Sunday’s are a big day in my household. Every Sunday is our little “prep” day. We usually prep some lunches, get the laundry finished up, try to tidy up the house, and I’ll redo my pill organizer for the week. Every other Sunday, however, is an injection day, which is a different type of “prep” day.
I’m constantly being reminded to drink water, whether I’m at work getting texts or at home being handed a bottle of water every hour or so. He doesn’t even say anything, just hands me the bottle in a gentle reminder to take care of myself or I’ll regret it later. Offered food constantly, bribed with sushi to eat something, anything.
When the time rolls around, I’ll pull my injection pen out an hour before I plan on doing it, but it’ll usually end up being two. I always try to push it off, not because it hurts, but because I absolutely dread injecting myself on principle. It feels foreign, like a practice normal in someone else’s life, but surely not mine?
While I wait until the last second to do it, it’s only a horrible ordeal in my mind. It’s a fairly simple process – alcohol wipe the site, inject, bandaid, put the pen in the sharps, you’re done.
As long as I really put in an effort to take care of myself the next couple days, I’ll be ok. Haha jk lol Sometimes I’m just sick. The flu-like symptoms, the back pain, amongst a million other things. There’s nothing I can do at these times but grin and bear it, which I do, because those days are not the norm for me. A lot of people ask me why I even do the shots when they can make me so sick. well…
Yes, there’s probably always some sort of symptom I’m dealing with…but I’ve dealt with those for long before my diagnosis, it’s my normal. But, I usually feel pretty good. I can run, jog, and hike rugged trails. If I have my cooling vest, there’s not a limit to how long I can be out, even in full sun. I can go camping, on road trips, and do hair + esti stuff when I want.
Five months ago, I couldn’t do that, any of that; and, I feel more like ME now than I have for a year. I’m not saying the DMD’s are the cause of that. I think diet, acupuncture, supplements and exercise have a LOT to do with it. For now, if I’m at all preventing a god awful flare, and how horrible I felt during it, I’m ok with being sick sometimes. I’m not saying I’ll be on them forever – I’m not really sure either way right now. I’m just happy with where I’m at right now.
When I see my neuro in December, I’m sure I’ll have more to ask him about all the side effects. I wish there was the perfect cheat sheet on questions to ask him, I take a list every time, but inevitably end up remembering something I meant to ask. In a perfect world, Rememberalls would be real…
