browser life

Ok, in March, I received a letter from the Sioux Falls rheumatologist I saw in January telling me that one of my Denver rheumatologists had convinced him that I did at least have "probable" Sjogren's syndrome based upon symptomology and a positive lip biopsy. So I decided that I would go back to this doc because at least he wasn't demanding that I re-do the biopsy and insisting that going jogging was gonna cure my fibromyalgia like the doc from the second Sioux Falls rheumatolgist's office. But then, a few weeks ago, I got another letter in the mail stating that the Sioux Falls doc I had gone back to was leaving medical practice and that I could become the patient of the other rheumatologist in that office.

I called the office soon after I received that letter to see if I could get an appointment with the partner. I was told he was booked for the next SEVEN MONTHS! But they said I could see his physician's assistant right away, which I did yesterday.

Since the rheumatologist who had left had complained at my previous appointment that my medical records were incomplete, I brought with me records from no less than eight of the docs I had gone to in Denver. I needn't have bothered copying all those pages because the PA (physician's assistant) didn't even glance at them yesterday. She also completely ignored the summary of symptoms I handed her.

Mainly, she just wanted to know why I was even there. I told her that I needed to have current medical records available for my long-term disability insurance company and that Social Security would be expecting documentation from a rheumatologist when they reviewed me even if I wasn't doing any new treatments. She said that was absurd, which I don't disagree with.

But then she dropped a bomb on me: she stated that her office had a policy of not supporting disability for ANY fibromyalgia or Sjogren's patient! Shocked, I asked her why. Her answer was that neither ailments is EVER disabling!

I got really flustered, but managed to blurt out a question: "And how do you suggest I become NOT disabled at this point?" She said that no fibromyalgia patient is ever disabled as long as they follow a proper "program". When I pressed her as to the nature of this "program", she said it involved exercise and sleep management.

Trying to stay calm, I told her that I had been following just such a "program" for most of the past ten years. I explained that I go to a prescribed exercise class three times a week and went to a sleep management specialist for a year. I went into detail about my sleep regimen, the medications I had tried and the periodic limb movement disorder, but her only comment was that Ambien CR wasn't a very good medication (I agree, but my new insurance won't cover anything else).

I said, "Well, then what about the Sjogren's?" She sorta sniffed and replied that I couldn't be very sick since my antibody levels were normal. Great....another medical practitioner who doesn't believe in the existence of sero-negative Sjogren's, despite the wealth of medical records sitting right in front of her documenting a patient who is not only moderately ill but also disabled!

In my most patient voice, I described how severe autoimmune fatigue greatly interferes with my life every single day. I told her how cognitive dysfunction keeps me from efficiently performing even the most simple mental task. I started talking about the neurological problems, but she cut me off, repeating that her office would not support me and suggesting that I go back to my primary care doc, who is not an MD but a DO and thus won't be considered credible by the LTD company or Social Security (which is not fair since she's actually a better doc than the clowns that pass for rheumatologists here).

So THIS is the best rheumatologist Sioux Falls has to offer (I was told this more than once)?? What, did I turn a corner somewhere along the way and end up back in the year 1985?? So I'm supposed to believe that no one besides me in a city of 150,000 people who has fibromyalgia or Sjogren's is disabled?

I realize that rheumatology offices are free to discern which patients they will and will not treat, that some actually won't even take fibromyalgia patients. But their ridiculous blanket policy clearly violates the Hippocratic oath. I wonder how many fibromyalgia patients they've made worse by insisting that all they need is exercise and good sleep habits?

There is no fibromyalgia or Sjogren's support group here. Insurance won't cover any docs outside Sioux Falls, and I can't drive more than an hour to see one anyway. It's incomprehensible to me how a city that so prides itself on its health care excellence can't come up with a single competent rheumatologist.

I'm very discouraged. I'd just give up on the whole specialist thing except that the long term disability insurance company is discontinuing benefits next month and will expect current medical records when I appeal. I've engaged the services of a lawyer since the LTD guys are in violation of their contract, but there is no substitute for the support of a rheumatologist for Sjogren's/fibromyalgia patients in these cases.

Do these docs not realize how demeaning it is to go and admit you spend every day of your life unable to do anything productive? That I'd do almost anything to be self-sufficient again and not have to rely on the judgement of the medical profession, the government, greedy insurance companies and a society that looks upon me as lazy?? That I wouldn't have even needed to leave Denver if I'd been healthy enough to take a buyout from my employer in 2002 and find a job I really loved?

I hate living in Sioux Falls.