I know I haven't really written much about my trip to Georgia. Honestly, I am still trying to process all of the information we gained from this trip as well as what to make of it. The fact is, progress has been made. While progress has been made, still more progress is needed in order to continue this. Mitochondrial disease really is not a rare disorder, rather it is rarely diagnosed because doctors either do not know what it is, do not understand it, do not believe it truly exists, or blame their patients for their symptoms rather than look for a physical cause. For over ten years, I have suffered. I have been told that my seizures are a conversion reaction to stress. I have been told that I need to "consult behavioral health" in order to learn "cognitive behavioral therapy." Mind you, I've been a nurse for over a year now and to this day, despite my experience with psych patients as well as the experience of being a psych patient myself and to this day I really do not understand cognitive behavioral therapy. With all of that being said, I do not discount the fact that psychiatric illnesses are very real despite the lack of understanding that occurs, nor am I saying that Cognitive Behavioral Therapy is not needed. Neither of those things are true. I do my very best to be the most understanding and compassionate person possible and I want it to be known and understood that I do not look down on people for having psychiatric issues. However, it is very difficult to deal with very real, very horrifying physical symptoms and having medical professionals who are supposed to help you make you feel like your symptoms do not exist to them, nor are they really concerned about your body or your well-being. None of this journey has been easy. And I'm not under the assumption it is going to go away any time soon.
My diagnoses are too many to count easily. My symptoms are many and they change and progress daily. Things are far from easy and I have a terrible time trying to manage all of these symptoms of a very poorly understood disorder. The fact is that where Mito is concerned especially, medical science has a very long way to go. One thing I know for sure, is that for a long time I have been very closed up and silent about this disease. Part of the reason for this is that I was largely afraid of how people would react to being more open about my disease and its progression in my life. Without question, it is a very difficult thing to open up to people about. So much about this process is so very personal. My body never does what I want it to. Each day I see myself becoming less and less of the person I used to be. All of this is not in vain, I am very much (at least for the most part) willing to let go of the person I used to be and embrace the person I am becoming. However, not all of these things are positive. Largely things are positive, but pain does chance a person, as does suffering. At times in this disease process I have become a person that I no longer like or recognize. But I do my best to take all of these changes in stride and not allow the negativity and the suffering to take over. I am human and it is natural that at times I will fail because I am far from perfect. My hope and prayer is that God can find a greater purpose for this disease and its invasion of my life and help me to ensure that I am doing His will, rather than what I think is best. Only He knows what is truly meant to be.
Recently two of my close friends lost their children to rare diseases at very young ages. Amber was 13 years old and lost her life to Rett Syndrome, Hunter was 16 and lost his life to Sanfilippo syndrome. Both passed away very suddenly, but I am amazed at their mothers' abilities to keep going despite hellish and impossible circumstances. The reality is, while no one should ever have to bury their child, many do and it is a pain that is indescribable. A parent loses their child and they also lose a part of themselves. The amazing thing I have noticed is that despite their unimaginable circumstances these "Dragon moms," as I like to call them do not give up hope. As Amber's mother has said, "I accept." Her words are poignant, but at the same time, have a very submissive nature to them. She trusted God's will for her family and for her daughter. For years I have watched people die as part of my job, and I have realized that this life is extremely fleeting. While it is truly a beautiful life, we truly can not imagine what God has in store for us in the next life. Only God can take better of our loved ones than we can. Even more importantly, all people we love are essentially "on loan" meaning that even our children truly belong to God. God entrusts people to us so that we can bring joy and love to each other's lives. Over time I have learned more and more about the grief process, and am learning also about the incredible people I am blessed to know and love.
There were so many parts of the trip to Atlanta that were remarkable. First of all the fact that we were even able to get there at all. Angel Flight Central is an absolute and incredible God send that allowed Justin and I to travel for this appointment free of change in an airplane. Each of the pilots we traveled with donated their time, their planes, and their money toward this trip. We were able to really enjoy our time with the pilots, getting to know them as people and learning what caused them to donate their time and resources to charity through Angel Flights. Each of them had their own personality and great qualities to share with us and we truly enjoyed that part of the trip.
Now, on to the main part of the trip, my visit with Dr. Kendall. Immediately I noticed that things were different with her than any other doctor I've ever seen. She looked through my medical history, and was ready to discuss the issues at hand. Something that I did not even bring up, which has a very real effect on my overall quality of life is my autonomic dysfunction. By just looking at me, she could easily tell that I had some sort of Peripheral Autonomic Neuropathy. This diagnosis in and of itself is quite telling of her overall attention to detail and looking at the patient beyond just what everyone else sees. Another thing that really helped me out was that she didn't talk to me like I was just another patient. Knowing that I was a nurse, she informed Justin of the biology behind Mitochondrial diseases and respected the fact that as a nurse I have medical knowledge and also have done my share of research. Twelve years without a diagnosis led me to do a lot of my own research as to what could possibly be going on with my body. Mitochondrial disorders really were the only thing that made any sense to me, and continues to be to this day.
Dr. Kendall would like me to undergo more testing to see if there is a possibility that a Mitochondrial disorder could be the cause of my illness. It seems to me like I am finally in the right place as far as pursing a diagnosis and a more acceptable (to me) quality of life. However, this is far from over. There is so much more that needs to be done and accomplished before we will have a concrete diagnosis, and that may never be in the cards. Whatever happens, I know that I do not have to face this alone and that in and of itself is absolutely wonderful.
I have, however, experienced a pretty major decline in the past week. Things are far from stable. So, I would ask that you would pray for me and for those who love me. We are working with Dr. Kendall and my PCP to see if there is a way we can get my issues stabilized sooner rather than later.
There were so many parts of the trip to Atlanta that were remarkable. First of all the fact that we were even able to get there at all. Angel Flight Central is an absolute and incredible God send that allowed Justin and I to travel for this appointment free of change in an airplane. Each of the pilots we traveled with donated their time, their planes, and their money toward this trip. We were able to really enjoy our time with the pilots, getting to know them as people and learning what caused them to donate their time and resources to charity through Angel Flights. Each of them had their own personality and great qualities to share with us and we truly enjoyed that part of the trip.
Now, on to the main part of the trip, my visit with Dr. Kendall. Immediately I noticed that things were different with her than any other doctor I've ever seen. She looked through my medical history, and was ready to discuss the issues at hand. Something that I did not even bring up, which has a very real effect on my overall quality of life is my autonomic dysfunction. By just looking at me, she could easily tell that I had some sort of Peripheral Autonomic Neuropathy. This diagnosis in and of itself is quite telling of her overall attention to detail and looking at the patient beyond just what everyone else sees. Another thing that really helped me out was that she didn't talk to me like I was just another patient. Knowing that I was a nurse, she informed Justin of the biology behind Mitochondrial diseases and respected the fact that as a nurse I have medical knowledge and also have done my share of research. Twelve years without a diagnosis led me to do a lot of my own research as to what could possibly be going on with my body. Mitochondrial disorders really were the only thing that made any sense to me, and continues to be to this day.
Dr. Kendall would like me to undergo more testing to see if there is a possibility that a Mitochondrial disorder could be the cause of my illness. It seems to me like I am finally in the right place as far as pursing a diagnosis and a more acceptable (to me) quality of life. However, this is far from over. There is so much more that needs to be done and accomplished before we will have a concrete diagnosis, and that may never be in the cards. Whatever happens, I know that I do not have to face this alone and that in and of itself is absolutely wonderful.
I have, however, experienced a pretty major decline in the past week. Things are far from stable. So, I would ask that you would pray for me and for those who love me. We are working with Dr. Kendall and my PCP to see if there is a way we can get my issues stabilized sooner rather than later.
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