where is the compassion in healthcare?

Hooray, yeah, and hallelujah! Thank you so much for your emails! I am in such pain right now and have been for years, but I hesitated to press for help because then, I cared so much what the healthcare professionals said about me when I left. I was a people pleaser. I had friends in healthcare who told me what you have posted, about the laughs and snickers behind your back, the remarks that were unlearned, uncompassionate, and uncaring. I knew what was happening, so I went in, told my very good doctor at the time (he retired), my problems and he wa so compassionate and tried getting to the bottom of my troubles.  He was made fun of by lots of doctors because he pushed for his patients so hard. He retired over being "politically incorrect" in going as far as going to the office to push for his patient's rights with patient in tow! I grieved when he retired, then learned he had a terrible back problem and had several surgeries, so he knew pain well!

At the time, fibromyalgia was Epstein-Barr Viral Syndrome, then Chronic Fatigue Syndrome and became more up and coming as it was named Fibromyalgia. I found out about it in a magazine article and took it in to the doctor, who confirmed it with blood tests. Yet, it was still hard to get treatment as that was in the beginning. Luckily, I found another good doctor who assisted me with different methods and saw me quickly when the pain became unbearable sometimes. During that time, in the 90's, I started developing, creating kidney stones. I have had many episodes with them. Now, another doctor has come in as my family doctor, but the urologist I saw then and am seeing now has found my blood calcium levels are too high, causing me to create stones. My new family doctor doesn't show too much concern, but now gives me Norco, as a pain management doctor who saw me during a recent surgical procedure for kidney stones, injected into the dialogue that I had way too many things with me to still be on Darvocette. My doctor was still reluctant until they found my blood calcium level was doubled what it should be. I know there are several things that can cause that and I have many more health professionals to encounter. Especially seeing a surgeon. I worry they have "God complexes" and get worried they want to send you home with a few pain pills.

I know I'm rambling, but I have sat in clinics for hours waiting, and hurting, and hoping and praying someone would understand. Your behind the scenes info tells me why I have felt so many times like a beggar for relief. My last encounter with a RN in hospital, was a good example. I had E Coli in both kidneys, both tubes and bladder, one urologist told me I could go lose a kidney or go septic fast and die, yet this nurse came around at 1 a.m. and suggested I take a Darvocette first. I told her I woke up with the pain and it moved through my back and stomach and down my hip and leg, that when it got that far I usually got a shot. She insisted I try the Darvocette first. At 5 a.m. I was still sitting in searing pain when the shot came. Day shift put it in high  gear and got a head nurse in to get the info. She went and got the pain management doctor who ordered me 2 Norco tablets and was so understanding. I had never filed a report, but I did that time!

Thank you for explaining to some of us out here who don't understand the system, why we feel like dirt, or something unclean when we leave a doctor's office after asking for help. I hate to beg. Looking back, I should have pushed harder for help with the 2 good doctors who probably would have helped had I not underplayed my pain, thinking I was being a good patient. I had been told once too often that pain meds were addictive and I didn't want to get hooked on them. I am dealing with a nurse at my doctor's office right now, who acts like it's a very big imposition to come in and take my vitals. I'm 65 now, a little more assertive, not much, and still let her talk down to me. With your info, I think that will stop! Keep talking, please! I am still facing more in the medical system and I dread it because I hate pushing and some professionals are so aggressive and not helpful.

I admire you for helping us understand! May God bless you and help you find a way with pain therapy as you go through your own problems. It is our body and we know what it feels like better than anyone, please pray for me as I go through these tests and decide whether to use this surgeon I know nothing about! Thanks!

Sincerely,

Annie

Aloha Annie,  As I read your post I am completely empathetic with your history.  It could mirror mine and my pain started when I was 15 years old, 44 years ago.

You said that you were diagnosed with fibromyalgia with blood tests.  Do you remember what they were?  As a neurolgical nurse practitioner (now 100% disabled)and patient with fibromyalgia, I am always interested in any new assessment technique,

Also with your high calcium, have you ever been evaluated for a parathyroid tumor?  Many endocrinologists (thyroid specialists) feel that this is the primary cause of high calcium.

Keep working at this.  You can do it!

Greetings! I am so sorry to hear of your suffering. People dealing with pain on a regular basis are anxious to talk to others who have the same problems or similar. I found an article in Redbook magazine about a psychiatrist's wife with a mystery disease, who had been to the best of doctors, but had found no relief. Her story was so like my own, it shocked me. At the time, I was hurting so badly that getting up and getting to the bathroom from my bed was so painful, I actually crawled.  This woman expressed the same sentiment and I took the magazine to my doctor, who said he doubted it applied, but ran an Epstein-Barr blood test. My titer was really high, which explained the inflammation, but not much else. Some doctors believed in it and others almost laughed. I went through Scott-White Clinic and we found out nothing I didn't already know. I had tests for Lupus with Rheumatoligists and had 2 different results. My doctor referred to it as the mystery disease then. He was the first one to take me seriously and try to find help. I was put on prednisone, flexeril, and Darvocette to help control the pain.

I'd love to tell you a wonderful story about how much better I got, but it took years before I began to learn to exist with pain...do the best I could and go to bed when it got too bad altogether. Eventually, they came up with Fibromyalgia. I had another doctor and basically, I had a name for the mystery disease, but not a lot of changes were made. I hope you have a good doctor, a family who understands you, on good days and bad, and faith. I hope you feel better today or can get better.

I am seeing a doctor for tests on the parathyroid glands as that's what my urologist is suspecting. Thank you for reassuring me that the blood calcium levels are usually parathyroid. Hopefully, I can get this behind me, then the lithotripsy again, and begin to feel better soon. My best to you, and may your pain be assuaged soon.

Annie

Dear Denise and Group,

Denise, I truly agree with your comments re the limititations of the 1-10 pain scale in describing the complexity of what we experience. I have filled out several scales, inventories, etc., for my own understanding. there are many out there, such as the Sleep Inventory, The Oswestry Back Inventory, The Headache Scale, The TMJ, etc. These are designed to take inventory of multiple facets of one's life and how the given condition impacts it. For me, the scales/inventories helped me prepare for my physician visits and gave me a sense of validity, of self understanding. Sadly, I have never had a health care provider offer one to me, and I suspect that had I offered it to them, it may be recieved as one more thing they have to read or do, and I assure I have shared articles, etc., with them, rarely welcomed. Given the duration of my symptoms and multiple interventions, I may be historically inaccurate. maybe I did share some of them, maybe once or twice they were well received. whatever the case may be, I found them to be very helpful personally. whatever the condition, neck pain, low back pain, knee or hip, fibromyalgia, depression, etc., there are scales and inventories out there and some have very good research demonstrating good utility, validity, sensitivity and specificity, etc. I would urge all to do a web search using key phrases such as "inventory, scale, outcomes,...etc".

I AM NOT A PROFESSIONAL, BUT AM ALWAYS GLAD TO HEAR NEW WAYS TO HELP US SPEAK TO OUR PHYSICIANS AND WISH  THAT NOT ONLY THEY BUT THEIR STAFF WERE BETTER INFORMED...AND WOULD LISTEN TO US.  AFTER YEARS OF TRYING TO MAKE MYSELF UNDERSTOOD, I AM SO WEARY. THANK YOU ALL FOR THE HELP YOU ARE GIVING TO SO MANY WHO ARE JUST BEGINNING THIS JOURNEY. I HOPE AND PRAY THERE IS A MORE UNDERSTANDING MEDICAL COMMUNITY OUT THERE FOR THEM WHO WILL BE COMPASSIONATE  FUTURE AND CARING IN THEIR FUTURE. KEEP THE MESSAGE MOVING.

ANNIE

Annie,

We share the facet you mention of being weary! I think we all had to give up our voice much more often than not as you expressed. I recall so clearly the very few times I was actually heard, comments like "I can't imagine how you get by, or you really must be hurting, you are moving slowly...etc." fortunately, I have much better pain control now and I pray (whatever that is) have compassion for those who are in the throes of battle. A triple inguinal neuropathy took me 33 years, other progressive injuries took 14 years from the "abyss". Ten surgeries, lots of bye bye to relationships and $ security. I still contribute to my profession in small ways. A very simple life style is mandatory, travel is rare. I could write on and on...but will quit for now!

Best Reards

jerry

You truly deserve a lot of pain and compassion. My the problems you've endured! I think we all get weary and have days when it is all we can do just to keep pushing.

You sound like a great fighter. I really admire people who have that fire burning in them.

I usually have a better attitude but my sister just had her second leg amputated, and a hip broken and hasn't been the same since. She has always been a brave fighter. She reminds me of you. I wish you the very best! We have to keep plugging, but sometimes, I do get so weary I don't even want to answer anymore questions. That's where I am now, but maybe soon, this too shall pass! I sure don't want to feel sorry for myself, but waiting for more surgeries and having these blasted mood changes are real and I defy anyone to tell me they aren't. I usually try to be the strong one in my family, but I'm tired, sore, aching, and needed to talk to someone who could understand. Thanks for the ear tonight and may you become so much better. You certainly have some serious conditions and need all the help they can give you!

Get better,

Annie

Thanks Jerry for your very informative comment.  I too have done research on other scales and when I have offered them to doctors as examples I have been told that the 1-10 scale is a commonly accepted device so they have to use it.  I have on occasion tried to convince a doctor that it would be worth it to use two, one because others tell him or her to, and the other because it actually tells the doctor something about how the patient is feeling.  My sarcasm, which of course I meant as humor, was not received very well I can assure you.

I agree with you that the other scales and charts still have a value, if only to help us, the patients, identify better ways to communicate with our doctors.  It is up to the individual, and the relationship he or she has with the doctor, whether it would be worth mentioning the other scales, however it wouldn't hurt to mention that they exist and the patient found them helpful. 

In my opinion there is one thing worse than the 1-10 chart; the Happy Face Chart.  If you have not seen the Happy Face Chart, it is exactly what it sounds like. The patient is asked to identify how bad his or her pain is based on how big a smile or how grumpy the face on the chart is.  I realize this is supposed to be for children, but in my opinion it is absurd.  A child would have a hard enough time quantifying pain, now they are being asked to translate that into how big a smile is.  

I wonder how much value is put on these charts and if they impact the doctors' decisions regarding treatment.  Patients often think they will, so often a person will reply that their pain is at 12, thinking that is the only way the doctor will believe how bad it is. I actually heard a nurse telling a patient in an Emergency Room that he could not be at 12, the highest he was allowed to be at 10.  The man was obviously not happy with that limitation on his pain and asked the frustrated nurse what he should do with the other 2 points of pain!  

Let's see if we can't do away with the 1-10 pain chart!

Denise

Hi Denise,

I apologize for such a long delay to your reply of my post-I've had alot going on this past month.  However, in re: to the 1-10 pain scale, I really don't think its very helpful.  Mainly cuz for example, one person's 7 may be another person's 4...and I've had some patients tell me they are @ a 9 or 10 and I was intially informed by my colleagues that a "10" is like, EMERGENCY ROOM material!!  However, it is at least SOME WAY of assessing pain.  And, I think this is where the clinician's expertise comes in to further pick up on the patients' non-verbal communication to either support or to otherwise further probe as to why the patients' own pain level seems so high.  Every patient is unique and I do not dismiss or invalidate a patients' pain level because maybe to them, their "7" IS a seven, though their body language might suggest otherwise. 

Anyway, thank you for your response!

All the best,

Mari Lynn 

Dear Jewel,

THANK YOU,  ALONG WITH OTHERS , that have responded to my post.  I can't tell you how much it means to me to experience strength, compassion and validation from your writings!!  Yes, I would very much like to hear about your processes re: this pain journey we are on!  I have used art on a frequent basis to help express things and though my energy levels wax and wane to do what I like to do, any forms of expression are helpful, if not ESSENTIAL.  So many things you wrote about have hit home for me too; and yes-I would very much like to continue this forum for the healing it can be to ourselves and others. Mutual understanding and support are essential components that I know I need, and you and others too? 

I have to just quickly say something-since I last wrote that "blog" I have really been going thru a "process"-noticeable depression symptoms, a feeling of apathy and well, feeling like there is "no more fight in me" left....part of it are circumstances that have recently changed over the last few days but I can't even begin to tell you how much you and the rest of you folks out there have been helping carry me thru this challenging time. I admit to wanting to isolate and

I'll try to be brief but I supervise my elderly aunt who also has chronic pain-she's 88 and well, my sister and I are her caregivers and she lives at my sister's house.  My sis works 3rd shift and so during the day when she is asleep I "hang out with" my aunt who actually does not require much hands-on care but with her recent approval of getting into T-19/"Family Care" financial and supportive services as allocated in the state of WI, she will very shortly be able to relocate into an assisted living facility.  Hearing about how her pain managment needs will be re-assessed and provided for (well, hopefully!) and in fact-the most recent visit with the social worker was on Thursday morning, and I've been in a funk ever since.  The reason being is, I think I've been experiencing a feeling of JEALOUSY that her needs are being met, esp. the pain needs in particular.  I admit too, that even verbalizing this is difficult, because of course, I DO want the best for my aunt and want her placed at a facility that can provide more than just adequate care.  However, I know that "little kid" part of me was also screaming out too-with a "WHAT ABOUT ME??" kind of voice.  My first thought (ok-beyond the judging of my response) is that I'm gonna have to wait until I'm of Medi Care age before I can have a comfortable or secure place to live.  I say that cuz I am living with my father (my aunt's brother-who will turn 90 this August) but I have gone from an independent person to living with and reliant upon my Dad for room and board. I do not make any viable income outside of the small financial provisions my sister "gifts" me-which include paying for one of my medications each month.  These monies have been given to me for the care/supervision I provide to my aunt-money that I am very grateful for.

OK-I do know that part of what I feel is anxiety about this money provisionsoon coming to an end but along with that so to will my day-to-day structure that has been the course of my life for the past year ending too.  I feel terribly ashamed of my egocentric concerns but I also feel that , "Hey-I'm NOT gonna make it until I get to be 65 for any medicare or family care or whatever services are provided for the elderly.  I am currently on what is called "GAMP" here in WI, med. ins. for low/no-income people.  I'm having a hard enuf time trying to get basic services authorized by the GAMP authorities, (ie. epidural shots for example) and it could literally be another year or two before I could even get Social Security Disability.  I have been denied twice and though I am more disabled than I was the last time I applied, right now I feel like I'd have a hellofa time finding a doctor that would agree with my limitations and rally in my corner for me. 

I do realize that I am indeed, feeling like I sound like a "WHINER"  right now and yet I also know that this forum does provide me with that place to just get my feelings out on the table and that process can then facilitate  some semblance of objectivity.  Rather than remain in harsh self criticizm, writing helps me to voice my feelings and though similar to journalling  it can provide me the benefit of getting feedback too.

I am being so candid and honest with you all.  I so appreciate the responses, and I just gotta tell ya where my head can go: part of me has feared ANY RESPONSES, like I'm gonna be judged and harshly responded to and so there has been some fear about reading the posts.  But, when I read what you and others have wrote its made me realize how much self flaggelation I can still put myself thru, even though I have done alot of "work" on this over the years. 

Again, thanks again Jewel and others for sharing and being here.  We do need to offer support to one another and I've been amazed at how many of you others have gone thru such harsh treatment from the healthcare system.  I admit that prior to being such an obvious chronic pain person I was not always exercising levels of compassion then as I feel capable of and willing to do now. 

Bless you all,

Mari Lynn

MariLynn, I totally appreciate your sharing, I send youd my understanding and

support.

 On the weekend, I "hit the wall" with pain and depression.  I felt very much alone.

I did not feel as though I could pick up the telephone and call a friend or family

member to come over and just be with me.  So, I used deep breathing, and watched

a DVD movie, put in a call to my doc to be seen on Monday.  I also emotionally tapped

into cyberspace, (this web site), to feel that I was not alone.  Last year a "friend" told

me that she found it hard to listen about my pain issues, that "coping with pain had

consummed my life".  So now, I do not pick up the phone an reach out as I once did.

  I am wondering what is your and others experience with this issue.

You are definitly not alone, but don't stop reaching out. Isn't it sad though that we need to edit out the parts of our life that deal with the 800 lb gorilla that is our chronic pain. We don't want to be preoccupied with the pain topic but it creeps into every part of our life. When we are with strangers we answer I'm fine to the  obligatory How are you? But if we are with family or close friends or the one person who promised " in good times and bad, in sickness or in health" to LISTEN we find it hard to accept that they don't want to know. They often have their own agenda like saving you from you.

Someone told them you are on too many pain meds, or that you shouldn't have that much pain with that medical problem . It doesn't matter that they have seen you before doubled up on the couch for days in agony and now you can take care of yourself, that although you are disabled and can't work you keep yourself very busy with the things around the house that need doing, and enjoying you hobbies . That your pain is tolerable and thats all you even pray for anymore. That you are coherent not sedate able to pass anyone's criteria for not being intoxicated , that is not enough.They are embarrassed that you need the meds to function, that it bothers them that in the hospital they are sure the staff was talking about how much medication you require ( without knowing anything about me ) I find it amazing that health care workers take what they were taught about acute pain and extrapolate it to the concept of chronic pain  and more importantly you can't evqaluate another persons pain by your standards.

I didn't mean to go on like this but I hope you will find that when you do reach out, to the right people, it might help you or someone else.

Hi,

Thank you for the comments.  I must share my update re: my chronic pain issues.  First of all, its unfortunate that I had to go thru almost 7 years of HELL with my back problem to finally get to a point where the situation was bad enuf to warrent back surgery.  I had a back surgery in 2001 that was a decompressive laminectomy.  Though that surgery definitely corrected the paralysis that was occurring prior to that surgery, I should have had a back fusion at that point. 

Anyway, because my work as an Occupational Therapist has been very physically demanding (not to mention stress on the job-I think that was worse than the physically demanding stuff!) it was continually making my back problem re-occur, and get worse as time went on.  I "qualified" for a 3rd back surgery as far back as 2007, but the situation was not as emergent as the other two acute injurious surgeries were.  I elected to wait.  And yes, pain doctors and one particularly inept primary care physician (who BTW, was I think a 1st year resident; I fired her!) were NOT very sympathetic to my dilemma.  I could not work since 2007 and when my back problem started to seriously affect my bladder this past March, that is when the idea of surgery went from "elective and necessary someday" to "medically necessary and ASAP". 

Immediately after the surgery and still in the hospital, I had such extreme pain, (from the inflammation of trying to remove scar tissue from nerve roots) I thought I was going to pass out.  I did not feel that the so-called pain management in the hospital was handled very well at all.  After this CT scan when, due to the positioning and God only knows what else, that is when I thought I was going to pass out from the pain.  I have NEVER, EVER experienced pain like that in my life!!  When I was brought back to my room, this wonderful, compassionate nurse (and very experienced too) wanted to put me on IV Dilaudid because she took one look at me and knew I was really in a bad way.  Well, the Dr.'s resident, upon getting paged, REFUSED the nurse's request!!  AARRGGHHH!!!!!!

Now, my day nurses were wonderful.  However, the night before was a different story.  I unfortunately had a recent grad nurse, and there really is a difference in not only experience but this nite nurse was so F#$&*%ING ANAL and SO DAMN STUCK IN HER LEFT BRAIN that she failed to trust her gut and independently problem solve in a way that would NOT HAVE added "pain fuel" to my already on-fire nerve endings!   By this, I mean refraining from asking me to do manual muscle testing procedures while I am writhing in pain!!!  C'mon!!  Where's your brain-up your ass??  As an OT I have had to do evaluations of patient's strength, range of motion, etc....and if someone is standing they obviously have movement of that leg against gravity!!!!!!  Why make them already more uncomfortable (esp. when I asked this nurse NOT to test my leg, it hurt too much!!!) than they already are??

OK-enuf of my hospital rant.....I DO want to say tho that since I have been out of the hospital, the staff that works with my Doc are top-notch and for the first time in such a long time, my pain needs are absolutely getting met, and I am finally treated with respect and no questions or hesitancy in getting my pain med refills.  Its been a longer, more difficult recovery than my other two surgeries but time will tell in re to what my final outcome will be.  I am feeling much better, but I still am on quite a bit of medication. 

But you know what?  My surgeon said, upon finding out what I was given for pain PRIOR to my surgery, said I WAS UNDER MEDICATED.  I'm like, YEAH!!!!!!!    And, this is a guy that, if he didn't think I needed pain meds, I AM CERTAIN that he would not be giving me them. 

Oh, one more thing....After my surgery, I am NOT to take anti-inflammatory meds like ibuprofin. etc. for 6 mos, and so because I had SO MUCH inflammation after my surgery the only thing that got me under control pain-wise was when they started me on a short course of steriod meds....twice.  And, I also needed 2 units of blood.  So, if I wouldn't have had those 2 things, I don't think ANY AMOUNT of pain medication would have helped me get my 10+++ pain leveld down to a manageable level.

So, thanks again for commenting and we ABSOLUTELY have to be our own advocates for our health.  Peace and be well,

~Mari Lynn

Thank you for your response!  Also, I have been negligent in responding to others that have replied to this and to other posts that I did.  Sorry!!  Been kinda busy lately!! 

By you and the others that have responded, I feel very inspired to take some action on this very topic.  First, what I want to do is start a chronic pain support group in my community (Milwaukee, WI) but more importantly I want to do workshops, seminars for CLINICIANS and particularly other THERAPISTS.  I've recently spoke with someone on how to get this going.  I feel particularly motivated to do this, mainly because I am now on a medication regimen that has been quite effective in allowing me to FUNCTION, and I may add WITHOUT the regular need/use of narcotic pain meds.  Prior to this recent change in meds I have not felt able-bodied enough to do anything, certainly not able to MOTIVATE OTHERS!! 

I am very interested in hearing more from you and others in how you deal with chronic pain.  Are you working?  What condition(s) do you have?

I have been friends with the late Regi Boehme, OTR who was an extraordinary clinician...She was afflicted with many conditions that challenged her body, and when she was diagnosed with MS, chronic pain afflicted her quite severely.  She ran a group out of her home called "Living in ease with chronic pain" and I was a part of that group for a year and a half prior to her death in 2004.  She was a healer, teacher and incredible leader in working with other clinicians to raise their consciousness and to become more compassionate with their patients.  I can only hope that I can continue in helping other clinicans to open up first to themselves and their own "stuff" and to allow that opening to open their hearts to themselves, which is the path to compassion for others.

All the best,

Mari Lynn