Prez of the #TeamNoSleep club

I don’t sleep well at all. And apparently Cowden Syndrome doesn’t either.

Today, I saw the Dermatologist and had a mammogram. FINALLY found out the thyroid/neck MRI was submitted and approved: it’s scheduled for 10/26/18. By the by…can a new lymph node grow when I don’t recall my “other” lymph nodes were even involved in ’03 with the thyroidectomy? Hmm.

Still hard to believe it was 7 years ago this month I was waiting for the genetic testing results to confirm I have a PTEN mutation.

Life is rough. Life comes at you pretty fast. Funny, I’m STILL trying to accept that this is now my life: struggle, fear, terror, anxiety, loneliness, Financial ruin, dizziness, etc.

I know I’d be better off if I just accepted all that crap. But call me stubborn or naive. I can’t accept those things.

I wanted and hoped for so much more in my life.

Hashtag PISSED.

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Rare Disease Social Media Tweetchat?

Hi guys.  Do I have anyone here that is on Twitter?  I am really interested motivated passionate hopeful about putting together a tweet chat for those of us connected to Rare Diseases.  I know there is already the hashtag #RareDisease, but for brevity’s sake I registered (hopefully correctly) #rdsm – Rare Disease Social Media, modeled after #bcsm and #btsm.

Please let me know if you would like to take part!  Thanks!