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 like...no 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.

Drugs

I think I mentioned that the my regular doc prescribed me some decent pain pills and referred me back to Stanford with some very real hopes of a definitive diagnosis, beyond the ones I already have, of course. So, for the last month or so I've been taking fairly high doses of narcotics, and yesterday I started getting panicked about addiction.

I've taken pain meds in the past and never had an issue, but what I'm taking now is higher dosages, and more frequent. Of course, my pain levels are significantly higher these days, as well...but that doesn't mean it's not a concern of mine, the possibility of narcotic abuse.

I spent some time on the phone today with my therapist, my doctor and a good deal of time on some internet forums I frequent for sufferers of chronic illness. My concern is becoming addicted...having an addiction, which of course, at this point I technically have. I have a physiological dependence on the narcotics at the moment. That became very clear to me today when I woke up in a pretty nasty state of withdrawal, because since I was panicking yesterday about addiction, I didn't take my pain meds. Which was a mistake. A big one.

I'm trying to readjust my thinking that being dependent on the narcotics right now is okay, that, yes my I have a physical addiction to them that would make it hard to stop cold turkey, but the same can be said of my antidepressants or mood stabilizers and I don't view that as a bad thing. In fact, the withdrawal from antidepressants is nearly as awful from narcotics. The difference, of course, is that you never hear about someone robbing banks or turning tricks to finance their antidepressant habit.

It's ironic, because I've labeled drug seeking in the past. I always laugh at that because there was a time when I did drugs...a very short time, long ago...but I did drugs. And my go to drug wasn't something that made me tired or loopy like narcotics do...it was speed, aka meth. I loved speed. I loved the rush, the energy, the clarity...I loved everything about speed...until I didn't. Until one weekend when I pushed it too far and realized that there was an ugly side, and it would be easy as fuck to end up an addict, and that wouldn't be fun. That was the weekend that I could easily see myself becoming someone I just couldn't bear to inflict upon the people I love. So, I quit...just like that, no rehab, no detox...I just stopped. I did it again one other time after the midget was born, while she was at her dad's, and thought...yeah I don't really miss this...well, the kitchen got really, really clean and I kinda miss that, but coming down was hell, and a damn good reminder that I wasn't 19 anymore.

Even when I did drugs, even when I was younger and actually thought an evening of getting drunk was worth the hangover, it was always in the back of my mind that my DNA was heavily loaded towards addiction. Both bioparents are addicts, now recovered addicts, but addicts nonetheless...and they came by their tendency toward addiction honestly, via their shared Irish heritage. So, I was never an every day drinker or druggie. I was too scared. And once the midget came along...I won't say I never touched anything again, but it's been seven or eight years since I ingested an illegal substance and over four years since I drank enough to be drunk.

So, yeah. I love the pain meds. I love that it gives me some relief from the constant, unbearable pain. But, what I would love even more is a pain relief treatment that didn't mean a chemical dependence. I don't want to trade one set of problems for another. And there's a second side to having access to these pain meds that isn't very fun. When people know you have narcotics, they want them...not necessarily because they're in pain, but because they want to get high, so you constantly get people "jokingly" asking you for drugs...and I have a hard time telling anyone no, but I do it, and they still bug me. It's frustrating in the extreme. I get the drugs I get because I am in legitimate pain. And, yeah, I think this country's drug laws are stupid and that if people want to do drugs, the government doesn't really have the right to tell them no, but I get these drugs because I need them, and if I run out early, I don't get more, and being without pain meds when you need them is hell. So, giving them to someone who doesn't need them would be just plain stupid on my part...

And while I am prone to stupidity, I'm really trying to limit my stupidity to things that will eventually be amusing anecdotes...and sitting on the couch, crying in pain because I gave my drugs away...well...that just doesn't sound like it'll ever be that funny...

Arthritis robbed me of my Christmas spirit

I'm trying to find my Christmas spirit. I've had it as I did all of my Christmas shopping online. I had it when I was sobbing over this amazing miracle The Bloggess inspired in so many people. I had it this weekend while I was making dough ornaments with the midgets and her cousins. I even had it as I was wrapping presents last night.

This morning, though, I woke up with a raging motherfucking arthritis flare. I can barely walk and there isn't a single position that feels comfortable or pain free. It's some bullshit, yo! I'm taking massive doses of NSAIDs and Tramadol and from time to time Vicodin and it's still agony. Makes it hard to think about Christmas and Santa and all that bullshit.

The only thing that's helping at all is singing this song at the top of my lungs, I don't know why...maybe it's the beat, which is truly groovy...or maybe it's yelling "Fuck You" at the top of my lungs.