Taking it Easy, Whether I Like It or Not

17 Jul

In early July, the numbness returned to my feet. I ignored it for a day. After a few days had passed, I found my left hand was numb and the spasms in my ribs were picking back up. On top of all of it, I was covered in fatigue so heavy that I didn’t feel like I was conquering my days so much as sputtering through.

The MRI was scheduled for July 14. My neurologist called me to discuss how I was feeling, leading up to the MRI. I told him about how my symptoms were quickly returning. He decided that he wanted to see me in the office after MRI, because it seemed likely that I was progressing.

I did the only thing I knew to do, outside of prayer, I Googled “HSCT, MS, USA”. If you’re a long time reader of this blog, you know that it was something similar that landed me in Russia as the first American HSCT patient in that facility. I have a deeply conflicted love for Google.

My quick search led me to a page for a blood cancer hospital in Denver, CO that is conducting FDA trials for HSCT. I easily found an e-mail address, wrote out my history, and sent it out like a shot in the dark.

“My name is Amy Peterson. I had HSCT for SPMS in Moscow, RU in 2012. I was a 5.5 on the EDSS when I got to Russia and became about a 1-2 after that for 8 years. In January 2020 I relapsed with evidence of enhancing lesions on brain and spine. I had 8 years of remission with HSCT. It is the only treatment offered that I believe will benefit me. Are you accepting patients for study who have already done HSCT?”

This led to a very fast back and forth. Yes, they would take a look at my case. They do take former HSCT patients. My neurologist was totally on board. This was the plan: I get the July MRI, get proof of further enhancing lesions, and then make plans for Denver.

But then, I did the MRI. The results? No enhancing lesions. The three on my brain were gone, with evidence of sclerosis in its place. The lesion on my spine was greatly reduced, though still slightly in play. I’ve never taken such good news so hard.

My feet are numb. My left arm is weak. I don’t have the energy it takes to carry on a full day. My cognitive thinking is exhausted. How can I have no enhancing lesions?

The answer was that I had not taken rest seriously enough. My brain and spine are working to heal, and I am use every bit of any advance in healing I get. I had a good talk with my neurologist, who you should know by now I love madly, and it was agreed that I needed to take rest more seriously and also that I needed to get back to my Scripture memory work.

Resting is no joke. In the months after I was released from the hospital, and up until early July, my resting philosophy was that I would work until I was exhausted and then rest for an hour or so until I was only kind of exhausted, and then I would work for another couple hours before I finally ended the day exhausted. But, I would always say, not dead.

The physical therapist who treated me in the hospital told me something very valuable that I packed away and forgot. She told me to never work until I am tired, but to rest BEFORE I get tired. As an example, she would walk me on the belt for ten minutes, and then have me sit for five minutes, then walk for ten, then stop. The rest breaks seemed silly, but, I realize now that I would have collapsed if she made me walk for 20 minutes with no break, but instead, she had me walk for 20 minutes in 30 minutes, and it was just enough.

She told me that neglecting rest was going to make my recovery take longer. Oh, hindsight.

So, long story short: I am still hanging on to my HSCT remission from 2012. My diagnosis of MS is stable with no enhancing lesions. My recent surge in symptoms from January relapse was my own fault. I don’t regret the way I hit the ground running because, honestly, I had a lot of fun and got a lot done, HOWEVER, I am taking the lesson and will be aggressively resting for the foreseeable future. My numb feet are my barometer. I find that when I work to take it easy, the numbness lets up. Perhaps many weeks of babying myself and I’ll get passed this little hiccup.

I’ll leave this update here, with the hope that it’s all quiet between now and January, when I go for another MRI. While I’d rather not relive the anxiety I felt over the past couple of weeks, I have to say that I was greatly encouraged to see how quick and easy it was for me to find HSCT being done right here. We’ve come a long way.


One Response to “Taking it Easy, Whether I Like It or Not”

  1. Joy Dillman July 18, 2020 at 5:20 am #

    You are amazing with your writing and creativity. You rely on God’s strength when you are weak and that’s a powerful ministry.

Honest Truth About Me: I'm going to need a lot of cheer leading to see this through. Your comments and encouragement mean the world to me.

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