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:

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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.

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Draft of FDA Testimony

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.

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4 Months Down…

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.

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