ITP does not discrimate when it strikes its next victim. It affects the young and old, rich and poor all over the world. Dealing with this blood disorder is no easy task. The fear and frustration of not knowing where the roller coaster will take us next can be daunting.

This blog is for ITPers to express thoughts, feelings and lessons learned during their ride. Send your post to greta799@yahoo.com. We want to hear from you.

Monday, May 7, 2012

I Have ITP, It Does Not Have Me

Aimee Knight posted this in the Facebook group ITP and ME. She relates how she copes with being a victim of this terrible blood disorder. Aimee granted her permission to reprint her story here in this blog.


   When I was first diagnosed with ITP, I developed a coffee habit to help with the tiredness. Well, actually it was milk and sugar with a little coffee in it. At a visit with my hematologist, I showed him a small persistent rash on my hand. He took one look and said “too much sugar” in his very strong and to the point German accent. I looked down at the cup of coffee still in my hands, how did he know? End of discussion, I cut back on the sugar and the rash went away. I did some research and reading and found that sugar can fuel an autoimmune response.
   Also recently, I read that a compound found in almonds can do the same thing to some viruses, interesting information. Since I’ve had my spleen removed, I’m almost always, fighting something. Since giving up my healthy almond habit, I seem to get better faster. I know some people can’t have any sugar because of their other health conditions. For myself, I’m a believer in “If you’re going to be bad, do it right.” I have my chocolate in moderation and steer clear of sugar free stuff. If it says dark chocolate, fair trade and organic, that’s just awesome.
   I don’t like the taste of water; I swear it has a taste. So I drink it with lemon, carbonated drinks make me feel awful. When I want something sweet I have a banana smoothie or vanilla soy milk. Chi tea with agave is really good too and smells like Christmas in a cup. I try to eat healthy 99% of the time or less. My favorite chef to follow is Jaime Oliver, his recipes are real and basic and do not taste like cardboard.
   A few years ago, a friend recommended the book John mentioned, The Power of Now. I took one thing away from it, a breathing exercise that helps me sleep better. I also tried yoga but I don’t see how people can do that at a studio and drive. I’m pretty sure if you do it right, you’re going to be relaxed and super sleepy. I gave up stressful things in life, like a mean husband. I look for joy, less stressful nightly news and more comedy. However, until I get an all expense paid trip to paradise on a prescription pad, stressful stuff is going to happen. I give myself permission to deal with it my way, a bubble bath or a good cry. It’s great to be joyful and spiritual. I think happiness is the best antioxidant. However, when you have a chronic illness, it can’t possibly be all puppies and rainbows. Some days you’ve got to spend the entire day in bed, in the dark, to feel better.
    That’s my two cents; please don’t take any of it as medical advice. If you find points that you want to research yourself, that’s great. We are all in this together but still we all have individual stories. I’m glad we have this page to share information. Personally, it makes me feel less alone in this battle.
   As for miracle cures, I quote Princess Bride, “Life is pain, highness. Anyone who tells you different is trying to sell you something.”

5 comments:

  1. Really enjoyed reading your story Aimee. Your positive attitude is very much like my approach.
    I completely agree with you when you say "We are all in this together" and we can learn so much from the experiences of others.

    I have concluded that solving ITP is a bit like trying to nail jelly to the wall. Just when you think you have found out something definite about it the rules change again.

    Anyway, hope you are well and thanks for sharing your story.

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  2. That is the perfect motto....I have ITP, it doesn't have me. I've been toying with the idea when my platelets come back up getting the tattoo of the ribbon with this underneath it. I let it have me for the first year, then no more. I have it, but I have to live too!

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    1. Anonymous, You have the right attitude! We have to deal with ITP but do not have to let it rule our lives. Send a picture of your tattoo to display on the blog!

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  3. Celi De La TorreJune 22, 2012 at 7:35 PM

    Anyone who can quote from the Princess Bride is AWESOME in my book! Oh...love your story too. ;) Anonymous...I got the ribbon tatoo...need to go back later and get some plates added to it. :)

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