I have spent the last five years with multiple specialists and have recently been diagnosed with a rare form of mitochondrial disease. My cells do not produce the energy they need to support my organs to function properly. Currently I have swallowing issues, Barrett’s disease, gastroparesis where my stomach is paralyzed, intestinal paralysis, compressed spinal cord, rheumatoid arthritis, and early dementia. I have no desire to eat and protein shakes are my main source of nutrition with trips to the ER for fluids and nutrients.
Each day I struggle to complete normal tasks. My heart rate plummets and blood pressure tanks after taking a shower. I often collapse to the floor and the emergency room knows me well. Because I have such a hard time holding any food or liquid down I continue to lose weight which adds to my heart issues, weakness and fatigue.
I have been on disability which covers my main bills for five years now. I had a permanent heart monitor inserted recently and neck surgery to decompress my spinal cord. I continue to fall daily, drop items, and have issues remembering words. I have a handicap decal for driving but doctors are discussing removing my license due to the fainting.
I have health insurance which covers 80% of my health care. My last surgery cost 200k. Next week I will be back at the hospital to get more tests and come up with a treatment plan to keeps my cells from degenerating.
I’m so tired and I just keep doing what these doctors say only to find another diagnosis. If you can help in anyway, the funds will pay my medical bills and travel to out of state doctors for care.
