New Challenging Joy-filled Path

 New Challenging Path

I have a new challenge in my life where I need to work hard to find joy. I was diagnosed with Spinocerebellar Ataxia as well as Barrett’s Esophagus. One is not fun, and the other one is horrifying. I would love to be told that it’s all a joke. I can tell that if it isn’t what was diagnosed, it is still not something that I want to deal with. If it is Spinocerebellar Ataxia, then I know there is no cure. It’s degenerative, physically and mentally. I have been watching my body losing some of its abilities for about 5 years. Recently, I have been noticing mental degeneration. The losing of skills has been so scary and unnerving.

I have been having a bit of a problem writing these days. I forget what I am talking about, what I was planning on saying, and words. I have noticed it getting worse recently.. We used to joke about having to play Scattergories to figure out what I wanted to say. Now I feel like I have to play scattergories with myself to be able to play scattergories with others to figure out what I want to say.

I feel guilty about what I am doing to my family. I’m extremely scared about my future as I lose my words and thoughts, will I still be cognizant? Will I be laying there not being able to move, needing help, don’t have words, and still be aware? I am told not to worry about tomorrow, but I am absolutely scared beyond measure. I am trying to get into UCSF, but my health insurance isn’t naturally compatible.with theirs. They got my original MRI, but somehow can’t get my new MRI. I have spent all day today calling each hospital multiple times after calling each of them two days ago. If everything I learned today is accurate, each hospital requires a different sequence of events to get an MRI report and imaging. It actually may be worked out. I talked to my neurologist’s assistant quite a few times. She believes that they have it figured out. I will find out next week.

Having to fight all day, I am exhausted. I am discouraged. I am a bit depressed. On my daily planner, I keep track of my daily symptoms. I have added a portion to do every night. I have to decide if the day has been “well with my soul.” Then I have to choose something that brought me joy. I challenged myself to write down what it was. I’ve been doing well the whole year. Tonight is looking to be hard…which discourages me…which makes all my negative feelings worse. I kinda feel like a failure because I am having difficulty finding joy in something…anything.Writing this down has helped quite a bit. Will probably have no problem being thankful since I have such a wonderful family.

I finally got something to type on, so I can write again. That brings me a bit of joy. I have been discouraged and wanting to write to get all this stuff out of my head.

I have no idea if any of this is makes sense. I have no idea if it’s understandable. I just needed this to get out of my head for a bit. I just want to sleep tonight. 

I’m sorry for writing such a negative post. If you have any questions, ask them. If you have any encouragement, please let me know, but please don’t say things like it will all be fine or God is in control. These may be both true…and I know it…but these words are not really encouraging.I’m so sorry for writing that, but it is true. God’s love and help are true, and the not being encouraging is true. Just say that you love me and are thinking and praying for me.