Head, Shoulders, Knees, and Toes

14 Dec

This post will serve as a baseline for what I am hoping will be a health graph that only goes up from here.  No more losses this year, team!

This will help in the months after the transplant to determine how much I have regained, and to determine any new losses.  Statistically, I should recover about forty percent of what I have lost already, while stopping any further disease progression.  However, you and I both know that statistics are not the determiner of outcomes.  God is.  Let’s shoot for 100 percent recovery, shall we?

I’ll start at the top and work my way down.

  • Mind: I suffer from moderate cognitive thinking fatigue.  A healthy brain can start a repetitive task and be doing it on auto pilot by round three.  My brain fatigues of thinking after round two and by round six I am a high strung, anxious, panicky mess.  In other words, if I was asked to make ten pies, you would not want to eat pies 6-10.   I cannot handle more than one task at a time.  It has been a very long road for me to really see how limited I am in that regard.
  • Eyes:  I have limited peripheral vision and experience a small degree of pain when moving my eyes from side to side due to damage on my optic nerves.  I often get migraines that start right behind my left eye.
  • Face:  Between 3-7 times a day, I experience trigeminal neuralgia.  This is a very painful spasm that comes suddenly and lasts for up to one minute.  It is brought on by touching my face, brushing my teeth, smiling, eating, drinking, wind on my face and, oddly enough, sudden loud noises.
  • Throat:  After about five minutes of using my voice (reading out loud, for example), I experience a sensation in my throat much like a large lump when one is about to cry.  It is very painful and I find that I must work to “talk around it” if I hope to continue speaking.
  • Neck:  If I decide I would like to put my chin near my chest for any reason, I can guarantee that I will get an electric shock sensation down my spine.  This is called L’Hermittes sign.  It is annoying most days, but down right adding insult to injury when I am trying to stretch my way out of some other ms induced pain.
  • Rib Cage:  The tiny muscles that rest between each of my ribs are in near constant spasm.  This creates a sensation some call “The MS Hug”.  Some experience it so badly that they have a difficult time breathing.  Mine has caused me to hunch over in a position that has caused other spasms in my lower back.  As far as my regular MS pain goes, this symptom is near the top of my list.  Most days, I feel as though my ribs were being crushed to fine powder.  Sometimes my breathing becomes tight and I have to talk myself down from a near panic attack.
  • Arms and Hands:  My eye – hand coordination is surprisingly good for a kid who used to be a quadriplegic.  I have significant muscle weakness in my hands that can be mistaken for a lack of coordination because I often drop things.  If I cannot see my fingers, I do not know what they are doing.  Do not ask me to blindly dig at the bottom of my purse.  It never works out well.  My arms tire very easily and I have to be careful to parcel that energy out, because when it is gone, it is gone until the next day or two.
  • Bladder:  I have a classic “MS Bladder.”  I put a link there so that I wouldn’t have to paint a picture.  Some patients have severe problems in this area.  My issues are minor annoyances.
  • Hips:  I have spasms in my lower back that radiate through my hips and down my legs.
  • Legs:  My balance is pretty good, considering, but it takes a whole lot of energy to stay upright, so I would say that my legs have maybe one hour total of daily walking around energy on an average day.  This includes time spent standing to wash dishes, fix dinner, walk from laundry room to kitchen to bathroom, etc.  Any more time standing or walking puts me in a deficit for energy.
  • Feet:  I experience drop foot to some degree in my left foot.  This leads me often to put into practice the “tuck and roll” technique that a very wise occupational therapist taught me at the very beginning of my ms ride.
  • Toes:  My big toe on my right foot is numb.  This is not a big problem for me, but, seriously.  I’d like to have my big toe back too.

In addition to these symptoms, I have insomnia and overall fatigue.  There are other things that come and go as I get more tired, but I figured this list of standard symptoms would be a great baseline for comparison.

I find that dealing with all of these symptoms through the day makes it difficult for me to reign in my emotions and present a good attitude.  It is no small thing the way God has bolstered me up for this challenge.

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10 Responses to “Head, Shoulders, Knees, and Toes”

  1. Sarah S Chicken December 14, 2011 at 3:05 pm #

    I love the honesty and I am praying for 100% recovery. I would love you to only get real hugs, not ms hugs.

  2. Ginger McBride December 14, 2011 at 3:19 pm #

    I am having to fight back tears as I read these symptoms because even though I knew from 17 years ago that this would be where you ended up, I don’t like it and I prayed for something different. I am grateful that God is providing a way for medicine to play a role in the recory process and I will continue to pray for 100% healing as well.

  3. ericswife December 14, 2011 at 3:46 pm #

    God owns the outcome! He always has! I think knowing that has been a key to my staying sane. Thank you for joining me in asking Him for a statistically impossible outcome.

  4. Carolyn Counterman December 14, 2011 at 7:29 pm #

    Amy-Lou-Who, I just adore you. The fact that you go through all of this every day and yet try so hard to expend energy on your family and the rest of us demanding beings speaks of the great love that God has put in your heart to share with others. That I am quiet often the recipient of your moments of energy makes me feels special and selfish all at once. I feel the Spirit here with me now just because I am thinking of you. I’m crying tears of joy and sadness and fear and thanksgiving right now. I know He understands. Let’s do this. Let’s get for you what the rest of us take for granted. You deserve it and more.

    • ericswife December 17, 2011 at 11:45 am #

      You are too kind, Carolyn. You matter more than you know and I love you very much!

  5. Mike Glenn December 15, 2011 at 3:06 pm #

    Hi Amy!
    I read and read again this description….I am stunned at the “head to toe” symptoms you deal with on a daily basis….My prayer is that God will be your source of strength and encouragement. You have been in this journey for a good while but it seems that the symptoms are taking a turn for the worse…..That is what I gather…I am glad to be a prayer partner with you, Amy….I appreciate the responses of the other friends who are also praying for you, supporting and encouraging you along the way…..
    “I lift up my eyes to the hills – where does my help come from? My help comes from the Lord, the Maker of heaven and earth. He does not let your foot slip – He who watches over you will not slumber.” Psalm 121:1-3
    Praying and Caring
    MIKE

    • ericswife December 17, 2011 at 11:44 am #

      I love that Psalm. Where does any kind of effective help come from? Thank you for your prayers.

  6. Kathy Tope December 29, 2011 at 10:37 pm #

    I knew it!! I have been sitting here reading this list o’thorns in the flesh aloud to Joel and I am glad to know I wasn’t misreading your body’s cues. But that is the only thing that gives you away…you often listen to me whine about my few symptoms and you never take me to task (although sometimes I think I expect you to because I know I’m just being a baby…and again, to quote Socrates, If all misfortunes were laid in one common heap whence everyone must take an equal portion, most people would be contented to take their own and depart.) To hear this frank admission of what you struggle with ALL THE TIME for the FIRST time since I’ve known you is such a testament to your refusal to kowtow to this disease. I admire your absolute commitment to not letting the ms dictate your obedience to God…and I know that is indeed, a daily, if not minute by minute choice. I did not know to what degree…thank you for finally answering the question of “How are you doing?” Now we know…not so good. Truly though, I understand not letting this long list of woes be the first thing off your tongue and that I believe is because you have been fighting the ms…for a long time you have practiced not letting it dictate who you will be. And while it has robbed you of a lot, it by no means has gotten the best of you…in fact, I believe and I know I only mimic your own opinion in this, that it has refined the very best of you in a way nothing else could. And in this, even in this, we can praise God in all things!!

    I remember during that first intense rehearsal season of Good News Walking, we (me, you & Sarah) were sitting in your mom’s kitchen facing the wall of windows when you had to get up and go get something from your house. Sarah & I absently watched you walk, sipping on our Dr. Peppers and I was struck by how different your stride was. You walked with—dare I say, ease? And it almost took my breath away b/c I thought, if you had all of your energy and facilities at your very own disposal, the world would be in for one heck of a ride. When I pray for you, I hold that picture of you in my heart because I believe it was a brief but beautiful picture of the things to come. I knew, the moment I met you, I had found in you a kindred soul. A woman of faith with a fierce love for the truth and a fantastic sense of humor born out of struggle. We will be friends for this life time and the next and it is such a privilege to have a front row seat and watch and wonder at what God will do in you. Thanks for letting Him have His way in you…not just with karate punching ms, but the daily refinement of making you holy as He is holy. I hope I’m getting some of that by sheer proximity.

    Read more: http://www.brainyquote.com/quotes/authors/s/socrates_2.html#ixzz1hzKgLdYn

    • ericswife December 31, 2011 at 3:17 pm #

      Oh, Kathy Tope. You make me blush. I am so happy to know you.

  7. Monica May 1, 2012 at 3:23 pm #

    I never knew the extent of your symptoms. Reading this made me cry because I don’t want you to experience this and because you always exude a spirit of strength and joy…you are an amazing person! God is truly with you and you with Him. Do you remember our prayer time when we first met? I’m sure you do. It really made me think about praying without ceasing (Acts 12 and Daniel 10). I will be praying for you without ceasing. I should have been doing that since the day we met.

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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