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Cartwheels for Lene
Kelly Young
Wednesday, June 17, 2009 at 06:58 PMre: Cartwheels for Lene
wendy
Thursday, August 13, 2009 at 07:48 PMre: re: Cartwheels for Lene
Kelly Young
Thursday, August 13, 2009 at 11:28 PMVocal cords have joints in them too. Cricoartynoid joints can stiffen up and the larnyx is "immobilized" I guess. It can make you hoarse or lose your voice. If it is severe, you can also have difficulty breathing. But it usually passes and rarely requires treatment - so they say. Also, RA nodules can form in that area making it hard to talk. Or changing the voice. There are some older discussions in RA central in which this is discussed more in depth. If you need to know more about this and you cannot find it, you can let me know and I'll try to help you find it.
Kelly
re: re: re: Cartwheels for Lene
wendy
Tuesday, August 18, 2009 at 08:46 AM -
Lene Does It Again
Josephine
Wednesday, June 17, 2009 at 11:45 PM -
Fantastic!
Tamirose
Thursday, June 18, 2009 at 11:04 AMHaving been on both sides of the fence, I was a practice manager for a busy Internal Medicine practice and was always getting screamed at for the doctors being behind because patients had questions and asked more questions about issues than they were not scheduled for - it is a tricky situation. The one comment I would like to make is that when you schedule your appt with your medical providers' receptionist let them know what you are being seen for and REQUEST a double appt slot if you are going to ask a great deal of information, questions, etc. It helps everyone out in the long run. If a doctor only thought you were being seen for a 15 minute (ha ha) appt, and you have 10 pages of questions, I can appreciate that they become irritated. However, be a considerate patient and notify the office AHEAD OF TIME that you have many issues that you want to discuss - then when the doctor wants to push you off, remind him that you have his full attention for two appt slots and you made those arrangements in advance and would appreciate him going through each and every question. It is a delicate balance for the office and the staff, and trust me, the patients do not see the ugly side of a doctor who is running behind schedule and no one should have to! They don't want to be running behind because every patient thereafter is going to gripe at him because they have had to wait and they quickly learn that fact and try to avoid it at all possible. I truly believe that if all of us patients with multiple medical issues notified the office in advance of what time requirements are needed, that things would run much smoother for everyone involved. The insurance companies and HMO's are pushing them harder and harder to see more and more patients per day and if you knew what their reimbursement rate was per patient, as it depends on the age of the patient, not their medical condition - you would be appalled and angry at your insurance company. A typical Internal Medicine doctor that has a patient "signed up" to their practice in their HMO, may receive some measly $6-$9 per MONTH for that patient - that's it. If that patient sees the doctor 5 times that month, that $6-9 a month is ALL that they receive plus your copay - now you can understand how hard they are being forced to see the volume of patients in order to keep their doors open, pay the staff, purchase medical supplies, etc. So, I understand both sides as I am a daily survivor of multiple medical conditions and do write up a list of questions PRIOR to seeing the doctor, and I request a double appt slot because I have been on the other end when patients' don't do that - and it isn't pretty.
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Great rheumatologist!1
Bama Girl
Thursday, June 18, 2009 at 11:20 AMI know the importance of a good rheumatologist. I recently moved from FL to GA and am on the prowl for a new one. If I can find one half as wonderful as my previous one was, I'll be lucky. She spent as much time with me as needed. She was truly a kind, compassionate woman who I will never forget. She helped me so much. I always took a list of questions (usually 5-10) and she never made me feel like she was rushing me out the door. The fact that I was so comfortable with her really made going something I looked forward to. How many of us can say that about our doctors? Not many, I'm sure.
re: re: Great rheumatologist!1
Bama Girl
Thursday, June 18, 2009 at 12:46 PMre: re: re: Great rheumatologist!1
Tamirose
Thursday, June 18, 2009 at 07:59 PMI moved from Pittsburgh, PA to Las Vegas, NV in Jan 2007 - talk about deplorable health care - ugh. Nevada ranks 51st - which I said - how can that be - turns out Puerto Rico is in 50th! For over 2 years I have traveled back to Pgh every 3 months to see my doctor, it is tax deductible and worth every penny. If you have no luck in your new town, travel back until you do find one locally. YOUR health is priority and keep your receipts for your travel - it is well worth it, though expensive. With our chronic disease we need to keep track of ALL our expenses, to and from EACH and EVERY doctor mileage wise, copays, Rx cost and then travel expenses, education expenses, etc - it does all add up and every penny counts. Make sure that you always remember the priority - that is YOU! Go back to your old doc until you find one - trust me! It was a long painful flight to and from, motels, car rentals, etc - but worth every penny when you don't feel like you have to "validate" your problems all over to a stranger who isn't going to give you the time of day and you are just a medical record number - go where the care is, that is the only way we are going to get quality medical care. I would line up all my docs, PCP, rheumatology, dermatology, dental, and so on and get it all done every time I went back.
re: re: re: re: Great rheumatologist!1
Lene Andersen
Friday, June 19, 2009 at 10:54 AM51st? Seriously? Wow...
Thanks a lot for posting your comment - that's very valuable information. It had not occurred to me that you could keep your old doctor and claim the expenses. if you have the time and inclination some day, would you mind writing a SharePost about this part of your experience? They get more traffic than the comments on this piece and I think many of our users could benefit from knowing this.
re: re: re: re: re: Great rheumatologist!1
Tamirose
Friday, June 19, 2009 at 09:51 PMNot a problem, I will be glad to. Currently, I am a survivor of 34 surgeries under general anesthesia (so I have tons of expertise on that side of the patient gown) and prior to becoming totally disabled at age 37, I worked in the medical field so wore the labcoat and scrubs - so I know that side of it also. It certainly has helped me. I've learned a great deal on what makes a great patient and what really honks off a good physician and how to get their attention, the positive way. There should be an article in August' issue of Arthritis Today about me and my two service dogs, as I rescued 2 dogs 8 years ago and through love, they began to help me and then with a little bit of training they became my lifeline to things below my waist that I could not reach anymore, or grab for small items that my hands could not grasps anymore. I believe in the saying "when someone gives you lemons - make some darn good lemonade with them". Give me a few days to grab my thoughts around the issues, as I am now the sole caretaker of my Father who had a massive stroke 2 months ago in Florida - I'm exhausted and my husband lost his job 3 days ago, after nearly 30 years of service with them (and the ONLY reason we moved to Vegas) including our health benefits so I am still numb with that concept and realizing that now I have to learn the ropes around compassionate use medication through the pharmaceutical companies. A BIG bump in the road of life is an accurate description, but also - one more piece of information to learn and share with others. I certainly will oblige you and everyone else that I can help.
re: re: re: re: Great rheumatologist!1
Bama Girl
Friday, June 19, 2009 at 06:34 PMHI Tamirose!
Believe me, I truly have considered taking the trip back to Florida to see my doctors. I hope to have an appt. scheduled with one she recommended to me - they are playing "fax" right now. If I don't find one I'm comfortable with here, I would definitedly consider that as an alternative. I've been her patient for about 5 years, and finally discovered I have Mixed Conntective Tissue Disease. We started Orencia a few months ago,and she felt we were on the verge of really making a breakthrough in a few more months. But circumstances as they were (my boyfriend of almost 10 years asked me to leave because HE was under too much stress - please!), I really had no choice.
Thank you for responding to my post. It is so good to have people who actually understand what we go through with these type diseases. I know they have certainly helped me a lot, knowing what others are going through,
Tina
re: re: re: re: re: Great rheumatologist!1
Sara
Sunday, July 05, 2009 at 06:53 AMHi. New on this site, but noticed your post in a search. I am located in south florida and definitely need a great rheumatologist. I see someone now that I like, but my symptoms don't seem to match my blood work and I have been difficult to diagnose. Now he is taking an educated guess and wants to put me on meds in 2 more months, depending on what my symptoms show. I understand that some of this is not black and white, but I need a second opinion. Would you kindly tell me the name of this great doc you found in florida? I am also open to flying somewhere (my doc told me south carolina and ny are the best places to go). So, if anyone has a recommendation (especially in FL or NY) I would appreciate that as well.
thank you,
Sara
re: re: re: re: re: re: Great rheumatologist!1
Tina Homola
Sunday, July 05, 2009 at 12:06 PMHi Sara,
I would be happy to refer you to the rheumatologist I saw in Florida. She is located in Largo, which is about 20 minutes from Clearwater, where I lived. Her name is Susan Zito and she is with Suncoast Internal Medical Consultants. Her number is 727-595-2519. She and her staff are wonderful. I wish I could have packed her in my suitcase and brought her with me. I cried when I saw her the day before I left for Florida. She's such a caring, warm woman. She is in a practice with other doctors, internal medicine, gastro, etc. I know you would like her.
I saw one here in Columbus the other day, and he wants to scrap everything she has done for me over the last 5 years and start from scratch. He refused to schedule me for my Orencia infusion and my reclast (for osteoporosis) infusion, which are both due now. I was very disappointed and am planning to try to see someone else before I have to go back to him on Aug 25th. I hope to find someone I'm more comfortable with. The thoughts of having to start all over again is terribly depressing.
Good luck with your search. I hope this helps you. I know what it's like trying to find a doctor you can trust.
Tina
re: re: re: re: re: re: re: Great rheumatologist!1
Sandi
Tuesday, July 21, 2009 at 12:19 AMHi Tina! I hope you remember me, we are going to Florida this week and I just googled your name and clearwater fl. and this came up. I am so sorry to hear about your RA. If you are the Tina I remember you have three kids, Brian, Kristen, and Tara. Jacqui and Kristen were best friends when we lived in Alabama. So if this is you and you want to email me, this is Sandi by the way, try cadle19@hotmail.com, I would love to hear from you.
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Thank You!
RA Guy
Thursday, June 18, 2009 at 03:31 PMThank you for writing this wonderfully informative post. I have no doubt that many people who read it will feel more empowered when it comes to advocating their own RA healthcare treatment. Hopefully others will be able to shortcut to self-advocacy; it took me a few years to personally learn the importance of the topic you discuss.
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A newbie
otherside
Thursday, June 18, 2009 at 03:55 PMI just wanted to say hello to everyone here on this site. I have been newly diagnosed with RA--and have alot of mixed emotions. I do know I hurt more than I ever thought I would. I dont know which meds are right or wrong. Ive done alot of reading but I really dont know where to begin. I have my 1st appt with the rheumatologist July 3rd.
re: A newbie
Karen G
Thursday, June 18, 2009 at 06:06 PMHi, I hope that your rheumatologist can give you the answers you need. Its a long, long slow process but keep on reading. A book that I would recommend is "Living Well with Autoimmune Disease" by Mary J. Shomon. It answered many of my questions, but better yet I felt I wasn't alone in this. I was diagnosed in Sept. 08 and have been taking Plaquenil but I don't know if it is really working. The pain is not as bad as it first was, but it never really leaves. I'm afraid to stop taking it, though, because I've read reviews that once this medicine is stopped it will no longer work if you try to begin again. The only alternative is a stronger drug with more side effects. But I think it was a good choice to start here. I believe its always best to begin with the safest drug possible in the hopes that it may work. Best wishes to you.
re: re: A newbie
Lene Andersen
Friday, June 19, 2009 at 11:12 AMPlaquinil can take a while to work, but you've been taking it for nine months and if you don't know if it's working, then it probably isn't working that well. I would suggest you go back to your rheumatologist and talk to him about possibly increasing the dose or maybe supplementing Paquinil with another DMARD - it's quite common for people to be on more than medication for RA. Sometimes, you need more. It's important to treat RA early and aggressively to minimize damage to your joints - the sooner you get your disease suppressed, the better your chances are to continue to live a relatively normal life. I understand your hesitation with the "bigger drugs" - they can sound really scary. Please know that although some people do have more serious side effects, many people take these drugs with completely manageable side effects.
re: A newbie
Lene Andersen
Friday, June 19, 2009 at 11:08 AMso sorry to hear you've been diagnosed with RA - although you certainly can find a way to live well with this disease, it would be nice if we didn't have to. The beginning can be pretty overwhelming and I would recommend you check out our basics of RA area, as well as our area for the newly diagnosed that has lots of posts on the different aspects of living with RA. In terms of books, I can also highly recommend The First Year with Rheumatoid Arthritis - you can read more about the book and an interview with its author here.
A big part of adjusting to living with RA can be reaching out to other people in the same situation. We have a great community here of very supportive users so don't hesitate to ask questions or post a SharePost of your own. Good luck! Please let us know how your appointment goes?
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Great post Lene!
Brad
Friday, June 19, 2009 at 02:00 AMThank you again for great post. I know all to well that newbies NEED to read this kind of post. It can mean the difference betweeen feeling all alone, not having a clue what to ask the RA doc, and having a productive first or second visit. You are a real hero to a lot of us! Thanks for your insight.
Brad
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Great post Lene!
Brad
Friday, June 19, 2009 at 02:00 AMThank you again for great post. I know all to well that newbies NEED to read this kind of post. It can mean the difference betweeen feeling all alone, not having a clue what to ask the RA doc, and having a productive first or second visit. You are a real hero to a lot of us! Thanks for your insight.
Brad
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Untitled Comment
Rena
Friday, June 19, 2009 at 05:32 PMSTANDING OVATION!!! BRAVO!!! Excellent article. I've been reading it over and over just as a pick-me-up! You are the BEST!!! THANK YOU!!!
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Wonderful
Melinda Winner
Saturday, June 20, 2009 at 07:15 AM
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YEAH!
Fantastic job Lene!
I will read and re-read this to give myself the needed shot in the arm when I am beaten down by the disease and those who don't get it (too often in health care workers!).
So clearly explained. So detailed. Humor, too. Good job.
Tomorrow I finally see an ENT for the choking and voice loss. Hopefully, he will listen. And hopefully, I will be heard.
Kelly