The last month being back on Enbrel is tricky for me. I have torn feelings for sure. I mean, my swelling has gone down and this is clearly awesome. I enjoy being able to move joints. But I’m still in a huge amount of pain.
I have an appointment on Monday afternoon with my rheumy’s nurse practitioner to evaluate if this pain is a flare up of my Still’s or if it is instead myofascial pain or fibromyalgia or something else.
First off, I’ve had Still’s for 19 years (well, in a month) and I have never had a flare up without intense swelling. I just haven’t. And right now, I’m not experiencing that at all… with the exception of my bum left knee which, let’s face it, swells no matter what I do.
But now I’m torn. Is this just fibro? Is is MS and I just don’t want to know so I ignore the signs? Is it something worse? Am I turning into an elephant?
I try to act like I’m okay and just push through like I’ve always done, but Sunday was the last straw… because I missed Missy’s blessing.
I knew when I woke up that the day was going to be trouble but not wanting to disappoint family or incur the fire of a thousand suns, I got dressed up anyway. I also really wanted to be there. I love this kid.
While we were at the church and waiting for family, my body started getting worse and worse. My fatigue kept dragging me between the living world and purgatory and I was in so much pain. It was all over. My hands were the worst but my hips, my neck, my ankles – everything ached. I just couldn’t do it. It took a lot of coaxing and reassurance from the boyfriend before I felt okay to say that I needed to go home. Even then, on the ride home I was so mad at myself. I kept going between sleeping and crying the hardest I have done in a long, long time. And the day was just so shitty. Wah.
My illness and I have grown up together. We give nods to each other when the other is in control, letting us know that we are around still and not to get too comfy. I have always pushed myself to keep going – run that last mile, climb that last step, dance that last dance. Stopping grad school was hard enough, but it was a sacrifice I was willing to make to stay sane and healthier. I thought that it would really help.
But I just keep getting sicker. And now it’s starting to negatively impact the role that I will have in my niece’s life. I want so much to be there for her – to help provide some things she might not get otherwise like auntie dates to go see new movies or stopping for ice cream on the way home without telling mommy (tee hee). I want to push her to excel, to show her that no matter what she can do anything and nothing can hold her back. I want to be a role model for her.
But how can I do that if I’m not there because I’m held back by this illness? How can we stop for ice cream if I can’t drive anymore cause it hurts too much?
I’m so tired of fighting myself all the time. My body just needs to figure its shit out already for cricket’s sake. But it won’t and I know that. It’s just hard to let other people see how bad things are getting for me. I don’t want to be the center of attention and I shouldn’t be. That’s not my life and I don’t want it to be. I want to just be treated like a normal person.
I can’t just be in constant pain anymore. I can’t take it. I need a break.
On a related note: half of one of my nine remaining oxy-whatevers plus an extra dose of etodolac on a full stomach makes me not throw up and also helped me to forget about pain for a while tonight. It was still there sure, but I didn’t notice as much and I so needed that break.
Also, had a kick-ass appt with my OT today on my hands. My hands are covered in bright blue kinesio tape! And she might even use me as a case study presentation thingy. Sweeeet.