Happy Monday to everyone! Today is Monday, June 22, and it’s hot as ever in NC… although it’s bound to get hotter! Last week we had several days in the mid 60’s and now we’re back up to the 90’s. Have I mentioned heat is tough on folks with MS? Let me reiterate if I have not… heat is tough on those of us with MS. 🙂 Guess Im driving that point home, kind of like the MRI thing (I KNOW I’ve mentioned my dislike of MRI’s).
I missed a post or two last week, so please forgive me? 🙂 Honestly, though, fatigue is catching up with me as well as a return of the dizzy’s… so last week was just a bit tough for writing. Also, I know I have to finish up the whole topic I was on… my path to disability (oh my!)… but we’ll shelve that for today so I can go “Live” about how things have been the past three or four days.
As I’ve mentioned in prior posts, I changed my MS medication back in January/February to a new drug called Ocrevus (new to me, but it’s been around a while). Ocrevus is a twice yearly infusion and is administered at the hospital. When I was researching switching to this medication, the term “Crap gap” came up on the social media group I’m a part of on a regular basis. Essentially, about 5 months after an infusion, people start to complain of a return of symptoms. The return of these symptoms last until after the next infusion. So, the timeframe between the return of symptoms and the next infusion is being affectionately referred to as, the “Crap Gap”. Let me tell you…. if that’s what I’m experiencing right now. It sucks. 🙂
Why Steve??? WHY? You in your outrage may ask … well.. let me tell you something! 🙂 Mid-week last week I started noticing a bit more fatigue in the early afternoon. Fatigue is nothing new to me, but this felt a bit more… what’s the right word… intense? Maybe not intense, but the kind of fatigue that makes sitting in a chair and staring blankly at a wall.. seem like a good idea (Try that one with four kids at home.. one of whom is 7). I take two different vitamins that have been really good at combatting fatigue, but one day in particular I forgot to take my pills… so.. maybe that was why I felt so tired? Well, doesn’t really seem so…
Fast forward to Friday night into Saturday and the dizzy’s returned along with the fatigue. Vitamins weren’t helping at all, so… piecing things together.. I determined I am right at the 5 month mark since my last injection… and.. (Queue the fireworks)… Im “probably” smack dab in the middle of crap gap. So, this is how I’d probably feel everyday if I wasn’t medicated. That’s a pretty terrible thought. Makes me feel REALLY BAD for people who had MS before some of these newer medications hit the market. Talk about a depressing way to live day-to-day. YUCK and YIKES.
I checked my online chart and it looks like my Neurologist doesn’t really want to talk about my next infusion until at least 7/31. That’s about 7 months since the last infusion…Ugh. I know a lot of folks are having delayed infusions due to the Corona Virus (Loud Boo’s here please), so it appears I will end up in that lot. Not really sure what to think about it at this point. I have also seen a few discussion threads where the MS medical community is looking to move infusions from once every six months to once every four months. That isn’t sounding terrible to me these days…. Guess we’ll see where they land on that one sometime in the next several years.
Anyway, there is some good news. Im still feeling pretty tired, but the dizzy’s have subsided a good bit. If this continues I’ll certainly be able to “Make it” until 7/31 before talking to my Dr, however, if the symptoms come back in a strong way… may have to do that “Self advocating” thing and see if insurance and my Dr would be ok moving up the infusion timeframe. We’ll see.
I’ll end things there. You’re probably a bit put off by my “Doom and gloom story” anyway. 🙂
I hope everyone is getting to enjoy their Summer a bit! The pool at our fitness club just opened back up, so we went over the weekend. The weather was warm, but the pool was on the chilly side… so it was a nice way to spend the weekend. I’ll attempt another update later this week to catch us all up on how I’m feeling and maybe get back on the disability story, but we’ll see.
Take care y’all and talk to you soon!
