Weeks 30 & 31 - Post Lemtrada
May 24, 2020
I've been self-quarantine-ing for eleven weeks now. I am not sure how the time has gone by so fast. Slow but fast at the same time. I can't believe it's going to be June already next week. My total outside people interactions include: a trip to the pool supply store, a trip to the string shop for my daughter, three trips to Quest for monthly blood draws, a curbside pick-up of mulch and a basil plant, a drive through pick-up of prescriptions and a curbside pick-up of groceries. Four of those interaction have been in the last week which gives you an idea of how little interaction I've had with people outside of my family. We've had food delivered but even delivery people are now leaving things on the porch. My husband went to the grocery store a couple times but mostly we've been doing curbside pickup and he's been doing the pickups.
I've had some good news; I got my latest blood results last week (I posted them on my pages) and my T-cells are continuing to go up at a pretty decent rate. I am at about 29% of the lowest normal level, last month I was 21%. My overall white blood cell count is down a bit and my Eosinophils (another white blood cell) is a little high. I asked one of my neurologists about that and he said that it's something they will keep an eye on but that they have noticed Eosinophils can spike and that at this point it wasn't anything to worry about. My B-cells are behaving and are at the same level as last month so no need for more steroids at this point. Oh, my platelets were a little lower than normal. My platelets tend to bounce around at the low end of normal but they had been closer to 200 the last couple of years. My neurologist said that I should keep an eye out for signs that they are getting really low. Things like little red dots on my skin, bleeding gums or bruising easily. We first discovered my platelets were low a little over 10 years ago during a routine work physical. They couldn't figure out why they were low; I even had a bone marrow sample taken to make sure I was producing them correctly and that was fine.
Thinking about the bone marrow aspiration makes me feel like my health had a definitive turning point. When I had my second baby, I had been in the hospital a total of three times in my entire life. I had my tonsils removed when I was in middle school and for two births. I never went to the doctor for anything. It seemed to hit me all at once. Six months after my son was born, I had my first MS symptom. A few years later they were checking my bone marrow for platelets and some time around then I slipped two disks in my back and had pain shooting down my leg (thank goodness that went away with PT). No one in my biological family that I know of has MS. It makes you wonder what I did to trigger it? I grew up in the same polluted area the rest of my family did. I didn't eat any worse then the rest of America does. I had two babies within two years but three of my cousins and my sister have kids that are two-ish years apart. I don't know? I am not feeling sorry for myself; it's kind of interesting and kind of doesn't make sense. There is a study out there that links MS to the Epstein-Barr virus. I never had Mono that I was aware of. Who knows? Maybe one day we will.
Other than that things have been ok. My fingertips and legs are the same. My legs are still wobbly every morning. I have to put my hand on the wall while they do their thing and then when they are done, I move on with my day. My fingertips are the same numbness. I have noticed that I've been a little more scattered again and more easily distracted than normal but like with my energy level, it's so hard to tell what is causing what. My sleep still isn't very regular either. Other than that I haven't noticed any other symptoms. My mood has been a bit low and I've been a bit weepy. I've been really concerned about how things "move on". We can't stay hermit-ed forever. There is a business to run and it appears the kids are going back to in-person school somehow. I've been reading articles about risk of coronavirus infection with different activities and I've talked to my doctor and I still can't assess/wrap my head around my risk. We are just going to have to do what we can to keep ourselves from contracting it and hope for the best. I am scared and that's what is making me upset but really, there isn't any other way around it.
That's all I've got for now. I'll leave you with a few articles and a blog post that I found helpful or informative. Stay safe and for everyone around you, please wear a mask. :)
From October...mask OG
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