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Wednesday, November 5, 2014

LIFE CHANGERS

Isn't it strange how we move along through life thinking everything is fine and then we go to the doctor with what seems like a few minor complaints...a lingering cough, shortness of breath even when doing simple things, and feeling a little tired.  We have a few simple tests, which bring on more, not so simple tests, and in our hearts we know this isn't going to turn out well.  I went to my newly appointed pulmonologist on Tues....Dr. M.  He wears bow ties, I love bow ties.  I knew it wasn't good when I saw his eyes.  He told me what the first CT scan said, the one before the fancy, more detailed, CT scan.  I have Idiopathic Pulmonary Fibrosis.  I'm a retired nurse, you know.  I've already been all over the Internet reading all about it.  It's a disease without a cure, at this time.  Until this year there was nothing you could take for it to slow it down.  This year the FDA released two new drugs that slow the deterioration process down, but it doesn't stop it.  Dr M wants a drug that stops it....so do I.
He thinks I've had it for at least a year, which is good really, since I just now started to show symptoms.  It means I might be on a slow track.  He also told me about an 18 month double blind drug study with a new experimental drug.  All the tests etc are free.  There are 163 people in each group .  Two out of three people will get the drug.  The third person will get a placebo.  I have some time to make up my mind if I want to see if I qualify.  The drugs that are on the market now are $30,000 a year.  If I wasn't so scared I would be laughing...who has $30,000 a year to spend on pills? I understand there are some assistance programs though.
I can't make beads anymore....ever.  Dr. M doesn't know if the glass, the silver, the kiln wash etc contributed to this disease or not, but he said he doesn't want any more possible irritants in my lungs. This makes me sad.  There were so many more beads to be made, but I like living more than I like making beads, so the choice wasn't that hard.
Sometime after the first of the year I will sell off my studio.  To all of you who don't wear respirators when you use enamels, please re-think that choice.  I always wore one.  Also if you smoke, that's the leading cause of Pulmonary Fibrosis.  I don't smoke, but this is just an FYI. I just would feel better if I could keep one person from developing this horrible disease.  If you've read all the way to the bottom, thanks.  My plan is to share some of my experiences as I find my way along this new path.

PS I know my blog looks strange.  I cannot get the header to stay where I put it.  I will conquer this computer too :)

3 comments:

  1. Oh, my dear friend. I am so sorry to hear this news but I've had a bad feeling ever since your last entry.
    I have a very good friend who is living with this same curse.
    I can only imagine how your heart is aching; thinking about giving up the art that has brought so much joy to others - including me.
    You will go forward, though. You have lived through so much already and this is a rough one, that's for sure, but you will move on.
    How about switching to paper? When life settles down a bit, if you're interested, let me know and I'll send you all my web sites for materials and tutorials.
    I wish I was there right now to put my arm around your shoulders and just be there. Nothing mushy - just there.

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  2. Harriet, you have so much talent that I am sure you will find another way to express it. The glass community and I am sure going to miss your wonderful beads. You have helped me so much in the past (Kiln, tools, concentrator). If there is anything I can do to help you let me know. Please don't stop writing, I enjoy every word on your blog.

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  3. I am so sorry to hear this. I am also excited to see how you express the art inside you. I love the line, "There were so many more beads to be made, but I like living more than I like making beads, so the choice wasn't that hard." This is such a reflection of life and how strong people make choices. I'll keep watching this space :)

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