Sunday, February 19, 2012

What's Going On.

This is going to be a long and difficult post. It's okay if you want to go look at pictures of disapproving rabbits or read a funny dyke blog and learn lots of new terms for dykes...go right ahead. I've done plenty of both in the last few days, and it's far more enjoyable than anything else going on in my life right now.

I'm sitting on my couch with my heating pad on my lower back right now. I cleaned my bathroom yesterday and the backlash of that is major back spasms and unremitting headache. I also got bit by a tick in the upper, fleshy part of my arm (like there's a part of my arm that isn't fleshy) and it's swollen and itching like a motherfucker. I suspect, from experience, I'm incubating a case of cellulitis that is going to require antibiotics. I am not a happy camper.

I had a very disappointing appointment with my rheumatologist at Stanford on Tuesday. I had great hopes of some new medication that would help banish this fucking godawful flare I've been in since the Archaeogoddess visited and I had that stupid bronchitis. That didn't happen. My rheumatologist did a cursory exam, looked at my latest labs and asked me how my prednisone was working. I told her that it wasn't working as well as I'd like because I was still dealing with so much inflammation, so much pain, so much fatigue. She told me, despite having been told differently by my orthopedist, my cardiologist and my general doctor that while I clearly have some sort of autoimmune disorder, that at the moment she can't definitively say Lupus or RA...obviously I have arthritis in my knees, and my lower back, but she's not sure it's rheumatoid in nature.

Unfortunately, Immunology is not a well-researched branch of medicine. There is sooo much they just don't know about autoimmune conditions. The money for research isn't there. When people donate, they donate to breast cancer, and heart disease and diabetes. All great causes. And obviously, diabetes is one of those that's near and dear to my heart. But they aren't researching the autoimmune component of Type 1 diabetes as much as they are other components. Immunology just isn't well funded research-wise. And god knows it's not understood.

Then, my rheumatologist, who is roughly the size and shape of a pencil, started talking about my weight. I am fat. I'm not overweight, or voluptuous, or any of that. I'm full on, motherfucking fat. And god knows the prednisone doesn't help. And neither do any more diagnosis. A woman with PCOS (polycystic ovarian syndrome) and no thyroid has a better shot at winning the lottery than maintaining a healthy weight. And since I can't exercise outside of a pool, and can't afford a gym membership (poverty rocks), that doesn't help either. So, I'm used to the questions about my weight. And I'm used to explaining that yes, I have tried to lose weight, that yes losing weight would be nice, etc, etc...but my rheumatologist was going on about it as though it were the sole cause of my problems.

It isn't. I've always been on the bigger side, but when all this started...when I first got sick...I was in the best shape of my life. I was healthy, and active. I was hiking every weekend and going to the gym regularly, and eating great. And then, I couldn't. I couldn't because it hurt to move, because I was so tired it was painful. My food choices became more and more about what would the quickest, easiest way to feed us, rather than nutrient content and calorie count.

And the prednisone. The fucking prednisone. It makes me so damn hungry that it makes me angry...angry hungry sucks. You can't ignore angry hunger. You must feed angry hunger, but it's insatiable. You never stop feeling hungry with the prednisone.

But, the other drugs for autoimmune disorders have worse side effects, and since there isn't anything life threatening going on, my rheumatologist doesn't want to try them. She does however, want to try a drug that is sort of experimental for my condition. It's approved for other things, but not for immune disorders, which means Medi-Cal is going to fight to not pay for it...but if we can convince them that it could be useful I will be going off the prednisone and trying this new drug.

She also wants me to consider gastric bypass surgery. Because, frankly, being this heavy isn't healthy, and since regular "diets" won't work (see the paragraph above about PCOS and no thyroid) she feels like it's my best and maybe only option.

But, gastric bypass surgery is no joke, my friends. It's fucking serious and would mean things NSAIDS (non-steriodal anti-inflammatories). I'm on high doses of them, just like everyone else with arthritis. But because they are so stomach damaging, and gastric bypass gives you such a tiny little stomach, they are no-nos.

I've been doing research the last few days. I've had an e-mail exchange with the Archeaogoddess, and done a lot of thinking, and I'm so conflicted about it all. Part of me wants to throw up my hands and say "Fuck it, I'm never going to feel better" and curl into a ball in my bed and never come out. But, I'm a mom, so that's not really an option.

I've tentatively decided to get a second opinion, from another rheumatologist. I feel like my current one doesn't really listen to me the way that my GP does, and isn't as invested in helping me as a doctor should be. She is very....unhelpful, and doesn't hear my words. She has a perception of me as this fat chick who just needs to be thinner and everything will somehow magically resolve itself if I were thinner. Except that what's wrong with me made this fat, not the other way around.

Needless to say, this hasn't helped the dark hole of sadness I've been buried in lately. I'm trying so hard to pull myself out of it, but nothing seems to be going my way and that makes getting unsad even harder then usual.