There is so much I want to write and share with everyone. I honestly do not know where to begin. As you all probably know by now, I have Myasthenia Gravis. It is so much more than just an "autoimmune disorder". Right now MG, rules my life, even though I have been trying to keep some semblance of normalcy. It steals my strength and my ability to do what I want when I want. It has been devastating for me to have this.
I know it could be worse, but that doesn't make me feel any better. I want my life back, I want to get up get in my car and drive just because I can, but I cannot do this any longer. I want to go lay in the sun for hours on end and have the heat not affect me. I want to do yard work without feeling like I am dying 5 minutes into it. I want to brush my hair without my arms getting tired. I want to take my dogs on walks and go hiking. I want to be me again.
Last week, I had my thymus removed by having my sternum cracked open. It is just as bad as it sounds, it is the same surgery as someone goes through for open heart surgery except they were in my chest instead of my heart. It to date, was the most agonizing pain I have ever experienced. There is a small chance my MG will go into remission by having it removed and to me it was worth the chance. I won't know for a couple of months if I am one of the lucky few and will be blessed with remission or not.
For now, I am being very careful not to overdo it, my mom and husband have been taking care of me and keeping me from mundane activities like reaching for a glass on the top shelf. I have been sleeping 12 plus hours a day and allowing my body to recover from surgery and heal. I want to write about my journey with this, but haven't had the energy, but slowly it is coming back to me and I will post more on what has been happening with me.
Remember, June is Myasthenia Gravis Awareness month, by helping raise awareness more research will be conducted and hopefully a cure can be found. Please read up on what Myasthenia Gravis is by going to the Myasthenia Gravis Foundation of America page.
Till Next Time,
T.
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