Acromegaly awareness day… Once again it’s one day. What did you become aware of?

Still can’t pronounce it… Acro-what? It’s still too much growth hormone but what does too much growth hormone do?

Since last November first, I’ve had my jaw broken — on purpose. …Refitted to sit properly on my right-sided-overgrown jaw.

Acro-what, You say? You purposely had your jaw broken? Yes, yes, I did.

I had braces on for the better part of four years …removed!

I had emergency gallbladder surgery because the best acro-drug out there — killed it. Worst recovery-pain ever — worth using the medication until I couldn’t.

Its been 6 years since pituitary radiation and its starting to show signs of working! Going on 6 months of no GH-suppressing meds! Woot-woot! Praying it continues because, well, the pituitary can be plain ole wacky!

Had my tongue electrocuted in an attempt to shrink what is overgrown as well. This is new. Happened October 15th. Have to wait 8-12 weeks to see if it works. That also makes for 3 rounds of general anesthesia. Really not so great on the body.

All this in 11 months.

And we get one day. ACK-RO-MEG-LY… at least learn to say it.

I must say, you read so often how Facebook/social media is all lies in photos. People lie. Ya know what, I don’t complain about the day to day pain…online. What good does it do? Know, I’m not “ok” and yes you’ll survive and be able to talk to me. What do the photos show me on a really bad… I’ve had some great days this year. And no, they don’t out weigh all that has gone wrong but who cares. They are there,  cherish them and they are mine. I cherish Paul. So as much as I hate FB, I’m happy for a quick click of my photo button and a scroll.

Learn more about your disease. Don’t let it define you but don’t deny it either. It will bite when you’re not looking. Need a place to start.. start with you and let Health Storylines App help. Download the link… Play around. Give it a go!

#HealthStorylines #acromegalyalum #acromegalyacademy
#acromegalywarrior #keepgoing #vivelafrancenc #AcromegalyAppreciation #wegohealth #patientworthy


Shout out to Patient Worthy for always telling our stories!


Bad acro-year. Whatever…..


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