What’s going on in a day in the life with multiple sclerosis

What’s going on in a day in the life with multiple sclerosis

My Ocrevus infusion is going to be on Monday August 14 now. Not the worst thing. My infusion for Rituxan was scheduled originally for July 17th so the change to the new drug set us back roughly a month. My neurologist told me that even though Rituxan is given on a six month schedule, the drug could last up to 9 months effectively. I feel fine and now I only have 5 days to receive an infusion so I am certain it’s all good.

I was hoping to increase my nursing hours from 4 hours a day to 8 hours a day or minimum 6. To do this I am supposed to see the doctor so a new order can be written up with a reason why the increase is needed. Unfortunately when the approval for Ocrevus came in, it wasn’t approved for the city infusion site but for a site closer to my home. That works better for me but now I won’t see my neurologist for that order to be written. She is hoping she can write a letter and get the increase without seeing me but I know they won’t accept that. Luckily my daughter is going to college in the city and in a few weeks she’ll be moving into her dorm. I will have help to get me down to my neurologist’s office so she can see me and we can submit the request. It all worked out.

However with everything working out, my tendonitis is flaring up. I have not worked out since my last cortisone shot in June. Every time I tried, I felt the pain slightly in my shoulder. It was enough to tell me, keep it up and you’ll be sorry. So very reluctantly, I stopped working out everyday. I go to therapy 2 times a week which will be 3 when I get the increase in nursing hours and have the help. I do the weight machines there. We are working on building my upper strength without hurting my shoulder. I also have my MS fitness coach once a week who comes in and does the stuff I’d never do because it’s hard for me like lifting me knees or going on my tip toes. That’s now what I’ve had to adjust my exercise to. The good thing, I guess, is with the Ocrevus infusion on Monday I get steroids which should help take the inflammation of the shoulder tendonitis down without another cortisone shot.

That’s what’s going on in the day in the life with multiple sclerosis.

4 thoughts on “What’s going on in a day in the life with multiple sclerosis

  1. I am glad to hear you have your infusion scheduled. I am sorry insurance took so long. Everything works out it just sometimes takes a long time!

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