I love puzzles. And not just the kind with pictures, but mysteries you can delve into whether they be on television, in a book, or real life. I grew up on CSI Miami and 9 times out of 10 could pick out the killer before the first commercial. I also love watching medical shows such as Mystery Diagnosis and Untold Stories of the ER and can outperform the doctors with scary accuracy. I also spent the bulk of my childhood disecting things. The most interesting was the baby blue bird I found in my grandfathers boat. This has lead to my desire, no, my need, to be a forensic nurse.
In fact, my love for puzzles and natural curious mind are probably the only reason I haven’t given up in this fight.
Some of us with chronic illness are “lucky” enough to get one diagnosis that explains all the symptoms and other disorders that we suffer from. Others go years and years racking up diagnosis after diagnosis. I thought I had received my unifying answer when the doctor discovered my AAG. I thought every issue I had could be stuffed into that box until I realized that that couldn’t be further from the truth. Still, I was happy to have an answer for so many of my issues. The next year after my diagnosis brought more issues though. I was given five other diagnosises, not including the 3 I have gotten this month. Those diagnosises are fibromyalgia, chronic fatigue syndrome, and mitochondrial dysfunctinon. I actually laughed at my doctor when he told me this as I don’t believe in these as diagnosises. To me, fibromyalgia, chronic fatigue, general dysautonomia and digestive tract paraysis are symptoms of something MUCH much bigger going on. Someone somewhere is missing a huge chunk of the puzzle. Whether that be Ehlers Danlos Syndrome, Lyme Disease, Mitochondrial Disease, some crazy autoimmune disorder or other orphan disease, but I will not settle for these cop out diagnosises. When I saw my neurologist and told him that I was uncomfortable doing more chemotherapy when we didn’t have THE answer, I was delighted to find that he shared my concerns. He looked at me and told me honestly that he doesn’t know if we will ever find one unifying diagnosis as it could very well not have a name yet or that it simply doesnt exist in my case. But he shared that he is still hopeful that I will one day get better. I will not be cured, but better.
So for now, we will keep navigating this abandoned path with IV chemo in our back pocket. But, we are throwing all of our brain power into this puzzle first. As of now, I have a few possible answers as to what has plagued my body for so long. “Atypical” Ehlers Danlos is always in the back of our minds. Mitochondrial disease is a huge possibility, one for which we are actually already treating, and we have a high suspicion that it could be one disease in particular that has caused EVERY issue down to the allergies and endometriosis. Unfortunatley, very few doctors understand this disease and it is a highly controversial diagnosis. So for now, I wont be sharing what that is. I will say that it is expensive to be tested for and most doctors who treat it do not take insurance because they would be risking their entire livelihoods by doing so. I’m blessed that this opportunity has arised though because I have highly suspected this disease in the past. It will be interesting to see what comes of it.
In fact, my love for puzzles and natural curious mind are probably the only reason I haven’t given up in this fight.
Some of us with chronic illness are “lucky” enough to get one diagnosis that explains all the symptoms and other disorders that we suffer from. Others go years and years racking up diagnosis after diagnosis. I thought I had received my unifying answer when the doctor discovered my AAG. I thought every issue I had could be stuffed into that box until I realized that that couldn’t be further from the truth. Still, I was happy to have an answer for so many of my issues. The next year after my diagnosis brought more issues though. I was given five other diagnosises, not including the 3 I have gotten this month. Those diagnosises are fibromyalgia, chronic fatigue syndrome, and mitochondrial dysfunctinon. I actually laughed at my doctor when he told me this as I don’t believe in these as diagnosises. To me, fibromyalgia, chronic fatigue, general dysautonomia and digestive tract paraysis are symptoms of something MUCH much bigger going on. Someone somewhere is missing a huge chunk of the puzzle. Whether that be Ehlers Danlos Syndrome, Lyme Disease, Mitochondrial Disease, some crazy autoimmune disorder or other orphan disease, but I will not settle for these cop out diagnosises. When I saw my neurologist and told him that I was uncomfortable doing more chemotherapy when we didn’t have THE answer, I was delighted to find that he shared my concerns. He looked at me and told me honestly that he doesn’t know if we will ever find one unifying diagnosis as it could very well not have a name yet or that it simply doesnt exist in my case. But he shared that he is still hopeful that I will one day get better. I will not be cured, but better.
So for now, we will keep navigating this abandoned path with IV chemo in our back pocket. But, we are throwing all of our brain power into this puzzle first. As of now, I have a few possible answers as to what has plagued my body for so long. “Atypical” Ehlers Danlos is always in the back of our minds. Mitochondrial disease is a huge possibility, one for which we are actually already treating, and we have a high suspicion that it could be one disease in particular that has caused EVERY issue down to the allergies and endometriosis. Unfortunatley, very few doctors understand this disease and it is a highly controversial diagnosis. So for now, I wont be sharing what that is. I will say that it is expensive to be tested for and most doctors who treat it do not take insurance because they would be risking their entire livelihoods by doing so. I’m blessed that this opportunity has arised though because I have highly suspected this disease in the past. It will be interesting to see what comes of it.