Tags » Rare Disease

Me Without Healthcare....

Again, a rare occurance to get political on my blog. Because whether people agree with me or not, this is a matter of life & death. 619 more words

Blog Entries

Vivo Barefoot

One day, I was barbecuing with friends and needed to grab something from the store. One guy offered to drive and, when he got out of the car, I realized he was barefoot. 638 more words

Cannabis & CBD (Cannabidiol) Oil

While information about cromolyn was generally hard to come by, most of what I found on CBD was unfortunately biased by whoever was selling it. And as much as I love my chronic-illness/rare-disease-dedicated Facebook forums, I sadly can’t say the same about any of the CBD groups. 418 more words

I think it's time

I realized this week – I don’t want to have a brain scan right now.  I had one in December.  I don’t want another one next month. 117 more words


Cerliponase Alfa (Brineura™): First Global Approval – first flicker of hope for families living with CLN2

The recent first global approval of cerliponase alfa has been reviewed in detail in the First Global Approval report in Adis journal Drugs, based on the development milestones tracked in… 468 more words



Inadequate. Unloved. Hurt. Hopeless. Deficient. Incompetent. These are words that while you’re going through a rough patch in life you go back and think about.  You think about how this could happen to you and how much you wish things were different but they aren’t and you have to suck it up, put on your big girl pants and just deal with it.  596 more words

Update June 18th, 2017

Rambling update post- not very organized, just a lot of thoughts :)

It has been a while since I updated my blog. I have to say, I do miss it. 488 more words