My appointment with Dr. Kendall is less than a month away. I am still working on how I am going to make this work financially. Not to mention the enormous amount of anxiety I have due to my fears of not being able to get answers and going back to square one yet again.
My entire world was rocked today by something quite simple, yet phenomenally important. There is an organization called Angel Flights Central exists to allow people to get to appointments via air travel. I called them today just to kind of "feel out" this option. Nothing could have prepared me for what actually transpired during this conversation. The appointment with Dr. Kendall is in Georgia, over 700 miles from my home. But when I was talking to the flight coordinator. She explained to me what Angel Flights is and what it does as well as how the process works. Angel Flights utilizes volunteer pilots who run small, non-commercial airplanes. The pilots pay for their own gas. Obviously, ideally it would be wonderful to take the traditional airplane ride, but it is apparent to me that this would easily be the most expensive part of the trip. Coordinating a flight with Angel Flights is truly an answer to a prayer. For the past few months, Justin and I have been going over and over with each other how we were going to make this trip work. It can not be disputed that this appointment needs to happen. Honestly, it should have happened years ago. Financial hardships have made this anything but straightforward and simple.
Unfortunately, any person with a rare disease, especially a mitochondrial disorder is difficult to understand. First of all, most doctors in your area are not likely to have any idea what your disease is or how best to care for someone with it. Patients with chronic, rare illnesses are poorly understood in general, but Mito patients seem to deal with more hardships where that is concerned. I have been told more times than I can count, "but you don't look sick!" For the most part they're right. Maybe I don't look like crap on the outside every single day, but the people who know me and know me well are able to sense when I am having an "off day" or as I have called them before "Bad Mito days." Today was one of them and my friend the dietician was able to tell quite easily that I was weak. My sleep schedule remains extremely erratic, and various issues, including pain, anxiety, reflux and skin issues have been keeping me awake when my body is absolutely fried and I don't feel like I can stay up any longer. Sometimes I honestly wish my body would just crash and let me sleep for a very long time because clearly that is what I need.
More concerning includes the "brain fog" I have been experiencing lately. This is not the first time I have experienced this, in fact it has happened more than once before to me. Prior episodes really didn't have any medical explanation. I am so used to this I could probably scream. For years, there have been many medical issues that are seemingly unrelated and nothing has ever really been definitively put together. Perhaps the most frustrating thing about having Mito and being undiagnosed is this very fact, and how difficult it is to live with ongoing and worsening symptoms without any explanation for them or relief from them. I have lived with this disease for my whole life, but it has drastically changed my life more so in the past 12 years. The brain fog is enough in and of itself, but anxiety has set in to add to it all. Disorganized thoughts do not help this, and unfortunately I can not "turn my brain off." Plus, my brain is already lacking in energy, so that's already no bueno. Honestly it's just a vicious cycle and I'm over it.
I continue to be in prayer about this whole situation, it has brought me to my needs and humbled me greatly.
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