“Stepping Up” My Exercise

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

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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.

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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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