October 5, 2021
Well I broke down and reached out to my neurologist...
It went something like this:
Hi Dr A*. This last week it has moved to my hands and it's just horrible. My hands and feet 'hurt' all the time, they are either achy or burning, I feel like there is something crawling under the skin of my lower legs making them feel sort of tense and like the calves are flexed. |
I went to see him that evening after work. He sent me for 3 days of IV Solumedrol.
IV Steroids work best when given at the start of an exacerbation. I didn’t know this so I waited and waited till I was totally beside myself.
Most patients would have been admitted for an exacerbation that was increasing symptomatically like this. But I have to be home at night for my mini. So I'm going to do it outpatient. Here is how it goes:
Day 1: Head to the city after working all day for Dose 1. Her dad will meet the bus at my house. Get 2 hours of sleep. I had a great Infusion Nurse who explained “When you are laying in bed tonight looking at the ceiling, you can not get up and paint it: Even if you have the paint. You may feel great and full of energy, this does not mean that you can paint a ceiling.” I don’t think that she realized how apropos that example was. I felt horrible driving home.
Day 2: Put the Mini on the Bus. Head in for Dose 2. Get there and things are not feeling better. My legs are jumping all over and my Infusion Nurse tells me to email Dr. A.. My Infusion Nurse also says that since I am not feeling much better already then it might take a little longer to feel positive effects. Once the treatment was done I headed back to my home town to pick up the mini from school. We have a special trip to Portsmouth, NH planned. No, I won't reschedule it. Because I'm a mother first.
Day 3: Put the Mini on the Bus. Head into the city for Dose 3. It is Friday. I have had less than 5 hours of sleep since this started. I was surprisingly upbeat. I don’t feel better, my symptoms are all still there, but they aren’t bothering me because I am hopped up on ‘roids.
Day 2 of IV Steroids. October 7th, 2021
Hi Dr. A
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After my infusion finished I headed across the city for another appointment. I would be taking part in a study and this was the first day. It meant that I needed help with care for the mini after school but her dad met the bus and kept her till I was done.
*For the remainder of posts about parenting with Multiple Sclerosis I will refer to my Neurologist and Dr. A, my PCP as Dr. B, and will just add letters for additional care providers.