Crazy title, I know. For the last six, almost seven years I have had health problems and have made numerous visits to countless doctors and ER's. Up until July 2011, I kept hitting brick walls. That is when I saw my current neurologist for the first time and he was able to give me a name to go with the insanity that I had been dealing with over the years. Myasthenia Gravis. What does this mean? Well, it literally means, "Grave muscle weakness." I fall, have trouble breathing, at times walk as though I am drunk, have slurred speech, blurred/double vision, difficulty swallowing, drop things, and overall fatigue to top it off. Basically I have felt like a major train wreck.
After finding out what on Earth was wrong with me my neurologist sent me to have a CT scan of my chest. This is standard procedure for anyone with MG. The results came back showing that my thymus is enlarged and has tumors on it. My neurologist called me at work to give me the results and to tell me that I needed to have surgery as soon as I possibly could. That was back in October of 2011. I was referred to a local hospital where they set up surgery for the next week for a thymectomy. That evening I was called and told that they needed me to come in to see their neurologist the next day. Low and behold, the neurologist over there happened to be doing a research project on Seronegative MG, which is my diagnosis. He cancelled my surgery and put me through thousands of dollars of not-so-fun testing. I called my neurologist outraged at what was going on. The stress of it all was causing my MG symptoms to flare badly and I was very weak and not doing well at all. He was just as outraged as I was and called that particular hospital and gave them a piece of his mind. He then called up a hospital that is two hours away to ensure that they were not going to give me the run around before he referred me.
That is where I am now. The other hospital treated me like a human being and not a lab rat. The surgeon said that all my past medical history as well as my CT scan and current symptoms were all confirmation of the disease and that the thymus gland HAD to come out. On Wednesday, January 25th, I had IVIg therapy to prepare for surgery. Basically, it is to boost up my immune system so that I can handle the surgery. I go in on Tuesday, January 31st to have the surgery done FINALLY!
The first two days after IVIg I felt horrible. I ached all over, had migraines, and got sick. I expected all that however, because I had done my research. Today I feel absolutely amazing!! The best I have felt in years. The hope of the surgery is to put my MG symptoms into remission. Lets hope so! The muscle weakness has made it very difficult to make jewelry, which is my catharsis. It helps me to get through the rough spots in life. That is why I had a harder time initially dealing with all of this, because I wasn't able to hide away and make jewelry like I used to. The Mestinon that the doctor put me on helped, but my hands still get very fatigued and I haven't been able to do a lot of wire work like I used to. Whatever happens, remission or not, I am going to continue to do the best that I can and will create with whatever strength that I have.
I'm also in the process of moving back home to my grandparent's house where I grew up. They have a large farm house and a big yard, both of which have become too hard for them to take care of. My family and I are moving out there to help them and we are planning to do a little homesteading. We plan to grow a big garden this year and raise goats and chickens. We are all very excited about all the changes that are taking place and hopeful of the future.
Many blessings!