So even with all my awareness spreading (or attempts at it) I've been following the AIP diet (autoimmune Paleo). Full disclosure, after three days, I needed to add back in coffee and my essential oil digestZen blend because if you can't poop... Continue Reading →
It's International Rare Disease Day and I Advocate for All Rare Diseases, especially my own. Please make yourself aware that typical symptoms that fall under "everything-under-the-sun" could be something more serious. What do you see when you look up Acromegaly – a... Continue Reading →
My rare disease is Acromegaly. I'd like to Raise Awareness for very, early, they-don't-have-a-name-for-it-yet, acromegaly or pre-acromegaly, full-on acromegaly that cannot be reversed (Can't un-grow stuff), and for the need for alternative therapies to to address the irreversible damage that medications can't... Continue Reading →
When you look up acromegaly symptoms you'll find at the top of the list or the only ones on the list: ✋️Large Hands and Feet 👱 Enlarged Facial Features 🎤 Deepened, Husky Voice due to Enlarged Vocal Chords and Sinuses 🤓 Impaired... Continue Reading →
I don't just try and solicit T-shirt sales for Acromegaly - Rare Disease Awareness (but I'm doing that too). Second Awareness T-shirt Campaign! Acro-What?2 I walk the walk – CHARITY, do you know her? When you're home, sick… chronic, you lose your... Continue Reading →
I have no idea if it's going to work. But I started with... Wanting to go to Rare Disease Week to Advocate Not receiving Art (cheating scandal ta boot!) or Advocate Travel Stipend. Physically not up for going. Long days... Continue Reading →
There are no real Awareness efforts for Rare Disease and Chronically Ill. If I'm wrong please point me in the right direction. (I'm talking large scale here, not those of us trying to go it alone) I want to try... Continue Reading →
I had a car for two weeks... I haven't had a car of my own in about 15 years. Paul was a lucky boyfriend —gave him the brand new car I bought so I could drive up and see him —I just couldn't... Continue Reading →
I was going to write about The "cheating" of the Rare Artist Competition for people with Rare Disease. But why? Because I need it off my chest. I'm not great at tolerating lies and cowards. People lied. People cheated. People ignored. Instead... Continue Reading →
Vive LaFrance: Life as I know it 