MS Update - 2024

It's been a while since I have checked in here.  I keep queueing up ideas on things I want to share but haven't taken the time to collect my thoughts. It’s been over ten years since my official Multiple Sclerosis diagnosis.  I've had a lot of ups and downs the last six years but it seems most of them are accident related (racoons, foot fracture, IT band issues, shoulder angst, migraines, ankle fracture, etc) and while my MS effects me every day it is minor in the grand scheme of things.

I came across the word disABILITY on one of the MS blogs I read and thought it was a good summary of my MS and me.  I am fighting to retain my ABILITY with my disability.  I learn new things about my illness each year.  This year I had a lot more good days then bad, but found I don't have the stamina I'd like especially when going to multi day events or activities.  If I don't build rest into my schedule then it makes it hard by day three to keep going.

The link below was very relatable for me.  I am working hard to stay present.  Focusing on my goals and not letting the worry of the future with MS ruin my now.

https://multiplesclerosisnewstoday.com/columns/2024/05/21/feel-like-ive-lost-time-living-multiple-sclerosis/

This year as I said has been mostly good. My neurologists say I am stable, my MRIs are holding same with no active disease progressions showing on the scans.  I am on a great med with very few side effects and only slows me down two days a year.  I am still doing physical therapy to continue to work through my deficiencies and am doubling down on doing my homework for that each week.

I am doing better at managing my energy, as the funny thing about taking on a part-time teaching gig while working full time, is I spend at least one day every weekend on the couch working on class stuff so it rather forces me to be in a resting state instead of a working on the house or running around doing chores.  The house stuff gets done eventually, and I have a wonderful partner that is a great cook so I contribute when I need or want to in the kitchen.

I've been diligent about putting my fitness activities on the calendar and following through.  I need to get back to monitoring my nutrition as the holidays have lead to a few more pounds to my bits and pieces.  I have big goals though so diet and exercise will be driving me in 2025 which in turn supports my MS journey.  So I have set my intentions to focus on the now, live life to the best of my ability, and adjust plans as I need to to live my best life.  As they say in my world, I have MS but it doesn't have me.

MS Update - Infusions and CoVID

So 2020 has been a raging dumpster fire across the US but I’m feeling fine.  Here is where I last left you in February.  https://blaesing-thompson.blogspot.com/2020/02/ms-update-and-bunch-of-other-health-st.html I was still navigating food sensitivities, mineral imbalances and starting a new MS med.  Add hiding out from COVID (my dining room table is my office now) middle school tutor (my youngest schools across the table from me every other week) the s$%&show that is the government, plus racist dialog/unrest and the last seven months have been a lot to take in.

Today I am hanging out in the infusion center down at Mercy Des Moines spending 8 hours pumping chemicals into my body to keep it from revolting on me.  I go every six months with this new med.  I had an MRI four weeks ago, and it showed the lesions that formed last fall are healing (YAY!) and that a lesion that formed before I started Ocrevus (late March) is no longer active and no new lesions.  So with MS the doctors can see lesions (little gaps in the protective cover - myelin ) on my nervous system and then they put in a contrast agent and if they have a halo they are considered active.

So nothing active is a good sign that my MS is not progressing with my new meds.  My MS symptoms like the dysthesia of last fall are far apart and a lot more mild.  Likely due to permanent damage to the myelin from when my last med wasn’t working.  I still have parathesia with the weird tingling in my feet and hands along with mild fatigue but the herbs and MS meds seems to be leveling me out.  These meds seem to have far milder side effects.  I get a roaring headache the 24 hours after the infusion, and may have thinning hair which I am countering by adding Biotin.

I still push myself harder then I should most of the time because there is so much life I want to live while I can live it the way I want to.  Our time here is short and I am so grateful that I only have to come for an infusion every six months especially if this med go to use to work for me.

There are many people here at the center coming in twice a week, month, etc for life saving infusions.  I can suffer through the beating, alarms, noisy TV neighbors and nurses coming in to measure vitals ever 30 minutes if it means I can continue to stay fit, spend time with my family and love, and continue the upkeep on this big old house (more on house renos later.  So with that. I will leave you with a post from one of my favorite MS bloggers that captures some of my feels on MS and life right now.

https://www.everydayhealth.com/columns/trevis-gleason-life-with-multiple-sclerosis/when-living-in-a-pandemic-or-with-ms-enough-is-plenty/  “Enough is plenty”

Know you are loved.  Wishing you all a great week.