Ok, here I am. Almost a year in-between again but so much has happened. But first a reintroduction, because when someone reaches out to you because you NEVER back down from an acromegaly, tell-it-like-it-is, conversation. So here I go. I hope you’ll follow along….
I reached a milestone in the spring of 2017. I turned 41 and with that number I became chronically ill for more years than I have been healthy. This is not a happy milestone but it is my truth. Now 22 years of truly being affected. 11 years of having a diagnosis. There is so much out there about how you define yourself. There are the articles about how to incorporate positive ideas to change your outlook on life. There are the inevitable “don’t” define yourself this way or that. So what if I define myself as chronically ill, pain, rare. I am. It needs to be respected… my needs and my limitations. I’m not looking for sympathy. It’s educating others — because who thinks they are going to end up with a rare disease? Seriously! Acromegaly – yes I know, acro-what? Acromegaly, the growth hormone secreting pituitary tumor that would be gigantism if my growth plates weren’t closed.
Acromegaly is an invisible disease— until it’s not. Facial features, hands and feet grow.
Much is soft tissue growth but also bone and organ growth. It takes an average of 5 to 8 years to get a proper diagnosis. This is a late diagnosis. This needs to change. After treatment (there are several) and once your Growth Hormone (GH) is well controlled, features often soften to the point that you’re back to having an invisible disease. So many what-if’s because my symptoms were a long time coming. Imagine if I knew to keep lists of anything that crossed my mind? I figured it out but I lost time and that is irreversible. Because, if you notice it, even a whisper of change, a symptom, pain… it could single something out. So many symptoms fit into doctors belittling checklists. So of course they were flat out wrong but to them I fit neatly in a box… And it was all in my head – just not the way “They” insisted. So, no harm in keeping track…heck, you can just hit delete. You never know if that one little symptom may lead you in the right direction!
Health StoryLines is an app for just this, listing everything from symptoms to meds and even moods. Whats most impressive is they’re actually creating one for acro patients!! We will be helping to tailor it to our needs… not wedging ourselves into some other disease’s list!! There is a first for everything! #AcromegalyAlum can unite. Those in #AcromegalyAcademy can by-pass some of the mess or at least be armed and ready!
So, as you would expect, I’m excited about Health Storylines…the app, the chance to share, grow, meet others and be engaged. Hoping you are excited too, follow along, start a conversation with me!
What do you find exciting about these possibilities?
Use my link to download the app and lets begin this journey together!
Cover photo by David Giacalone. Perfect photo by my uncle of my favorite flower.