The more I think about it, the more my ongoing health nonsense disturbs me. It seems like I should be able to receive some sort of care or relief — or, at least, a diagnosis — but I am always butting up against more questions. I have been working on the assumption that my Problems and Issues are a result of arthritis; it seems logical, as I was diagnosed with rheumatoid arthritis very young and a lot of my symptoms (deformation and swelling of joints, pain in joints, more pain in joints, fatigue, yet more pain) are arthritic.
When the doctor told me my bloodwork showed nothing arthritis-related, you could have knocked me over with a feather. I think I actually said aloud something like, “Bzuh?” I was not prepared to consider that something was just wrong, and I was all too familiar with my own history — my history of arthritis, arthritis, arthritis.
I should have known something was off, maybe. I have had random symptoms for the past two years, none of which really connect to arthritis. I gained 45 pounds in 2006, and they have not come back off. I lose vision in half of each eye at random times. I throw up sometimes, for no apparent reason. And, of course, there is the ever-worsening joint pain and deformation, which is what I focused on. It’s also the only thing that really sounds like arthritis.
I don’t know what to do about any of this, and neither does my doctor. Everything is getting worse, and it’s happening pretty quickly — this time last year I was gardening and maintaining a sparkling home and chasing Connor around for hours and working 6 hours per day and cooking fabulous meals. Now, I am spending most days in my pajamas, in an increasingly messy house, trying desperately to think of ways to amuse my kid that don’t involve expending any energy. (Here, Connor! Wouldn’t you like to fold this paper over and over for hours while Mommy takes a nap?) I haven’t cooked anything substantial in several weeks; these days, I mostly use the Crockpot or toss random food-like items at Michael and Connor. I am working less and less, spending more of my computer time clicking and reading, avoiding anything that requires typing. I can’t get moving, sometimes I can’t even get upright. Everything is overwhelming and painful and exhausting.
I wonder, sometimes, about the inevitable day when I have to call Michael home from work because the pain is too bad or my joints are too stiff. I can almost feel the sobs in my chest, but I can’t imagine what he’d say. I know what I would say — something like, I’m sorry, but it hurts too much, I need you to come take care of Connor, because I can’t. I don’t know what would happen after that; what would be the point of calling anyone? The doctor I can afford can’t help me; the doctor(s) who can help aren’t affordable. I’ve been to the ER for this three times, and their procedure (a painkiller, some X-rays) isn’t going to change. All that’s going to change is me; one day, probably soon, I just won’t be able to take it anymore.
I only ever have panic attacks anymore when my hands and hips are particularly bad, but when that happens, the whole thing is a clusterfuck. I wake up in agony and unable to move, which makes my heard start to swim as my mind tries to get away from the trap of my body, and when it can’t? All hell breaks loose. I can’t breathe, I flail my aching limbs about in their shattered joints, my heart races along with my mind — I can’t move, I can’t move, OH MY GOD I CAN’T MOVE — and by the end of everything I am totally out of commission.
Sometimes I can stave it off with Pilates. Sometimes, frequently, I can’t. Even when it’s not that bad, it’s bad enough. I can’t write, I can’t carry things, I can’t clasp my watch without using my leg because my fingers don’t work. I can’t open my own water bottles or play Legos with Connor. I can’t wash the silverware because I can’t grasp the silverware, so it piles up in the sink. There are so many I can’ts and no solutions in sight.
I have been close to making that phone call, the biggest I can’t of all, at least twenty times. Maybe thirty. The only thing stopping me is the realization that it wouldn’t really do any good. There isn’t anything anyone can do until we know what’s wrong and I can afford to fix it. All the pajamas and Advil in the world won’t change a thing. What am I going to do?