Lately I have been struggling, but in addition to struggling, I'm having moments that happen, here and there, where I truly "get it". Living with Mitochondrial disease, (which we're pretty sure I am dealing with), not to mention everything else that goes with being twenty years old and having a busy life, is not easy. Saying this doesn't necessarily have to be done, I know that. I've said more about that since I've received the clinical diagnosis and I'm doing my best to come to terms with this situation. By "this situation" I mean dealing with the latest setbacks brought on by the latest energy crisis/seizure activity I have experienced. Also, by "this situation", I mean the struggle I deal with each and every morning to get up from my bed. The pain I deal with all day, every day. The medications I live with each and every day, and have to remember to take each and every day. To keep my body somewhat stable, I have to take my medications. Each and every day. Well, even with these medications, there is still the threat of an energy crisis. But, for today, while I am somewhat stable, I will thank God.
Today, I was able to get out of my bed. I went to Mass this morning, shared it with some of my fellow parishioners and my residents. One of my residents, my "mass buddy" passed away last Thursday, and even though I will dearly miss her sitting next to me during Mass at work, today I felt her presence with me during Mass. She was a very special, precious lady in my life. Though she struggled with Alzheimer's disease, during Mass she was a very peaceful, precious person. When I was caring for her, she wasn't always that way. She would try to bite her caregivers and instead bite herself. She would say things like, "shut up, put the pillow over your face, and go to sleep". The things that she would say were humorous, for the most part, but at times she was difficult to care for. I still miss her very much, and will miss the humor she added to my life.
So I am taking the time to be thankful for what God has given me, and continues to give me. I pray that the appointment I have with the neurologist, whom I believe is Dr. R, as Dr. M will be leaving the clinic I will be going to for my appointment, will provide me with some more answers. More comfort. More relief. I continue to pray for these things, that I will maybe have some pain relief to help me be more comfortable. I hope that others who read this blog will extend some prayers for this as well.
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