems food high in MG, takes a while to build up and work for me, plus it doesn't absorb well.
Here's the MG gel I use from Ancient Minerals. Watch the video from Dr. Sircus, very interesting, and explains why we can't absorb MG very easily orally. It comes in oil, gel, lotion, spray and bath flakes. It's a little pricey, so look around for others that may be less expensive. Also, using epsom salts works well too-loaded with MG. If you can do a foot bath with epsom, you'll absorb enough MG to help with the spasms. Also, it's a nice foot bath, makes your skin soft and takes away the pain/spasms. I sometimes use it while at the computer too. If you can use epsom in your bath, which I would think is next to impossible right now, because it would be so hard for you to get into it and sit on the tub floor; it will help too when you're better and up to getting in a tub again.
Also, here's a good site that lists all foods high in MG. I like this particular site (NutritionData) the best for looking up nutrient and micronutrient etc., content in foods. It's also great for looking up calories, high sugar foods, and whatever you want to look up in foods. The best site for this type of food info I've ever found. Check it out.
Have a great weekend and St. Patty's Day! Hope your pain has lessened some, and I wouldn't worry about how long you'll be on the pain meds. I'm sure you'll stop them when you can. Also, have you ever tried Cymbalta (SNRI) or Lryica etc? I used the Cymbalta for pain, but it's also rx'd for depression associated with pain. I tried Neurontin, but I'm EXTREMELY allergic to it and it's now on my med file as a serious red flag! Some people can take this for pain, but I have controlled glaucoma and it really messed up my vision, balance and made my hands, feet, and arms completely numb. It also made me incredibly dizzy and have double vision too. Not good right after complex spine surgery!
Take Care!
Thank you for the replies, all. Hope you're having sweet dreams, Paul.
Yes, the pains with this are whacky, all different types at one time. At the worst of it, that was one thing I noticed that there were so many different areas that each had their own severe pain at the same time. The worst was the burning pain (that has now mostly left as of this week) on the side and groin area, it literally felt like something was shredding the tissues inside, and it was constant.
Thank you, also, for the advise on the cramps and spasms.
I read your interview, Pam. Very informative, albeit scary, that something that severe can happen out of the blue. This is why I hesitate to take medications for this. It seems that there have been quite a few instances where the meds actually cause more damage, which they don't find out before it affects a lot of people.
Happy St. Patty's Day to all. We're having the craziest weather here. We should be knee deep in snow right now but we actually have the air conditioner on. Record breaking heat. I want to go outside and play! Oh well....
Hi All...Just wanted to say Happy St. Patty's Day to you all and hope your weekend is great!
I know you guys aren't taking BPs, but I thought you might like to read Dr. Jennifer Schneider's interview on atypical femur fraxs. Luckily your problems don't stem from taking these meds, but the similarities in fraxs and avn is quite astonishing.
Dr. Schneider also has a group for these types of fraxs and I was hoping some of them might stop by.
Have a great weekend with much reduced pain levels!!!! Keep smiling-okay?
Hi Pam,
Just wanted to say Happy St. Patrick's Day to you and your family also! Also wanted to thank you for keeping this thread up. There have been some really good posts and information, and I am sure it will be helpful to lots of people.
I sincerely hope you are doing better with your condition. If you feel like it, can you share what your status is and how you're doing? You've been so generous with others, and I'm sure everyone would love to know how you're doing.
Hi Alexa, you're very welcome and it's been my pleasure doing this interview with Paul and getting to speak to you all!
I've been interested in TO/TMO for many years and have done a ton of research on it, so the opportunity to write about it has been a God send for me with my interest in it.
We're doing okay, but actually preparing for what the news is calling a major storm. Frankly, I don't see the signs of it yet, but they are passing out sand bags and we're expecting snow, of all things, tomorrow. I'm not sure we'll actually see the snow, but if so, it will be a welcome change for us.
Our flowers have no idea what to do since it warms up-blooming point-then freezes again so I hope we don't have to start over with the Spring prep.
Thanks again to all of you for joining us and sharing such important info! You have no idea how wonderful this is and how grateful we are!
I hope you are doing well, and would love to hear more about your job someday. It sounds so very interesting and something I considered, but never went any further with it.
Hi Pam,
I hope you all have "weathered" the weekend okay with the threat of snow and other extreme predictions. We're having a beautiful weekend here in North Carolina, and flowers are blooming.
I was thinking about this time last year when I was about to go on crutches. Those days now seem like a lifetime ago, but was thinking about the creative ways you have to come up with to get through everyday activities. At that time was the "stinging," burning and throbbing pain in the hip and about 5 to 6 inches down the top of the femur.
My everyday attire consisted of a T-shirt tucked into elastic-waist pants which I found very effective in carrying a thermal coffee mug (sealed, of course) while traveling on crutches. Simply slip this inside the shirt and, voila, you're ready to roll. It's amazing what you can carry down the front of your shirt. I did this with paperwork, books, etc. They make "crutch vests," but I found the T-shirt tucked into your pants just as effective.
Since the microwave was my best friend, a plastic grocery bag with handles would nicely hold a round plastic Tupperware container of food that you could carry with one hand and still grasp the crutch.
I also wanted to mention that BioFreeze was extremely effective on my muscle sprains/strains in my arm. That seemed to help more than the medication.
Have a good week everyone.....
Hi Alexa, wow those are great ideas for people using crutches! It's amazing how ingenious we become when we're limited by movement!
I'm sure everyone reading this can use these suggestions, if they're using crutches, or say with something like shoulder surgery, where you can only use one arm and hand.
The storm let up some but we're still expecting another round of heavy winds and rain. We received a precautionary emergency warning from the NWS, about the winds, so I'm making sure I keep an eye on the roof, trees, windows etc.
I hope you are enjoying the warming trend! The weather across the U.S. is really unusual right now.
If you can think of any more helpful hints on getting around with crutches, please let us know!
Have a great day!
Hi Pam,
If you are doing any research on this condition you may find this information I received from my doctor helpful.
1) First, he reaffirmed his diagnosis as transient regional osteoporosis (TRO), it's funny how many abbreviations there seem to be with this disorder.
2) They did extensive lab tests and every one was normal, this has discounted the possibility of systemic disease, cancers, and organ related contributors.
3) His treatment remains that there should be no weight bearing until all the pain is gone and one month after that. He warns of the probability of a bad fracture if I put weight on it before the new bone grows back.
4) MRI scheduled for April 17th to see if there is any degeneration of the femoral head which would indicate AVN, reduced or further fracture, and general progress.
I thought this info might be intrinsic as I have read in studies that there were no indications that other patients had any other diseases which were related.
RR, thanks so much! I can use all the help I can get on this. I guess I'm stuck with the TMO acronym, but at least we all know what we're referring to regardless of the abbreviation.
If you run across any more articles, besides the one you already posted and the one I linked to in the interview, let me know-okay?
Thanks again!
Hi Alexa, I forgot to mention I love bio-freeze and have a ton of it. I also use lidoderm patches, when we can afford it (lidocaine patch you wear for 12 hours). There's also Flector patches which are a topical NSAID, but I can't use NSAIDs too much because the orals cause internal bleeding for me.
Tens units, ice, heat they all help and I can't be without my ThermaCare heat wraps at nights or on high pain level days. Oh, I occasionally use compounded topical cream from a compounding pharmacy that has lidocaine and NSAIDs which can be included as well. The amounts of ingredients depend on your Dr's order. The only problem with these is you can only apply it twice a day and the pain relief is very superficial, so if your pain is deep, it may not work really well but it does some. As far as sleep goes, if I can get 2 hours without the pain waking me I'm doing well.
You can get a ThermaCare heat wrap coupon here on our home page, if you need one for $3.00 off.
Take Care and hope your evening is nice and you have something enjoyable to do!
Pam, amazingly the Lidoderm patches work extremely well for me. This lovely lady I met recently in PT gave me a couple of packets because she said they didn't work well for her, and I was shocked at how well they worked, and this was on the deep back pain also. That was the first thing I asked my doctor for last week, and he kindly wrote a prescription. Unfortunately I'm still waiting on insurance approval and it doesn't look like it's going to come through. It may be just as well because they are expensive.
Thanks for sharing the spoon theory article. I hit the bookmark button by the fifth paragraph. What a great article, and I have already sent it to a friend who suffers chronic pain. I know she will very much appreciate it also.
The garden rocker is also a great tip! I really hope you find some pleasure in your garden this spring, but please do watch those close calls. I had one this afternoon, so I know what you're talking about.
I hope your evening is good and I wish you a great night's sleep tonight! Thanks for all you do.
Good Morning! Alexa and RavenRose mentioned sleep, and I was wondering if you guys can actually sleep, or does the pain wake you up?
I sure hope that your sleep isn't disturbed, but I was getting the impression that the intense pain wasn't resolving at night, and I wouldn't be surprised if some of you said it woke you frequently.
If you have time, let us know about this since I believe many would be curious. Hope your pain today is much lower!
Take Care all...
Hi Pam,
Yes, during the early phases of the condition and the escalating pain months, it was pain at night also that would wake you up every 3-4 hours. It was pretty much medication around the clock for a while. This lasted for a month or so, maybe a little longer. Everyone is different, but it was only the Norco that would help with the pain at night for me. As I got past the peak levels of the pain, having a full-night's sleep became a luxury.
I agree with everyone, the first month was so bad I think I have actually started to block it out. My doctor was not forthcoming with pain meds, I was only taking 1/2 of a Tylenol #3 (which is mild to begin with) every 5 hours for my knee and in too much pain to go to the doc for my hip. Finally, because they wouldn't extend my presciption ( I was so frugal with the little I had during the first 3 weeks, it was rather pathetic, the thought of running out was stressful to say the least), I went to the ER where I was given more pain meds, Vicondin, 5-325. I would sleep for maybe two hours, awaken from the pain and not be able to get back to sleep. I was falling asleep at all hours, sometimes I would wake up with a pen in my hand because I had just passed out whilst doing something. BAD MEMORIES, for sure.
At current, I am still sleeping on my back, no fun there. It takes me about 15 minutes just to adjust my pillows at the right angle-if I am too upright it affects my hip; too flat, it affects my back. Last week was a turning point for me as far as my pain level (10 weeks) and over the past few days have actually gotten 6-7 hours of sleep at night, waking occasionally, still meds around the clock. Right now I'm not waking up because of the pain, maybe just not comfortable. Can not wait to be able to turn on my side again, which I tried this morning...not yet. The Rheumatologist actually suggested I be more liberal with the meds and gave me a practically limitless amount.
I've been on this site for two weeks and in that time there has been dramatic changes so much for the better. When I first came here I was in tremendous pain, utterly depressed and sleep deprived to a point that tears would just spontaneously flow from my eyes and I would break down. This site has been helpful beyond words for me, as Paul said, the people close to you feel for you a lot but they have no real idea what you're going through. He, Alexa, and DaveCat have been amazing and upbeat, letting one see that there is a light at the end of the tunnel when you're sure there isn't, and of course, Pam for even featuring an article like this.
Fingers crossed for the MRI results, Paul.
RavenRose, your last posting brought tears to my eyes, and I even had to get up from the computer for a minute. (Not in a bad way, it's just emotional) I feel every word you wrote and have experienced every pain and discomfort you described. And you're right, this thread has been a Godsend for all of us.
Having had previous surgeries and in two car wrecks and several broken bones, the pain from this condition is so much worse than that, and it's hard for people to really understand. Though not their fault, I don't feel medical personnel even comprehend how intense this pain is. It's really beyond description as far as words. If there is one thing I would want the doctors to know, it's that nobody is exagerating their pain. Not one single bit.
Paul, I am so thrilled to hear you're down to one crutch! That's a wonderful milestone and very significant. Looking forward to hearing your MRI results.
I also wanted to share something I did this weekend. A few months ago when I would "crutch" to my outside deck, there was a tiny little seedling that sprouted in a neglected clay pot sitting just beside my chair. As it turned out, it was a beautiful little maple tree that actually grew leaves and blossomed right before my eyes. No water, no feeding and it thrived. I have watched this tiny little tree grow to three feet in all this recovery time. I decided this was a sign from God to let me know that my new life was beginning and flourishing.
I unearthed my symbolic "tree of life" and carried it to my front yard and actually dug a hole and transplanted it in a prominent place so I can see it every day. If someone had told me a few months ago I would be shoveling dirt on March 17, 2012, I would have thought they had lost their mind. But I love that little tree, and it's a beautiful reminder of how far I've come and what wonderful things may lie ahead.
Alexa, I love the part about the maple tree, that is very symbollic. A new beginning out of what are less than ideal conditions, and trees are strong. Wonderful! I hope it flourishes!
Paul, I hope you're having a great day, too. It's funny, when I try to explain to people what I have, I use the "little guys" thing...like a little construction crew in there. My husband has had to sleep in the spare room as well for both our sakes. He works and needs his sleep.
Nature is inspiring if you're open to it. I live in a very secluded place, I miss my walks especially now that Spring is here.
Hi RavenRose, I too love your story about the maple tree! How beautiful! One of the things that brings me the most joy and happiness is gardening. I love flowers, trees and anything that grows despite the forces that try to hamper their loveliness. However, since I can't bend from the hips or waist, I have many of the flowers in elevated or hanging pots. I've received so many good ideas from those with physical restrictions from pain on how to do this, so taking care of them doesn't do me in.
The flowers in the ground really only need pruning and ferterlizer, so I can do this with the shake on fertilizer and the roses are tall enough that pruning doesn't require any bending. I know most of you can't sit at all or for long, like me, but when you can a Garden Rocker works well. It's a chair that rocks forward when you lean in that direction so you aren't bending your spine at all. I still can use it, but hope to some day. I can't sit for more than 30- 45 minutes, so I have to really watch this. If I go beyond this time limit my si joint locks or becomes hypermobile and I lose my balance. Luckily I haven't fallen, but have had some close calls. The pain from SIJD is excruciating, so I think I understand what you all are going through. That's not my only pain generator so spontaneity is way of life I can no longer follow. You have to ask yourself how much you'll pay for all physical actions (ADLs) and do those sparingly. Have you heard of the Spoon Theory by Christine Miserandino? Thanks to Christine! If not the link explains this and describes my life and many others.
Take care and keep that tree thriving, just like you life.
Hi Paul so happy you're using only one crutch! What an achievement! Paws crossed that you get a good report from your MRI. Yes, our cat is now involved with all of you and sending her best of luck to you all.
Paul, how do you feel about the outcome of the MRI, do you have any instincts? I hope that it shows much improvement in the affected hip and the other is just going through over-use.
Is the weather warming up yet? I sure hope you can make it to your vacation, and I bet you can!
Keep us posted on what you find out on the MRI, we're all rooting for you! Totally understand the seperate beds situation, we've done that for a long time since we both have problems that keep one another awake. Hope you can get some undistrubed sleep! That's something I dream about.
Take Care!
Hi Paul,
What is this about having your legs tied together for 1.5 hours? I've been trying to figure that out since I read it. I have never heard of this.
I'll join you guys as a cat lover. I currently have two; Nicholas and Maverick. My dear little female, Alex, just passed away after 14 years. She was my computer kitty and slept next to me all day while I was working. I will miss her dearly. I've done my share of rescue work in the past, and all have either been abandoned or chucked out on the street. I find they are the most appreciative and loving pets.
Hi Paul...I was wondering the same thing Alexa is??? Legs tied for an hour and a half. I've had an MRI that took about an hour, where you couldn't move, but my legs weren't tied.
I hope your scan results are fantastic! I uploaded a couple of pictures of Mimi (our cat) on my home page. Just click the link on my name. Wow tonkinese! They are chatty cats! Like siamese and gorgeous! Our Mimi is a small tuxedo cat and keeps getting stuck in our cherry tree. I uploaded a pix of this, hope you all can see it. Would love to see your tokinese, when you have time. Not sure what I was thinking when I took the pix, she looks like she's about to crash. She made it down okay, with help... I have a scratched face to show for it. Can't climb the ladder anymore, too dangerous.
Whenever I hear the word tokinese I think of that song from South Pacific-Bali Hai...is calling...A trip to the South Pacific would be cool!
Hope you're feeling better and paws are still crossed about the trip, it sounds so wonderful. Wish someone would call me to tea!!!!!
I had totally forgotten about that part of the MRI procedure. When I had mine they were supposed to give me a sedative because of the pain and the fact that I am claustrophobic, when I got there they didn't have it and it was the night staff so he said either I do it without or come back, which wasn't an option, (15 miles in the cramped front seat of the car was a one-time thing to my reckoning). Finally, after gradually getting used to it, (the tech was wonderfully patient) I was in, then they tied my ankles and put something heavy over them to keep them positioned right. It took an half an hour, as they did both at once. Not looking forward to going through that again next month.
Yesterday was such a great and hopeful day for me, but this morning I woke up with more pain in both hips. To keep from boing too bummed, I did a lot of research on the condition and found some interesting things.
Paul, I am from Wisconsin, we are having summer-like weather, very strange as usually we would be having snow yet.
Hi Alexa, oh gosh I'm so sorry about Alex! 
That is so very hard to deal with. I'm glad you still have the other two, but losing a fur baby is so hard. I know what you mean about your computer kitty. They sure do like to be right next to you and involved with whatever it is that you do or enjoy.
The other day my husband was trying very hard to put in tree spikes (something he shouldn't even try) and Mimi just couldn't leave him alone. She just has to be in the middle of everything, but I know they're all like that.
I'll keep you in our thoughts and prayers that you grieving process isn't to overcoming, even though I know it is. Upload some pixs, if you want to. At least we will see what she looked like and know how loved she was.
Take care of the rest of those fur babes; as I know you will since I know how much they mean to you and us.
Hi Pam,
Thank you so much for your kind words about Alex. I know you realize how hard it is, and I thank you for expressing that.
Mimi is just flat adorable. I just want to reach through the computer and hug her! You can see what a sweet personality she is in her eyes. I know she is special.
I uploaded pictures of Alex (solid black) and Maverick (orange tabby) to my profile. Nicholas is camera shy, but looks just like the cat on the front of the Meow Mix bag.
Thanks all for letting us stray off topic with our sweet ones. :)
HI RavenRose, so sorry you had to go through that MRI without sedation! Being claustrophobic is a tough one with MRIs. Glad you got it behind you though. Good luck on the next one, and maybe you can check ahead of time to be sure whatever you need is available.
I'm sorry you had a bad pain day! It seems like this is typical with TMO. If you want to share any of the research you found please do! We'd all like to read it and you can post links, if you want to and feel up to it.
This weather is really strange and I have a friend in WI who is saying the same thing about the unseasonable warmth.
Take Care and I hope tomorrow is a better day for you!
Hi Paul, suppose it's really late there, but wanted to tell you how gorgeous Tia Maria is and those bunnies.
Sorry you had to endure what you did with the MRI, how horribly painful that must have been. Let us know what you find out from your Rheumy when you get the results of the latest MRI, if you want to. We're all pulling for you and hoping for the best possible outcome.
Have a great weekend and enjoy your flowers too!
Hi Alexa, thanks for the lovely description of Mimi. She can be a little devil though! She's got more energy than we can handle and I have to admit it's tough having a semi kitten at our ages. She keeps you on you toes though, chasing dogs, raccoons, and other cats.
Maverick and Alex are so adorable! Glad you uploaded the pixs! I bet they make your life so enjoyable.
I hope you are doing well and aren't having any lingering problems from TMO.
Have a great weekend, and thanks so much for all the wonderful support you have provided, you've been such a wonderful help to all, along with Dave and TheProcess! I don't know how we can ever thank you for giving of your time to help those going through TMO now.
Take Care!
Hi RavenRose,
Thank you for your kind words regarding Alex. That was very sweet of you.
I started getting the first twinges of pain in March of 2011, which escalated into the deep intense pain over the next few months, i.e., bedrest, crutches, etc., that we've all talked about. I started walking without an aid the last week of September, 2011. I didn't start real physical therapy until the first of January, 2012. Part of it because my orthopedic doctor was always concerned about my hip collapsing, and, of course, that was planted in my mind and I didn't even want to think about that happening.
The real reason I started PT was because of my back, but I can tell you that I have now finished PT and my recovery is rapidly accelerating. I should have started it sooner.
I don't know this for a fact, but you appear to be a lot younger than me, and I would think you could probably beat my recovery time by a lot. My hip is feeling almost back to normal. No pain unless I really over-do things physically now.
There has never been a case study I've read where someone's hip actually did collapse. My opinion is you should listen to your body as far as rebuilding, and I think you will know when you are ready. Being a Type A personality, I mentally always wanted to rush things along. I finally just came to accept the fact that it was going to take longer than I wanted it to. I know DaveCat started PT way sooner than I did, and I think his recovery was more rapid than mine.
How are you feeling, and what are your pain levels?
Thank you for replying, Alexa. So you began walking with out aids before you did any therapy. How your doctor know when the time was right for you to go to one crutch/cane. Were you completely pain free when you started weight-bearing?
Right now I have stopped having pain when I am sitting, If I sit for too long then it starts to hurt somewhat or sometimes I'll do nothing and it will hurt a bit. I am so afraid of fracture that I don't do much. The pain meds make me feel so awfully tired and queasy that I am trying to decrease down to 1/2 tablet every 5 hours.
I'm having a lot of confusion at what the doctors are saying to me. At first the radiologist said there was no major area of collapse, then he said there might be, after all (same MRI, not sure why he would change his mind). The article I read yesterday showed the differences between TMO and AVN. Clearly my MRI had all the signs of TMO and none of the signs of AVN. Then my Rheumy is trying to say that I have a rare genetic condition called osteogenesis imperfecta because the whites of my eyes are blue. he has written articles about this condition and clearly has a vested interest in the subject, however I only had one fracture as a child and it was because of an accident that would have broken anyone's bones (people with mild OI have multiple fracture as children). He feels I need bone fortifying meds, but studies have shone that they do not help with TMO which he diagnosed as what I have right now. He said that the other two docs (Ortho and Radiologist) think I will need a hip replacement eventually and the bone drugs will make them stronger for the procedure. I feel that these doctors aren't being honest with me, I guess. Sorry to write a book here, but I am concerned and worried and not so trusting because of the conflicting things I have heard. I don't think I'm that far from different in age than you are Alexa.
Hi RavenRose,
Wow, I didn't bring this up because I didn't think anyone would know what it was or even have it. I also have osteogenesis imperfecta. I too have the mild form.
I was extremely active as a child and broke many bones. This was my own fault, though, as when they told me I shouldn't do things, I went ahead and did them anyway. I became a gymnast in my early teens (which they told me I couldn't do), swung in trees with the neighborhood boys, raced bikes, skateboards, you name it. So I put myself at risk and paid the consequences.
My doctor left my recovery basically up to me as to when to go off crutches. I would "walk" with both legs on crutches until the pain level was to the point where I felt like I could just use the cane. I really think it was just more stiff than pain when I started using the cane. It's kinda like falling in love....you just know. That's not a scientific explanation, but really I just woke up one day and said I'm going to the cane. Basically I got through the day okay, but in late afternoon I was very tired and starting to hurt. I went from getting about 4 hours of physical activity in to up to 6 hours very quickly.
I also experienced the confusing change-of-mind diagnoses and prognoses from my doctor. After one appointment in the middle of this, I went home and started making logistic arrangements for a pending hip replacement surgery. But as I improved, the hip replacement option left the table. There was a point I starting researching doctors at Duke University because I wasn't recovering fast enough for my liking and I wanted it fixed now. This was all stemming from my overwhelming frustration.
Without presuming to know your full situation, I kind of feel like you're in the worst stage psychologically and painwise. I was scared, wanted it fixed, dealing with the unknown and in pain. The doctors were confused also and treating me "the best they could" (to borrow your phrase). The best literature I could find in the months of research was written overseas. The US doctors have little guidance as there is very little research and treatment options for them to go by.
You will probably get to the point where people will start saying to you, "Gosh, you're doing so much better," and you won't even realize it. Recovery is baby steps. Other people may notice before you do. I also feel like a month from now you will have come a long way. You will be on the upswing and looking back at these very bad months.
That's remarkable that you're taking very little medication. I know what you mean about sitting. That's a very big sign of improvement as you described it. I now sit for much, much longer periods of time and think to myself, wow, I didn't think I would ever be able to do this.
You are getting better and will continue to do so. You are on the upswing. I almost made a rash decision at the stage you're at (hip replacement), and I'm so glad I didn't. My patience was wearing thin at the stage you're in, so I started renewing my faith in God and reading inspirational books. I had to do something as the frustration was taking over my life.
I just wish I could hold up a mirror to show you how well you will be in a few months. It may be hard to believe, but it is true. Seriously.
Alexa
Hi Ravenrose,
All i can tell you about the above subject line is, my consultant told me not to do any wieght bearing untill i have been pain free for at least 2 weeks and then virtually no weight initially When i had periods of relatively low pain i was itching to go, so i understand your frustration entirely. I am so glad i did nt because the pain returned, so i was nt quite as clear as i thought i was. Please be patient it is tough i know, but we don,t need to complicate matters for ourselves by trying to get ahead of our bodies attempts at repair. Contradiction is prevalent in this area its because of the nature of the "disease" and lack of knowledge. It sure is annoying for us , here's me hanging for my mri results and not a consultant in sight so far...thinking of you , stay strong
Thank you both so much for the much needed emotional support! <3 It's difficult...sometimes more so than others, but how it helps to know that you're not alone! Being active people, we probably are more prone to frustration and impatience...but we must never compromise our progress.
Paul, not to be intrusive, but I am awaiting your MRI results as well-with fingers crossed for you! So hoping you are progressing at a fast rate and will be getting back into the swing of things.
Alexa, that is very strange about the OI because that,too, is rare. It has crossed my mind that we may be anciently related-lol. Maybe somewhere back in the genepool we had a common ancestor who had the ability to regenerate bones that were about to fail. This may actually be positive thing, all said, a kind of metamorphosis.
A good deal of the problem is because this is rather rare, not only isn't there much information available, but it may be that some doctors won't even recognize it's existence. I think when my Rheumy suggested it to the radiologist he may have been met with a degree of skepticism, I had the feeling that there was quite a bit of disagreement in their meeting that proceeded the phone call I received. At this point I'm not even certain there is a subchondral fracture, as the radiologist said the bone edema "suggests" it, but if he doesn't acknowledge TMO he could be very wrong...I don't want to lose my hip, they are rather too cavalier about that prospect to my liking.
Thank you both again for you uplifting words! Hope you are having a wonderful weekend!
Hi Alexa and RavenRose...Have either of you gone to a bone and mineral metabolism doc for you OI? I hoping a Rheumy could handle OI and TMO, but I know the bone and mineral metabolism docs deal with a lot of metabolic bone disorders.
The doc I see is a bone and mineral metab specialist and I see many patients in the waiting room with OI, pagets, rickets etc. Here's what Dr. Lasich said about these doctors in reference to OI.
I was also wondering if you two have any pulmonary problems? My doc is also a pulmonologist and just wondered if a second opinion might be of use to either of you. Pulmonary probs seem to be quite common in OI and I just hope you don't have this issue too.
You usually find the bone and mineral metabs at Univ hospitals and I know the Univ of WI has a good one. Not sure about North Carolina, but I bet they do.
This is just a thought, since I had no idea you two had OI. Raven Rose I know how hard it is to travel, but if you could find someone who has actually seen both of these disorders side by side, it might make a dx easier to get.
Wow...what a lot to deal with!
Hi Pam,
The clinic in my town is a research facility. My rheumy is actually an expert on this condition however I am not in agreement with his diagnosis which is based upon very few symptoms that would lead to this diagnosis. In my estimation I don't have OI but rather Ehlers-Danlos Syndrome of which I have many of the symptoms, including the blue scleras. I have always had hypermobile joints and unusual flexibility. Sadly, when I brought up the possibility of this to my ortho doctor he actually laughed and said "nooo, that's like the rubber band man", this is a very real condition that affects many people and probably not good for a Dr. to make fun of it. It also has an effect on the heart.
I feel that maybe my rheumy, because he has such an interest in OI, may be diagnosing this as wishful thinking on his part because thinks he has an actual case. He wants me to come in so he can photograph my eyes to show at a seminar. I think he may be trying to fit a small shoe on a big foot, so to speak. I could have genetic testing done to insure a diagnosis but I'm not sure if the cost would justify the procedure. Having had one, well earned, broken bone in my life I think it's a bit of a stretch. Even the recent fracture in my knee (I jammed it) which started the TMO is not an actual broken bone, but rather a minute dent and I have my doubts about whether I have one in my hip at all as the MRI summary talks about the extremely high signal intensity and edema "suggests" a subchondral fracture, as I said before, I don't know if the radiologist recognizes TMO.
I know,all of this is more complicated than I can explain coherently so I'll leave it at that, but I think it's important to get a correct diagnosis.
I'll let you know if I find anything further about as this is another condition that others may be interested in.
Hi Pam,
Thanks for the info on the bone and mineral docs. I've been relatively lucky with regard to my OI in my older age, but I will look into these specialists further.
My doctor has doubled my intake of estrogen versus prescribing Fosamax, etc. I also supplement with D3 and many other vitamins.
As far as pulmonary disorders, I don't think I have a problem. A few years ago I was going to another GP whose nurse ran into the exam room, said breathe into this thing, looked at the results and said, "You have COPD." She then left the room (She wasn't in there for more than 2 minutes). I'm like, "Do what?" I went home and looked up this aparatus and you're supposed to blow forcefully into it, which I didn't do. When I had my GP exam recently, I was told my heart and lungs sounded, "great." Go figure.
RavenRose, you might be right that we decended from the same gene pool. Very interesting thought.
All I know is that we all should continue being pro-active with our health concerns and question results, etc., "if something just doesn't sound right."
Alexa
Hi everyone,
Just wanted to say that I have now gone 12 weeks (3 months) since my hip began hurting. Yesterday I had almost no pain at all in my hip (either hip, actually), although I know that it will fluctuate, this is very uplifting. Unfortunately, my knee, which was the source of this thing, still doesn't feel quite right and that's been since late October, almost 5 months. I am hoping it's mostly the total lack of muscle use and not AVN from the injury to it. I found myself thinking "well, maybe if I put a little weight on it....", hopefully I'm smarter than to give in that.
My leg feels unusually "heavy", I'm sure from lack of use and I have been doing exercises like pedaling as though on a bike and tensing certain muscle groups. The one odd thing I have noticed with this is that there is an odd crawly feeling in my inner thigh suggesting, perhaps, nerve inpingement,(hopefully not damage). I have noticed that in the beginning, the day after I did these exes, the pain would be worse, but the following day it would be so much the better...and now hardly at all.
Still a source of concern are the pain meds. I am down to probably 4-5 Vics/24 hrs (5-325), when they begin to wear off I get quite anxious and very, uncomfortably drowsy. I could probably manage with regular Tylenol right now, but that is hard on the stomach. I'm worried I won't be able to stop taking the meds. The reason I want to discontinue the meds is because it has taken away my creativity and I am a professional artist, so that has been rather sad for me, I would love to get back to work.
Hope everyone is doing well~
Hi RavenRose,
So glad to hear you had a good day as far as pain yesterday. I think your pain medication intake is commendable. Frankly, I wouldn't worry too much about the dependence. If all of us can get through TMO (which is the worst thing I've ever been through), we can certainly ditch a medication dependence if we have to. I know what you mean, though, and I had worried about that also.
I am very excited to hear you're a professional artist and would absolutely LOVE to see your work. Are you displayed anywhere online? I think that gene pool thing is kicking in again, as that is exactly what I wanted to be until my parents steered me in another direction. I love to paint when I can and sincerely appreciate the work of other artists. I know it's been tough as you can't sit much when trying to paint or work, so I can appreciate your frustration. So if you're willing to share, I know others would love to see your work also. (even upload some pics to your profile if you have some)
Alexa
Hi Paul,
I am just simply thrilled to hear of your good news! That is fantastic! I had read of someone's case last year that started and ended just as quickly, and here you are living proof that it can happen. I bet your whole psyche just feels lighter to get that wonderful news. Looks like your vacation plans stay in place...yea! That made my day. :)
Alexa
Hi Alexa,
I'm not so sure I would want to put my real name out here but I can PM you (and anyone else who would like to know) with some places you can see my work online. I also have a website because I do web graphics as well. That would be http://www.harvestmoonhillgraphics.com
What kind of painting do you do? That's pretty neat.
Thank you, Alexa. Your artwork is wonderful, too.
I haven't felt much like communicating. My pain level shot up yesterday for no apparent reason and persists today, the burning in the back of my thigh and some on the front. I haven't yet put weight on it so I don't really know why I should have pain???, my MRI is scheduled for the 17th of April (that will be almost 4mos/hip), then there's week waiting for the results. As my knee started late October, (hip/January) it has been almost 5 full months that I haven't been able to walk, it's getting to me. I'm concerned about my cirrculation and muscles (what's left of them at least). I have an office visit on Tuesday and I hope the doctor will give me some insight as to what to do about those concerns.
Hi RavenRose,
It's probably the roller coaster this condition takes you on. There were days honestly when I just felt like giving up. Timewise you're where I was when the worst hit, and then it started getting better. Tomorrow you may see an improvement. I know you're taking your medication sparingly, but I wonder if you have enough in your system. At the worst of it, I said that if I'm going to suffer through this, at least I'm going to be comfortable. I pray you get some good sleep tonight and that tomorrow is a much better day.
Alexa
Hi RavenRose...I'm sorry to hear about the upswing in pain, that's rough! I agree with Alexa. Do you have enough meds, in your system, to control this. If you don't stay on top of the pain, by managing it, you'll constantly be chasing it with increases of pain, and the meds won't work.
I know you're worried about the impact this med may have, but it will only be a short-term situation. You want to improve, and if you can't get moving with the meds, cutting them down will only make matters worse. I'm not advocating taking any more than necessary, but remember it will go away and then you'll be off of them completely.
I hope both you and Paul have reduced pain levels tomorrow and going forward. Here's to a good nights sleep as well since that will help you heal. Alexa, I hope you aren't experiencing any new pain too. You're all in my thoughts going through this!
That's good advise, Alexa and Pam. I did increase my dosage because today I was at the end of the line...I cried pretty much all day, even now I'm tearing up writing this and I'm not an overtly emotional person. I'm alone all day which doesn't help either, when my pain was at it's worst, I didn't want anyone around, but now I'm feeling so isolated, haven't been out of the house since the new year started. Sometimes I come here and just read the past comments and that truly helps. Not doing anything is making me feel so dull and weak. I'll be relieved when I can just put partial weight on my leg and I can get around better and take some stress off my aching arms. It has been a roller coaster, hopefully tomorrow I be back to wanting to fight. Thank you again and I hope I can turn a corner soon like you said, Alexa.
RavenRose, I can so relate to what you are saying. If it hadn't been for good friends, I don't know what I would have done. Those bad months are now just a blur for me, and I block them out whenever they start to crop up in my memory. Even though none of us have met each other, I think we are all truly bonded and I find this so comforting. Feel free to write anytime you just want to vent or express what you're feeling. We're here.
Alexa
So here's my plan: When I win the $640,000,000 Mega Millions lottery tonight, I am inviting Pam, hubby, Mimi and everyone else on this board to St. Martin Island in the Caribbean for an all-expense-paid 3 day/3 night stay. You will be picked up with private jet upfitted with all necessary and convenient ambulatory equipment and a personal CNA. A personal masseuse will accompany the plane ride and will be on call during our stay. Security will also be provided, along with 24/7 concierge service assigned to you. Fresh seafood, sailing and our meds served in coconuts. And, of course, a hotel staff member with pager for our every need or wish. Just thought it might be a good little incentive for all of us and a great way to "further our studies." That part so I can write it off on taxes.
Thank you, Paul, Alexa and Pam. Today is a little better. My husband is home and as I've increased my meds, I'm relatively pain-free while they're working. Family came to visit and more expected tomorrow. I think during the week being alone too much gets to me by week's end, usually when I'm well I rather favor my time alone but not having a choice is the difference. Would love to be spring cleaning in my garden and yard, though! Paul, I've taken your orders and am smiling. Now my orders to you all---Take care and have a wonderful weekend! You are very special!
Oh RavenRose...I'm sooooooo glad you're feeling better. You know if you need someone to talk to just let me know. I wish we all had Skype!
Don't worry about the garden! I planted fressia's last week and they look like they aren't going to make it. I could be wrong, but they're selling them way too early. The warm weather is forcing our bulbs and fruit trees and I just don't know how good that is. Normally this stuff doesn't even begin to bloom for another month. Now we have high winds again (45 mph with gusts at 60) and the flowers are being destroyed.
Normally our flowers do very well but this wierd weather is really messing them up. I should have waited on planting these, but they were really inexpensive and looked so good. Now with the morning freeze, the days really warm then add the wind... I just don't know...it will be a miracle if they make it.
I know the weather is just as odd all over the country so you guys are having similar problems. I hope we get some cherries and peaches this year, but it looks like the wind will blow the blooms off way too early and then we won't get much, if any.
You could always plant some indoor plants and make sure they are accessible to you. I don't know if you can water plants on the counter tops, but maybe to get them started inside with help from your hubby for carrying. At least you'll be doing something you like. As long as you do something that you can handle with crutches-as difficult as that is. I hope you and Paul have decreased pain levels tomorrow and the rest of the week, remember paws crossed!!!!
Also, love your graphic art, it's so beautiful!
Take Care!
Thank you about my graphics, Pam. I get so many inquiries for new ones, it's frustrating to have to turn people down.
We've had a lot of wind as well. My beautiful yard really needs some attention as all the leaves from the woods have scattered everywhere. The yard and garden are my domain by choice.In a normal spring we wouldn't even be able to work outside yet, kind of too bad that this happened this year as maybe I would have been able to at least go outside and help direct my husband as to what needs to be done just to keep it presentable until I could fine tune it. He's been given a lot on his plate as it is, I hate to see him take on another task but I'm sure wants a nice yard as well.
I wish we had the healthcare system that Paul has in England. Luckily, we have good insurance...as I look over the incoming clinic bills, I don't know what people who don't have insurance do. It's amazing the costs of these things.
Have a good night!
"The best things in life are free. There is absolute joy and wonder to be had in the simplest of moments. Watching the sunset over the horizon or spending time with a family member. Enjoy the little things, because one day you may look back and discover they were the big things." - Marc (Life Hack)
I've always held to that philosophy too, Alexa. That's why I prefer to live in the country where there are a lot of "freebees". At night we can hear the coyotes, sometimes even wolves, in the woods, the chipmunks and chickadees eat out of my hand the deer stand close by and watch me when I hang out the wash in summer and the fawns race past my back steps playing like like puppies.
Paul, you are making such fast progress now, I am jubilant for you, 300 steps is fantastic! Those muscles are going to come back and it will feel natural as ever. I have to say that I love the rain...a misty Yorkshire sounds positively amazing!
I got to sit outside on Sunday with company. I was blowing bubbles with the kids and just enjoying the fresh smell of the grass and earth. Today i actually got a little work done although it was challenge with the fuzzy brain from the meds, forcing myself to get started is the problem. Tomorrow is the doc in the afternoon. He's going to try to talk me into bone strengthening drugs which I am going to decline. I've had some strange "new" pains which have me concerned. A picking, pinchy pain in the front upper thigh... hmmm, wonder what it could be? Hope I didn't hurt something inadvertently.
I'll post if there is anything significant from the doctor tomorrow.
BTW Alexa...who is "Mimi"?
RavenRose, you sound like you live in utopia. I love being surrounded by nature and any animals. I know my neighbors think I'm crazy, but I have woods behind my house and always leave food out for the raccoons and even the possums. Yeah, I know, that might be a little overboard, but I even think the baby possums are just so cute. They're only about 8 or 9 inches long, and I know most people think they're ugly, but I happen to like them.
Mimi is Pam's adorable kitty. You can see her picture by clicking on Pam's profile and looking at her photo album. Tia Maria is Paul's beautiful cat, and he has pictures posted also.
RR, so glad you had such a nice Sunday afternoon. I'll be anxious to hear your report from the doctor.
Paul, you're just doing so well! Enjoy the time off while the plant is closed. What does your company manufacture? I know you said BD, but I'm not sure what that is.
It was another beautiful day here, and I'm a little concerned I'm over-doing things, but it's such a luxury to spend time outside and replant flowers, etc. I've been looking forward to this for a year and I thank God every day I'm able to walk and function now. RavenRose, you have a lot to look forward to!
Off to hunt up the BioFreeze...everyone have a great evening!
Alexa
Paul, so sorry you awakened the sleeping beast on the inclines. I've done that before, too, and usually a good day of rest will quiet things down. It's so hard not to push through and resume normal activities. I hope you're feeling much better today.
Thanks for letting us know about your company. I looked at the website and it is really impressive, and HUGE. I know they are proud have you on board.
Wishing everyone a peaceful, pain-free day.
Alexa
Very sad to hear about your increase in pain, Paul. Hope a few days rest will have you back to where you were. Our muscles and tendons are in sad shape after so long without any strenuous activity, I'm sure. Where you described the pain is where my original pain was...please be careful.
Will have to look up those sheep I've never heard of that coloring and neat about the watering pool. You are indeed fortunate to live in a place with such antiquity!
Funny about your wife, I think this is probably very hard on the spouses as well. My poor husband has had to take over ALL the chores and go to work, too. Besides the extra work he's had to see me in terrible pain, sometimes I got a bit snappy with the pain, he bites his tongue when he gets frustrated and tired (although sometimes he has let it out he-he :) which is understandable). He's been banished to the extra room to a twin bed that he barely fits into for months now. Every morning before work he has my bowl and cereal on the table and teapot and cup ready by the computer and glasses of water by the bed and computer. I try not to ask for anything unless it's absolutely necessary and I can't get it myself. Hoping I can do more at least very soon to take some of the stress off him.
Alexa, I think opossums are neat, too. We had one come to the house a few winters ago. I fed it oreos. They are sooo slooow. Never seen babies though. Happy that you are so much better this spring...that's a long and difficult time and you deserve all the enjoyment you can get after this! How is your little maple tree doing?
Living in the woods, there is never a time looking out the window and not seeing something incredible, but it has some drawbacks, especially for a gardener - haha - they favor whatever I plant. We got a motion detecting camera last fall and my DH is going to put it out and see what it picks up- should be interesting.
Doctor later today, riding a half an hour with my long legs scrunched up in the
car should be rather painful-maybe a little more meds.
I found this on the web early on and just thought I'd share- "the hang test". A test for hip fracture is to sit on something high enough that your legs dangle, a bit out from the edge, and put gentle, downward weight on your knee. If it causes pain there is a possibility of a fracture. It's what prompted me to go to the emergency room in the beginning but the x-ray didn't show any major break, the later MRI suggested a tiny stress fracture, however.
Have a great day!
Good luck with the doctor's appointment today, RavenRose. I know the car ride will not be pleasant, but I hope you can get a little comfortable. Your husband sounds like a real gem! What a sweet, thoughtful guy.
Thanks for asking about the maple tree....:) I'm calling it Tom (transient osteoporosis migratory). Tom seems to be very happy and very healthy. He was fertilized last week and seemed to really like it. I posted a photo from today of Tom in my profile pictures. Pretty fit looking so far.
Did anyone mention that after you recover physically you start getting a little looney tunes; naming baby trees, etc.? Just thought I would give you a head's up on that. Again, hope you got a good report today!
Alexa
TOM, ha...that's cute. As far as the luniness...it wouldn't be much of a change.
My appointment lasted for an hour and a half and all we did was talk. I brought all of my questions and various doctors' articles that I gleaned off the web. I don't think he was ready for the barrage and it was more of a discussion about TMO, itself and the lack of knowledge about it. He didn't try to over-sell the bone enhancing meds, admitting that they wouldn't help the situation I was in now. He again warned that I was in danger of fracture (that could ultimately result in AVN) if I put ANY weight on my leg at all until the bone was rebuilt which could be months...how would I know when that was? He said I would know (Alexa, you had said the same thing). He said pain is a sign and I should heed it, any pain means NO. Some lab tests showed that I am making bone and utilizing calcium normally. MRI in two weeks will show more, fingers crossed that it's progressing. T score for the rest of my bones is normal.
I showed him some of my reports, which he seemed interested in. One was from 1996, when I suggested it was probably outdated he said there was nothing new known about it, so probably not.
He is going to a symposium in two weeks where the top people in the field are meeting and he's taking my case to present to them to see if there is any insight.
I suggested that this was under-diagnosed and possibly the cause of many unnecessary hip replacements...don't think he liked that. :/
Bottom line: it's a mystery.
All in all, it was so much easier to get in and out of the car this time than a month ago when I went. I was happy to get out of the house, too!
As far as talking about my DH I just meant these things affect the people around us as well. Things aren't always rosy.
Ok, another novel here, sorry....and they all lived happily ever after
RavenRose, so glad you had such a long session with your doctor. With the HMO/PPO time allotments for patients, you really scored big there.
Honestly, I think at your stage (where I was) they are treating us emotionally and mentally more than anything. My ortho referred me to a GP at that point (when I was so agitated) for additional "medication management." I am absolutely convinced that the GP had been prepped by the ortho as to my emotional state and therefore he spent a good hour just talking to me also.
The GP discussed the Boniva/Relast medications and said he did not prescribe them because of the dangerous side effects. In fact, he told me that some dentists in Florida refuse treatment to women who have been on those drugs. He instead doubled my intake of estrogen to help with the bone loss issue.
I will be very interested to hear what the doctor has to say after the symposium.
It's funny you mentioned it was easier getting into and out of the car. Those were little milestones for me also. I would always announce that "Gosh, this is easier" to whoever was driving and usually got "the look." It will continue to get easier. It's just that people don't realize how important these improvement steps are, as insignificant as they may seem to others.
Glad also to report that Tom's color is good today and his vitals are stable. I think he's going to make a nice addition to the front yard with a little further care and attention.
Alexa
Alexa, I think he cleared the rest of day for me. He is really into my case in part because he is still associating it with OI. I think he respected what I was saying more because I had learned quite about this thing.
Tom is very shiny and healthy looking. What kind of flowers are those purple ones in the background-pretty?
As far as the symposium, I am looking forward to hearing about it as well. At least maybe it will bring the subject more to forefront of these doctors minds and maybe more docs will be looking for it in other patients.
Paul, you are right, I think it's time to give it a rest as far as researching this concerned...there is nothing new to be found and it is what it is. I think I was just trying to get to know the evil that assaulted me. The Evil One is TMO and his minions are fracture and RSD.
Is there a place where I can find a pain level chart? I notice that you all have used numbers to express your pain? That might help. I did start a journal a month ago but it gets tedious explaining it in words. pain free + 2 weeks = very light increase in activity regards the hip... well heeded!
The snow is nature's way of saying "Paul, you need to lay low for a few days and rest those strained muscles." :) Be careful not to slip if you go outside.
Sometimes I tell my DH some of the incredibly many similarities we face. He thinks we are aliens with an alien disease....I tell him he's right and that we can turn people into toads, too.
Paul, I never thought of Tom being vulnerable to the critters. I've only seen deer in my front yard one time in 11 years, and that was almost surreal. I wonder if there is some kind of spray I can get to make him unappealing. I'll look into that. Thanks.
I laughed out loud at the toad comment, RavenRose. It's very possible we were all picked up by the same spaceship of greys and are part of some alien experiment. I know I've personally had some missing time episodes back in the day (though I just thought it was too much partying). Perhaps it's the monitoring implant that's giving us trouble in our hips. I'll be looking for strange markings tonight....that is, if I can get to sleep now.
Just a little note...even after a year, I started getting the stinging, burning sensation back into my upper thigh today. Not bad, but enough to send me to timeout this afternoon. I have been working like crazy outside, dragging around bags of mulch and such. I am positive I really am doing too much and I'll heed the warning. I'm just wondering if we're going to have this for the rest of our lives. Anyway, with a couple hours' rest, it is completely gone.
That's purple phlox behind Tom, RavenRose. It's a nice spreading ground cover that comes back every year and very maintenance-free.
Have a good night, all....
Alexa
How are you feeling today, Alexa and Paul?
My refill prescription were pills from a different company and seem stronger, I haven't been feeling so great today. Feels like someone's frying eggs in my head but it doesn't seem to be doing much for my pain. They say they are the same but they're not.
Has anyone had a skin discoloration with this? My foot has an area of pinkish purple, I know my foot was swollen when my pain was at it's worst, but you'd think the discoloration would be where the problem is. ???
Hope everyone has a great weekend and Easter holiday!
Hi RavenRose,
I'm cooling my heels today and doing things inside the house. I'm trying very hard not to set myself back from months of recovery. I hate to admit this, but I gave my bathroom a real scrubbing today....I mean with Clorox and a toothbrush in cracks and crevices. It had the basic cleaning done over the months, but nothing thorough. That was a task, but it feels good to get it done. I'm finding pleasure in the oddest things these days.
I hate to hear you're not feeling well today, but frankly, I'm not surprised. Think of the physical outing you had yesterday. One trip out of the house like that and I was basically wiped out for a day afterwards. Getting in and out of the car, getting to the doctor's office and everything else you did physically. Plus it sounds like you're adjusting to a new medication. See if you can possibly get the old one back....I don't like the sound you described of the sensation in your head.
I had the same thing happen with my pills. They have always been solid white, but now are white with like a speckled Easter egg finish. They are also making me a little nauseous and don't seem to be working as well either. I have been meaning to question this.
I didn't have any discoloration that I can remember. I'm wondering if you've possibly broken a blood vessel and the blood is pooling in that area. Is it tender over the discoloration or any swelling?
Alexa
It doesn't sound like you're taking it easy :/ but how I understand about wanting to clean the house! That's on my to-do list right after a 5 hour shower. I wonder what is causing your pain, overexertion yes, but what is it triggering? Glad it subsided after you rested, though!
I was taking the pink speckled pills and those made me nauseous as well but now I have the smaller white ones and they're making me feel toxic...like way too much. I think I'll only take a half before bed tonight, if the pain wakes me up I'll just take more. They seem to affect me breathing, like right before I fall off to sleep sometimes I realize that I haven't breathed for a while, kind of scary really.
Something bad happened today, I fell asleep for about an hour and right as I was waking up I had a severe spasm where my whole leg tightened up and stretched way out involuntarily, pulling everything in the hip and thigh area. I am in more pain tonight than I've been in for a long time, can hardly sit here. I thought those spasms had gone for good, apparently not. I think they're doing damage, especially this one, and I don't know how to stop it as they happen before I'm fully conscious. I feel like I am going backwards fast, two weeks ago I hardly had any pain for a couple of days.
The coloration on my foot is not at all painful. I think it's from the RDS that accompanied my TMO but why it's on my foot and not my hip or knee is curious.
Have a good night!
I woke up today to read your postings, Paul and RavenRose. Sometimes I almost feel guilty to be so far ahead of you guys. I am distressed that you both are experiencing those awful spasms and cramping. They can literally shoot you straight out of bed with the pain. Aside from upping your calcium, potassium and magnesium intake (which really helped me), are either of you taking a sleep aid? I had a prescription for generic Ambien which I would take a little chip of at night to get to sleep. Yes, I know it's another medication, but seriously folks, this is something that we all need to get through with as much help as possible. It's bad enough to suffer through the daytime pain and agony, but your rest is so important. I don't mean to sound like a pill-pusher, but sleep is your best ally right now. At some point, when we're on our book publishing/movie tour, we can have a pill-burning party and celebrate our medication-free new lives.
RavenRose, I also experienced the breathing side effects you described with the medication, along with heart palpitations. This was during the heavy medication phase. All of those side effects eventually went away for me. But you're right, they are a little scary. I was told recently by a pharmacist that "they" (FDA or whomever) have lowered the maximum dose of Tylenol from 4 grams a day to 3 grams a day for toxicity.
The first shower I took after a few months was literally one of the best days of my life, and I'm not kidding. I sat there in my shower chair and just had warm running water wash over me for 45 minutes. I had prepared for that wonderful day with the tub brace (fits over the edge with a knob to tighten), a shower chair and a hand-held shower wand thing attached to the shower head. One of the best safety investments I made was a hotel-quality, non-slip rubber/latex mat which adheres to the bottom of the tub. It's simple to install, just peel and stick. It has held up extremely well, cleans well and no curling corners or edges. I bought this off of eBay for under $20. I would highly recommend it.
I love the book/movie idea, Paul. We certainly have enough material to get started. My suggestion is you play yourself; you're better looking than Brad Pitt anyway. Too bad we didn't start filming our lives from the beginning. It could have been a good documentary. I would love to know more about your town. I've always thought of England as being so charming.
I had a friend from England a few years ago who thought I was quite crass when I asked her if she wanted to go to the shag club. Of course, here in the South it's the jitterbug style dance that you're required to learn by age 14. I think it's in our laws. So that's one cultural difference I learned very quickly.
I'm hoping today is much better for you both.
Alexa
I just took a drive through Chiseldon via Google Earth, what a great idea! I found a lovely path called Church Road with amazing, mossy thatched roofed cottages and some interesting gardens and landscaping. Will def have to return as I only stayed a few minutes. The images aren't recent though, but nice none the less. I went to my area and the street view doesn't work (probably because I live in a rural area). I'll Pm you the town closest to where I live with directions to my house. It is almost totally obscured by trees, though. Their image is from 2008-the trees are leafed out so must have been summer as right now they are still mostly bare. Great idea again, Ruimon!
Oh the though of your shower or a good, long soak sounds like heaven, Alexa! Not sure how to get over the side of the tub without putting full weight on my leg. Thanks about the tub mat!
I actually had a little bruise on my inner thigh at the very onset of this. I remember I couldn't figure out what was going on at first, perusing the web in search of an answer, I finally came up with "a grade 3 groin strain", I had been doing exercises and it was the only thing that was unbearably painful and unable to bear weight, the hang test I mentioned above changed all that. I knew it wasn't normal that it progressively worsened. Usually with an injury, it happens and that's the worst of it, then it slowly improves.
Supper's on so I'll write more later.
I'm just catching up...I saw a couple of posts that caught my eye...
Strange sensations: I noticed some unusual nerve sensations in my legs...usually down my legs to my feet. I even did the Babinski's reflex test to make sure I didn't have ALS...my results were a bit borderline. Paul: you mentioned feeling some odd sensations in your leg...can you try this test and see what results you get? http://en.wikipedia.org/wiki/Plantar_reflex
No pain/pain: You will experience progress and setbacks. I was feeling pretty good after a cortisone shot and decided to walk to PT (3 blocks away) without my cane. A block from the office my knee (focal point of the TO at that time) buckled...lots of similar stories with each episode...
I suggested this before but it may have been lost...try sleeping with a pillow between your knees...it helps keep your hips straight and your knees from knocking.
Last...exercise your muscles as much as you are able (even if you can't walk)...and keep up the strength in the areas that aren't affected in case they are next.
Best wishes, Dave
RavenRose, I am sorry to hear your good hip is hurting. Ugh. Hopefully it's "just" from overuse. That has to be depressing for you, but I'm praying it's not affected. Sometimes it seems like one step forward and two steps backwards. I'd say stay off of it, but I know you are. Maybe it's the trip out to the doctor this week and you're still feeling the effects.
Your yard pictures are just beautiful. I love the deer in the one shot...they almost look like statutes. What a great place you have.
I'm toughing through this weekend with no medication. For some reason, my refill was not authroized on Thursday by the doctor's offiice, and of course, the doctor's office was closed for the holiday yesterday so I couldn't talk to the staff. I'll be gnawing on wood through Monday.
Happy Easter/Passover to everyone, and DaveCat, good to see you!
Alexa
Cold turkey on the meds doesn't sound so good. Hang in there, Alexa. Don't gnaw the furniture...get some Easter peeps, they taste better and if you leave them out for a while they get just as hard- :)
Weird sensations in the legs...creepy, crawly, alive feelings. I still have those, too. They went down to my foot in the beginning and my foot was actually swollen a bit. Really curious to see my MRI, hoping they can tell me what that crawly feeling and sometimes pain, is in the back of my thigh.
Thanks about the yard, I really miss it. Coolish, great day for working outdoors.
Hi guys...I just wanted to pop in and say I hope you all are having decreased pain levels today, and have something fun planned for tomorrow. It's been really nice meeting you all, albeit electronically, but I can say I now have more stupendous friends that I admire grately! Thanks so much for posting here, your wisdom and insight has been such a thing to behold.
We're still hoping that you recover faster than planned and you all can go on vacations soon.
I've learned a lot from all of you and so has everyone else reading this thread. You all went the extra mile in uploading photos of you lovely pets, and your gorgeous and handsome selves that I feel I really know you all.
Have a Happy Easter and I hope the Bunny brings you all you lovely things.
Take Care!
Hi again...I forgot to include Passover in my holiday wishes.
If any of you are on Face Book, I'd love to have you as friends. Here's my FB account name, if you want to send a friend request and pop on by: http://facebook.com/pam.flores3
Have a wonderful Holiday...
RavenRose your yard is gorgeous! It looks perfect for having a wedding ceremony, with all the lush ivy and greenery. You are so lucky to have such a beautiful place. The deers are cool too. I suppose they can cause some problems, but they're so pretty. I really like the one that looks like mist of fog is in the yard, neat looking photo!
Hope you can get into that lovely yard real soon! Hope you're feeling better and the trip to the Dr. wasn't to strenuous and painful. Take some time to recover.
Hi guys, hey Dave glad to see you! How've you been? Paul, Alexa and Raven...I hope you guys are making it through the holiday weekend with your pain. It's horrible when it's worse.
I uploaded an Easter bouquet for you all on my home page, hope you enjoy them! Paws crossed that you all get some relief from the pain soon.
Hi All,
Glad you were able to enjoy your holiday!
Thanks for letting me know the type of sheep, Paul. Maybe I'll take a little virtual holiday to Yorkshire this week. I remember before all this, I saw a travel show about places where you can walk the entire country of England, through sheep meadows, ancient ruin sites, and small villages, had really wanted to do that at some point. Ha, now I will feel lucky when I can walk to the kitchen unassisted. You are so lucky to live in a place with so much history, so old. The places you walk could have been trodden by Roman soldiers, Vikings or any number of ravaging tribes-ha! that would be amazing!
Alexa, I hope you made it through the weekend okay w/out your meds. It may have sounded a bit sarcastic what I wrote, but I was serious, they don't suggest "cold turkey" when you stop hydrocodone.
Thanks for the virtual flowers, Pam! Your Facebook link didn't work for me.
My Dh made the Easter feast, I got the baskets ready. Luckily it was a good day emotionally and pain-wise. Yesterday was different story -ooow, bad day. When I opened my eyes in the morning I immediately started to cry...nothing changed...the rest of day followed in kind. Feel brighter today, but these mood swings are scary as I've always been pretty upbeat. Good news though, I've been sleeping on my side more. My back hurt so bad from being flat on it, it was overshadowing the hip pain. oh well... the hip hurts a bit when I'm on my side- but I can do it!!!
One thing I'm not quite getting is that you started putting weight on your leg after no pain but clearly you are all still experiencing some pain. If someone could explain that it would help.
Not even going to ask what this "club" thing is but if Paul ****'ed it out I'll assume it's a bit naughty.
We're back to cold here, too. Hard freeze last night, all the lilies that shot up in the warmth were laying down the morn, hope they're ok.
Well, I'm just wondering where my early morning post is. It seems to not have made it on here or disappeared. Rather tragic as it was filled with great literary prose. Not.
Anyway, I had thanked Pam for the Easter flowers pic...just beautiful, and RavenRose for the tip on the Easter peeps. I did air-dry some, took three every four hours, and it seemed to help. It wasn't bad without the script meds, but I did get very, very tired and weepy. Not sure if that was sudden withdrawal or not, but very probably. Paul, I'm glad to hear you're in a good phase...just watch out with the children and don't over-do. :)
As far as the shag dance (I'll bleep from now on), here in the South it's an age-old tradition. I guess it's more apt to call it a swing dance, but some refer to it as a jitterbug-style dance. We have s*** tournaments, s*** weekends, s*** clothing, etc. There is even a weekend at the beach called SOS, Save Our S***. If you will Google "Carolina Shag," you will find videos on how to do it, the history, etc. In England, apparently it means to fornicate. You can imagine the scenario Paul referenced if you didn't know what you were saying.
RavenRose, when do you get your MRI results?
Alexa
RavenRose, I meant to address the side sleeping. When I first turned to the side to sleep, it was more of a side/tummy kind of thing. I was turned on my side, but with my hip sort of pushed out the back, if that makes any sense at all. Putting direct pressure on the hip initially did not work, but the side contortion with the hip out the back was the best I could do at first. Even to this day, I'm still aware of some slight discomfort if I sleep directly on my side. But to just get off my back was worth any slight discomfort. I'm so glad to hear you're starting to turn, so to speak. If you have some leftover peeps, stuff them in a pillow case for a prop under your tummy.
Alexa
I'll have to look up your dance...sounds like fun actually! We have polka's, LOL there is a Polish population in the area. I've never polka-ed personally but the natives do it at weddings or older folks have dances. They look like they're having a good time, too.
My MRI will be on the 17th, it will probably take a week to get the results. I'm nervous and eager at the same time to find out what's happening in there. I don't seem to be making the progress that everyone else is, so I hope there's not a problem. I know everyone heals differently but everyday is so much the same as the last. Paul is about a month ahead of me with the hip and he was starting to walk with assistance by now. We'll see I guess. Also, I will find out what the doctor says after the MRI and he will be back from the symposium by then. I will definitely post the results.
I'm thinking I'll maybe take some fresh, squishy peeps and put them in a pillowcase and put them under my back when I sleep.
So far I'm just sleeping on the opposing side. I'm afraid to try the bad side yet but I'll keep that in mind sleeping forward off the hip directly. When was the last time you had an MRI, Alexa? Was it 100%?
I'm starting to work a little again...quite a few orders from the web...maybe more than I'm up to.
RavenRose, so glad to hear you're doing some work, although I know you're probably having to push yourself. It's quite an accomplishment, though.
I've only had one MRI since this began, and that was last year. My ortho wanted me to have another MRI a couple of months ago, but I basically said no because I couldn't do it financially. I have such a high insurance deductible that it would be another $1k out of pocket, and frankly, I'm tapped out on medical expenses over the year, especially since I haven't worked in months and months. The physical therapy was out of pocket also, and that was well over $2,200. He agreed to just doing a done density test, which is covered by my preventative clause. It, of course, still showed osteoporosis in the left hip at -2.5, which is on the good side of osteoporotic. The other hip was in osteopenia range.
If an MRI was covered by insurance now, I would do it without hesitation. But as long as I am improving steadily, I'm good with it. I'm really having to watch the finances now.
Alexa
Hi All...just wanted to pop in and say a couple of things...
Paul your weekend get-away sounds fantastic! I would love to see that part of the world. You are lucky to live in such a historic place...how cool to have churches that are hundreds of years old. I hope you are doing okay and your pain levels continue to decrease.
RavenRose, so glad you got some work coming your way. You are very talented and I'm not surprised. I hope you can do some work while you are recovering and that it occupies your mind some, that should help a lot. BTW, not sure why my link didn't work to FB, but if you go to FB and put in my name I bet you'll find me, even though they're a million Flores'. Thanks for the comments on the flowers.
Alexa, did you happen to see an error message when your disappearing post went missing? I've heard from some of the members that they were having trouble posting. Sorry about that and I hope it's fixed soon. Wish you didn't have to go without your meds, but I bet you came up with something that helps. Thanks for the comments on the flowers.
Take Care you guys! We're expecting more rain and snow in the higher elevations near by. Strange weather alright. Mimi has cabin fever because of the rain, but she'll be going out as soon as it stops.
Hey RavenRose...see if this works. https://www.facebook.com/pam.flores3
Alexa, I understand completely about the cost of medical. Three years ago this thing actually started in my ankle and I spent a year trying to get someone to take it seriously, everything they did was pricey (total $19K) and made it worse or prevented it from getting better, the boot they had me wear did some nerve damage I think.. The tests and therapy were so much even with good insurance/deductible. The next year I had to stop going because I couldn't afford it any more. This year, my now rheumy finally came up with the diagnosis that they never reached, he looked at my chart from back then and said" yes-TMO". What a waste of time any money! If you ever can swing it though I think you maybe should have another MRI just to be sure everything is ok. I will say that with my TMO ankle although improving, I was still having a bit of pain as of last August (2 1/1yrs) when I re-injured it running which inadvertently led to this. The fact that you still had osteoporosis doesn't surprise me as I did too after a year. Please be careful though if the bone is still fragile.
Are you painting at all, Alexa? Don't forget Zazzle or CafePress if you get bored! It's fun :)
Paul, I agree, the mental part of this has now become the big monster. Lack of sleep is my problem, about 6 hrs/night...not doing much so not tired....until the daytime. Sleeplessness+meds=an emotional mess. Brain chemicals have impact on healing, for sure.
I haven't brought this up before but I am worried about the MRI because when I returned home from my last one in early March I had to put full weight on my leg going up steps to get back into my house. I felt a sharp pain and have since been wondering if I didn't fully break something. Fingers crossed no harm done. Also, want to see the other hip image as it always hurts when I put weight on it, not as severe as the bad one but then again it probably doesn't have a stress fracture like it...yet.
Back to work for me...then maybe a nap :)
Pam, I have a feeling the reason my post didn't go through was probably "operator error" or my browser. I use AOL for postings and it's slow and jicky and balks at the slightest non-email use. I should really do this on Firefox or Google Chrome.
RavenRose, I don't like to hear that you felt a sharp pain on the steps. Wow. Don't be borrowing trouble, though, and just hang in until your MRI. As Paul said, you're going to be feeling better before it shows up on scan or plain film. It just dawned on me that I had a bout with ankle "tendinitis" for several months right before the diagnosis of TMO. Obviously, as I read your posts, this precipitated the TMO. Amazing what you can learn from others.
I have discovered something interesting. I stopped all exercising and stretches right before the weekend. My back and hip have not felt this good in months. Go figure.
My cross to bear now is removing myself from these meds. Doing without them this weekend sent up a huge red flag that my body has become dependent on them. I am tapering off this week, and I am just DONE with hydrocodone. I am not surprised after being on them for a year now. The withdrawal is tough, but I will just hang with it until my system is completely flushed. Tiredness, depression, teary eyes, runny nose, lack of drive and motivation, general malaise and muscle aches. From what I have read, it will take about 7 days. I am supposed to meet a friend for an early dinner at 5 p.m. and it's all I can do to take a shower and get ready because of the fatigue. Oh, well, I'm looking forward to next week when hopefully this is all over.
I have a desire to paint, but just can't seem to get to it. Next week, though, for sure!
Have a great afternoon and hug your spouses/kids/pets!
Alexa
Alexa, best of luck to you stopping the meds! Think of it as lucky that you are sleepy, from what I've read most people get insomnia. Drink plenty of water, too. They say a step-down program is best, decreasing by 1/4 pill every 2 days, but if you can do it cold, that's great! Maybe tea would help during the day as it pulls the toxins out of you and has caffeine. I envy you, you're going to feel so much better, I'm sure!
Hope everyone had a great weekend. How was your trip to Yorkshire, Paul? Hope you had a lot of time to relax and rejuvenate!
I have my MRI later today. Won't know the results for probably a week tho. The last few days I've had some extreme nausea. Fine when I get up but as soon as I eat-seasick feeling. The hydrocodone has never agreed with me but it is getting worse, going to have ot quit but not sure what to take for the pain instead.
RavenRose, you've been on my mind the past couple of days because I knew your MRI was happening today. I just wanted to wish you luck with that and a comfortable, safe journey to and from. Sorry to hear the meds are not agreeing with you. I hope your doctor can recommend something else that is a little more tolerable. I'm anxious to hear your results. Take care and I'm thinking of you.....
Alexa
Awww, thanks for the well wishes, Alexa! Because it wasn't TMO related I had not mentioned this before but during their testing they found something amiss with my liver. Before my MRI I am having another blood test, as well. Apparently the last test they did to determine whether my bones were growing also was a liver test, my rheumy was surprised to find the bone part of the test was fine but not the other. This could be the reason why the meds aren't agreeing with me-hopefully they didn't do any worse or permanent damage.
My office visit was two weeks ago, since then I have had some small improvement. At that time, if I stood w/crutches and just rested my foot on the floor it hurt, now it seems just a tad stronger and doesn't hurt with slight weight. I know that seems paltry but I think it is a step closer to when I can start walking with crutches. Next week will be 4 months since the very onset of my hip pain...seems like years!
Hi All,
Well i had a lovely few days in yorkshire, a real nice break. It took 5 hrs to get there but it was worth it. I have uploaded some pics if you are interested. There's two there that i especially took for Ravenrose, i don,t know why, but i thought they might appeal to your art "eye". I have some good news on the pain front i hope it will inspire you on your journey. For me it is now rapidly becoming a case of what i can do, as opposed to what i can't. For instance, (i always think of your first shower here Alexa) i can step into the bath now with no pain or restriction. I can lower myself into a deep hot bath again with no pain or restriction. I can also get out un-aided yipee!!!!!! Regards walking i am now able to walk unaided for short distances. Sure the hip (and sometimes the hips) feel (its so difficult to explain) not painfull but "sore" but its definately getting stronger and my brain knows it hence my confidence to do more. As you said on an earlier post Alexa you just know when its right to try. There really is no hard and fast rule , its just listen to your body. I know your just behind me Ravenrose i hope you can take hope in this to pull you through the down days. I hope you are all as well as can be expexcted, keep smiling.
Glad you had a nice holiday, Paul! Thank you for sharing the gorgeous pics, what a great way to start the morning! The landscape is definitely artistically inspiring! I'd be looking to the ground for artifacts though as that is my true love-archeology. Looks like you had nice weather, too. How great that must have been to get in tub as well!
I'm still waiting on my MRI results. I may call them this afternoon. I cut my meds down to 3/day....they were just not agreeing with me. My pain remains at about a 4-5 now but I have new things that I'm doing right along-I can get my own sock and shoe on (could always get everything on but the sock and now I'm wearing 2 shoes again) and am spending very little time in bed. The trip to the clinic was much easier and I got in and out of the car quite easily. The MRI took almost an hour & 1/2 compared to last time of 40mins...After it was over I was sitting on the table talking to the tech on one side when the assistant grabbed my bad leg and swung it sideways when I wasn't ready...luckily no harm done but I wasn't happy about that. Working more is taking my mind off it all to a degree...sadly, I will miss out when my publisher goes to a licensing show next month.
Alexa-hehe-not sure about "hoover" either. Here Hoover is a vacuum cleaner which would make sense that your wife would be happy. :)
It snowed here last night, almost all gone with the sun this morning though.
Happy happy!!! Just got off the phone with the osteo's nurse. He's out today but she read me the radiologist report. "Much progress overall since the last MRI", some edema only in the femoral head (before it was head, neck and trochanter), and a small to moderate effusion on the joint area. The latter is what is causing my pain. Nothing that would indicate AVN, which is what I was most worried about. Good news! I have the rheumy nurse calling me back later as well.
RavenRose, that is such good news!!! Your progress is really remarkable, and I'm so happy for you! You and Paul have made my day. I just love these good, positive posts. I hope your blood test results are just as good, and it's just a temporary thing with the medications causing a skewed result. That should make your weekend, and I'm just thrilled. If you get further results, please post!
Alexa
Well, the osteo doctor just called, only talked to his nurse on Friday. Apparently things aren't as rosy as they could be. My subchondral fracture on the femoral head has healed, but there is another subchondral fracture in the socket part of the joint. I have been having more pain again lately, that might explain it....I think it's time to give up here. I asked the doctor what he thought of the rheumy doc's TMO diagnosis. His answer? "never heard of it before"...if there was any doubt that this goes frequently undiagnosed that was a clencher, for sure. Have not yet heard about the blood test, will call again later...need more meds anyway.
Happy St. George's Day to Paul. Enjoy your tea!
RavenRose, I'm so glad to hear you finally talked to the doctor. Without looking back, I think you had an episode on the steps that caused some sharp pain. Do you think that possibly would be the cause of the joint fracture? Very gingerly on the steps from now on....seriously. I'm very glad to hear the other fracture is healing. That says a lot about your body taking care of itself. I know that probably feels like a setback....it would to me....but you are really healing a lot faster than I did. I hope you're continuing to work some, and I hope your snow is gone and spring has finally arrived there.
I have four tiny birds that have hatched up in the corner of my porch. It's just amazing to watch this. Both parents are feeding them, and I mean all day long. They are starting to feather and they are really outgrowing the nest. The mother still sleeps with them at night, but I can tell they are about ready to fly the coop. I have an electrician coming tomorrow morning and he is just going to have to sidestep all the droppings on my porch. It's really embarrassing, and I guess I could get out there with a paper towel before he comes. I'm living in fear, though, that Maverick and Nicholas will hear the chirping before they get gone. I'm trying to keep the cats in the house as much as possible. We'll see how this goes.
Anyway, hope you're resting well at night. Thanks for the update, and let us know of the bloodwork results.
Alexa
It is fun to watch the birds' nesting, you almost feel "parental" towards the young ones. We have 4 shelves put up under the eaves of our house and they all get used. We put them up because the phoebes come back every year and were nesting on the front porch on the light, so in summer we couldn't go out on the porch or leave the light on because it was a fire hazard. Last year we put up 3 wren houses and the all became inhabited instantly, that was fun. Wrens eat spiders we have a lot of large wolf spiders living in the woods-yuck! Good luck to your babies hope the cats stay away when they fly!
I'm totally confused about everything. Three doctors and they all seem to be speaking a different language. I purposely asked the osteo doctor about TMO because I felt from talking to my Rheumy that his ideas weren't embraced. I did have a viable subcondral fracture in my knee-that's a dent (almost microscopic). When they said I had one in my hip, though, I'm not sure if they actually saw it or inferred that it was there because of the MRI signal intensity and what they are seeing now also. The actual wording of the Radiologist was that "high T1 signal intensity suggesting a subcondral fracture", but I don't think he is knowledgeable about TMO which looks like that on an MRI. When I ask the Rheumy about fracture he says it doesn't matter, that there are probably microfractures (those are different than sub-c fractures) Hmmm...Osteo & Rheumy don't know about or believe in TMO, and Rheumy doesn't believe in Sub-c fractures??? Personally, I feel it's unlikely that I have 3 fractures when I am on toe-touch weight bearing...I think the hip is TMO only. The knee-yes, fracture-I jammed it pretty bad. So I concur with Rheumy. Osteo keeps being surprised-at the initial MRI "It's a mess in there!", last MRI "very surprised at the amount & speed of healing, fracture is healed", perhaps if he keeps being that surprised, he should rethink it. Sorry to keep being so in-depth with this but it is altering, no stealing away, the days of my life and also, in the future someone with TMO (or AVN) may stumble upon this and be enlightened or kept from having unnecessary surgury.
Blood work has not come back yet.
Hello everyone,
RavenRose, I don't blame you for being confused. I'm thinking maybe we get way too much information sometimes and that just sends us into more overload and frustration. I remember being almost demanding in trying to get answers from the doctors when they didn't have any. All I know is we have to listen to our own body and do what's best for us by instinct and just plain common sense. This is such a slow process and all of us want to be back to where we were like right now. We can celebrate the small victories and just accept the setbacks when they come. All in all, I think all of us have come a looooonnnng way. I still thank God every day that I'm walking and functioning. It's not the way it used to be, but I am capable and blessed that I'm doing what I am at the moment. It gets easier little by little, and for that I am grateful.
I watched three of my four little baby birds leave the nest. It was amazing. A year ago I wouldn't have had the time to stop and witness the marvels of nature. I guess that's one silver lining in this dark cloud we've all been in. One little fellow didn't make it, and I think he was the "runt." He just didn't seem to be aggressive enough to get his head above the others when feeding. I'm going to have to get a ladder and remove him. I think I'll bury him next to Tom.
Paul, I still giggle at the hoovering. So glad you're back to work and all the progess you've made. That's just wonderful.
Have a good day, all!
Alexa
Good morning/afternoon!
No one has contacted me about the blood test results, but when I went to my clinics personal page they have me scheduled for an appointment next Wednesday w/Rheumy. he had said he wanted an appt. after the MRI to discuss it & the symposium, etc. Will post afterward.
Paul, Minneapolis/St.Paul is relatively close to me, easy day trip and the Mississippi begins there (in Minneapolis. it is the St. Croix river). If you are thinking of relocating that would be a good choice as they tout it as being the friendliest & cleanest of the large cities in the U.S. My brother-in-law was in charge of engineering the sewer system, he now lives just north in the rather quaint, touristy town of Stillwater. The land around the Mississippi is very hilly, it is called the "coolies", wonderful, high ground. This glacial area actually begins where I live and gets progressively hillier as you go west. The culture is diverse in Minn. & many of Norwegian decent (my Dh's fam is from there). Be prepared for a lot of snow and sub-zero -*F in the winter tho. If you prefer warmer climates, you might consider the area where Alexa lives.
A Phoebe is a medium-sized, greenish & gray bird of the flycatcher family. They hover in the air to grab insects. Sometimes, a local bird-a "cowbird", will lay their egg in the Phoebe's nest and they will take care of it, unfortunately at the expense of their own kind, rather funny to see the big baby cowbird being tended to by the smaller parents. The bird life here in the wood is astounding! That must have been a wonderful & lasting memory about climbing the tree & baby birds, Paul!
So good to hear that you are off the pain chart in the right direction now, Paul! The more you use your leg now (within reason, passively) the stronger it will become, too.
Alexa, this began in my ankle and it was almost better last summer before I re-injured it, I could do almost everything except walk on uneven ground-that was 2 1/2 years after. I was just so happy to lose the crutches after a year that the occasional pain was bearable but the improvement was slow. Glad you are able to enjoy the best parts of life now! Sorry about your little hatchling :(
Really wish I could hoover, house needs it badly!!! Cold here, too-no apples this year as the blossoms froze. One of the companies I design merchandise for wants some new designs for their next year's line so I must force myself to it-deadline in two weeks for sketch-ups.
RavenRose,
If you're up to it next Wednesday, please post your discussion from your appointment while it's still fresh on your mind. If you need to rest after that, we all understand, but I am so anxious to hear what the doctor has to say about all of that. You seem to be getting much more information than the rest of us and it's always so informative.
When you said you had a work deadline, my stomach sort of tightened up. I have to ask, can you create as well when you're under deadline? Plus having to deal with this situation and pain. As a professional you can probably handle that very well. I know that I get photos from people who want me to re-create their holiday pictures, etc., on canvas and I immediately freeze up. I was asked to paint 20 ACEO pictures from a large retailer here in North Carolina and it felt sort of like factory work. I didn't feel as creative, but managed to put out some decent work. It seems that I do much better when I have no deadline nor "do it like this" on top of me. I guess that's the sign of an amateur. But I was wondering as someone who is a career professional artist how that affects you?
Off topic, I know, but sometimes it's good to talk out of the box.
BTW, Paul, I too loved your lovely bird story. I had a great visual on that.
Alexa
Alexa, I don't like doing "custom" work and as a rule won't do it...I feel the same way you do, but at the same time you have to be a bit thick-skinned and confident in yourself...not everyone will like what you do all the time so you just put it out there and if they take it they do, if not, someone else will probably take it and love it. Art is weird that way-LOL Not having to do multiples is one of the reasons I like commercial art-I make one "master" and that's usually the end of it, on to something new. If they don't like what I come up with, my publisher will promote it somewhere else. I am definitely NOT up to it right now. At this moment I'm trying to psych myself up to do my "sponge bath" and wash my hair...absolutely no energy. One thing I haven't heard anyone mention and I am worried about whether they will have found that something else is terribly wrong, is that I don't feel quite right. Hoping that is just the meds and a bit of depression.
Wow, Alexa! 20 paintings-that's quite an undertaking...daunting to be sure! I can see that might cause a little burn-out, though. Do you sell anywhere besides Etsy? Have you ever contacted a publishing company?
Will definitely update right away after the appt. I recently read that hydrocodone can affect liver protein tests by as much as 40%, not sure if I mentioned that before. If anyone has any questions that you'd like me to ask the doctor, please let me know and I will.
Paul, BTW, I did get the MRI CD for my knee & just the report for the 1st hip 1...you have to go through a process to get them. Doing that right now for this MRI and the radiologist's report. It takes a week or so. Having the actual reading was very informative as when the doctor called he was rather brief & left out much important data from the report w/the 1st (hip) one.
RavenRose, the "feeling not quite right" is normal. In the midst of this ordeal there were some days I simply did not feel like getting out of bed....absolutely no energy. The following day, though, it was a 180-degree turnaround. There is simply no way to tell how you're going to feel from one day to the next. It's a bizarre element of this condition. I tried my best to figure out how and why that happened, but simply blamed it on the meds also. Seriously, I could get a lot accomplished one day and then feel "funny," fatigued and just flat-out raunchy the next. The sponge baths and hair washing were a major event and usually were all I could get done for the day. That seriously is a significant day's achievement.
Even now I have swings in energy level and "sickly" feelings from one day to the next. I hesitate to make plans from day to day. Just don't know what's in store 24 hours ahead of time. I try to make all my appointments, meal dates, etc. before 4 o'clock in the afternoon because I've usually used all my energy by that time. Dinner plans at night are hit or miss. But then again, I'm also not 22 years old anymore and that may have something to do with it. On the good side, I'm 100% self-reliant now and eternally grateful I have reached this point.
The 20 paintings were the 2.5x3.5-inch size (ACEO), but they still take me about an hour and a half to do. I spent a solid week getting them completed. One thing I learned very quickly is not to waiver from my payment policy. I reluctantly agreed to invoice them and then it took forever to get paid. I didn't think I would have a problem with a large established retailer, but apparently they are the worst. Lesson learned.
Etsy is currently the only place I sell. I have a customer who was with Yahoo-China who buys my ACEO's and then resells them on TaoBao (China's equivalent of eBay). I have not really tried to "go big" at all as I also had my court reporting business full time. Now that I have more free time I may consider doing some other things with it. Thanks for asking.
Once you get your bathing and hair done, I hope you will feel a little more creative. Feeling clean is a good start for fresh creativity.
Alexa
As much as I don't like to hear that you aren't feeling well, Alexa, I do take some comfort in knowing that you seem to be experiencing the same symptoms and it may be the nature of the beast, so to speak. Last week I was finally feeling better and even got some work done, someone even remarked that I had more color in my face. This week I feel totally devoid of energy. I don't remember feeling like this with my ankle. What you described is very familiar.
I never heard of TaoBao before, interesting. I have a lot friends on Facebook who sell through Etsy and some have them have problems with people not paying, would definitely keep a strict payment policy also make sure that if your work is reproduced that you will get royalties from each sale or an amount equivalent to, at the onset and retain your right to the original. It must have been exciting to get that large order, though, I think we've all done the tedious, mass-production thing-LOL.
I have committed to do the request from my publisher. They only need 2-3 this time, and they are all digital. Of course last time it was 5 & they didn't like one of them so I made 2 more and they ended up taking them all, even the one they didn't care for.
We set up a motion detecting camera in our yard to see what goes on in the night. I posted a photo of our first night's "catch", kind of neat, also a photo of my newest release which was never quite finished before I got the "condition". They say it is doing really well.
OMG, RavenRose, your new Bath work is fantastic. I said to myself, well, this has got to be some sort of Freudian desire at play here. I can certainly understand the motivation of the subject matter. It's just perfect, and I so admire your talent.
That is one big raccoon, wow. Mine obviously aren't taken care of as well as yours. As an animal, I would want to live on your land. I have a feeling you're going to get footage of some really interesting creatures.
Paul, I'm sorry they've turned the implant monitoring up on you....those crazy aliens. You must really be doing too much and skewing the data, and they're trying to slow you down.
But seriously, I hope tomorrow is a much better day. Just take it a little easier.
How do you two know so much about birds? I should really have stopped to smell the roses many years ago. Everything in my yard is a wren, simply because I don't know the difference.
Today was a good day for me. I sat for quite a long time and didn't have as much back pain. I decided to use the wrap-around back brace and that really helps. You two might consider that at some point when you're sitting for long periods.
Just as an aside, I hope any newcomers to this thread find the beginning and not join in the middle of our hoovering, shagging, bird watching, alien diagnoses, etc.
Have a good, pain-free weekend everyone!
Alexa
Alexa, that's funny about the Freudian aspect of the painting, but it's ironic, for sure. We don't have time for that now though as we need to get into the spaceship and rescue Paul from the aliens with our ray guns!
I got some early info from the doctor in the mail this aft. The blood test was for "hypercoagulability" (say that one 3x fast). It was negative. As for the MRI he writes: "the radiologist commented on a potential new area of edema suggesting a fracture in the pelvic bone above the hip joint itself" the confusion continues -lol- that is quite an ambiguous statement.
Just got back in from "directing" Dh on the set-up of our new raised garden beds. It's a chill and brisk evening and being out in it for an hour was sooo refreshing, I haven't felt so good in a long time. Going to start some romaine and lettuce seeds in the house this weekend.
I have the same odd pains, Paul, one minute it's burning, raw pain in the groin, that leaves, then it feels like I have a tight band around my thigh, then.....on & on, front to back. Hearing you too had the lack of energy is also reassuring. Your "crawling" feeling sounds like muscle coming back-good aliens. Very interesting about the cuckoos & warblers, love to hear about things like that. Our first spring bird is the American Robin, different than the robins you have, but such a welcome sight after our harsh winters.
Glad your back is feeling better Alexa! You guys are probably out on the time tonight...I hope so! Have a great weekend!
Hi Pam!
So good to see you on the thread, and I hope you've been feeling well lately. How's the romance with Mimi? Is her fellow any more receptive?
RavenRose, I don't remember having any cold or flu prior to this condition. In fact, last year I was thinking I was very fortunate not to have had any of that for a few years. Knock wood. The only thing I can remember is sitting at my desk working and I leaned to my left and felt almost like a "tearing" sensation in my hip joint. It did not hurt that badly, and I didn't think any more about it. Some of the theories I've read said it could be microvascular and I'm just wondering if I tore some blood vessels or whatnot that may have started this whole thing.
Good luck with the doctor's appt. tomorrow! I'm very anxious to hear about it.
Alexa
Hi guys! I'm still here and hoping that all the set-backs and pain you're dealing with is easing up! Paul I'm so happy you've improved and glad you can help your wife with the vacuuming! Sure would be nice to have someone to help with that here.
Loved all the pictures too! Thanks for uploading them. I've been busy on other threads/blogs, but I never forget about you all and constantly keep you in my thoughts and good wishes that you make it through this and over to the other side of complete recovery.
Thanks for hanging around, all you've posted can help so many that may be looking for info and support but just haven't posted yet.
Don't forget I think about all of you constantly and read all your posts! You're only a heart beat away from me always. Paul... wish you had Face Book. RavenRose and Alexa do and we keep up with one another there too.
Take Care, and don't forget me either.
Pam
Hi all. Sorry I didn't post after my appt. last night, but I've been rather ill and the day took a lot out of me, also very sore today.
The doctor did go to the symposium but his main objective was OI not TMO. He made another attempt to get me take Forteo for OI, which, again, I don't think I have. He refuses to even acknowledge Ehlers/Danlos Syndrome which I do think I have, citing that I've had 8 fractures in my life, I have not, I fell from the top of a 15' slide,age7, and landed on my feet, luckily I only broke 1 bone & lived to tell about it the other of 2, was a small stress fracture in "the most broken bone in the body (foot)". Nothing as an active adult til now...microscopic dent in knee. Hip "suggests fractures but I think TMO (his own diagnosis). It is frustrating to say the least when Drs. get hung up on one thing. I asked if nonuse could cause 30% bone loss and he said yes so I feel that if I'm ever going to get of this I am going to have to take the pain and do non-weight bearing PT to rebuild, which I had him set up for me. Foreo is one of the most expensive treatments out there & not indicated in this instance...there was a lot of double-talk and illogical reasoning in an effort to get me to take it (shaking my head). I'm tired of it all.
I got the radiologist's report and it was a sthey said, much improved (but still pretty much edema) in the old area, new, albeit, small area of edema in a different area, same hip.
Paul, your wetsuit adds an entirely new aspect to the alien/Lady Gaga tin hat, going to the door image. haha-you are almost all better now, I've read that there may still be some pain for months or years after the MRIs show total healing, but the key is how well you can get around. The worst is well behind you! I am so happy for you!
Alexa, you've been better for a while now except for your back. There have been cases where this TMO has gone into the lumbar region, hopefully not the case. You can function and that's what's important. I am happy for you too!
I'm feeling a bit like Dorothy in the Wizard of Oz here, happy her friends were helped but nothing in the wizard's bag for me...wish I had some ruby slippers but I don't...
RavenRose, it sounds like you're not having a good couple of days. You said you were ill....is this like a flu or cold? Honestly, after having been through this for over a year, I'm thinking just time is the only reliable cure. Doing PT probably helped, but I also have a feeling I'd be in the same spot if I didn't do it. Anything you can do to keep yourself moving, though, is good. I haven't even considered the Forteo meds, etc. I'm dosing with large amounts of Vitamin D and at least 1200 mgs. of calcium a day. I'm also taking a vast amount of other supplements and can really tell if I miss a day or two.
Paul, I really hate to hear you had a slip-and-fall. Good thing you didn't bust anything. I know you probably had like 5 seconds of holy terror going through your mind when you landed. That's my biggest fear right now is falling. We have all got to be very careful with that.
I wish I had more substance to add, but I'm just kind of blank today. RR, it's going to get better....seriously. I don't even want to discuss the depths I sunk to in frustration a few months ago. But it will get better and you'll be functioning in no time. I can totally relate to where you are emotionally. It sucks. I just wish I could show you how much better it's going to be. In the meantime, keep on posting. I'm starting to feel this family thing going on in this thread...ha. And yes, cuckoo is universal, I believe.
Alexa
Good gracious, Alexa!!! Your making it impossible for me to wallow in my own self pity. That is tooo hilarious! You found our long lost brother and it looks like he's at command central, no less, hat and all! Wow, next time PM me before posting something like this so I can take a pain med cause I almost cracked a rib laughing!
Seriously, thanks to both of you for being here and trying to lift me up. When I told the doctor yesterday that this tends to heal itself in up to a year or so, the doc said in his effort to sell me on the Forteo, "does it?" "are you sure?"...kind of doused all my hopes.
In vetting the TMO specialist a little further, I discovered he also owns a bait & tackle shop, will do your income taxes in the back and offers treatment for hemorrhoids. Talk about your multi-tasker.
RR, use your mind control today and tell your body it's not going to hurt and you're going to have a good, productive several hours (literally). Eat some good food and think good thoughts. Sit in the garden, play some good music. Dream up some creativity.
Paul, enjoy your day off and stay off the slopes!
As they say here in the South, "I'm going to get my hair did." That always makes me feel like a new person.
Have a good day, everyone!
Alexa
To address Paul's Q: No family history of OI and don't fit the type...I'm average height. I do fit many of the EDS symptoms: extremely flexible, long, thin limbs, and some weird ones like local anesthetics don't work on me. The Rheumy is like a proud Papa with his perceived, actual OI "case" (me), I'm afraid if I got the genome test to prove otherwise he would be heartbroken, seriously. On the other hand, I need help & for him to give some credence to things other than his pet project. I guess I'm on my own here now and it's time to focus on life.
Alexa, I know someone from "your neck of the woods" y'all talk funny-ha-just kidding...sort of :) Have fun getting your hair done. I'm looking just like Rapunzel these days-hope to get to a salon someday.
Dark and stormy day here..I like that...
I must be losing my mind, too, b/c I thought I saw a post from Alexa. Luckily I have a photographic memory. Bet it feels nice to gt a bit pampered. Hope you didn't take offense at the talk funny thing, I'm sure Midwesterners sound pretty funny to you, as well. Some of the people around here talk like on the movie "Fargo". Love listening to different dialects.
Wish I hadn't agreed to the art project as I'm in about as much pain as I was a month ago, again...thinking I should spend a few days in bed w/little movement.
Hi guys how are you doing? Have all the bumps in the road gone away yet? I hope so and that your pain levels are better.
Their working on the system to upgrade the design and one of my posts is gone too, probably just a temporary glitch! You weren't losing your mind RR.
How's your work going? Are you real busy with you lovely art?
Paul what are you up to besides returning to work?
Alexa I hope the weather isn't too rough right now. I know when I visited your area I just couldn't handle the humidity. I was staying in a hotel and the windows were all fogged up from the dampness. As soon as you walked out the door your glasses would completely fog up. It was horrible but I was in Parris Island for my nieces graduation from boot camp in 2001, it was one month before 9/11. She's now a police officer and wants to go into the FBI.
Well I'm doing okay, but busy with osteoporosis awareness month (May). Hope you guys get to read the articles I write with the 3 bone foundations on their awareness campaign. Even though you guys don't really have typical osteo, we need to raise awareness real bad!
Hope you all have a great weekend and feel better soon!
RavenRose, you must be talking about my Facebook post where I was gloating about my haircut and color today. Yes, it was fabulous and I can't wait for you to get to a salon also. Take a day or two off from the stress of the deadline and come back to it refreshed. No, I absolutely did not get offended with the Southern drawl speak. I think it's funny, too. Trying having to transcribe it sometime.
Pam, the humidity is really starting to kick up here, and you're right, it is dreadful. I think about mid-July and driving downtown, finding a parking garage and dragging three pieces of equipment three blocks to a high-rise office. This is all in a suit and heels, mind you. I was usually drenching wet by the time I got there with make-up running down my face. Not a pretty sight.
Pam, I look forward to readhing your other threads and posts. You have a huge job, but so important.
Have a good evening, all!
Alexa
Hi guys, have always loved the Stray Cats but Brian Setzer in particular. My fav song is "I won't Stand in Your Way."
The big band stuff (Brian Setzer Orchestra) and also with Gwen Stefani was really cool! Brian did some great remakes of Gene Pitney songs, and the one I like is Town Without Pity. I used to get my hair cut by Brain's hairdresser (hairdressers prob the wrong term) and heard some interesting stories about visiting J. P.'s and Eddie Cochran grave.
Hope your Cinco de Mayo is going well and your pain levels are easing up. Take Care!
RavenRose, how is your pain level this weekend?
Paul, I have this image of you running around the shore in a wetsuit and spikey hair with your wife following behind you with a harpoon.....:) thanks to RR.
Pam, didn't know you were such a rocker!
Just thought I would let you know that post-recovery your appetite may come roaring back like mine. I dropped 20 pounds during this ordeal and have quickly regained 8 of them. The meds are definitely an appetite suppresant and cutting back to almost nothing I have a new-found love of food now. I think because I missed it so much over the past year. What a see-saw this condition is and it really affects your life on so many different levels.
Hope everyone is having a good weekend. It's very overcast here, but warm. I'm off to make a seafood gumbo and low-cal chocolate mousse!
Alexa
Thought I'd share this report. It's from 2001, but I don't think there's much new. It mentions a virus as a possible etiology, which I had thought, doesn't seem like it panned out though. http://www.actaorthopaedica.be/acta/download/2001-4/02-crespo-silvestre-.pdf It also speaks of having it go from the ankle to the foot, which is what happened to me 3 years ago. The ankle lasted for about 8 months then it went south and that also had a similar duration...I guess I can expect the same time frame with my hip and knee; however, the treatments aggrevated it and I never totally quit using it b/c I didn't know what it was at that time. Also, there was no fracture, it only hurt when I tried to stand on it w/full weight. With the hip you're always putting some force on it. I remember my foot turned a dark pinkish color which would indicate regional pain syndrome. Hoping this "new" spot doesn't mean 8 more months from now, seemed to have jumped from the femur to the pelvic bone (hip socket).
I did bring up to the Rheumy that I might have it in my other hip, sometimes it hurts almost as bad, but he said no---same type of pain though, no edema. hmmm....
Pain was very bad for a while just sitting this weekend, then it almost disappeared for a time and came back. Last night I had some very strange things going on. The alien crawly thing was happening all over, feet, legs, arms, even my stomach. After I laid down I had a sensation, the only way to describe it would be "electrical", in the left side of my head by my ear, it actually made my ear hurt, kind of scary, to be sure.
Looking forward to appetite returning. Never had "gumbo" but I love seafood. Sounds like some gourmet going on there, Alexa. Do you watch cooking shows? I like a few on PBS-
Pam and Paul, you both seem to have similar tastes in music! I like U2, saw them twice, then I go through phases, mostly just keep classical playing, esp. choral. My dad was jazz musician.
RavenRose, it sounds like you're going through a strange period. I really hope this week brings you some relief. That article you posted was probably the most comprehensive I've seen...thanks. I noticed they did mention that OI folks were predisposed to this. Not that that is any consolation, but interesting. I don't know how I missed that one after months and months of research. Your detective skills are very good.
As far as gumbo, it's just a roux mixed with okra, parsley, celery leaves, stewed tomatos, shrimp, crab, clams, etc. I do watch the cooking shows sometimes...Emeril is my absolute favorite. His recipes are very close to my taste, plus he's a very colorful character.
Very interesting your father was a jazz musician. Is that where your artistic abilities come from? The closest I got to a professional was that I grew up with John Mellencamp....anyone familiar with him? In fact, he was my first boyfriend in 3rd grade. He later dumped me for a girl down the street, though. He was kind of a meanie in high school. He stood up in the bleachers at our high school basketball game, pointed down at me and said in front of the entire crowd, "Look at that huge piece of dandruff in Alexa's (sic) hair!" I was mortified. Good thing he didn't notice the toilet paper I was dragging from my shoe out of the bathroom. (It wasn't dandruff, BTW) Some things you just never forget.
Paul, I looked up the art movement you mentioned. Beautiful period and very interesting history. I like your taste very much. Glad to hear you're doing so well. You sound much chipper in your posts!
Have a good day, everyone!
Alexa
That is pretty cool, Alexa. Went thru my JCM phase "Scarecrow", "Cherry Bomb"...he's done a lot to help the farmers, sorry to hear he picked on you, tho. "We were young & we were improving..."...hopefully he's improved & doesn't tease girls anymore-LOL.
Your recipe sounds yummy, never had okra. We don't get satellite or cable here b/c I live on the side of a steep ridge so don't get the cooking shows, but PBS has good ones. Emeril is out of NOMA, Cajun style...I like him, he seems sweet.
Yes, Paul, I think Joshua tree was U2's best. Bono's voice was like a bell, almost ethereal. Will def look up Eric Whittaker, nothing like choral or Enya on a dark , rainy/snowy day. Millais is wonderful, always something interesting to see in his works. I tend toward the more conventional in art, less modern "art for art's sake" find it a bit affected.
My dad played tenor sax mostly, but could play almost any instrument, he was literally a genius. He started out in the Army Band, actual met Elvis while stationed in Germany. he wasn't a fan of that genre of music but said that Elvis was a humble & decent guy.
Not to be cliche', but there is really no where I would rather be than where I live, as far as vacationing, except Europe (for history & architecture). Afraid to fly, unfortunately. We have seasons, skiing, water, and run the gambit from tropical to arctic weather, annually, sometimes all within a 24 hour period during fall and spring. The extremes I don't care for, too hot/humid, too cold much of the time, prefer cool. If we need city, there are 3 major relatively close-by. Lakes Michigan & Superior are within 1-1/2 drive. My 3 acre yard and garden are totally secluded and enchanting & I value every moment being out there.
The sensations were more than likely b/c of the meds. As you know I've not had an easy time of it with them and lately may be worse. Hoping they don't kill me but not ruling it out. I've read that there are varying severities and durations of TMO. I liked the article b/c it addressed all the points in a nutshell...still thinking it had to do w/virus, possibly mumps, like chicken pox can cause shingles. Preg women may be exposed when their older kids get vaccinated. B4 my ankle, I had a virus, huge, swollen gland on left/neck, but it wasn't the worst virus so could go unnoticed. I thought of that right off when my ankle started to hurt. My knee was an injury but that may have triggered the nerve response which is what they say TMO is, a denervation syndrome.
Paul, I haven't been on vacation in a while obviously, but I do favor the tropical climates. In the States the coastline in California is rather amazing, and Pam could definitely tell you more about that and other great places in CA. Big Sur is famous and breath-taking. Just don't find yourself stuck on the I-10 highway like we did, it's a five-four sit in traffic. I've never been to the vineyards in California, but that is on my Bucket List, along with the Grand Canyon.
I've been to Mexico and the resorts are beautiful, but the poverty there was really despressing. For high energy, I love the charge of going to New York for the plays and restaurants, but it gets on my nerves after about 3 days.
North and South Carolina have some of the most beautiful beaches in the world; clean sand and wide, open beach. I live here, so obviously I would say that, but it really is a great area to visit and a good family atmosphere. I think the best place I've been, though, has to be St. Thomas. I've been there twice and find it to be a tropical paradise. I got engaged there, back in the day, and it was just so romantic. I still have the ring, but not the husband. ;)
So encouraged to hear you're exercising....that's great.
RavenRose, your property just sounds wonderful. You do sound so well-read, and I can see why now. You don't have the distraction of that much TV. As for me, I can't imagine living without DVR, 50,000 TV stations, Look Back on Demand TV, etc. Hope you're feeling better today.
Alexa
Alexa, I didn't notice anything wrong w/your grammar, more interested in what you say than how you write it, but I have noticed that you have very good grammar. :)
Sounds like you have been quite a few places, Alexa. I'd like to visit NYC. St. Thomas must be beautiful. People around here don't go too often on vaca but when they do, Bahamas, Hawaii, Cancun or cruises seem to be most common. A friend of mine went to Africa twice, once to Kenya and then to South Africa another friend went to Rome. My MIL lives in Florida so we may go visit next winter. After what happened to my MIL's husband not so sure tho. Isn't Hilton Head in SC? If you've ever seen the Meg Ryan flick "French Kiss" the beginning where she's taking therapy for her fear of flying-ha-that's me.
I rarely watch TV or movies. PBS, CreateTV, American Idol and we have local Indy channels....Do like video games, tho...as far as reading, I like classics there, too. Tennyson, Tolkien, Mallory, etc. same for TV-Masterpiece Theater Classics Brontes, Dickens (love Little Dorrit), Elliot. What do you like?
Paul, I didn't know you had tornadoes. Did it do any damage? We had one last year just a few miles from our house. The power went off so we didn't know what was happening. I am posting a picture the neighbor just up the road took of it. Luckily it went through farmland, one house was completely exploded though. we went looking at the path it took-wow! It lasted a long time. Storms & tornadoes seem to be getting more frequent and severe lately.
As far as Millais, I don't think I could pick a fave, more some I don't care for. His use of color and texture is amazing. The symbolism in Isabella is prob the most interesting. Ophelia and The Vale of Rest are truly haunting.
Not everyone has a recurrence with TMO. Hopefully neither of you will, fingers crossed.
Pain has hit a plateau, no progress or regression. Thinking that I am having med problems when they start wearing off, it's actually a little withdrawal between doses. I got one of my project finished and only until Monday to do another...
RavenRose, that tornado picture was unreal. I can't imagine going through one. I have been through a hurricane, and that was just surreal.
Hilton Head is in South Carolina, and is one beautiful place. I would highly recommend a visit if you get down this way. Just a little gossip trivia; John Mellencamp is dating Meg Ryan, according to my Indiana friends. Funny that you mentioned her, and I have not seen that movie. I love everything she's in, though.
I hope you have your other project done...Monday is fast approaching. The weather here is really very nice.
Also glad to hear your pain level is holding steady and not increasing. I hope you and everyone have a great weekend!
Alexa
Paul, I just love real-life ghost stories. I think it's really cool you may have a spirit in your house. I think we had one in the house I grew up in....our dalmation would absolutely not go into one room of the house. He would wimper and cower if we forced him in. We found out eventually that a little boy had died in that room. We also had odd events throughout the years related to that room.
I have lived in both North and South Carolina, so I can speak from some personal experience. Unfortunately South Carolina is ranked something like 50th in the nation in terms of education. North Carolina, on the other hand, has two of the top universities in the US -- Duke University and North Carolina at Chapel Hill. Of course, some of the best medical education you can get can be found at Duke and UNCC. You may have driven by them, at least, if your company has offices here. I graduated from Elon University, which is about 20 minutes west of Durham and it has become one of the best-ranked small schools in the nation also. I really don't think I would make the admissions requirements now as they have gone up dramatically at Elon. When I attended, there were only about 2,000 students and I believe they have maintained about that level. It's a great school if you want something a little smaller.
Hands down, if I were to start over and raise a family, it would be in North Carolina, and I would live in the Raleigh-Durham area. Good schools, beautiful properties and a good culture. South Carolina is different culturally and the only place I would live there would be on the coast. It's also very hot. I lived in Columbia, South Carolina when my husband was in law school and it was kind of miserable. In North Carolina we have easy access to the mountains (Boone, Asheville) and also easy access to the coast and beaches. People are very hospitable here also.
Yes, North Carolina just voted against same-sex marriage this week. It's been a hot topic on the news. We're considered in the "Bible Belt" and old traditions die hard around here.
We're also a state that loves its sports. Duke and North Carolina State and UNCC are nationally known basketball teams. In Charlotte here we have the Panthers NFL team. We also love our trees and green spaces!
Well, the Chamber of Commerce is signing off here....don't work too hard!
Alexa
Alexa, you've got rent French Kiss! You would LOVE it! That's my fave Meg Ryan film. She and John Mellencamp would make a good couple I think. JM has spina bifida (sp), I've read.
I went through a tornado in a car once...total freak out-scary. It just hit out of nowhere. We were in a hurry to get home from town b/c my son was alone and it felt so weird out that we knew even without radio that it was tornadic. When it hit it was like going thru a car wash, the rain was suds, had to open the door to guide DH to the shoulder. My other son was in the back seat. When it stopped, a mile up the road, a farm hand's mobile home was GONE, insulation hanging from the high wires. Right now I can't get into the basement, so I really worry when storm warnings are posted. Last year around here was bad. The pic I posted was from up on our ridge about a quarter mile away. I think talking about the weather is an international thing. I like sunny days & rain...it's like the planet has moods, having it sunny every day would be like the village idiot with a perpetual smile...no depth or character.
You are both scaring me with the ghost stories. I've had a lot of weird things happen in my life with ghosties, as well. Still like to hear stories.
Alexa, you live in the ultra conservative South, I am fairly liberal so I haven't brought up politics, but I'd have to say "live and let live" to the amendment. I've known gay ppl from little on and it was obvious that they were born that way, the law won't change that. Paul, I keep up on the news and not sure if I fully understand the Anarchist movement in Britain. I get the frustration of the working class with regard to the economy, but not sure why they take it out on the royal family as they have no political power.
After I posted about the leveling off of pain it returned with a vengeance. I don't know what's going on here. It was as bad as it was two months ago and this morning when I woke up the other hip hurt nearly as bad and that's while taking meds. Weepy day today, for sure. I just want to go back to being "normal". I remember 3 yrs. ago, about a week before my ankle, thinking one morning how amazingly good I felt, not one ache or pain, super active... :/ Sometimes it just hits me, "how did thing get this bad?".
Have a nice weekend!
RavenRose, I'll make sure I get that Meg Ryan movie...thanks.
Your tornado experience gave me a chill. If you weren't frozen from fear, then it had to be the most horrific moment of your life. You and your family were very lucky. I would still be having bad dreams.
I'm disheartened to hear your pain came back so badly. I think you're probably in that see-saw phase where it does that. Just when you think it's leveled out, it comes back and kicks you in the butt, so to speak. Being in a believer in the mind-body connection, I'm just wondering if your Monday deadline put you into stress mode where it's aggavating the pain (even subconsciously). There is really no explaining it, though, and you just have to ride it out the best you can. Easy for me to say now that I'm past the worst of it all. And yes, there are times when even the medication doesn't seem to help. I'm hoping today finds you much improved and the beast has decided to give you a break.
Happy Mother's Day, by the way! And Happy Mother's Day to all of you on the thread.
Alexa
Hi Paul, Alexa and RR! Boy I've missed out on all my favorite topics, but keeping up with you just the same. Travel, music, weather, ghosts and am probably forgetting some.
Paul, do your really talk to Phoebe? That's the ghost right? Glad she's watching over you! Cats are so sensitive it's not surprising they'd be freaked out. To give you an idea, I watch Ghost Hunters, Ghost Hunters International, Dead Files, Long Island Medium and Ghost Adventures. Dead Files is turning out to be real good. A sensitive and a hard-boiled NY detective handle the hour of the show. I like they way they don't communicate till the reveal at the end. Long Island Medium is light-hearted and a interesting reality show where they follow the medium around in her daily life.
RR, I like the Beach Boys, but wasn't a real fan. I preferred rock music in my younger days, and went to many concerts where I messed up my hearing. Ears hurt and rang for days from all the amps they used before anyone worried about protecting your ears. Oh and Masterpiece Theater and Materpiece Mystery is our 2 favs and have been watching PBS since the 70s, oh I'm old. Did you watch Downton Abbey? Paul said he didn't, because he doesn't watch much t.v. but that show was fantastic and can't wait till season 3. What will happen????? Oh check out this funny pix I posted in my profile from the show, I think you guys will appreciate it.
Alexa, whats the name of the Island right off the coast of Beaufort? I could look it up but thought I'd ask you anyway. I went there and have never been bitten by so many mosquitos in my life, it was really pretty. I also went to Hilton Head but really just drove through trying to find my way from the airport (in Savanagh at night) to Beaufort-what fun. Ask for directions many times even though I had a map.
Paul and RR do you know why the pain is worse? Is this just the cycling stage? I hope it lets up soon. Alexa how are you feeling? Your hubby is an attorney? Boy two legal minds in one house-yikes :o)
Belated Mothers Day, and I like what you said Paul in wishing those who wanted to be a mother more than anything.
The Cal coast is gorgeous, and the northern coast is stupendous. Not saying So. Cal isn't but No Cal has such dramatic scenery. If you ever get to highway 1 don't miss the 17 mile drive in Pebble Beach, it's a not to be missed drive, and if you golf a great course.
Alexa, you metioned Inter 10 (old route 66), where were you? I've battled that darn interstate all my life and getting from here to UCLA on the 10 is a killer with the horrible traffic. Grew up in the San Gabriel Valley near the Rose Bowl, LA Arboretum (Fantasy Island, Tarzan movies filmed there, among others), oh and the Santa Anita Race Track. We had peacocks in our yard all the time from them hoping the fence from the LA Arboretum.
Well I hope you guys get better and the pain lessens! Take Care. Paws crossed!
Got my project done, but it wasn't as good as I would have liked. I think that's it until I'm feeling up it. My pain has been up and down. Sometimes it's almost not there and then it's as bad as ever. Seesawing is the perfect description. This thing is soooo strange. I started taking vitamin B12, it may be coincidental but maybe it helped???. The whole thing is starting to wear on DH (or nsdh as Paul aptly put it), not much I can do about it, I don't lay in bed w/a bell-lol...
Paul, I hope your pain is brief. Are you walking without any aids, now?
I think the royal family brings in a tremendous amount of tourist revenue, that's a main reason people go there. Who'd want to see Buckingham Palace if it were an office complex, really? I know they're a tough lot, but I feel for them when they're harassed. They kept the place together during the war, did they not?
Vancouver is supposed to have fantastic sea life. Are you going diving, Paul? British Columbia is one of the most beautiful places in North America. It has it all, mountains, ranches, seashore and a great climate...
I'm glad that Phoebe is a friendly ghost, a good spirit, not all of them are. We moved into a huge old farmhouse when I was little, there were hex signs drawn on the walls of the out buildings...my mom who never believed in such things said she never felt alone there and was happy when we moved. I was very little but I remember some strange occurrences, too. I have a friend from Indiana, her and her family investigate ghost areas. They take trips to frequently reported sites. She has video and audio of some very creepy things...she has a website about it. Just read that there have been the first crop circles of the year in Wiltshire-congrats!
Pam, I didn't catch Downtown Abbey, I was at peak pain when that was on and it took over my mind, couldn't concentrate on anything else. Maybe I'll buy the DVD. You live in such a different climate...dif vegetation, everything in southern CA...I do some California Dreamin' in the dead of winter-lol...I really LOVE the green of spring tho so maybe just a visit :).
Alexa, how long was it until you were able to put some weight on your leg w/crutches? Did it still hurt a bit when you started?
Anyone ever do any genealogy research... I recently found out that my oldest know ancestor was from Pas de Calais, France...Catherine Luis or Luique- 1640's. Didn't know there was a French connection, so was pretty excited.
My heart is breaking that the weather has been so nice and I can't get out into my garden. I've expanded my range to the porch now tho and at least I can enjoy the spring air.
Good afternoon, all! Pam, it's been quite a while since I was in CA, but I've been twice; once for bid-ness (as we say in the South) and the other just visiting. The first time we drove down to San Diego, and I believe that's where we got stuck on I-10. Stayed in the Los Angeles area. The other was visiting Newport Beach and the surrounding area. It was all great, though, and I was so impressed with how clean the nice areas were. This was post-husband, so ex-husband would be the right term. The good thing is I got to keep the cat (along with the condo mortgage and student loans). Ha! Life takes its twists and turns.
The area you asked about as far as islands could be a couple of places on the South Carolina coast. Charleston, SC, is definitely a place to see with the history, and there is Fripp Island, which may be what you're referring to. Lots of old Spanish moss hanging in the trees and truly a great place to visit. Paula Deen opened a restaurant in Savannah and that's a good tourist spot also. Hilton Head, of course, is located on an island.
RavenRose, I believe it was about five months before I was walking without an aid. (Seven months from the first twinge of pain) It was not painful, per se, but I was so guarded with that hip that I'll just say it was uncomfortable and not painful. If there had been ANY pain of significance I wouldn't have done it. It was more like it was uncomfortable and kind of sore. It's truly hard for me to explain, but if I had any thought I was doing damage, I would have been right back on the crutch. I remember the first day I actually got up and walked, I called a friend and said, "Well, I'm walking, but it is so anticlimactic." I thought I would be jumping up and down (so to speak), but I wasn't. Very strange. She said, "Well, it's just been soooo long." It was kind of a guarded, halted gait, but I was moving and upright. Let me just stop right here and again say, "Thank you, God." I also had to work up my stamina for a few weeks to extend my walking days. I got fatigued and easily tired, but the progress was there. Today I'm scooting around very well. I wear my back brace most days if I'm sitting for long periods. I'm still tiring at mid to late afternoon, but I'll take it. (Please let me know if I'm repeating myself...sorry)
Paul, love the Phoebe story. Have you all talked about maybe having her released? Meaning having some folks in who do that kind of thing and encouraging her to go on to the other side? From what I've read, some spirits get kind of stuck here and need an encouragement to go on.
Yes, we have a very interesting political situation here with the presidential race. I am totally, 100% hooked on ALL the news shows at the moment and will be like this through November. I don't think we can assume Obama will be re-elected, at least not from the current Rasmussen Polls, who I think are the most unbiased. Gov. Romney currently leads in those polls about 48-42 (though it changes daily). Obama's new "evolved" thinking on gay marriage has hurt with his base and he's in damage control at the moment. This race is ugly now, and it's only going to get worse. Stay tuned if you want to watch some interesting behavior. It's a real study.
And before I forget, RR, my fav on American Idol is definitely Joshua. That guy is gifted! Glad you got your project finished. I know it's stupendous.
Alexa
Yes, we have a real political mess here. I have to say that the way Obama dragged his feet on the issue of gay marrage is what upset his base most & the conservatism on his part for most of his presidency. IMO the Democratics are what the Republicans used to be, and the conservatives have gone extreme, which is an oxymoron in itself. In my state of Wisconsin the whole political thing has gone to extemes, even provoking violence. Our Tea Party governor, backed by some of the wealthiest ppl in America has gone after the working class (teacher's, police, etc.) we are currently ousting him. He was caught on tape saying "divide and conquer"...that is their strategy throughout the country, to take a polarizing topic-gay marriage, abortion, gun control, etc. and rouse the rabble & pit us against each other. It works, as Americans are polarized almost back to Civil War times. Fox News, started by Rupert Murdoch, is particularly responsibe for perpetueting the rift between us, it's kind of like the holy roller church of politics, it's not news, more propoganda & the other networks are owned by the corporate machine as well. I voted for Obama the first time, I don't see much of a difference between him and the other candidate, which looks like will be Romney. I would say I'm socially liberal and morally conservative.
Alexa, Joshua should win-agreed! I started out liking Philip, but he's been off-key so often it's almost painful. Jessica is very good, too, but she has no personality. Actually I think Colton will have the best career of all of them-he's more current.
RavenRose, I know you must have been shocked when Colton was voted off. I like Jessica also (a LOT), but just think at 16 she's too young. At 18, maybe. She blew me away with the Whitney Houston song a few weeks ago. Almost better than Whitney, I thought. Frankly, though, I'm not buying her last-place voting position that one week. That just doesn't pass the smell test to me. Joshua brings tears to my eyes with his passion and voice.
I am watching with interest everything that is going on in Wisconsin. Very interesting stuff.
I was told yesterday from someone who is married to a Charlotte, NC police officer that they are all banned from leaving town (the cops) from June 1st through the middle of September. We're hosting the Democratic convention here in Charlotte the last week of August, and there is solid intel about a lot of very dangerous disruption planned. They fully expect riots. Not a good thing for this nice, quiet, civilized little town. I hope we are prepared to handle whatever happens.
Alexa
LOL - can think of a million things I would rather do than attend a political convention.
Alexa, thank you for the information on your hip/walking progress. I am at 20 weeks now and when I try to put a little weight on it, it's a raw, burning pain, still. Not yet. I'm happy for you thet you seemed to have a lot of good friends who have helped you through this ordeal. Do they know what is wrong with your back? Is this just since the TMO?
RavenRose, you're right, I would rather stab myself in the eye with a fork than go to a political convention.
Your hip is not cooked yet. Give it a little longer. I will say that when it started to finally improve, it seemed to improve pretty rapidly. That's the good news.
My back is kind of a mess apparently. When I was in spinal decompression therapy, they threw out words like stenosis, degeneration, bulging/herniated discs, etc., all from exam and x-rays. The last appt. with my ortho doctor he said that I have scoliosis with a 40 degree curve. His exact words were, "We're going to have to mess with that at some point." I just wasn't in the mood to find out exactly what "mess with that" means. To be honest, I'm sticking my head in the sand on that one right now. I really can't and don't want to deal with another issue after a year like this past one. I'm trying to coast with the recovery I've gotten to and just let things go with the flow for a while. You know the mental energy it takes, and I just don't have any left right now for another major issue.
Have a good rest.
Alexa
I'm sorry about your back pain, Alexa. That doesn't sound so good. I don't blame you for not being up to facing this right now, as long as there's no hurry it might be best to wait until you are stronger physically and mentally. I wonder if it isn't TMO related. I read an old post from Paul where he said his doctor had seen it in elbows and I've read that it can go into one's back to negate that it is only in the weight bearing joints, which doesn't make sense. Did you have your last DEXA scan before the decompression, did it show the back area? Not sure if that would be such a good procedure with TMO.
Are you going to the Olympics, Paul? Are the people looking forward to it? Because England is relatively small, people will probably travel far and wide during it which can bring revenue and a bit of chaos to smaller towns, I would think.
Well, Dh went to a Little League game tonight so we have Idol on tape-haven't seen it yet. Better to watch without commercials anyway.
RavenRose, I'm going to my next ortho appointment on Monday and I will bring up the TMO possibly being in the back. I'm sure I'll be met with an unresponsive reply as my doctor knows just about as much as we do just from reading the literature. None of the scans have focused on the back, and I'm just hoping that time will possibly cure or alleviate some of this. My doctor is solo now since his partner left, and if I see him for 5 minutes, that will be a miracle. If there is a question you have you want me to add, let me know.
I watched an interview with your current governor last night. It appears that he has done some good for your state and it looks like he has maintained his popularity.
Joshua did well last night. I hope we're not disappointed with the elimination show tonight. You can just tell that Joshua sings from the bottom of his soul and Jessica is a perfect technical singer. She just needs to go out and have life beat her up a little bit and she will have the skills of a true pro.
How is your pain level today?
Alexa
Let us know what your doctor says. My Rheumy did the Dxa on my back when he did my legs, at that time it was ok, hope it continues so.
Still haven't watched Idol from last night but on my way.
Pain is better when I rest, hurts when I put any weight on it, so...the same.
Alexa, our governor is truly a legend in his own mind, he can cook the numbers however he wants. Just out today by the state department of Workforce Development: Wisconsin lost 6,200 jobs in April, it's been a steady decline. He has turned his followers against teachers and education, in general, because of the collective bargaining issue, apparently making a whopping 40K per year (average teacher pay) was vile to him (him, being a millionaire with full gov. bennies). He wants WI to be a right to work state-no unions, yet he has the out-of-state backing of national basketball team owners, investment companies, a casino owner in Vegas, and multiple billionaires (obviously, there's an agenda here somewhere), they have, in effect, created their own union and are attacking the blue collar workers of this state. They run "fake Democrats" in the elections. It's like bullying...Again, I'm sick of the whole political mess but will be happy to vote him out. There have been other topics, too numerous to mention that he has, or is, trying to implement. The people of WI fought and were killed by the militia at the turn of the century, last, to organize against ridiculous hours, unsafe conditions, and low pay. We will see if he gets re-elected.
The amazing thing about my windy posts is that I can't type-LOL-totally painstaking...
I thought I would post the findings from my ortho doctor visit this morning. As I thought, this was a 5-minute eval and exam. He did some range of motion exercises with me lying on my back and taking the affected hip, bending the knee and rotating it around in a circle. Although I am much, much improved, there is still pain on deep extension and bending on this exercise after a year. I told him I was so grateful for being able to walk at this point, even though I would never be able to outrun the booger man, I'll take this progress, and any further improvement will be icing on the cake.
We discussed the back problems further, and he said he did not think it was migratory TMO because "there is no reference to it in the literature causing back pain." We all know what we've read, so take from that what you will.
RavenRose, did you do okay over the weekend? Paul/Pam, you guys all right?
Alexa
Thank you for letting us know about your appointment, Alexa. I'm not surprised that you are still having pain in your hip. It took over two years with my ankle, then foot, before it was mostly healed. I think the nerves still react even after the bones are re-mineralized. Walking, yes, that was the best, even if it wasn't perfect. I think you will get to a point where you are 100% again with your hip. As far as the back...hmmm, I know what I've read....this thing doesn't have any set stereotypes that I've noticed. I've read that it can go into your spine and then you have to be very careful as you can do permanent damage. I will try to find that link and post it. Also, just read yesterday of a case of TMO in a 19 year fellow in Ireland, that seems atypical to what I've read, as well.
Dh took me out into the garden to plant some large pots, I still use the rented wheelchair because I don't want to take the chance slipping or tripping on our hill yet. I sat out on a most gorgeous evening, planting, hands in the dirt. The spring air smelled of some blossoming thing somewhere, truly amazing after being in the house for so long. Since then my pain level dropped significantly, almost magically. I am now putting a bit of weight on the leg with crutches. It's been almost 5 months (20 weeks to be exact) so I'm hoping it's ok for that. Again, the vitamin B12 may have something to do with it, too. I would suggest it.
Yes, how are Paul and Pam?
How are you guys doing?? Sorry to hear about return pain RR and Alexa! I was hoping it would fade/decrease by now, but I guess you just don't know with things like this; it's on its own schedule.
Alexa, I'm going to send you something for your back and will post here later when I find the brochure for it (brace for back pain and posture). It really works and is not uncomfortable and....you don't have to wear it more than 2 hours a day! It's custom fitted, by an orthotist, and insurance co's cover it!!!!!!!!! I'll post the clinical trial if I can, but it's probably too long for the comment section, so I'll send it seperately if needed. If anyone else is interested just send me a pm.
I sure hope you all get better and much sooner rather than later. If you guys get a chance could you hop on over to my osteop awareness campaign article?? If you could post a pix at American Bone Health.org's site for this month, that would be fantastic!!! I realize you don't know what I'm talking about, so here's the link. It's not a long-read, and if you could help, I'll owe you one; whatever you want I'll fulfill Osteoporosis Awareness Month with American Bone Health.org
RR and Alexa, you may have read this already on FB, but probably not Paul it would be so fantastic if you could do this too! You don't need a Facebook page to help raise awareness for osteoporosis! I'm trying to help AmBone with this and would love to have you guys participate too.
Hey, if you aren't planning on any particular t.v. fare for this afternoon (hope it's not over already)...watch Dr. Oz with the Long Island Medium (Theresa Caputo), it should be interesting. She seems legit to me and I love her personality!
Take Care and best wishes to you adorable 3! DaveCat and TheProcess if you're still hanging around, we MISS you! Come back and tell us all how you are doing...we'd all like to know since you're at the other end of this terrible journey!!!
Pam and Mimi...
Thanks for your concern, Alexa. I can't say too often how you all have been a blessing during this ordeal, truly.
I told the physical therapist right off that I was a bit worried about it injuring me more and he assured me that he would be very careful. He was extremely gentle and gave me very appropriate, mild isometric exercises to do at home, just to get the muscles active again with set a limit of twice p/day only. He said my legs are very weak and I need to go gradually. Range of motion in my knee is 10 degrees from normal, hip a bit more. Also, he mentioed that the Dr. had told him no weight-bearing for 1 or 2 months yet...call me crazy, but that was a little light at the end of the tunnel, hearing that. I have been putting minimal weight on it and it does feel stronger. Got a new pain today, a tingling, burning feeling (before appt.), not so much a pain but a feeling (?).
I think I know why the meds are having such an ill affect on me. I think perhaps they are building up in my system to a toxic level. I've been lowering the dose every few days for one day and then I feel great, this week I didn't and it's awful. Today was the worst, was even worried I was going to faint while on the crutches. Going to skip a dose tomorrow.
"Oh, my!" about your accident, Paul. That sounded awful! So glad you came through it! I believe Alexa said she was in two accidents, also.
I agree about not using ideology as the total basis for governing, Paul. Political discussion is better face-to-face, not for blogging-eh?
Here's an art link you may enjoy. Zoom in to see the full details, fairly magnificent, I'd say. http://vaneyck.kikirpa.be/
Having central air put in tomorrow, supposed to be 90*F on Friday (I think that's about 32*C) so none too soon. Yes, very tired from the day...
RavenRose, I'm thrilled to hear you're putting *some* weight down and testing the waters. This is the start of your upswing. You'll be crutch walking in no time. Then you'll be able to drop one crutch (just using the one opposite the affected hip). Just for caution, I used a cane after I dropped the last crutch. That was only for a little while and more because I was scared than anything.
Yes, go with your gut on the medications. Cut back to where you are comfortable, but I think you've already found your tolerance level and what works for you. Thank God you're getting central air. That's a blessing, especially if you're not feeling well. I'm doing the happy dance for you.
Pam, I'm working on a photo for the other osteoporosis site.
Paul, you've got a lot of excitement over there with the Olympics! I'll be watching most all of it. That's very cool.
Alexa
Thanks Alexa, can't wait to see your photo! We really appreciate it! We're trying to get at least one from each state. RR, are you interested in this? All you have to do is flex your arm muscles in a scenic place and upload to Ambone on FB. I understand if you don't feel up to it. Paul that goes for you too. If you can do this, just send me the photo, as an attachment, and I'll upload for you. Just read the instructions on the link so you'll have an idea what we're doing and what to say-only needs to be one sentence, uless you have more to say. I think a pic from England would be so cool! And you'r so into self-help, exercise, like the rest, and this is the whole key to what we are doing...Just showing ourselves in an exercise pose to show we can have strong bones from working out.
Take Care you guys!
Central air is in...today was our hot day-it works well! Usually we had two window units b/c we had hot water baseboard heat, we put in forced air 2 yrs. ago and now we can have A/C...quiet comfort-ahhhh.
I hope you're right about the upswing, Alexa-I'm a little sorer today so going to rest for a few days. Upper front thigh-a bit sore. I have a lot of orders for graphics so that should keep me glued to my chair, anyway.
Paul, I know what you mean about the Van Eyck link, someone sent it to me and I was truly speechless after viewing, "that's nice" didn't quite cover my awe.
Paul, you've really come a long way since I first came on here! Almost all better now! Have fun celebrating the Queen's Jubilee! Sounds like great fun!
Pam, I really am not up to doing anything extra right now. You can use me if you need to for a name or something. Frankly, me standing in front of a landmark looking "fit" wouldn't wash-not fit. It's wonderful what you are doing, tho. :)
RavenRose, so glad your A/C is in and working well. I know what you mean by that upper thigh business. That was the worst for me. It ran down about 4 to 6 inches and just flat hurt. You jogged my memory with that when you mentioned it. I also meant to mention that your art link was beautiful also...thanks!
I wanted to bring up some supplements that I don't know if anyone has tried or not, but I have been reading quite a bit about Vitamin K2 and strontium. I subscribe to a couple of newsletters from physicians, and they are now strongly promoting the use of Vitamin K2. I won't go into it here, but there is plenty of info on the Internet regarding this one.
The other one, strontium, is of great interest to me. I had not heard of that, but apparently it's been around for a while. It's promoted as a bone strengthener and helps in healing from osteoporosis and osteopenia. I have traveled around to different sites looking at the research and reading reviews from folks who have tried it. Overwhelmingly, it's been given great reviews and solid research by objective tests. I have copied just a couple of the reviews I have read and will post them here as they are pretty reflective of what people are saying. I'm trying to stay within the terms of use of this board and won't post links to commerical selling sites, but you can find this product on the well-known ones.
Review No. 1: I had been diagnosed w/osteoporosis in a hip and osteopinia in my spine. (53 yrs. old) After five months of dealing w/side effects from the script my doc wanted me to continue taking, I went to my local natural products store.
On their recommendation I started taking Strongium Bone Maker (2 caps@night) coupled with New Chapter's Bone Strength Take Care (2 tablets@morning). I figured I'd give myself two years on this combo because that is how long it takes to show any difference in a bone scan. At the end of two years my spine showed an INCREASE of 8% in bone density (no more osteopenia!). My hip did not show improvement BUT there was no additional loss either! I did not exercise during that time. I have upped the morning dose to three tablets (the correct dose) and look forward to seeing improvment in two more years. I have had absolutely NO side effects from taking either of these items.
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Review No. 2: I've taken this product for one year and improved my bone density up to 7% (both spine and hips). No longer osteopenic. And no side effects. Why anyone would take those bisphosphonates with all the side effects (and expense) is beyond me. I'm very happy with D*** B*** Strontium Bone Maker.
06/03/11 Still gaining bone after two years. No more osteopenia! Here is a link with many links to articles and studies that support strontium as a real bone builder.
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The product description reads as follows:
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So I thought I would pass on the info in case anyone wants to research further. I have ordered the strontium and will give it a go. At least I don't think it will hurt.
I hope everyone has a great weekend! The US is roasting weinies and packing fireworks for the holiday. I'll also be saying a prayer for our veterans, servicemen and women. Take care, everyone!
Alexa
Wow! That's really interesting about the strontium. Never heard of it before. Thank you for sharing that! I will definitly look into it. Are you trying it? I llke the fact that it has been researched for a long time, I would think if it had any ill effects the FDA would have stopped it. Does that have to ba taken with the K2? Great find!
Hope everyone has a great holiday weekend! Stormy for us, they say. Last night there was a tornado an hour to the north of us. No major damage, lots of trees down, tho.
Kind of neat-Target picked up one of my designs for Christmas cards...further frustration that I have, and am, wasting so much time.
Off to look for a Winnie the Pooh DVD-have a good evening!
RavenRose, congratulations on the Walmart deal.....that is huge!
I have definitely ordered the strontium and just ordered Vitamin K2 this morning. Vitamin K2 helps the uptake of Vitamin D3.
RR, for those of us with OI, I thought this piece of Vitamin K2 research was interesting given the collagen issue we have:
"Experimental animal models of osteoporosis have also revealed that MK-4 improves bone architecture, increases bone mass and mechanical strength, stimulates mineralization (deposition of calcium), and enhances collagen architecture—a cross-linking of fibrous tissue that yields tough but supple bone that is more resistant to fracture."
Here is another excerpt from a very good article on Vitamin K2:
"The Japanese long ago recognized the power of vitamin K2 to maintain or restore bone health. In certain regions of Japan, a staple dish called natto or fermented soybean, frequently eaten several times a week, is uniquely rich in vitamin K2. Recent scientific examination has pinpointed vitamin K2, and in particular vitamin K2 as menaquinone-7 (MK-7), as the active ingredient in this popular eastern Japanese dish, as having a supportive effect on bone quality during osteoporosis treatment."
Vitamin K2 can be found in green, leafy vegetables, organ meat and egg yolks. Personally I don't eat organ meat and very little egg yolk. Some physicians are referring to Vitamin K2 as the "new Vitamin D." Dr. James Mercola has a good article on Vitamin K2. He sells product, so I won't post the link.
For the full-length, informative article that I have quoted on Vitamin K2, click here:
Hope it works for you, Alexa. I think I might try the strontium although the rest of my bones are, so far, pretty close to normal, but, yeah, what can it hurt? Preventative measures are the best defense and maybe it could stave off a recurrence of another TMO attack. You once spoke of "food cravings", I have been getting them lately, as well....spinach, fish, eggs, black pepper and hot peppers (the latter of which I don't normally care for). I know that these foods all contain certain vitamins, minerals and natural chemicals that are thought to be especially good for you. I've always held to the notion that when you get get a craving for things other than sugar that your body is calling for the nutritious benefits of these foods. As far as vitamin K, I think that's in the calcium chews I'm taking (ad nauseum). Again, this is very good to know, thanks!
The PT seems to really be helping, I haven't even started religiously yet-Monday b/c DH was on vaca this week. Just the little I've done has given me noticeable, increased strength, can't wait to do the whole shebang. I am worried about my knee (TMO end of Oct). It has not improved much, any weight and...pain! Before I was diagnosed and they thought it was a small fracture, I had a shot and aspiration. About an hour after the cort shot I slipped on a rug and REALLY twisted it. I later read that you have to be very careful not to injure the area after a shot...did I damage the tendon??? Today it hurt MUCH worse than my hip. Also, today I was sitting in a chair and totally forgot about my condition, I tried to stand without pushing up, like normal standing up, and aggghhh!!! Even my good knee almost collapsed. I think as the pain starts to diminish that is something to be careful of-not being as vigilant. Live & learn.
I have another rheumy appt. on June 4th. I will see what e thinks of strontium out of curiosity....but won't take his opinion as law. Sadly, there seems to be a $$$ factor in modern medicine that has corrupted it.
Rain, rain and more rain today, sun tomorrow, they say.
Oh no, Paul! I'm hoping it's just a temporary flare-up. Maybe stay completely off of it for a few days? Bummer, for sure. Keep us posted-so hoping the best for you!!! Sounds like you have some fantastic plans coming up. I was reading today about the Queen's Diamond Jubilee. What a great way to unify the country.
Oh no, Paul! I'm hoping it's just a temporary flare-up. Maybe stay completely off of it for a few days? Bummer, for sure. Keep us posted-so hoping the best for you!!! Sounds like you have some fantastic plans coming up. I was reading today about the Queen's Diamond Jubilee. What a great way to unify the country.
Thanks RR maybe i've overdone it , but i don't think so, i was ecstatic as i had been virtually pain free for several weeks. The out of nowhere bam! maybe thats whats its going to be like forever who knows. On and off on and off...hope i'm not counting my chickens too soon by doing the pic for ABH which i,ve put on here too. The hip was certainly throbbing whilst i did the pose...stomach in chest out ha!! The place is a five minute ride from home. I also put a pic for you from Liddington Castle Bronze age hill Fort. I am back on 12 hr shifts now at the plant, must dash catch you all later.
Hmmm....don't like the sound of pain from you two, RR and Paul. RR, you're right, your body is craving certain nutrients. Maybe phytonutrients. Paul, it's my feeling you're pushing things, but then I can't talk too much about that. Once you start feeling better, then it's full-on activity, which I also pay for. (That's a cool picture, Paul, BTW)
My latest project is going on a "Green Smoothie" diet. I just got back from the organic market and bought about $90 worth of fresh blueberries, strawberries, bananas, kale, romaine, spinach, etc. This morning I made my first green smoothie with what I had on hand. It was actually pretty good and immediately stopped my sugar and starch cravings. I like this because you don't have to juice and just use a blender to mix. I'm a sucker for testimonials and apparently it cures everything from arthritis to osteoporosis. The chemical basis makes sense to me and I'm committed to this for the next two weeks. Then again, in two weeks I may have a great compost pile and a lot of excess gas. We'll see.
Well, I'm off to tend to Tom. He's really looking pretty good. After thinking about it, though, I'm not sure if the tree is male or female. I probably should have just called it "Pat."
Ciao....
Alexa
I'm worried, too! Do you have a fever? Yes, maybe a kidney stone... Please take care, stay off the affected leg, and get to the Dr. When you're up to it let us know as we will be worried about you.
I was just looking at your pix and thinking how amazingly fit you look ( and, well, nice looking). I don't like that this happening...bah!
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I want to respond properly to you and can't do that when I'm soo very tired and in pain also.
OMG!
that's it!!! You all look so young-gorgeous, and that's because you are!!
Dear Pam,
This is indeed another record breaking article from you. We had all been told that osteoporosis and osreopenia were painless phenomenun that only manfiested themselves when some bone broke in the body--
But this post of yours shows us that we must not ignore pain and must get it investigated for osteopenia through a DEXA scan if necessary. Most people would dismiss the pain as simply arthiritis or simple joint pain.
Thanks for creating this new awareness and bringing to fore the latest developments and ideas in this field.
Yours,
Priya
Hi Priya, once again thanks so much for joining us! I hope you don't get tired of hearing that, but you are so faithful in your support and interest in my articles and our companies site. I certainly can't thank you enough for that.
This disorder is rare, and has different mechanism of action in that it can cause inflammation and infection in the bone marrow. Since bone density is lost, it's in the family of osteoporosis, but due to the fact that it resolves on it's own, is fascinatingly different but still tough to deal with.
If we are lucky, osteoporosis, can be reversed, but we don't hear a lot about those who have this happen. In my case it wasn't completely reversed, but it did get much better with Forteo and went from severe (established) osteoporosis -3.6 to -1.9 in one year. Some would say that's a recovery from osteoporosis, but I realize that my scores can change over time, and get worse, which they have, but I'm still in the osteopenia range for now even though I finished Forteo 4 years ago.
Paul is really inspirational in his outlook and how he deals with the daily pain and physical limitations. The pain from TMO is quite extreme, so it would be similar to a broken hip or possibly femur which is unbelievably painful.
We need to appauld his doctor and him for following through with additional tests so a wrong dx didn't go any further.
Thanks for your loyalty and take care.
Pam