Opening a pickle jar. Using a can-opener. Scooping ice cream. Getting out of a compact car. Kneeling. Looking up. Bending over. Folding laundry. Lifting anything. I’m 22. This shit is supposed to be a breeze. But it isn’t. All these things (and this is only a small list of the many things) are hard for me to do, which is the result of chronic pain, muscle atrophy, and motor skills that come and go as they please. I’m not a person that likes to ask for help, but I’m finding lately I don’t really have a choice. It’s kinda silly for me to strong-arm a carton of ice cream (and lose the fight) and have the residual aching arm for an hour afterwards, when I can just ask my 15-year-old brother to help me. I could just let it thaw a little…. but when I want ice cream, I WANT ICE CREAM. So yeah. That’s my problem right now. I tend to forget a lot of the time that I can ask for help. I dive into whatever it is and I realize “Oh shit, I can’t do this. Now my (body part that’s been subjected to unnecessary abuse) hurts….JORDAAAAN!”
I’m figuring the Lupus has a lot to do with this ridiculousness, causing my muscles and joints to be easily inflamed. The inflammation from doing things has kept me from doing things, therefore my muscles are wasting away, and now I can’t do more things. It’s like a vicious “I can’t do things because I can’t do things” cycle that I’m not quite sure how to get out of right now.
The other theory I have is I’ve lost a lot of coordination. I thought I was just clumsy, but now I am holding the Chiari responsible.
So here’s my plan for not being a grandma forever:
The Chiari surgery should help anything coordination-related. I’m on a medicine for my Lupus right now called Plaquenil, and my doctor recently doubled my dose. I have noticed a difference in a few things, mainly, I don’t wake up feeling like I got hit by a truck anymore. But with these kinds of meds, they take about 6 months to really feel the full effect.
My doctor has given me a prescription for Methotrexate. It’s a once-a-week pill, and it will probably give me a hangover-type-thing the next day. I haven’t started it yet because I’ve been feeling really crappy, and I didn’t want to start a new med that will make me feel more crappy when I already feel crappy. So I’m planning on taking it Friday night, and being lazy on Saturday. So long as I don’t feel crappy.
Anyhoo, this is another med that will take 6 months to show it’s potential. So the way I see it, if I get surgery within the next few months, and my lupus is being treated, I could be feeling like a human in… let’s say… 6 months.
This is a huge deal to me, because I thought I was going to feel like this forever. I came to terms with and accepted the fact that I was going to have chronic pain, headaches, and fatigue for the rest of my life. I was ok with that. Now, I suddenly find out that there is a good chance I won’t have to deal with that anymore. While I am cautiously optimistic, I can’t help but daydream about all the doors that are being opened up for my future. There’s gonna be a day where my body doesn’t tell me no anymore. It all seems so strange to me.