Today was another frustrating day. Sometimes it feels like the air itself is pressing down on me, holding me in place. It takes super human effort just to do the minimum. And that's mentally, too. I find myself groping for words. The other day I couldn't remember the term "caller id". I'm sitting there at my desk, floundering, a complete blank, while my boss smirks because I can't for the life of me finish the sentence I just started. I know that everyone draws a blank occasionally, but it happens to me all the time. I couldn't remember the word "optimistic" or the name of a business I'd just seen a commercial for either. I make lists, multiple lists every day. But a list can only take you so far.
I have another appointment with my Rheumatologist in a couple of weeks. I need to discuss all this with her. But before I do, I really need to figure out exactly what I want. "To feel good" isn't enough of an answer. Not if I can't articulate what is bad and what I want help with. The memory stuff is at least easy to describe. (Whether it's easy to treat is a whole 'nother question.) My second problem- the pain and fatigue- I'm less sure how I want to handle.
When I was first diagnosed, my doctor put me on Lyrica. It helped tremendously the first night. I woke up the next morning, and I didn't hurt. Until you've been in constant pain for months on end, you have no idea how amazing it is to wake up one morning with no pain. It didn't last long. I was hurting again within a couple of hours. But those few pain-free hours were bliss.
As I started to feel better, I started doing more stuff, taking better care of myself. That increased activity caused more pain and fatigue. So my doctor gave me a pain medication. Here's where I need to decide what I want. The pain medication she gave me is a narcotic. To me, it seems ridiculous to be taking a narcotic pain med for body aches. OK, so they're body aches with 'roid rage, but still. In my mind narcotics should be for agonizing pain. Rarely do any of my aches and pains reach the level of agonizing. It's just when you add them all together that they become more than I can take.
So. I feel that narcotics are stronger than what I "should" need. But when I do break down and take one- every couple of days or so- it only takes the edge off. It doesn't completely kill the pain. It often makes me dizzy and even less with-it mentally than normal, but it doesn't erase the pain. Clearly there's a disconnect here somewhere. The pills are strong enough that I wouldn't want to work or drive while taking them, but not strong enough to take care of my pain. I don't think that my pain is bad enough to justify them, but when I do take them they don't do enough.
I can ask for a different pain medication, but with Crohn's I have to be very careful which ones I take. NSAIDs and asprin can be dangerous because they can cause damage to the stomach and intestines with prolonged use. (And I don't see any of this going away any time in the near future.) I can ask for a higher dose of Lyrica, although I know from accidentally taking my evening dose of 2 pills instead of my morning dose of 1 pill that the higher dose during the day makes me really loopy and unfit for work or driving, too. So the only other option would be to try something else entirely.
What I really want is to not have any pain and therefore not need any of these medications. But that's not my reality. Why is it that dealing with the Fibro is so much harder for me than dealing with the Crohn's was? Maybe I had more energy to deal with the first diagnosis because I was coming to that fresh. I've had two years of bad health now, and I just don't have the energy to be sick anymore. Maybe the fact that Crohn's put me in the hospital for two weeks drove home the fact that this was a serious situation that I couldn't ignore. If I never get out of bed nothing much hurts. So if I stay in bed I can pretend the Fibro doesn't exist, right?
Yeah, I didn't think so.