I have a rare disease called Generalized Myasthenia Gravis. Over the past 4 years, I was diagnosed with both Celiac Disease and Grave's Disease, both presenting with pretty severe symptoms which masked the MG. Grave's Disease in particular is thought to drive it into a more serious presentation... and for the past 9 months my condition has been deteriorating rapidly. I am now probably in a state of "exacerbation," meaning that my baseline strength is nearly non-existent and the episodic weakness that follows any effort--even just that of breathing or moving my eyes--takes me into dangerous territory where my breathing muscles are at risk of total failure (I have been hospitalized 6 times in the past 5 months for severe respiratory distress, though thankfully have yet to fully fail).
(The road to disgnosis was rough and)I let the diagnosis of "Anxiety--Unspecified" stand on my chart unchallenged and quietly tried to fix myself, pushing myself physically and mentally to just *get over it* but seeing my symptoms only increase in severity.
(Today 4/14/15 a specialist in St Pete finally said)
"If this isn't Myasthenia Gravis, then what IS it?" That's the way a doctor who is exasperated by the way other doctors missed the obvious pronounces a diagnosis. I'm coming home tonight. Some more blood work will be done in about a week and a half to determine how aggressive my timeline for surgery will be and in the meantime my drug therapy is being adjusted to address the severity of my symptoms. I won't improve overnight or anything, and there's still a long road ahead, but hopefully opening a Coke won't send me to the ICU again anytime soon (and if it does, at least they'll know how to fix me up now).
Myasthenia Gravis does not have to be this bad. With proper treatment, including surgery and recovery time, appropriate lifetime medication, and timely interventions during exacerbations, I could live a normal life. But I won't. Because I've never wanted a normal life. I've wanted an extraordinary one. And I still plan to have it. This is all actually a blessing: my limitations have been revealed. And they're limitations that can be mostly overcome with proven medical treatments, how lucky! The way I see it, soon enough, nothing will hold me back. All these challenges I encounter getting to that point are only opportunities for me to learn and grow my potential.
Thank you everyone for your interest and support. The mental and emotional tax on me right now is pretty high. Your support means more to me than I could possibly express--and not just because I'm having trouble catching my breath. Smile emoticon I am so very humbled and so very grateful.
- Charles Pillsbury
- Alissa Hunnicutt
Organizer and beneficiary
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more