Weeks 30 & 31 - Eleven weeks in

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. :)

Blog: The Risks - Know Them - Avoid Them

From Camping To Dining Out: Here's How Experts Rate The Risks Of 14 Summer Activities

If 80% of Americans Wore Masks, COVID-19 Infections Would Plummet, New Study Says

From October...mask OG

Weeks 28 & 29 - Quarantine your Mother

Weeks 28 and 29 - Post Lemtrada

May 10, 2020

Blogger made some changes to it's layout and it's taking me a while to figure out where everything is.  It's been 60 days of quarantine-ing.  We've celebrated two birthdays and mother's day; next week will be birthday number 3.  I've heard of some creative "social distancing" birthday parties but we are pretty boring so there is nothing creative going on here. In the party sphere anyway.

I haven't been writing much; not even notes to myself.  I think I've gotten to the point where rehashing brings me down.  Also, it goes against the 'being in the moment' mantra.  I've been reading and listening to fiction lately just to think about something else.  I've also been doing a little yard work, watching a movie or non-news TV shows and we've been breaking out the board games.  Fun fact that my husband shared with me: board games became popular during the depression when people didn't have money to go out for entertainment.  We've been talking about habits that will change after this like habits that changed after the Great Depression.  I think one thing that will change for a little while is that more people will start gardening and/or having a home chicken coop.  Urban chicken coops were already starting to get a little popular.

So I don't really have any notes to remind myself of what's been going on for the last two weeks.  I can tell you that I had a telehealth appointment with the PA from my neurology office.  We talked about my next MRI, Vyvance, my immune system/blood levels, the pandemic and my next Lemtrada infusion.  I had made a list of questions and "when will I need a new MRI" was on my list.  I am actually due for one now.  They like to do them 6 months after a new treatment is started to get a baseline but because of the current situation and because I am not having any clinical progression, she is recommending that we wait.  She said it wasn't worth the added risk right now.  My second infusion of Lemtrada is going to be a 'wait and see' situation as well.  I stopped taking Vyvance for now and we are going to see if it has any effects on my bladder and how much negative effect it has on my fatigue.  She is happy with the way my blood results are going (I have another one next week, already).  I asked about my immune system levels.  I was wondering if there was a certain number that I needed to hit with my Tcells to feel safe or more protected.  The answer is "no" to a certain number.  She said that now that I am over 100 on my CD4s (helper Tcells), she isn't as worried about me but everyone is a little different with how their cells react/fight off viruses.  She said I still need to take all the precautions everyone else is taking (washing hands, maintaining distance, etc) and that it was important to continue to take my Valcyclovir everyday.  She also pointed out that we are learning more everyday and hopefully in another month and definitely by October we will be able to better judge my risk.

Our state Governor started "reopening" the economy at the beginning of the month.  First restaurants and stores were allowed to open at limited capacity and following certain rules (according to a local newspaper, very few are complying completely or at all).  Last week salons and gyms were allowed to reopen.  I don't have a problem with slowly reopening things.  It has to happen sooner or later but it would be nice to know how many asymptomatic people are out there and to have a way to discover another outbreak before it shows up in hospitals.  As a Country, we have no plan. "It's just time to reopen". Our state has a plan but they aren't even following it.  Our 7 day average for cases was dropping in mid-April.  We had about a two week drop in case average (we still aren't testing enough people though) then around April 24th it started rising again and now it's higher then we were at our original peak in early April.  But golly there were protests of a couple hundred people who also had to bring their guns so we are reopening the economy anyway.  I will also point out that the original protest was on April 18th and 3 days later daily cases were on the rise again.  Coincidence? Maybe?

If you are wondering if I was planning to go out to dinner sometime soon, the answer would be "hell, no".  We might know more about the virus in general but we still have no idea how prevalent it is in the community and the United States is too full of morons who feel wearing a mask to protect others is too much of a burden on their personal freedom.  Sane people out number the morons but it only takes one infected moron to infect the rest of us.  I will continue to do my shopping by delivery and curbside pickup and I will continue to be very grateful to those people providing these services.  Sorry, if I was overly harsh to morons or if you are one but I have no tolerance for selfishness or those who ignore experts and science.

Huh...well, I know this will make everyone very sad but Blogger doesn't seem to have emojis anymore. :( I guess I'll leave you with pictures then. I've had a digital camera for about 10 years now and I am finally getting around to messing with the settings. Enjoy! ;)