Most of the time I am pretty good at hiding how sick I really am. I take an average of 28 pills a day and I give myself an injection once a month. It isn’t something that I openly share with people, because of the aforementioned awkwardness. People don’t usually know what to say. I think I don’t like to talk about it because I am afraid of how I feel like I will be perceived. I don’t want anyone to think I am weak. Ever.
But, sometimes I am weak. Which brings me here. Blogland is the only place I really feel comfortable saying things like that.
The past few weeks have been rough. Often, my medicine will just stop working without warning. The best explanation is that my immune system adapts and overcomes the medicine, trying to fight off the disease it believes I have. I might admire the immune system a little more, if it didn’t make me feel like horse shit so much. I have tried so many of the medicines available, I am usually waiting for FDA approval of new drugs. It has never worked for me to go back on a medication that I have previously taken, because my immune system is nobody’s fool. This has been a pattern for me…. meds working for 1-3 years and then they just stop and everything has to be adjusted. Things have to get pretty bad before my doctor is willing to change my regime. And that is where I am now…. bad, but not bad ENOUGH quite yet.
So, I wait.
Sometimes I don’t make it through the day without the pain bringing me to tears. I don’t sleep well, because the pain in my hands and feet makes the covers feel like they weigh 10,000 pounds. Even if I could dress warm enough to not need covers, I still have to shift my body frequently because of hip and shoulder pain. I am tired a lot. The pain is often relentless and exhausting. If I do something like work at the store or even something simple like run errands, I often need a day to recover. The pain is constantly shifting from joint to joint, and the pain changes from stinging, stabbing, and shooting pains to dull aches. It makes me clench my teeth a lot, which then gives me a tension headache. Good times.
The constant swelling in my joints has left me with permanent nerve damage and pain even when there is no swelling. I wake up each day not knowing what I will feel like or how much I will be able to do.
My family has learned to adjust to my unpredictability. My son is especially good at helping me out. But, even for how well they take it, the guilt is sometimes overwhelming. I often can’t do the things that I want to do, and there are so many things I would love to do that I will never be able to do. I feel guilt for the kind of Mom that my kids got stuck with instead. I realize that they love me and have known nothing different, but I often wonder if they see other Moms and measure me against them as often as I do.
There are times when the pain makes me emotionally raw. I get scared of what the future holds or that I will never bounce back from the current flare. I get scared that my medicine will stop working….. again. I get scared I will have to stop doing things that I love to do. I get scared that I will be a burden to my family. I get scared of my joints becoming deformed…. of being in a wheelchair.
It is sometimes a very dark and lonely place to be.
I often wonder what my life would have been like if I never got RA. I have had RA for almost 18 years… almost as long as I lived without it. It’s shaped who I am and the most I can hope for is that it has shaped it in a positive way.