To all who care to listen, here's the story of what's been going on healthwise these past few months and years of my life.
I was diagnosed with linear scleroderma at age 10. (#sclerodermawarrior) Little was known about it - like how it easily pairs with other autoimmune issues down the line, as I've recently learned. It was easy to see the disease eat away at the left side of my face (S.O. to my #parryrombergsyndrome fellows), but harder to convince others -including many doctors - to believe the pain I would report over the coming years. From my stomach to my eyes to my back muscles, the pain would slowly grow, taking bodily functions with it. From a sudden inability to carry much weight or exert much cardiovascular strength, to an ever-growing range of food allergies, (#ibs hollaaa) my body slowly became a torture cell for me.
This Winter+Spring, I became so weak from an inability to move through the pain or digest food that I lost first the ability to use my hands, then to walk, then to even hold up my own diminishing weight. I felt like a now ticking timebomb towards death as I watched myself lose my strength to fight this unknown monster of diseases.
Enter who I now affectionately refer to as my apocalypse team.
@autumnsorman . @otawistrasse1 . @meteorbasempls and @simon.mpls.uk and @docjefferson and many more, breaking through my isolation into the reality of my decaying state and choosing to fight for me saved and forever changed my life. Late night phone calls, text chains and ER visits would lead me to the #uofmn hospital where I've since been diagnosed with #fibromyalgia and #sjogrenssyndrome , and am beginning treatments for both.
I'm now working on becoming my own greatest advocate - scheduling appointments + continuing therapies and learning how to ask for help when I'm not strong enough to do it on my own. It's a long journey ahead, rebuilding my muscles and navigating the disability system through immense, non-stop physical pain. I am grateful beyond belief for my friends, and seek to connect with others in the #spooniecommunity •
Thanks for being here, &