Oh, look! I have a blog! I can’t even say I forget about this anymore, it opens up in a tab when I start my browser. I just look at it and go “No energy, I’ll write tomorrow.”
But today I guess I have the energy.
I brought over my post from Facebook about my MS a little earlier today. As it said, I was diagnosed with MS (multiple sclerosis for those that might not know, and yes, there have been people who don’t know what “MS” means) in October of 2014. It actually was not a huge surprise as I have kind of danced around with the MS thing since the late 90s. I thankfully don’t have much problems with the MS, there’s no numbness, no paralysis, no real pain that I’m certain is because of the MS. I have a wonderful neurologist here in North Carolina (on the recommendation of my neurologist in Chattanooga who actually interned with her), and she got me right on treatment that seems to be working. The only real issue I’ve had is some “brain issues”, cognitive issues (memory, thought processes, finding the right word for things, etc) that I’m learning how to manage.
My treatment is an IV infusion once a month (the nurse and I joke that it’s replaced my “monthly visitor” since I’m already through menopause) with a drug called Tysabri. It was a little unnerving and odd at first, I won’t lie. Getting an IV inserted, sitting there for a few hours (today was 1:30 until a little after 4), having a bandage on my arm where it was for a while afterwards, getting a bruise (I just bruise, doesn’t matter how good the person is). But I’ve actually gotten used to it. I take chainmail supplies with me and often get a bracelet or earrings done while I’m there. They’re very accommodating when it comes the the IV placement to let me still use my hands to work pliers. Its become normal for me.
And then… there are instances like today. I usually sit in my chair, go through my IV stuff (the medication and then saline afterwards to make sure I get all the medication out of the line), pack up when it’s done, and sometimes use the bathroom before I go. It’s about a 45 minutes drive up to the hospital I get it done at, and I drink a lot of water during the day (makes the whole “IV” thing a lot easier). But today I had to use the bathroom while I had the IV in… and that means taking the IV pole with me into the bathroom.
I don’t know why, but that just throws me. Maybe because normally I can just ignore it. The IV insertion only hurts for a little bit usually, I can’t feel anything with the medicine going in, it’s in a sort of quiet part of the hospital that doesn’t feel quite as “hospital-ish”. But when I have to move with that pole, I think it just kind of drives home the fact that I’ll be doing this for a very long time… possibly for the rest of my life. And yes, I know there’s seriously amazing treatments coming for MS, but with my lack of real issues, I’m not planning to have chemo and then stem cell treatment… The cons to me outweigh the pros, at least at this stage in my life.
I’d done one of those silly Facebook quiz things the other day that gives you a “meaning” based on your name. Mine came up “The Strong One”. I’d commented when I posted it “Some days I’m not so sure…”, and today that came to mind when I was in the bathroom, staring at the IV pole and the line going to my arm… and, honestly, kind of fighting back tears about it. Yeah, I guess I’m doing it and I’m handling it better than some might, but some days it really doesn’t feel like strength.
I will say, though, I was rather glad that it was a “left arm” IV day. It’s really hard wiping with your left hand when you’re used to using your right! 😉