Kinda Like a Sunburn

3 Jun

People who have gone through chemotherapy regimens are cautioned to avoid excessive sun exposure for a time because of an increased risk of melanoma.  Being pretty well passed the danger zone, I hosed myself down with heavy duty sunscreen and got in the pool with the kids last week.  Well, I hosed down the front of my body.  I guess I thought my back, shoulders, and the backs of my legs were covered simply by being in the vicinity of application.

Twenty minutes was about all it took to leave me lobster red.

In the painful days that followed, I couldn’t help but think that this was about as close to MS feeling as I had been in some time.  I thought I would write about it to help some of you who might wonder about your friends who look great, but feel miserable.  Sunburn doesn’t mean you get to sit in a wheelchair and have meals brought to you.  Sunburn doesn’t excuse you from laundry, answering the phone, paying bills, or being nice to children and strangers.  All the same, sunburn makes every minute one in which you must determine to stay in the moment and avoid simply screaming, “I have a sunburn!  Please stop touching me!  Stop asking me dumb questions that you could answer yourself!  Let me check out of life until I feel better!”

I had two days where I was in a reasonable amount of pain.  During those two days I had to be careful how I sat, I changed my gait slightly to accommodate, I planned meals that meant little to no time in the hot kitchen, I scurried from ACed venue to ACed venue to avoid the heat from the sun on my already inflamed skin.  I was in a constant state of irritation.  At the end of the second day, it occurred to me that I was experiencing something that most people could relate to and that might help explain the invisible symptoms of MS to the layperson.

MS is a bit like a second degree sunburn that never goes away.  It makes you tired, cranky, short of attention, and very short on patience for nonsense.  Seeing an MS sufferer in a social setting and with a good attitude means that you are witnessing the constant turning away from one’s desire to lash out and/or hide in a cave.  If you know an MS patient who shows up with full make-up and a smile, you are witnessing something way more than you know.  If you see the occasional crack, please give mercy.

I still have some lingering symptoms, but I feel so much better than I did that I’m as good as cured in my book.  This silly sunburn gave me a bit of a pause to stop and reflect on just how far I have come, what I endured, and what hundreds of thousands of people who live among us quietly endure daily.

If you’ve ever had a sunburn, you still don’t know what it is like to have MS, but I think that in some way you can appreciate the constant, nagging undercurrent of torture that MS is for so many.

(Just wanted to add that I still cleaned out a super gross chicken coop, swept and mopped my floors, and did countless loads of laundry with my sunburn.  I said that it is kinda like MS, but it’s still nowhere close.)

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One Year Later

1 Oct

It is now one year since I arrived in Moscow and in two weeks it will be one year since my transplant.  I continue to heal and I thought it would be appropriate to make an update about how I am doing so far.

I think that, if HSCT was an advertised product, I would be the much lauded poster child.  My results have been phenomenal.  However, even as I celebrate my body’s incredible response, I know that others have not recovered as well as I have.  All patients who have gone after me have seen the ongoing progression of disease halt, though not all have seen a reversal of symptoms as significant as I have.  That’s the thing about poster kids – they have tiny print under their image that says, “Individual results may vary.”

If I compare myself to how I was doing this time last year, I could easily say that I am completely symptom free.  Though, if I compared myself to a body that had never experienced MS, I would notice a handful of symptoms.  This does not disappoint me in the least, but I want to post about these lingering symptoms to keep future patients aware of what they might expect.

  • I still experience weakness in my legs, the left leg in particular.  I can easily jog up and down stairs most days, but there are still days when I find that I must grip the rail and take it easy.  A recent cold made this symptom more pronounced.
  • I no longer have painful tics in my face.  I experience occasional twinges that feel like a tic is threatening, but they are short lived and never reach the level they once did.  I am able to continue talking, eating, or whatever without fear that they will escalate.  I am hopeful that the twinges diminish with time.
  • The tight band of the MS hug is gone completely, but I do still have days when the pain of the spasms is on the same level as it was pre-transplant.  I am able to work through it and it is not as uncomfortable without the added stress of the hug sensation.
  • My cognitive thinking is completely healed.  I no longer have a confusing fog that over whelms me.  I know this post was supposed to be about symptoms I still have, but I had to sneak in a symptom I DON’T have.
  • My left arm is still weaker than my right arm.  It is significantly stronger than before, though it does still fail me from time to time, some days more than others.
  • I do still experience a certain amount of bladder issues.  These are not as significant as before, though it still continues and I had to report

There.  That’s all the lingering MS I can think to tell you about.  While some days are more “MS-y” than others, I am still far better than I was last year and cannot complain about my results.

I continue to thank God for all of you, for this opportunity, for the good people of Russia, and for the work before us all.  Thank you for being such a big part of my healing – for your financial support, your prayers, your check ins, your patience with me as I heal, and for your love.  I am honored to be a vessel of so much glory.  My cup overflows.  I love you all.  Mean it.

Ruth – Before HSCT

4 Sep

For comparison, I thought I would post this video of me presenting the Old Testament book of Ruth on Mother’s Day, five months before transplant.  Even during that time, I often heard people say, “You look great!”  While I appreciated the sentiment, I knew that I looked nothing like I felt.  Aside from the fact that they are two different books, I want to make a brief list of the differences between these two presentations.

  • I used a cane.  Though my balance was pretty good, I needed the cane to lean on as my legs (left leg, in particular) would become heavy and hard to drag around.
  • Because of the extreme discomfort and pain brought on by the rib crushing sensation of the MS hug, I took any opportunity I could to hunch over.  This sensation also made breathing difficult and I paused often to take in quick, shallow breaths.
  • Though it is invisible to the eye, my face and throat shocked me every minute or so with painful spasms.  These happened when I stretched my face too much or spoke too quickly.  I no longer have these spasms and presenting Esther felt like I was unbound and set loose.
  • In order to be able to do this presentation, I had to drink 3 cups of coffee, 20 mgs. of doctor prescribed amphetamines, and sequester myself from any and all  conversations for a full 24 hours before, during, and after.  I went home that day and was useless for three.  In contrast, I presented Esther three times with only half a cup of coffee and went home and did two loads of laundry and made dinner that evening.

I believe The Word is still clearly shown in this video of Ruth, though I think it also helps show me just how drastically I have been repaired.  I look forward to what further healing brings.

Esther 1-8

2 Sep

I did it!  Three times in one morning I was able to stand and present 8 chapters of the Old Testament book of Esther.  The ability to do this in this manner is a gift from God and my face still hurts from smiling about it.  Thank you to everyone who prayed for my healing in this area.  I love you all.  Mean it!

Reposted From Facebook

7 Jun

I know that n0t all of my readers here follow me on Facebook, so I wanted to copy this exchange for everyone to see.  The first part was written by my dear friend Carolyn and the second part is my response.  It’s okay if you get a little goosebumpy.  I did too.

Carolyn wrote:

For any of you who know (or know of) how debilitated Amy Peterson had become because of her MS, I want you to know what the stem cell transplant did for her. She left the US needing a cane and/or a wheelchair. She had no energy. Her body would not do what she wanted it to do. She went for treatment hoping, but not knowing what the results might be. But the results were a miracle! Tonight I saw Amy RUN IN A STRAIGHT LINE WITHOUT WOBBLING AND WITHOUT LOSING HER BREATH. She just flat out broke into a run. I nearly fell down in awe of the sight of it. She runs. She laughs. She gets down on her hands and knees to clean things and then GETS BACK UP!!! God is so gracious. So gracious. For all of you who donated money for Amy to go get the treatment in Russia, your investment is returning 100 fold. You gave this amazing woman the chance to participate vigorously in her own life!!! SHE CAN RUN!!!

I responded:

Here’s my crazy, weird running story (get you a coffee – I’m feeling wordy) : When I was a kid, and up until I was about 14, I really enjoyed running. Not athletically, I just enjoyed getting places quickly and I liked everything I felt in my body when I ran. This stopped and I just assumed it was because I was turning into a mature young lady. Ha. When I was 17 and a quadriplegic, I remembered the feeling of running and promised myself that I would do that again some day. I never really did, though I did learn to walk again and that felt almost as good as running.
Fast forward to two months ago. I was at Ian’s baseball game and at the concession stand to get water for Ian when I heard some pretty excited cheering coming from our field. Not wanting to miss anything, I started to walk quickly back. Without being fully aware of what I was doing, I started to run. As I ran, it occurred to me that I was running (say it like “Forrest Gump” in your head. I did.) It was about a twenty second spurt of running, but it was exhilarating. I chalked it up to odd fluke born of a mother’s love and desire to not miss the game. A week or so later, Eric and I were in the car in the driveway when I realized I had left my phone in the house. Not wanting to irk the husband, I ran back inside to get it. Again, my head was a whir of thoughts. I was running! 
Last night, Carolyn Evaine Counterman came by and I invited her to come across the street with me to tend to my latest gardening project. As we cleared the gate, I realized that I had left the water on longer than I thought and I broke into a sprint to shut it off. Carolyn went wild at the sight. It was the first time I had done such a thing with a captive audience. 
I am writing all of this out because reading this post by Carolyn was the first time in 8 months that I have cried with the realization that THIS. IS. HAPPENING. I am getting better. Better than I dared to say I had hoped for. I have been overwhelmed with process of getting over the chemo and getting back into the swing of the day to day – so overwhelmed that I sometimes forget that I ever really believed HSCT would work. Carolyn’s testimony here reminded me fully. It worked and it is continuing to work. Not sure how much running I have in me, but I know that I can book it if I have to and that is a pretty exciting place to be.