Feelin’ Good, Like I Should


Heading into YEAR 9 POST-HSCT on a mission!

That’s right. Last month was my 8-year anniversary of the HSCT (hematopoietic stem cell transplant) I had for my MS in Moscow, Russia.

8 years of no injections, infusions, drugs or treatments related to halting the progression of my MS.

8 years of my MRIs looking just like they did in 2013. Hell, I rarely went 6 months without a change (growth or enhancement) in lesion status PRE-transplant!

Have they been 8 blissful years with no setbacks or bumpy side roads of issues? Umm, that would be a big fat NO.

My struggle with debilitating trigeminal neuralgia yanked about 4 of those years right out from under me. 3 surgeries in 3 years, topped off with cranial surgery, was not exactly what I’d call a “highlight”. BUT, I’ve had a solid 1.5 years of no pain since that last invasive surgery for which I am grateful every freaking moment of every day.

Yes, my old symptoms will flare if I have even the most low-grade infection (with or without a fever). Your MS knows things…sneaky bastard that it is, even before you do.

I’d be lying if I said the immobility in general during the pandemic hasn’t kicked my ass. Not moving does not equal sustained levels of strength. Am I the only one who sat on my ass for the last year waiting for some type of update on the planet and said screw it to exercise?!

So, the mission. My mission as I celebrate my 8th stem cell birthday is as follows:

  • To continue advocating for MSrs seeking info on HSCT
  • To continue co-hosting the @themsgympodcast and collaborating with advocates within the MS/chronic illness/disability space
  • To put continued effort into bringing to market the stylish mobility device I created for people just like me who have balance/mobility issues. **Confession…THIS IS #1 on my list. Want more info, hit me up.
  • To have and show gratitude on the daily for the opportunity to have had HSCT



3 responses »

  1. Thank you for your article. As always, it’s written with a tongue-in-cheek attitude 😉 brilliant.
    -HSCT June 2018

  2. Hello,

    I’m here in Russia now for my AHSCT and 6 days from leaving! Seeing your story 8 years later gives me so much hope! I wish I could have met the patients here, now… but there isn’t really a common room to do that.

    I look forward to reading more!

    • Hi Melissa! I’m so happy for you and the fact that you have been cared for by the best group of people on the planet, including Dr. Fedorenko and his staff. I’m actually 9 years post right now and just haven’t had the time to update my website. That’s what happens when you have HSCT and you get to continue living life. You get distracted! In the very best way, of course. I completely understand about not being able to meet with other patients. When I was there, there were only two other patients and they were only there for a few days. I was there for most of the month on my own. My mother accompanied me, but it’s not the same as having other HSCT patients to commiserate with. I wish you all the best moving forward. My number one piece of advice is patience and, to the best of your ability, ignoring preconceived timelines of when you should or shouldn’t be seeing improvements, if any, etc. Rest and heal and remember that the ultimate goal is to halt the progression of your disease. Much love to you. ❤️

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