The past few weeks have been a bit tough. My breathing numbers were down at my last visit at the end of July, so I have a bronchoscopy (a test where they scope your lungs to take a look) scheduled for later this month. It might not be anything to worry about, but better safe than sorry. Continue reading
Tag Archives: TSC
Review: Kinsa Smart Ear Thermometer
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.
It’s Not Up To Those Who Are Hurting To Make YOU More Comfortable With THEIR Pain…
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.
Tiny Bubbles, Er… I Mean Blips
I promised to be honest when I started my blog to not just report all the “good stuff” all the time, because like any path, the transplant path has fits & starts, blips, & snags. Mine, overall despite being annoying, have been small. Yet, it’s frustrating at times.
2017 Transplant Patient Summit
I was notified a little over a month ago that I was selected for the first-ever American Society of Transplantation (AST) Patient Summit in October.
Me Without Healthcare….
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:
Hi! Remember Me? I’m TSC!
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.
A Bothersome Statement
I’ll be posting a bit more often this month because I want to support the first WorldWide LAM Awareness Month.
World Wide LAM Awareness Month
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 Am Somebody, But Part Of Me Is Somebody Else.”
Yesterday was an emotional day for me. I turned 40. Continue reading
AS I LIVE & BREATHE 