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.
I’ll be posting a bit more often this month because I want to support the first WorldWide LAM Awareness Month.
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.
Today marks the start of the first ever LAM Awareness Month. June first was always LAM Awareness Day for several years prior. This year, it became an official awareness month.
I was down for a check-in yesterday with my Diabetes Nurse Practitioner. It was good news. Continue reading
Life with transplant is challenging no matter how much someone tries to prepare themselves for it.
I’m a little over 4 months post transplant now, & while I am definitely doing well (knock wood) not every day is as easy at it may appear.
For the past few years it was pretty hard for me to see movies.
For one, I was worried about my oxygen tank running out (I had one leak in the theatre once) & it was hard to fit it in the seats even in the disabled seating area.
(Even when I had my portable concentrator I was self conscious about if it was making too much noise even when it was stowed under my seat.)
But now, post transplant I find I can go to a matinee & enjoy myself without having to worry too much about crowds & germs (I do carry my mask in case).
My attention is also better.
It’s a relief because I really do enjoy movies, documentaries especially.
Just before my last appointment, I found out I had A1 rejection.
This is very common in the first year of transplant & sometimes even happens to people in the hospital before discharge from their surgery.
It’s the most minimal rejection there is.
I promised I would keep politics out of my blog.
I’ll hold to that outside of commenting on recent events about a “witty” sound byte made by a public official about healthcare.
To me, it’s been a nonpartisan issue for years. I can’t keep my mouth shut any longer.