Day 33: Footloose and Hickman Free

3 Nov

As promised, my hickman line was removed today.  (It was more odd sensation, than painful, just in case any of you future HSCTers out there are also needle weenies like me.)

Once it was removed, Dr. Fedorenko asked me to lay still for forty minutes before moving.  He then popped back in five minutes later and and says, “How are you feeling?”  I tell him that I am just fine.  He says, “Then, go for a walk!  Get up!”  He’s such a kidder.

I went downstairs to Eric’s room, where the poor dear was still sleeping, and made him get up to hit the road with me.  I bundled up, because I was certain that it would be very cold out, this being Russia and all, and we decided to walk to a Lebanese restaurant to have some lunch.  Lunch was fabulous, the restaurant lovely, and I could write a whole post about how great of a date it was, but this blog is about going ninja on MS, not fine dining, and I have to tell you about a discovery I made about myself while we were out.

It turned out that I was was over bundled for the walk.  Just minutes into it and I was a hot mess.  I am going to stop here to tell you what it is like when an MS patient gets hot, particularly when I would get hot:

Within minutes of getting too warm, my cognitive thinking, which was already shaky, would get real foggy.  I would start to get anxious, irritable, frustrated, and almost immediately would have to end whatever activity I was doing.  While my brain was having its own little meltdown, every symptom of MS I experienced would immediate triple in effect.  My already unsteady gait became a terrible stumbling shuffle, my hands became near impossible to use and the spasms in my back would become painful to the point of tears.

This did not mean that I could avoid getting hot.  It happens.  You go to a store where the heat is up too high, you step outside in August…in Texas, you wear a sweater that turns out to be a very poor choice, but you are in church and have to just deal.

It might make sense to someone who never lived in a body like that that I could just figure out some way to cool off and then all functions would return to “normal,” but the reality was that, once I got hot, I was done.  For the day.  This is why I was the baseball Mom who cheered only from the comfort of her shaded chair and sometimes from the AC of the car, but never standing right behind the catcher and clinging to the fences.  This is why my kids learned to push themselves on the swings as tiny little things, while their Mom sat in the shade, barely hanging on to the tiniest bit of cool I could find.  This is why I prepared meals in a hot kitchen, and then did not sit to enjoy them with my family, but rather went to my room to lay down and rest.  I was done and there was no amount of cooling down that was was going to be restorative.  I had to fight hard to not be cranky, bossy, irritated, and gruff with my loved ones and I often lost that battle on a bad day.

What happened today, was that I was over bundled and I made it to the restaurant, where I took off my coat, removed my hat, and immediately cooled down.  I was not confused about where I was, what I was doing, who I was with, or what I wanted to eat.  I was remarkably cheerful when the waitress approached our table and I was overwhelmed to the point of tears when I realized just how much I have lost with my family and my children and my friends over the years as I have dog paddled along.

I had accepted that I was just someone easily rattled and confused by the littlest things and I had accepted that I was just wasn’t that Mom who hung out and watched the kids on the trampoline or in the pool.

Sitting down for that meal with Eric, opened a floodgate for me of realizing just how much MS stole from me, and just how much I have already regained.   It is a maddening thing to have your brain, your legs, your arms, and even your personality seize up on you and I am kind of mad now when I realize just how much of that I had come to own as my character.

By God’s great mercy, I know that I was not a tyrant always, but I do know that I battled hard everyday to maintain control of a brain that just did not want to work.

Today, I did not battle.  I had a lovely meal, with my wonderful husband and now I weep and blog about it and simply cannot wait to get home to my children and sit in hot kitchens, making cookies without getting angry eyes and take walks with them that don’t end with me collapsed in my bed and done for the day.   There are so many things that I am now looking forward that I didn’t even know to plan on looking forward to.

I also wore mascara for our date.  And now it is all ruined.  Love you all.  Mean it.

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15 Responses to “Day 33: Footloose and Hickman Free”

  1. Stacy Courtney November 3, 2012 at 7:02 am #

    What an amazing victory, Amy! Praise God!
    Love you back!

    Stacy

  2. Brooke Slick November 3, 2012 at 7:32 am #

    I totally get it, and, I’m totally thrilled for you!

    • ericswife November 3, 2012 at 8:25 am #

      I KNOW you get it. This is some pretty cool stuff!! Keep those shoes!! I am so bummed I got rid of mine three years ago!

  3. Jean November 3, 2012 at 8:23 am #

    A PROMISE: “He will restore the wasted years.’

    • ericswife November 3, 2012 at 8:25 am #

      Thank you for this, Jean. I love you and thank God your wisdom has been a part of my journey.

  4. Janette Scarborough November 3, 2012 at 8:25 am #

    Each post if full of promise and we can feel it … you have made it real for us and we too are grateful to a simply awesome God. Yes!

  5. Linda Luckstead Benskin November 3, 2012 at 9:31 am #

    Blessings on you, Amy. As I read this, I wondered how much of my migraine personality affected my relationship with my kids.I comfort myself in the knowledge that our Lord is the great redeemer, and He will bring about renewal for all of us one day. In the meantime, you have opportunities, and your kids are young and resilient. Go forth singing, as our Lord sings over you!

  6. Carla Click Mullin November 3, 2012 at 9:31 am #

    Amy, Thank you so much for this post and for sharing your journey. My mother-in-law has MS, and I knew heat bothered her but I didn’t know how or why. After reading this post, I was almost brought to tears as I am learning more about her and her struggles as you describe yours. Thank you for helping me relate to my MIL better. May God bless you with complete healing and many happy years with your family.
    Carla Mullin

  7. Ginger McBriee November 3, 2012 at 9:41 am #

    I want to say “unbelievable” but I can’t since this is actually happening right before our eyes! Just another reminder that nothing is impossible with God!

  8. Patricia Larson November 3, 2012 at 11:02 am #

    Truly inspirational! If God has purposed, may you be the MS spokesman for those of us who do not understand the intensity of symptoms that afflict MS sufferers.

  9. Pat Walt November 3, 2012 at 11:52 am #

    Praise our Awesome God! Thank you, Amy, for being such an encouragement to me. Your legacy from this blog will be eternal, because you’ve done this through God’s strength and in praise of Him!!

  10. Kathy Tope November 3, 2012 at 1:04 pm #

    Hello there! Long week, no post! It’s been a crazy week but even not checking on you via the www–I still think/pray for you all through the day. It is an absolute delight to see exactly how the MS is being, no–strike that–has been removed!! I just keep thinking on the image of Jesus saying, “Pick up your mat and walk.” And WALKING you are. (I tried hard not to make that sound like a Yoda phrase, but I couldn’t. Sorry) And I’m totally with Mrs. Jean when she said, “He will restore to you the years the locusts have eaten!” I just looked it up and it’s all worth quoting…
    “I will repay you for the years the locusts have eaten—
    the great locust and the young locust,
    the other locusts and the locust swarm[f]—
    my great army that I sent among you.
    26 You will have plenty to eat, until you are full,
    and you will praise the name of the Lord your God,
    who has worked wonders for you;
    never again will my people be shamed.
    27 Then you will know that I am in Israel,
    that I am the Lord your God,
    and that there is no other;
    never again will my people be shamed. Joel 2: 25-27

    Also, interesting to note that immediately following these verses are the ones about God pouring out His Spirit on His people that’s quoted in Acts 2 how the young men will have visions, old men will dream dreams and both men and women will prophesy. I think it is clear how God has poured His Spirit out upon you…way before all of this part of the adventure started, so while it is true that the locusts had a field day with you…God has always been with you and His grace was sufficient even while the thorn remained. But now, in His very great mercy–He Himself has removed your thorn! Thank you Lord—You are so very kind and generous! Thank You, thank You for Your continued Presence and Grace! You are AWESOME and worthy to be praised!
    I love you Amy Peterson!

    • ericswife November 3, 2012 at 1:53 pm #

      While I was crying at dinner with Eric, I told him about Jean’s comment and how I especially loved it because I knew it was steeped in the Word, and then here comes Kathy Tope to lay it out. I love you, Kathy Tope. Imagine the fun we are going to have with MS outta the way!!

      • Kathy Tope November 3, 2012 at 10:22 pm #

        Oh my gosh…dare I dream??? WOW, this is indeed a game changer!! And do you not find it ironic that all this happened while you were eating? Note v. 26 if you will! And I was especially blessed by the acknowledgment of all the different kinds and therefore particular kinds of damage inflicted by the locusts. The great, the young, the other locusts and the swarm…God sees and knows every single little thing and He not only can but will restore all of that which was robbed by the MS. It seriously reminds me of Job. And also this verse which I had to go find, (thanks for indulging & encouraging my addiction to scripture):
        But we have this treasure in earthen vessels, so that the surpassing greatness of the power will be of God and not from ourselves; 8 we are afflicted in every way, but not crushed; perplexed, but not despairing; 9 persecuted, but not forsaken; struck down, but not destroyed; 10 always carrying about in the body the dying of Jesus, so that the life of Jesus also may be manifested in our body. 11 For we who live are constantly being delivered over to death for Jesus’ sake, so that the life of Jesus also may be manifested in our mortal flesh. 12 So death works in us, but life in you. 2 Cor 4:7-12
        It just makes my heart swoon about how fantastically great our God is!! And I cannot wait to see how much fun we can whip up and just throw a whole lotta No Reason Parties. Although I can think ONE big reason to celebrate!
        Oh, I love you BIG!! You make my heart happy!

  11. Karen November 4, 2012 at 8:48 am #

    Amy,
    What an amazing, wonderful, fantastic God we serve. Your post and the comments from your friends served as my devotion to God today! I am loving following your story!

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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