Relapsing-Remitting MS is a nightmare that you keep waking up from, then going right back into. Sometimes the nightmare ends when you wake up. Sometimes you keep having the same theme pop up again and again, for months, or even years.
I then spent 4 days back and forth to the hospital for IV steroid infusions and was also treated for an asymptomatic UTI. Ugh. Prior to being on Ocrevus, I never got UTIs. Unfortunately since being on this medication, I have now had 2 asymptomatic UTIs that have ended up causing significant flare ups of my symptoms (Remember the Pseudo Relapse I had last January?). As much as no one wants to feel burning when they pee... it is actually frustrating that I feel no warning signs of these pesky little infections, as it would make them easier to catch before they affect my brain!
After laying low and resting as much as possible, I had a brief 1-2 day calming of symptoms. Walking started to become easier and I was using my cane to ambulate.
Then the nightmare returned, I was barely able to complete thoughts, feed and bathe myself, and had to go back to the hospital for an overnight stay and a 5th round of IV steroids. Back home the next evening. Waited to hear from my neurologist. Saw the neurologist. She didn't think it was a full relapse (Thankfully!), but yet another pseudo-relapse caused by a damn UTI. Sigh.
She assessed my walking issues and was not convinced they were entirely neurologic. It is likely due to the instability of my joints from Ehlers-Danlos Syndrome as well as the lack of feeling and numbness from MS.
Fortunately I am feeling significantly better at this point. Still, my threshold for anything is very low and I am constantly frustrated with feeling these limits.
What a fun game it is to try to figure out - Is this my MS, Ehlers-Danlos, an occult UTI, dehydration... etc.
Despite looking normal and being able to function with a little bit more ease due to adapting- It makes sense that I'm still dealing with vertigo, spasms in my face causing drooping of the left side, cognitive problems such as high sensitivity to over-stimulation, numbness, tingling, and so much more.
Looking normal is one of my biggest obstacles these days. In fact; I have become such a master at seeming like nothing is wrong that I convinced myself I was well enough to work a part-time job. Then I convinced an employer and entire team! And then I burnt out after only 2 months on the job.
While I am proud of my very enthusiastic attempt at working- I knew I needed to leave the part-time job to return to taking full-time care of myself. It was with great sadness that I handed in my resignation just yesterday.
What does this mean for me, now?
Back to the drawing board! Quite literally. I've decided that this is the time for me to stay committed to my artistic practice. I'm not "giving up", by any means. I'm refocusing on the priority of keeping well. My neurological health is number one.
2020 has been bittersweet. I want to THANK YOU for all the love my art has been getting. With now being a full-time artist, your support is appreciated even more than ever. That being said...
My shop is now updated with currently available paintings!
Modeling was always a big part of my life.
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