Just a few days ago, I felt and posted like a whiner. I carefully read the comments people sent in. And something shifted inside me. I still am in pain, tired, and all the rest. But, I see this all from a different place. I am copying and pasting something I posted on Oprah's message board for fibro. She apparently had Dr. Oz on back in the fall and was as dismissive as many others are. I didn't see it, so I don't know first hand. I wish everyone a restful, relaxed Sunday.
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I am quite tired of seeing/hearing fibro sufferers characterized as "do-nothings." Whether it is a high visibility show such as Oprah, Dr. Phil, or any other celeb....whether it is that doc you have to see....whether it is your family, who humor you, nod at your pain, and then wonder why you don't just get back to work:
Fibromyalgia/CFS/multiple chemical sensitivity/etc. are all genuine diagnosable conditions that are as real as diabetes, cancer or arthritis. We need to find the energy to be pro-active in dealing with our doctors about this. I, too, have had an uphill battle in dealing with medical professionals. In the last few years, there seems to be more professionals who acknowledge that what we have is real. But, they can be hard to locate. If your doc gives you a hard time about any aspect, from diagnosis to treatment to referral, my advice is to change docs. Get a appt. with the top person in your state or region; I went to the UFlorida school of medicine (dept. of rheumotology) and got an appt. with the head doc. I had to wait 4 months, but when he validated my symptoms as genuine, severe fibro, it undid alot of my anger and frustration. He would have continued as my treating Dr. but I was moving to WV. One thing he said was NO treatment "cures" fibro. Managing symptoms is the best to be hoped for. He told me that any medication(s) will likely need to be rotated with others to stay effective. SO, find a doc who knows what of he speaks and see him/her.
Alternative meds, like traditional ones, help some people some of the time. And most lose their effectiveness and need to be rotated out, with others rotating in. I personally don't have enough money to try noni, or elaborate vitamin protocols.
We have endured in spite of decades of pain and fatigue. I believe that if our personalities were studied, it would be found that most of us are hard-driven women, who worked far too hard, for far too little, while balancing family needs, for far too long. We totally ignored our body's signals to rest; we took care of massive work/family responsibilities, with little bitching. We were often extra-talented, type A people ... the kind bosses love, because we will give 150%. They took advantage of our dedication, with our tacit permission. We raised children, endured husbands (or got divorces), balanced budgets, and so much more. And our body and minds, so long ignored, are unable to keep up that pace.
Now, here we are being victimized by a medical community which generally chooses to view us as: whiners and do-nothings. We were never whiners....we were never do-nothings--and we haven't started now. We are simply stating our health as it is. Until we demand to be heard, we won't be.
I also believe that because we are generally so exhausted, we can't even mobilize for national attention, like folks do for breast cancer or autism. If you look at any medical condition which is now recognized by mainstream America, it was usually family members who first and continually pushed for validation.
I am not sure of the way out of this labyrinth, but I will do my little bit. I won't call talking about my list of symptoms, whining. I won't stay with any doctor who dismissively deals with me. I will talk freely about my illness, as it is; hold my head high, and expect recognition. I will educate those who don't know about it. I will be kinder to myself, and never call myself a "victim" of this illness. I will keep searching for help with medical care and medicine (such as PPrX). I will keep fighting for my SSDI. I will educate my family; they will be my strongest advocates if they really understand.
I still ache; my nerve pain is excruciating; I am preaching to the choir, so I shall stop. But, I am looking at this whole situation from a different place. I am a not a powerless victim of this illness, doctors, family or the public at large (such as Oprah's show). I am a person in chronic pain, who deserves and will find the best medical care available to me.
Any thoughts?
Hugs to all of you