I’m hanging in there. Last night I put my faith in the parts of my brain that still work on dedicated walks, to attempt to take the dog on a walk with my husband. I got a half a block and felt my body working hard to get oxygen in my lungs. Ever since my Covid infection in January, I’ve been needing my occasional, once in a while asthma inhaler, everyday. I’m still not used to that. So my husband turned back with me, to escort me to our house, all the while Goldie picking a fight with the leash to indicated, we are going the wrong way! She was a good sport though, about to go in the door when he unlocked it for me, and overjoyed when she got to turn around, and complete her walk.
It’s been over a month since I’ve walked through our neighborhood. I’ve felt myself slowing down. All the while telling myself I’m just tired. Spending my days with the kids working on their school assignments, because I with Covid around, and me immunocompromised, we kept them out of in person school this year too. It’s beautiful, to watch their knowledge and quest for learning and I count my blessings for this experience. But I feel myself yearning for normality. Yearning to send them on play dates without worrying what germs they’ll bring back. Yearning to go back to a life when all I had to worry about was my MS of my decreased immunity from my brain and spine preserving MS Treatments. Anyone out there feel the same? 🙃
This last month of less mobility has me questioning if I am progressing independent of new lesions, or if it’s just the crap gap. (Crap gap is a term coined by MS patients to describe the last one or two months before their next Ocrevus infusion.)
I never want to discount my ability to bound back, as I’ve done it over 18 years of MS, but then again it’s 18 years of MS. At this age that outdated statistic is often on my mind, that 80 percent of relapsing remitting MSers will have progressed to SPMS within 15 years.
Since I stared this post, I have to update with happy news that I was able to complete a walk around the block, and on my own. It wasn’t exactly an easy, carefree walk, but though marred by creeping anxiety that any moment I’ll fall off that MS cliff. But I made it back home!
So right now, I’ve got the end in sight, with my Ocrevus infuson scheduled for May 6th. In the MSwhile, I’m calling insurance, the infusion center, to make sure there is no miscommunication this time with pre authorization. If you are having difficulty navigating through the approval process, or with making sure your ensuing infusion are properly scheduled and approved by insurance, call the good folks at Genentech Access Solutions. You get a team of Patient Navigators assigned to you, to ensure things go smoothly with all your infusions. My Patient Navigator helped me assemble a list of questions to ask my insurance, to ensure that everything is properly filed with this infusion. It was a big help, to have someone go through all the steps, see which documents are needed, and even look up approval codes to make things easier while talking with the insurance company.
The last Bit of life to include is a really good one. In case you haven’t heard, the Multiple Sclerosis Foundation offers an online, virtual art class, via zoom. The class meets weekly, every Monday evening at 5 pm PST/ 8 pm EST. I often miss it because I’m so drained from the school day, but this week is Spring Break and I got to draw and color a picture of a wave breaking. The class is taught by my good friend Hannah, who is an artists and trained in Art Therapy for patients. If you have a free hour on Monday evenings, I highly recommend it. Next MS Foundation Class with Hannah Garrison
That’s all for this week. I’m gonna keep enjoying spring break, and I hope you all have a lovely weekend! May God be with you til we meet again! 🧡🤗🧡