After having countless doctors appointments and constantly having to fight for every morsel of medical care, today everything I have ever fought for came to fruition when I saw a mitochondrial disease specialist. For so many years, I have been researching and making my own path through a medical world which rarely recognizes many of my medical conditions. When epigastric pain left me in a tight knot of severe pain, I searched and searched to figure out the pain was caused by my gall bladder. I then spent the next week trying to convince doctors my gall bladder was infected and needed to be removed. When another round of severe epigastric pain hit, I carefully documented what caused the pain, which ended up to be fat and protein. After extensive research, I discovered I had chronic pancreatitis and had problems with my bile duct sphincters. Again, it was another tooth and nail fight until I was able to convince doctors I needed some of my bile duct sphincters cut.
The list could go on and on of medical conditions I self-diagnosed and then had to slowly, carefully, lead my doctors to the correct diagnosis. Every symptom was an epic battle to get medical treatment. Eventually, the battles became too hard to fight; my body was growing too weak to continue the constant battles. After losing several of my favorite doctors, I simply stopped seeking medical care. I tried as best as I could to find natural remedies to my ailments and tried to live with the rest of my symptoms. Reluctantly, after my health took a nose dive and I developed respiratory failure, I finally decided to seek out medical treatment for mitochondrial disease.
Today, everything was different with my Mito doctor. Instead of me having to justify all my symptoms, the doctor was flabbergasted that my plethora of symptoms did not signal red flags that I had mitochondrial disease back in 2010. (I, however, was the one who put together all my complex symptoms and figured out I had mitochondrial disease. Then, I had to carefully lay out my medical case before doctors. After many failed attempts, I finally was "diagnosed" with Mito.)
My appointment today makes me want to leap for joy but also wallow in grief. The doctor said it was not "if" I had Mito, but what type of Mito I had. Although I have been fighting so hard to get a Mito diagnosis and to get a Mito specialist, now that I had both, suddenly my wacky medical hypothesis is now reality. I think I have always hoped that my medical condition was some mysterious ailment with a secret known cure...but now that I have Mito, a condition which has no cure, all hope of ever recovering and chasing after my dreams has vanished.
I have known for a long time that getting an "official" diagnosis could be like getting a death sentence. I often think about my friend Milly. When she found out her type of Mito causes heart failure, she gave up living. When she developed respiratory failure, instead of getting a tracheostomy, she continued using non-invasive ventilation. Ultimately high carbon dioxide levels built up in her body, and she went Home to be with Jesus.
Now, the same reality is facing me. Since genetic testing is not covered by my insurance, my doctor wants to do a muscle biopsy to nail down what type of Mito I have. As much as I would love to know what exactly is ailing me, I know this information will absolutely crush my spirit. I fight hard to get through each day, but to know that I might be at risk for developing some further complication of mitochondrial disease is more than I can handle. My doctor promises that the testing will help them treat me and guide their medical plan. But as much as this information may be "helpful", I much prefer leaving everything to God. I much prefer to be in the dark about what the future of my health might be. When I am lost and cling to God, only then can I see His abundant mercy, kindness and goodness. I would much rather rely on God and have Him lead me than to put confidence in man and science.
Today did also bring much joy. Now, I have a doctor and her office staff who will fight for me to get the proper medical care. I am no longer a one-man show. Oh, how wonderful it is to actually have medical professionals supporting me! After fighting for so long and doing endless research, I can finally take a moment to celebrate all my years of hard work! Praise be to God!
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