In 2016, I wrote on Facebook:
May is Lupus Awareness month. Every year I do a little something on Facebook, as most of you know. This year is different. This year I’m making it personal.
About a month ago we discovered my Lupus SLE is starting to involve my lungs. As of the middle of February, a test showed that my lungs were only absorbing 70% of the oxygen they normally would be. I’ve been having lots of tests done and seeing lots of doctors, and we should be figuring out what exactly the extent of my problem is before the end of May, and I should be able to start treatment, which will likely involve suppressing my immune system.
I’m afraid to say I won’t be going back to the US any time soon, and fieldwork/Yiddish training is delayed until we sort this all out.
Every day this month, I hope to share another piece of my story with you, and help you learn more about this disease. Why am I doing this? Because very few advances in the medical understanding of Lupus have happened in the last 50 years, and if my story encourages even 1 person to take an interest, then it’s worked.
If you’re curious before tomorrow’s post, check out:
or
Lupus UK Feel free to ask me any questions! I’m very open about this.
I want to assure you that since then I’ve been seen by some of the best doctors in the UK, including a doctor at an Oxford hospital who does research on autoimmune lung disease and connective tissue disorder lung involvement, which is what I need. She has gotten me to a much healthier place with my lungs!
The lung issue is one of the reasons why I’m self isolating during the coronavirus pandemic. I still do not get the full amount of oxygen which I should from every breath I take, even when I’m not sick. We don’t have a conclusive diagnosis, other than the fact that we know the problem is likely autoimmune, and likely connected to my inflammation levels on a daily basis. One of the ways I keep my lungs in good shape is to get as much cardiac exercise as my health allows, which is limited due to the Lupus (future posts about that!). So part of taking care of my ability to both stay healthy, and fight the virus if I somehow got it despite the steps I’ve taken, is to take long walks in the countryside nearby, which has been the main way I have improved my lung health. Thank goodness I live in the country enough to be able to safely exercise without running the risk of not social distancing.
Wondering what’s going on with these posts? Check out my explanation HERE!
This Isolation Life 