Social Media Post Updating My Health
Tuesday, June 28, 2022
11:10 PM
People have been asking how I’ve been doing. I truly appreciate the compassion, kindness, concern. Here is your update on how Craig is doing.
I was diagnosed with a disease called sarcoidosis a few years ago. It has no known cause and no cure. It’s not communicable. Most of the time it doesn’t do anything, but in 5% of the cases it causes the growth of inflammatory cells in parts of your body. In my case I find myself in that 5% and it’s causing pulmonary fibrosis (PF) or the scarring of tissue in my lungs. My breathing capability is much reduced. I become breathless with almost any exertion and have to pant like a dog to catch my breath. I have also developed a persistent dry cough, which is something that goes along with PF. I’m on more drugs than ever before in my life and they all have side effects. My immune system was already compromised and the drugs have made it more so.
With my immune system down a quart and COVID everywhere, I don’t get out much anymore. As I’ve said before, I feel like I’m in a witness protection program. I also have to move quite slowly so I don’t become too breathless. It’s awkward getting somewhere or meeting someone and not being able to speak because I’m gasping for oxygen. And talking too much or laughing causes coughing episodes that also leave me out of breath. This may be the hardest for me because I love to laugh and talk.
I’m about to start a new drug (OFEV) which will help slow the fibrosis (we hope). I’m waiting to find out how much it will cost. It’s an expensive drug that runs over $4K a month, but I don’t expect to be paying that much.
What’s the prognosis from here? Don’t know, but here is what I’m working on. I continue with tai chi every day. I try to walk a very slow 1-2 km a day, but some days I just don’t have the energy. I hope to get into a pulmonary rehab group (singing, ”they tried to make me go to rehab and I said yes, yes, yes). I’ve connected with a PF support group that meets once a month and they’ve already helped. I’ve started looking into a lung transplant. And MAiD has to be a choice later for me. My mother had PF and I was with her as she suffocated to death. I’m fortunate to live in a country that allows me the choice of death.
Slowing down everything in my life has been good too. By walking slowly, I notice things around me that I rushed past before. Tai chi is better for you the slower you can play it and I am now so slow and deliberate with each and every move. Being out at the cottage where there is little noise, air, and light pollution is allowing me to see, smell, and hear things I never had time for.
If you’ve read this far, thank you. Your caring and encouragement help me every day.
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