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.


LouAnn said...

I agree that you need to get a second opinion sweetie - even a third or fourth if need be. You are worthy of the best medical care you can get and you are not getting it! You have been thru so much, always in pain, and having to be a single mom is hard enough without what you are going thru medically and emotionally. Please, if you can, get some more opinions - this Rhuemy doctor sounds more like she is into medicine for the accolades and paycheck - not to help heal someone or to take away some of their pain. Hopefully, and soon, someone will cme your way that knows what they ar talking about, cares about patients as people and can work with your other doctors - this is my wish for you right now - and I am sending out all the energies I can spare for you my you

Archaeogoddess said...

"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."

And this is why you should not be tentative about getting a second opinion. Never be afraid to ask another doctor. Sure, the doctors don't want you to go to someone else, they lose teh moneeez. Screw them and their little white lab coats! This chick isn't the one who might be about to lose her stomach!

And I still don't see why she thinks that this would work if diets don't. It would just force you to starve. And force you to make some fancy meal for yourself every day even during a flair.

Nope. I'm not for this surgery. I don't think the doctor chick gets it and I think you not only should get another opinion, I think you *deserve* another opinion.

Holly from 300 Pounds Down said...

I stumbled upon your blog from the Blogess and just wanted to say...I totally feel for you!! And I understand. I have arthritis in my left knee and it sucks. I get a steroid shot which at least helps me function where I can walk but it just sucks. I'm in the same deal with the pool being one of my options for exercising. I had weight loss surgery last June and I've lost 143 pounds so far. It definitely helps with the constant pain. I didn't have the bypass though. I had a vertical sleeve. But like you said it's a serious decision which you have to make for yourself on whatever you feel is best. I'm so sorry you're dealing with all this and it's so not fair that more money isn't put into research for these things! I had no idea that it doesn't get enough funding!