Frustrations abound!

I can't even explain in words my frustration at this moment. Here I thought that maybe I could get an appointment with a doctor who specializes in Mitochondrial diseases at Mayo clinic so maybe I could get some more concrete answers as to what I can do to address the many issues that I have been having lately. So, I called Mayo, spent over 15 minutes on the line answering question after question, giving numerous pieces of medical information and other things, all to find out they can offer me nothing at this point for an appointment. What I'm thinking is that I desperately need to pray about my upcoming neurology appointment and that Dr. R will provide some answers and things that can be done to give me more quality of life, pain control, and the like. Living with an undiagnosed, life threatening condition is very complicated, frustrating, and exhausting. Especially when it seems like you can't sit upright after doing a simple task, when the smallest things threaten to take every speck of energy you have in you. I can't explain accurately to a person how frustrating and aggravating this situation is. The solution seems to be getting a diagnosis, but that is far easier said than done. I've been attempting to pursue a diagnosis literally for years. All to be at the same point I've been at from the beginning, except more ill than before. Now, the dysautonomia, pain, seizures, energy crises, and everything that comes with having Mito are threatening to take over my life. I don't want to allow that to happen, but if I don't get a diagnosis, unfortunately that is where I'm headed. My intention is not to be negative, I have always attempted to have a positive attitude as much as humanly possible. But I can not ignore the fact that my body is failing me, I am losing control of it. The whole situation is more terrifying than you can possibly imagine. No matter how much I try to be positive, it seems life finds it funny to continue kicking me down. I don't know what else to do. The only way I feel I will be able to handle this situation is on my knees, almost literally. However, kneeling in prayer causes muscle fatigue and it causes my leg muscles to shake and burn. More often than not I must pray while sitting. Kneeling in prayer brings a lot of comfort when I am able to do so, but I have to do what I can to prevent energy crises and pain. Muscle fatigue undoubtedly causes a great deal of pain and frustration to me.

In addition to my failing health and running into every dead end you can possibly imagine, today marks the day that nine months ago, my Papa went to Heaven. I miss him so much I can hardly stand it sometimes. Last night I wrote a three page letter to him just talking. When he was alive, he was my confidante and I was his. We vented to each other about our frustrations, our fears, everything. Now that he's gone, the grief and pain is a little easier to bear if I am able to write down the things that I would say to Papa if he were still here on earth. The fact that it's been nine months since he passed away seems completely unreal. It's overwhelming at times to come to the realization that he has truly been gone for that long. My heart is still broken about it at times. Grief is difficult and I don't know what to do at times to make it easier on myself. I've done everything I can up to this point and I'm doing much better than I used to. Some days are better than others, as with everything. Even though I think about him every single day, it isn't every day that those thoughts bring tears. Now, more often than not, I am able to smile about the memories I share with him. I smile about the selfless love that he gave me, love only a true parent could give. I remember that because of him, I am the person that I am today. Because of him, I learned valuable skills as a caregiver. Though I miss him so much, and I always will, I know that he stayed with us as long as he could. I think about him and remember a poem:
"God saw you getting tired, and a cure was not to be, so He put his arms around you, and whispered 'Come with me.' With tearful eyes we watched you suffer and saw you fade away. Although we love you dearly, we could not make you stay. A Golden heart stopped beating, tired hands laid to rest, God took you to prove to us, He only takes the best."

And now in just 13 more days, it will mark nine months since my little Aleia passed away. That loss has also been very difficult for me to come to terms with, and there is a lot more I can write about that. But right now, I'm far too exhausted to continue typing. Today is my day off from work, so I will be going to get myself some supper and going to my friends apartment to chill and watch some movies in the air conditioning. We are in a heat advisory here in Minnesota and I am suffering terribly as a result of the heat and humidity. Looks like it's time for me to get going!

Please continue to be in prayer about my upcoming neurology appointment, and the fact that I am still working on advocating for myself and trying to get some answers. I still have a great deal of anxiety about this appointment and about everything I'm going through. There is the possibility of some really good things happening very soon, but I don't want to say anything yet for fear of jinxing it.