Follow by Email

Sunday, November 23, 2014


Thursday I spent 4 hours being interviewed and tested to see if I will qualify for the drug study.  The questions weren't hard.  The testing was.....hmm, difficult.  I had to do several tests to evaluate my lung function.  They involve sucking in air and then blowing it through various tubes.  Whenever I do this it sets off a long, long coughing spell.  Wears me out kind of quickly.

I did find out two interesting things during my last appointment with Dr. M and this appt. with the nurse practitioner.  First of all Dr. M said I can make beads some of the time if I wear that big ole respirator all the time I'm making them!  That made me kind of happy because the thought of breaking up my studio was hard.  He said that lungs that are affected by metals, silica, and glass particles are usually involved in the upper lobes.  It's my lower lobes that are the most affected right now.  K, the nurse, told me that my CT scan does not show any asthma at all in my lungs.  This means that during the last 5 years or so, when everyone thought I had asthma, it was really the beginning of the Idiopathic Pulmonary Fibrosis, which from now on will be referred to as IPF.  So that means I've had this longer than I thought and just maybe I am on a slow track.

I will know if I get accepted into the drug study in another 3 weeks or so.  I do hope I get in, even if I get the placebo.  I would feel like I was doing something positive about this disease and maybe it could be stopped for people newly diagnosed.

I am still mostly in a stupor about all of this, but it is becoming more real to me.  I don't cry as much as I used to, which is good.  I have some great friends who make me laugh and that is a wonderful thing.  I'm ready to fight this thing head on, there is just a little bitty part of me that is scared, but I am determined to be positive. Thanksgiving is coming...let the party begin!


  1. Good news about the glass. Ya see? Sometimes shit DOESN'T happen. hehe
    Also glad to read your positiveness regarding the study. You have such a generous, giving way about you. Thinking of the benefits to others defines you.
    Being a little bit scared is normal. I'd call you "liar, liar pants on fire" if you said otherwise
    Now, go on and fight. Would you like my old pom-poms from high school?

  2. I am so happy that it might be a slow kind, and that you can continue to make beautiful glass beads. Take care of your self.

  3. I am sorry that you have this problem, I have a bit of COPD but not from glass. It effected my lower lungs. Idiopathic means they don't know what it is so it's anybody's guess what caused it. There are lots of things you can do in the art world. It's good if you can get into this drug study and also if it doesn't progress like COPD you can get some relief from the coughing. My thoughts and prayers are with you.

  4. Hi Harriet, so sorry to hear of your illness, I wish you all the best with the drug study. Hugs Astrid

  5. Hi Harriet, sorry you are having to deal with this! I was diagnosed with IPF 25 years ago. I also have generalized bronchi ecstasis in all lobes. The progression of my disease has been slow as I hope yours is. Rest when you need to, see dr immediately when experiencing fever or any new symptoms and continue to enjoy life. Best wishes at this rough time in your life. By the way, you know me as Tasha's mom.

  6. Thank you so much for all of your sweet words. I am grateful for all of your encouragement. Carol, you give me hope. Twenty five years would make me 95, which is really, really old, but I would sure like another 15 years ! I am thinking positively!!