Today has been an "ARE YOU FRIKKIN KIDDING ME?!?!" kind of day. It's been so ridiculous I just can't help but laugh. Mostly. The whole thing is just...crap. It's really the sort of thing that makes it incredibly difficult to keep getting back up and trudging on. I've gone back and forth from feeling sorry for myself to gritting my teeth, to wanting to scream obscenities, to being able to laugh about it. It's been exhausting.
I've mentioned before that I've been having trouble with my Copaxone treatments. The giant, angry, red, hot injection site welts have still been happening. They're still just as bad as the first time. I'd been procrastinating having the nurse come to show us how to do the shots without the auto-injector. It may sound like a fairly simple and straightforward thing because we've all gotten shots plenty of times, how hard can it be? Well trust me, when it comes to doing your own, you want someone there to show you exactly how to do it. It's absolutely terrifying. I had hundreds of scenarios in my head of the things that could go wrong. The nurse came yesterday morning and I swear I almost had a panic attack. The nurse, Cory, and I all sat at the table and went through the steps and talked about it. My heart was racing and palms sweating. Basically, you pinch your fat, stick the needle in, and push the plunger thing, then pull the needle straight out. I sat there for a few minutes with the needle hovering above my pinched fat and wanted to throw up. This is a completely unnatural thing to do! It's absurd to me that I could actually look longingly for the comfort of the blasted auto-injector. Kind of funny, really. It actually crossed my mind that maybe I could just get used to the welts. I don't know why it's so much more frightening than the first time I did the auto-injector. Maybe it's because it was easier to forget what it actually was when it was in the bulky injector? When you're holding a syringe in your hand and can feel the cool glass and see the actual needle, there is no mistaking what you're doing. This is a shot. No one likes shots. And I'm supposed to be ok doing it. To.My.Self. Ugh! The idea of the welts was starting not to be so bad at that point. I could just wear 3/4 length sleeves or not do them in my arms at all! Yeah! Then I remembered seeing myself naked in the mirror the other day after I got out of the shower. I felt really sorry for the woman in the mirror. I'd scratched a welt on my stomach raw in my sleep. So that was swollen, red, and now raw. Both thighs had swollen red welts the size of oranges from that day and the previous day's injections and bruises just as big from last week's welts. So, I did it. I poked the needle in and administered the shot (almost) like a champ. I am pleased to report the injection site did not swell up into an angry mass of heat emitting crud afterward. I still have about a pea sized knot there, but it's 345774984 times better and not itchy. I did this injection in my stomach since it was the easiest. Again, yay for fat!
Today I must have felt adventurous. Or stupid. I'm not sure. At any rate, it seemed like a good idea at the time. I decided to try administering the shot in the arm since that is a little more tricky. My reasoning was that I'd do that while Cory's home in case I had a situation or something. What makes the arm tricky is you have to pinch the fat and, unless you have 3 hands, ya kinda have to improvise. The nurse showed me to sit sideways in a chair and put your arm over the back of it and kind of roll your arm towards your body so it like lays the fatty part of your arm out for you. I made up my mind beforehand that I was going to be brave and just do it quickly and get it over with. And I did!! Almost immediately, though, I realized something was wrong. My arm started twitching and really hurt incredibly bad. Apparently, I went too far back and nicked the muscle. Hence, the wanting to scream obscenities. It really frikkin hurt. BAD. I ran around the house a few times, debating beating my head on the wall, hoping the pain would subside after a few moments. I equate this to doing the pee pee dance when you really gotta go. It really serves no purpose other than to give your body a distraction. It didn't help. Just keeping it perfectly still is the only thing that helped. So, after struggling through breakfast, I sat on the couch with my arm propped up and a cool pack on the afflicted area and read my book. I sat this way for several hours. I don't even have the words to describe the pain. It hurt from my elbow to my shoulder and the small amount of movement I could muster brought tears to my eyes. We went for a walk this afternoon and I'm convinced I looked like a stroke patient with my arm plastered firmly to my body. So, yes, I find that to be so completely ridiculous that I've now traded the welts for THIS? ARE YOU KIDDING ME?!? I was completely unable to use my right arm for the better part of the day. This isn't even the MS beating me down, it's the treatment. How messed up is that? Yes, I get it, I clearly administered the shot wrong. I completely understand that. And that is terrifying as hell! There is no room for error. That little tiny needle is incredibly unforgiving. That is really incredibly difficult to want to go back to.
I am now able to use my arm again with minimal pain. I called the Copaxone folks and left a message for the nurse explaining my situation. The on call nurse called back and advised yes, it sounds like I hit the muscle. She said if I can't pinch 2 inches I need to go in at a 45 degree angle instead of at 90 degrees. Ah yes, I remember the nurse mentioning something about that in the training. I thought it was a matter of personal preference, not necessity. Ok. Alright. Got it.
Now that my arm is feeling better I can look back at the day and giggle. It's not funny in any normal sense of the word, but it's just so...the opposite of what's supposed to happen. You get shots to protect you or make you feel better, not to incapacitate yourself. I will try this again tomorrow and if it doesn't end in complete paralysis I will consider it a success. That, really, is the MS experience. It's learning to redefine what you consider a success. It's overcoming challenges. It's conquering demons. It's doing the bullcrap even though you don't wanna. It's getting over whatever hump has been thrown in your path.
So, aside from the whole "not being able to move my arm all day" thing, I'd consider the manual injections to be a success. I now have 2 injection sites that aren't swollen, angry looking, or itchy. Woo hoo!!
Have you considered any other treatment options? What you are dealing w/ sounds miserable. I would look into other options to see if something might be easier on you! I use Avonex and the shots are only once a week in the thigh. Pretty easy. But I'm considering switching to Gilyena the new oral med. . . haven't decided for sure yet but at some point I will try it. I'm sick of doing shots!ReplyDelete
We considered the others but some of the side affects made me leery. The interferons are very daunting, although a once a week shot sounds exponentially better than this daily poopie. I'm really hoping the manual injections improve. My next neuro appointment isn't until May and at that point I'll have been on this for 6 months. If things aren't better by then we'll have to go back to the drawing board.Delete