Peripheral Neuropathy: Transplant asks for suggestions

I look good. That’s what I hear. I say thank you.

I learned in 12-Step recovery years ago. . .to not just see a person’s outsides as what may be going on inside. I learned these past few years that if you have had cancer treatment, when you look good, most people will assume you feel good. And if asked, “How are you?” with your ear tuned to the tone, they are asking, “Cancer still gone?”

And after a while, even close friends don’t want to hear something’s wrong.  Long term, left-over issues, well, they just wear the welcome mat out.

So you smile and shut up.

Or maybe I need a new communication skill because the shutting up makes me cranky and this makes me unpleasant to live with. If you don’t live with me, you don’t get it so don’t assume. (see? cranky!)

What’s my real point you may wonder. . .well one is this, just ’cause it looks good doesn’t mean it runs good.  This list below are things I do deal with everyday.  The list below keeps me from returning fully to the person I was.

Took me all of 2011 to figure that out. . .slow learner.  I write these things not to whine or get the ‘poor me’ salute. . . or the ‘wow you’re so strong’ chorus but to remind you dear reader, that we limp along in our own ways and perhaps assumptions can be turned to compassion. For assumptions lead to misunderstandings, and at times, to judgement.

  • numbness and tingling (pins and needle feeling)
  • A feeling you are wearing an invisible glove or sock
  • Extreme sensitivity to touch
  • Burning feeling in toes or fingers
  • Can’t feel hot or cold, or the ability to feel hot/cold is lessened

If nerves to the internal organs are affected you may have:

  • Dizziness
  • Constipation
  • Bladder difficulties
  • Sexual problems

If nerves to the muscles are affected you may have:

  • Muscle weakness (trouble turning a knob)
  • Muscle cramping
  • Muscle spasms
  • Problems with balance

Now the suggestion I am really looking for is this: I’ve been thinking of doing a sprint triathlon, again. Add to the list above: damaged right piriformis muscle and ileostomy, let me know. Really.

3 thoughts on “Peripheral Neuropathy: Transplant asks for suggestions

  1. Cort Byron (@CortBy) February 4, 2012 / 6:00 PMFeb

    A Triathlon? Again? AGAIN !
    Please practice by doing a walk-a-thon first.

    My neighbor dresses up her dog and herself every year for the Breast Cancer parade.
    For Xmas I gave her a white hat with a pink ribbon that says “Fight Like a Girl.”

    I have started walking on the balls of my feet to avoid pounding on my arthritic heels.
    I recently read that runners that run on their toes while wearing thin soled shoes are healthiest.
    I am walking 1/2 to 1 mile through Franklin County Park. I walk to the gardens and back. ‘My meds’ make people gain weight and I go up and down with it. Now I am getting fat about the belly and I am not active enough. Being active is the best cure for the blues and the first thing one stops doing when they are down.

  2. Terri Thomas February 4, 2012 / 6:00 PMFeb

    Good post. I am new to wordpress and this is my first comment. I have RA and I always say to my family and friends…I am so fortunate to not have the disfigurement, but the pain everyday does get me down somedays. I have a disable parking placard, and I see the looks when I pull in to a disable parking spots somedays. If I am ever questioned I will tell them I would gladly trade feet, knees, hips and any other working body part they have for mine. There are so many “unseen” diseases out there and we would all be prudent not to judge others….we don’t know what they are dealing with in their world. Thanks for the post…Terri Thomas

    • ammiblog February 5, 2012 / 6:00 PMFeb

      Welcome to WordPress Terri! Thank you for the comment. . .I have friends with RA. I get it.

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