So, it was about one year ago that the doctor sat me down and explained that I am alpha-1 antitrypsin deficient with the PiZZ genes. I went on the computer for about 2-3 hours a day for the first month just trying to get more information. I joined a chronic obstructive pulmonary disease (COPD) support group because my illness fits under the COPD umbrella. I have learned a lot about this genetic disorder. I have passed on one of my Z genes to each of my children. I hate that one. And life has changed. There are many "new normals" to my days. I have to say that I'm not really happy about any of them, but then honestly I'm not really unhappy about most of them either.

I've been thinking more about what it's like to live with a terminal disease lately. I think the shock is beginning to wear off and life is somewhat stable. If I die from alpha-1 deficiency it will probably be a long time from now. Unless something gets more complicated I'm guessing this will be a very slow deterioration of my lungs. That's a good thing. For all the rest of my life though I won't be able to run around and dance like I used to. And I feel sad about that. It's much scarier and harder for me to go anywhere. And I feel sad about not being able to just jump on a plane to go visit Mom or jump in the car to go visit Joni or Brad or Wendy. Some of that is my being scared of getting sick and landing in the hospital with no insurance. Some of it is understanding my limitations. I get short of breath walking outside to take the trash out. I have to stop and rest when taking an armload of laundry to the garage. When I do dishes I lean against the counter the whole time. These are pieces of my new normal. Not horrible, but not fun. At first doing these things felt like a slap in the face each time and a big reminder that I am sick. Now they feel like a little sting, and oh yeah, I have to rest and catch my breath after I do that.

Life in the Sierra foothills is so pleasant, I can't be too sad. I walk out on the deck and look at the valley and the Coast Range and it is beautiful. And everytime I see my husband's smile, well, see, life is good. If I talk to the kids or the grandkids that is an extra special bonus to my day. And I love talking to Mom. I am happy.