Thursday, March 10, 2016

The D Word

Doctor. The mere mention of the word sends me into a panic-induced tail spin. Needless to say, I don't have the best track record with doctors. Not only does seeing one usually mean there's yet another thing wrong with me, but they frequently ain't all that nice to a girl with so many unexplainable health problems. See, I'm crazy and they can't help me, so we usually leave it at that. Which is absurdly ridiculous, seeing as crazy people get help all the time. But my unwillingness to concede that the pain in my body is caused by unhappiness in my head, well, that puts me into the category of "unhelp-able crazy," which has left me to figure out how to live with this illness all on my own. Hence the panic-induced tail spin I've adopted as my default whenever the D word is uttered. Did I mention I have a hard time going to the doctor?

But as it goes, yesterday I had to see a new doctor. So with no hope in my heart, no desperation, and asking for very little, I set out to present my long, sordid health history to yet one more medical professional. Because really, I just need to sleep. I can manage the rest of my symptoms with nutrition and exercise, but not if I can't bloody sleep. And since August I've been unable to obtain consistent sleep. 

It's been a while since I dragged out that binder of medical records and combed through it to create a concise medical history, but the day before my appointment that's precisely what I did. It took me eight hours. The surges of emotion I felt reading through every medical report, hospital discharge summary, and diagnostic result made me weep. Once I settled down, I marveled over how on earth I'm still standing, yet alone clinging to hope or faith in the future. At the end of the day I had a one page, concise, non-emotional summary of my myriad diagnoses and treatments for the past 16 years. It was, without a doubt, the best thing I ever could have done.

Because the reaction I got from my new doctor yesterday was staggering. Not only did he tell me how happy he was with my organization when I handed him the paper, he actually asked if he could take a moment to read it, and then proceeded to ask me questions about individual incidents! I almost fell off the exam-room table, thrilled he cared! But what came next shocked me to the core. He finished reading, put the page down with a smile, and explained what I've always known but nobody will admit: when many (not all) doctors hear the words "fibromyalgia" or "chronic fatigue syndrome" from a new patient, they immediately, without further consideration, place that patient into a "category." Never mind that those diagnoses were obtained from said doctor's colleagues, that patient will forever be taken less seriously. But what I did, when I handed him that medical history summary, was cut off any potential attitude at the pass. It told any doctor, unequivocally and without a doubt, what I have experienced is real, I take my health seriously, and am not to be dismissed as a drug-seeker. At that point, I think I did fall off the exam-room table. Clearly, the emotional upheaval and time I invested in creating that document were well worth the reward. Thank the good Lord in heaven.

The rest of the appointment went well. He informed me the meds I'm taking to sleep are not suitable for sleep because they are short-acting. Eureka! Is that why I pop awake after 4 hours with my brain racing? He prescribed me something different and last night I slept. Not like a log, but I was able to fall back asleep after waking up in the wee morning hours to pee, so that's progress. And he wants to hear from me in two days to see how the new meds are working. Is it possible, after all this time, I finally found a doctor who truly cares? And there I go with that hope again...

Thanks for joining,


  1. How Amazing! I'm so happy for you, and on your first try. You really needed to get some good sleep it so I'm just thrilled. And, although you know, once you get some sleep and a bit more rest, how to find your way back to health, it's always good to have a physician you like on your side. So way to go, what a huge step. You even "sound" better in this post. Stronger, less shaky. My girlfriends and I used to call "hope" the H word. Feel free.

  2. Last evening I found your blog while searching my symptoms of constant pain over my whole body. I didn't realize the tiredness I feel and the restless nights were also part of my symptoms.

    I do not have a family doctor--I veer away from doctors--and to read your experience has helped me realize that my constant pain and waking up every night after 10 minutes of sleep to find my brain racing is real.

    Thank you for your courageousness of putting yourself out there.

    I'm just one of many who suffer from Fibromyalgia.

  3. I like to recommend a couple of books to you all suffering from fibromyalgia. One is the mind body prescription by Dr. John E sarno and another is hope and help for your nerves by Claire weekes. Those two books did wonders for my pain and health. Hope you all have time to check them out.

  4. Your words are my words. Your words are the words of so many suffering with no power to effect change. I'm lucky enough to have two doctors that will just give me the meds I need, and I'm surviving this way. I panic every time the healthy idiots at the CDC say chronic pain patients don't need pain medicine. Terrified I'll be sent back to the years of agony where I didn't even know to ask for pain medicine and no doctor ever offered. Until one day, one did. And my life changed and suddenly I had some control over my suffering. I'm terrified I'll walk into the doctor's office one day and they'll say you don't need that anymore, after all, you're not fatal. Yes. Yes I am, if you stop empowering me. Why must we be shamed? Every time I go I hang my head. It was bad enough when I was just seen as crazy. Now I'm seen as crazy and maybe a drug seeker. That feels like walking a tight rope. And I always hated medicine all my life. After my C sections x3 I never took the pain medicine more than a few days. I hated them. But that was a whole different pain. This pain goes to the bone and deep into every nerve and muscle. It's not tolerable day after year after decade. So.... I hear ya sister!! Doctors are terrifying. Glad you may have found a good one! Just a quick note, last time I went to ER, once a year at most, the doctor gave me Pepto and talked down to me. I begged for a cat scan and he said, 'I'm not going to go looking in the dark!' I took my son to the ER with similar pains, they hooked him up to morphine as soon as we walked in. Turns out it was a gall bladder out. But if he was female, he'd still be sitting here rocking back and forth in pain. My daughter was recently diagnosed with Lyme. Took her to the infectious disease specialist. I think he replayed the tape word for word of what I got told when I first got sick. Talked down to us. Told her there's no such thing. Questioned her mental state. And wanted to know where we got the idea (her primary care doc) and asked angrily if we were going to believe him over and over that there's no such thing. Doctors are frightening!

  5. I felt like I was reading my own words. After 90 min being interrogated by a rheumatologist about my all over body pain for 2 years, he handed me a flyer on fibromyalgia and said I had all the symptoms, but it doesn't exist. :( For the next 2 years, I was treated for psoriatic arthritis with Enbrel shots that did nothing. Finally saw a new rheumatologist last December. I typed a sheet of every painful area of my body and included previous 15 surgeries. He read it, did exam and said "you have fibromyalgia." When I told him about other rheumy's words, he said it DOES exist. I finally felt validated instead of put on that "hypochondriac" list! Now he is working with me to find the right medications that don't give me side effect problems, too.

  6. Oh girls! My heart goes out to u. I can relate because I have been there...10 years now! Once u get on SSI they seem to take u more seriously. And my best advice is buy a binder with sections. Every test that is done on u, including blood draws needs to go in the binder. A section for medicines and the side effects u experienced and the effectiveness of the drug. Take the binder with u for all ur spots and make notes on the outcome of each appt, including dates and who u saw.Most doctors will have u try all the non-opiate drugs first, and not a bad idea. Once u have tried all of those they will usually go to the opiates. I wish I would have started this years ago but within the next week hopefully, look for me on YouTube under Fibromyalgia Raw and Uncut.

  7. It was a wonderful thing when my new doctor said "fibromyalgia". After I've heard, vitamin d deficiency, diabetes, high blood pressure among others including the best one,"you're getting old", at the ripe old age of 43. Thank you for sharing.