That is the best way to describe how I feel right now. I have joking told people that I am suffering from Post Traumatic Stress Disorder, but that is truely how I feel. Now that the whole insurance fight is over so is the stress about it - and now the skin reacts....
I am having a very bad EB breakout right now. I have a thousand little blisters and sores all over my body. I itch everywhere. Most of my sores burn and itch. And a little while ago I was just sitting here and felt a really bad spot on my back just split all the way open. My mouth is broken out and it hurts really bad and making it difficult to eat and talk. I am exhausted and it really just hurts to move. Everyone always asks me how I feel - well, now you know. I usually lie and just say that I'm fine, its just not worth spelling all that out.
But if you asked me right now how I feel, I would just simply say that I'm very uncomfortable.
Anyway, my point for this posting was to let those readers who have EB children that are too young to express themselves or those that are not familiar with this disease to hear how EB skin feels sometimes.
Hopefully I will feel better tomorrow or the next day.
Please continue to pray for Jonah Williams, hopefully his mom and dad will be able to take him home soon!
Oh well - I doped up on some Oxycodone for pain and I'm now off to dream land where EB doesn't exist and doesn't hurt poor innocent babies!
Feel free to comment! I noticed that my views have increased and I would love to hear about all of you!!
Janel
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2 comments:
Hi Janel! Just wanted to say I admire you very much for all the nice posts you leave on Jonah's page, it must be such a relief to hear from someone who has lived a full life with the same disease! Sorry to hear you're having a bad episode with EB, hope you heal and feel better soon.
Marie
I just came over from Jonah's blog. My daughte in law has EB simplex as does her mother and her brother.
First, let me say how sorry I am that you are suffering so. I also want to ask a question if it isn't too personal or you just don't want to talk about it....that's o.k. In your profile pic there is a little girl.....is she your daughter and does she have EB? Our son and daughter in law are planning to start their family soon and I'm wondering if you do have a child was she born with eb?
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