Time for my usually annual MS update.
To be fair I lost a lot of last year with trying to get Abby through her Eagle Project, and Eagle and Graduation ceremonies, choir and band concerts, gatherings, all the last things of a high school senior and I did a lot of this with a boot on my foot as the birthday curse hit again with a broken foot in late March that carried me through May. So I guess this update is for the last two years.
One of the things with having a chronic illness is one becomes hyper vigilant of all the aches and pains and weird that pop up. Here are a list of common MS symptoms and mine include: Fatigue, Brain Fog, Occasional Acute Pain, Spasticity, and Pins and Needles (this one is nearly constant in my hands and feet) https://www.healthline.com/health/multiple-sclerosis/lingo-defined
I work really hard to try not to get overly stressed and as a result most of these things leave me alone most of the time. It is hard to know what is caused by MS and what is a new an exciting annoying health adventure. One thing I have learned is I have to keep doing my homework on research, advocating for what I need, and paying attention to the signs.
That said, I spent the end of April and beginning of May feeling pretty good in the mornings, and feeling like I am moving through molasses in the afternoon. That false hope of a great day crushed by the demon of MS day after day for a couple of weeks. It doesn't mean I am not terrified that the next micro flare won't be permanent, but I live my life with hope that tomorrow will be better. It makes me grateful for days that are awesome all the way through where I am able to do all the things I want to get done and not have to pick and choose knowing I won't get past noon. It also reminds me to ask for help, and give myself some grace when I struggle.
Yesterday I had one of my twice a year infusions of Ocrevus. Right now it is likely the best MS disease modifying therapy (DMT) on the market for stopping the progression of MS and greatly reducing inflammation of the nervous system. I used to go down to MercyOne in Des Moines for these treatments and it would burn a whole day in a big noisy infusion center, but with several friends going to our local infusion center for treatment, and getting moved to the faster treatment I went from almost two hours in the car and 5-6 hours in the center, to walking to my infusion, and in and out in four hours. I even had my own room. It was awesome. The article below is a great recap of what the DMTs really do for us and I added a great quote from it below.
"Ocrevus is a disease modifier, but it isn’t a cure. MS is slowed or halted, but not eliminated. The damage is done, and short of a remyelinating therapy, I may not get any better. In the meantime, the hope is that I won’t get any worse. With that goal in mind, Ocrevus seems to be an excellent time-buyer."
With that my last two MRIs and health checks with my MS support team have shown that my illness is stable. No new activity showing up, no growth of the weird tumor in my brain, no new symptoms so I will just keep on keeping on. Advocating for what I need, managing my stress (really so terrible at this), doing my best with regular exercise and good food choices, and making plans to live my best life.
I am surrounded by people who care and support my mission and for that I am grateful. Wishing you all the best in health.
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