Tuesday, September 18, 2007

My medical update.... 

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.

I am so sorry you are having such a tough time.

I hope you are able to get some help from the Mayo docs...
I also have sero-negative Sjogren's, so I know what kind of fear accompanies going to new doctors that might refuse to look past the blood test...

Anyway, I actually posted to tell you make SURE Mayo knows you need to talk to a financial counselor... if you've been on long term disability, it seems safe to assume you aren't raking in big bucks, so... at least in my case, I've had 100% of my costs covered, waived, poof, disappeared, at every research/university hospital, so don't hesitate-they have plenty of funds from the government and grants out the ying yang to take care of people just like US. It's there for us, so why let them claim an extra however much profit that barely means what a dime does to us when it can totally make your world a million gazillion times better, yknow?

Good luck with them... Mayo is definitely more likely to be thorough and might even accept tests done by your old docs... that said, yeah, they'll probably redo some of it depending on how close to their own procedure it is and also depending on the age of the tests.
oh yeah, one other thing I can certainly relate to is people thinking it's NICE to not work... I only know one person in the whole world who would honestly rather not work than work, and that person would sit there and watch movies and play video games while gaining 20 pounds a year until an early death... but people have no clue just how hard it is to not work, to deal with not being able to financially take care of yourself, to rely on systems that are seeking profit and see you as a huge cost they will try to rid themselves of... I'm sitting here almost 3 years into my disability claim, waiting for the hearing, waiting forever it seems. In any case, good luck getting them convinced, but above all things, do not pay for anything you can not afford to pay--if you are like me, disabled for life, even if Mayo wouldn't waive your fees (I really can't imagine them NOT waiving them, though-they're REALLY good about that!!) you have to give up "common" things like good credit stop being important... what gets important is surviving, limiting the stress involved with whether you can afford your medicines or not, etc... so that money to tide you over-let it tide you over, don't give it to a clinic that has funds set up to help people who can't afford it... and it helps, btw, to have a bank account with a constantly low balance that fluctuates-put money in, use it for groceries, drugs, "responsible" expenses only, and give those records to all hospitals you go to... that's in case you do have a lot of money in your regular account-get a second if needed at a different bank, strictly checking since "savings" means you're financially alright, which it sounds like you aren't...

anyway, sorry for a total stranger butting in-I may have commented on your blog before, actually-you seem very familiar, or rather, the moving from the Denver to the Sewage Falls doctors sounds like something I've given feedback on before. If you want to contact me outside this little post, since I don't use blogger (and it doesn't let me know if you comment to me for some reason), comment with a way to contact you and I'll email you from my gmail account. I'll check this for a couple days to see if you happen to reply to me...

Hugs from the east coast.

Laura, sero-negative autoimmune disaster zone
Thank you everyone for your comments (including those of you who have e-mailed me). It helps to know that people really do understand the magnitude of being at the mercy of the government, the insurance industry and the medical profession.

The financial counselor is a GREAT suggestion! I didn't even know there was such a thing. I've looked at a few programs that are supposed to help with medical bills, but I'm too "rich" for them even though my medical expenses are over 10 percent of our household income (not counting the Mayo visit) and our income is down to half what it was when I could work.

I'm gonna think seriously about creating a separate checking account for essentials. It would make tracking medical expenses easier anyway.

Psst....I don't put this on the main part of my blog, but my addy is: klbrowser at mac.com (just replace the "at" with a @...I separate them here to keep the spambots away).
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