For the past two years I’ve written a novel for National Novel Writing Month. It was a welcome distraction & radical departure from my life.
It also disciplined me to write 50,000 words in 30 days, which seemed really daunting at first but was actually doable.
A few days ago (on 9/2) I made my 9 month transplant anniversary.
A few weeks before that I had another bronchoscopy because my numbers were down.
All appears to be OK. No rejection. That’s good.
I’m hoping the fall brings better breathing numbers.
I hadn’t done a review in awhile because I had my nice little arsenal of health stuff. Recently I had to make some changes. One was prompted from getting a case of breakthrough oral thrush after a change in some medicines. The other was because I finally made the leap to get an iphone 7plus since I was due for an upgrade.
One of my volunteer friends died a few days ago. A few mutual friends & I were talking not just about memories but also some really raw & visceral reactions from others in regards to our friend’s death being made public.
Again, a rare occurrence to get political on my blog. Because whether people agree with me or not, this is a matter of life & death. The AHCA/BCRA must not pass!
I do not joke about death. Yet, after asking nicely with no movement & amendments sure to get worse, I know no other way to get through.
The 13 authors don’t want to be called heartless or murderers then don’t pass this cruel bill.
Some may say it’s extreme, but I’m tired of playing nice & being ignored, & getting canned responses about how I must take more personal responsibility when I’ve taken plenty.
I’ll be sending this mock obituary through to my delegation tonight because I think they need to see the consequences of a “Yes” Vote:
I had another check up Thursday. My lungs are still doing great, but I wish I could say the same about my kidneys.
I started back on Rapamune (sirolimus) yesterday, so I’m confident that might help when it fully kicks in, as it did when I was pre-transplant.
Representing the TS Alliance & The LAM Foundation both when it counts in research & behind the scenes has been something I have championed for a very long time as my health has allowed.