Stumbling Towards Self-Care

While playing around with different WordPress themes I noticed that some give a tagline option. As I transition from posting on Facebook to only posting on my blog, I’ve been trying to figure out: What’s the focus of this space? Why should anyone give a damn and stop by? 

As I messed around with a slogan, I eventually stumbled upon Trying to live well with Multiple Sclerosis in a country that keeps making it harder to thrive and survive when diagnosed with a chronic condition.

I know. Wordy as hell and not bumper sticker ready.  I could shorten it to, “Trying to figure out MS while living in the US.” Or, “Trying to thrive in a country that doesn’t care if I survive,” which although concise, bumper sticker worthy and dramatic are accurate as hell because: 

  • We don’t have a national healthcare system.
  • Our President thinks more about a woman he beat four years ago then a pandemic that’s infected millions of us.
  • The White House has a COVID infection rate worse than most crack houses.
  • Our President-Elect who is still being blocked from accessing pandemic data is  back-channeling with governors, medical professionals, and private industry.
  • A perfect storm of COVID, influenza, and Americans too selfish not to socialize is about to overwhelm our hospital system.  

Previously my bi-yearly Ocrevus infusions involved taking the day off, spending 4 or 5 hours getting a drug through an I.V., and feeling back to normal by dinner that evening. But because of COVID, I’m stuck indoors for the next 6 weeks, only leaving the house when absolutely necessary. I must remain COVID free for 2 weeks to be eligible for my infusion followed by another 4 weeks of isolation while I wait for my immune system to rebuild itself. And although my isolation technically ends a week before Christmas, being a high-risk individual, I’ll need to lie low until the spring.

So in honor of living in a country that doesn’t give a shit, I’ve decided to spend the next 5 months focused on caring for and writing about my shitty, chronic condition. If I’m going to be stuck indoors, I might as well be as self-care compliant as I am COVID compliant. 

I won’t post daily but when I do make a connection or notice a change, I’ll write about it. I’m going to trust the process and see where this leads me. Who knows? Maybe I’ll stumble upon something fascinating and by springtime, figure out what it is I’m supposed to be focusing on and writing about.

2 Comments Add yours

  1. Since I have extreme heat intolerance I’m indoors from May through September under regular circumstances. This year it’s basically been since mid-March. I’m so over selfish assholes, my head feels like it’s going to pop off. And yet I’m one of the lucky ones because I’m not on a b-cell depletion medicine, and the one I’m on is used to treat SARS1 and MERS so anecdotally I might have some coverage. Be safe!


  2. LindaBP says:

    The good news is that I stayed healthy back in May after depleting some B-Cells, and I’m lucky to be able to stay home & wait it out with a husband and have children who are grown / independent. So I’m feeling pretty confident about the next 4 weeks (my infusion is tomorrow).

    That’s cool that your medicine treats SARS also!

    Like you – I’m just real fucking annoyed with the 72 million Americans who refuse to see crimes happening in plain sight but are completely convinced there are multiple criminal conspiracy theories occurring behind the scenes. I wonder who from the FBI will be in charge of the National Cult Deprogramming Task Force that will need to be formed?

    Never been so exhausted by a public figure in my life.


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