browser life

I was gonna wait until I was done with the article I was writing for But You Don't Look Sick (moving tips) to do post anything about my personal health, but that article is taking forever due to my fibrofog, so I'm just gonna take a break and make this entry all about me, heh heh. Besides, it has been so long since I updated that this is gonna be close to novel-length anyway. Um, where do I start?

Let's see....when I went to my Denver rheumatologist in June, he told me he wasn't comfortable with me not having a specialist closer to Sioux Falls monitoring me regularly. But I'd already been to three rheumatologists out here on the prairie that were complete a-holes, so that left me sort of nowhere. And Denver doc didn't have anyone to refer me to, which was considerably less than helpful.

I did plenty of asking around on the ol' internets, but not a whole lot of response. Someone over at Fibrohugs was kind enough to recommend two rheumatologists in Omaha that were good with fibromyalgia, but I dragged my feet about contacting them as I didn't know if they would be any good with sero-negative Sjogren's. Meanwhile, my long-term disability insurance company announced it would be cutting off my benefits, claiming I had a mental illness subject to a 24-month limitation despite mountains of medical records describing my very real physical ailments.

Then last month, I stumbled across a message forum called NeuroTalk (someone remind me to add it to my Links list). On there, I discovered that someone with sero-negative Sjogren's had been evaluated by the Mayo Clinic. They had specialists there that had done research on Sjogren's, so I got the names of two rheumatologists and two neurologists.

But I continued to drag my feet. Why? Because I actually felt traumatized by the shitty way the Sioux Falls rheumatologists had treated me, to the point where I was afraid to even set foot in a new specialist's office. There's hardly anything in this world that frightens me anymore, but the very idea of being berated by another doc freaked me out.

In the meantime, my flare from Hades that set in after I had three dental procedures and a breast biopsy within two weeks of each other failed to resolve. The pain level did what I expected, which is to say got unbearable for awhile and then went back to my regular baseline (about 7 on a scale of 1 to 10) after a couple of weeks. But the brain fog and fatigue stayed elevated, and the neuropathy that had been stable since 2005 started getting worse again and even gave me new weird symptoms (like feeling as though I have walked through cobwebs or have gotten a splinter even though nothing is there to cause the sensation).

Then last week, Dan told me he thought my long term disability insurance company might be doing surveillance on me. There was someone sitting in a car within view of our house taking notes as Dan headed off to work at 7:30am, which is funny in a way because I'm seldom able to get out of bed before 10am. But not so funny to know to what lengths this company might be going to dig up dirt on me.

Anyway, Dan began to pressure me to go through with the Mayo Clinic thing, volunteering to drive me even though it would mean he'd have to miss work without pay. I started to think about why those three Sioux Falls rheumatologists gave me so much crap. I decided what they probably had in common was an unwillingness to accept the diagnoses of docs they didn't know in Denver, no matter how good those docs were, and that the only way to have a specialist take me seriously out on the prairie would be to have someone run the same damned tests over again, but this time at Mayo, a hospital whose credentials no one in their right mind would question.

So I took a deep breath and went to the primary care doc today, and she agreed to do the referral to the Mayo Clinic. She's going to try to get me in to both rheumatology and neurology. She did a brief neuro exam today and found some reduced sensation on my calves (different spots on different legs) that I didn't even know about as well as carpal tunnel type pain that I did know about.

I also found out this afternoon that my long term disability insurance company had called my primary care doc a few days ago and tried to bully her into stating that I could work and that I was suffering from nothing more than depression. The doctor told them that I could barely walk down a hallway, much less hold down a job and that I had primarily physical ailments. If nothing else, any documentation I get from the Mayo Clinic is going to put a dent in the LTD company's contention that I'm not really sick.

I have no idea how long the wait to get in to the clinic will be. My primary care doc says normally you can get in faster if a specialist refers you, but I'm sort of in a Catch-22 with that one, so if it takes me six months to get an appointment, so be it. Surely the long term disability insurance company can't punish me for having a pending appointment?

Paying for this visit is gonna be problematic as my medical insurance won't cover it. I could end up wiping out all my savings that was supposed to tide me over while my long term disability benefits were suspended. But it may be the only thing that will convince the LTD company to reinstate them, which is a very scary gamble.

It is possible that I wil have to re-do the lip biopsy, and it may come back negative this time because I've been in immuno-modulators for four years. And since my antibodies are always negative, I may be told I don't have Sjogren's after all. But I would think that even if that happens, I will still be found to have some sort of autoimmune disease going on because of the damage to my digestive system, lymph nodes, joints, eyes, mouth, etc.

I will probably be re-doing the EMG I had in 2004. It would be the only way to tell if my neuropathy is getting worse. I may even have to have a nerve biopsy to see what kind of neuropathy it is.

And then after I get done with the Mayo Clinic, I will still have to find a rheumatologist who will continue to treat me. I am hoping that the Mayo doc will give me a name and will maybe even chat with the doc I'll be going to so that there won't be anymore questioning going on. It would be so much easier on me if I didn't have keep proving how credible I am and be all defensive every time I go to a new doc.

So even though I am relieved that my primary care doc agreed to help me out, I am still scared. I keep having nightmares that either I am forced to go back to work and get horribly sick as a result, or that I lose the house and am kicked out on the street. It is a truly awful thing that doctors and insurance companies have such power over me, but am pretty much stuck with this scenario for life.

The next time someone says to my how nice it must be to not have to work, I'm probably gonna deck 'em.