Still I rise

Ever had that feeling where mid week, usually on a Wednesday, you start to lose steam? You feel your body slowing day and taking longer to respond. Your mind is getting sluggish. And you feel like you just need a really good rest to rejuvenate yourself? That’s what 7.5 months post Round 1 of Lemtrada feels like. My most recent blood test shows that my Lymphocytes are at 1.2, with a normal count being considered 1.0 to 3.0. This is the highest that my levels have been at since treatment. To recap Lymphocytes are white blood cells that help protect you from infection and are referred to as comprising your secondary immune system. So essentially this treatment kills your Lymphocytes in order to rebuild your immune system from a scratch like a reboot for your system in hopes that the cells which trigger MS relapses won’t be present in this new fancy immune system.

The good:

  • My monthly blood tests have all come back clear
  • No infections or serious side effects
  • My vision has NOT gotten worse
  • No taking daily injections

The bad:

  • While my extreme fatigue had faded off around month 3-4, it seems to have come back with a vengeance and I often feel really beat by about 1pm during the day
  • I still fucking hate blood tests
  • Only 4.5 months before Round 2 😱
  • Work has not been as supportive as I would have hoped

The ugly:Although my vision hasn’t gotten worse, a few days ago I experienced numbness in my hand and then in my foot (it has since returned to normal)

  • The MS One to One Program that comes with the Lemtrada treatment at a $180k price tag, has been disappointing. The nurses are supposed to check in with you and send you reminders for blood work. Neither of which have been happening. Not a big deal in the grand scheme of things. But after doing the treatment, understanding the high cost and reading about other people’s positive experiences with the program. It’s left me feeling pretty isolated and on my own. Which I guess isn’t that different from how the average person with MS feels when trying to navigate the healthcare system (along with everything else)

Trying to remember the following:Appreciate the small victories

  • I’m better today than I was a year ago
  • Just breathe

On that note…I still got this<<<<<<<

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