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Wednesday, June 29, 2011

It was a most interesting day.

I just got home from the hospital where I had some blood work done and I was thinking I need to tell everyone about this neat person I just met ( the person who drew the blood). But I couldn't figure out how I could tell you about her without bringing up the polio thing (Lord knows I do not like to talk about the polio thing) and then I thought well, I have to tell them why I am having the test done. But then I would have to talk about my hands, but I don't like to talk about my hands( I don't even want anyone to see my hands)  Of course my family knows about all this stuff, but some of my friends, especially the new ones don't so here goes.

These are my hands( well one hand, didn't think you need to see both.

I know, gross huh? I have had a problem with the skin on my hands for over a year now, today after three biopsies  I finally got a diagnosis, it is porphyria.  It is a little confusing, it has something to do with your hemoglobin, there are  two types, one is because of liver disease and the other is because of anti inflammatory drugs. All the blood work was to figure out which I have. More to follow on that subject.

Now the reason for this whole post is the neat lady who did the blood work. I had noticed her walking by while waiting to be called, she had a limp, was using a crutch and looked like she was having a bad day. When she called me in to her cube, I noticed one of her shoes had a build up and rocker bottom just like mine. I said hey we have the same mods on our shoes, she said, yea, I have an ankle fusion, I said so do I.

 And off we went, she had Spina Bidifia and I had Polio, so we went down a memory lane of braces, ugly brown shoes, leg length differences, how mean children can be, crutches, surgeries, what it's like to have bad days. I cannot tell you what that conversation did for me, I haven't talked with someone who really understands "what it is really like" since I had my last childhood surgery at 16, there were a group of us about six I think, we were all having the same surgery to get out of braces.

I have tried my whole life to never, ever use the polio thing, for any reason. I may have a little pity party every once in a while, when the post polio  thing rears it's head, but it is a small party, just me and sometimes J.  It was such fun to gripe, complain, whine with someone who could do the exact same thing without any quilt.  Does that make sense?  I hope it does.

So here's to  Iris, it was a blast to talk to you today, keep fighting the good fight. Hope you have more good days than bad.

Do what you can, with what you have, where you are. Theodore Roosevelt


  1. Good hell - and yet, I am so very grateful that you are still here, to bitch about any damned thing you want. But, truly ---- I am sorry that you have to still deal with all the bs this must surely bring about.

    Yes, I know. Don't call you Shirley.

    Hugs, honey. And hey to Iris, too! I love that name! :)

  2. First of all your hands are not gross. You would never consider mine pretty any longer and soon they may look much like yours as I have liver disease and also arthritis, hence NSAIDs. I respect you for not using your polio as an excuse, as I try to do much the same.

    Thank you for sharing a bit of your life as I am new here. Take care.

  3. Hi girlfriend - such fun. So glad you and Iris met and could relate to each other as only you could. Any idea when you get the results?
    Love ya and see you soon!!!

  4. I don't think your hands are gross - they tell your story!!! AND! What a story - I feel very special to be sharing it with you!!!

    One of my best friends in the world has polio - so keep telling me your story - I love it!

    ;-D robelyn

  5. I try to be understanding but I know I can never comprehend what you have been through. I'm glad you found somebody that you could commiserate with!