Life with Myasthenia Gravis

Myasthenia Gravis an Autoimmune Disease

    I know some of you all are wondering what in the world is myasthenia gravis? And am I pronouncing it right? (LOL) Myasthenia gravis is one of many autoimmune diseases but its very rare. This particular disease effects the receptors that transmit what you tell your body to do and it doesn't get to the brain because my body is attacking itself. It is very similar to lupus except there is no pain but all of my muscles become very weak and almost inactive.

My story

    When I was 18yrs old in 2004 I was living with several family members in Chicago after high school before feeling the initial symptoms. Before I got to that point in life there was a long list of unfortunate events that took place.
    My parents got divorced when I was about 7 and I got raped over a time period that I don't remember and I was about 9. I never told anyone about that until I was about 16yrs old. My father got remarried and took custody of me and my brother when I was 11. We had a stepmother whom we felt at the time did not love and care about us and my mother was not frequently around or active anymore. High school was okay until my brother started smoking weed and did crazy things that ended him in jail starting at the age of 14 and I was around 16 or 17 at that time.  i would have to search for him every couple of days because he would always run away from home. He also got diagnosed with schizophrenia paranoia and has been institutionalized for the past 10 years to date. I stopped going to school my senior year of high school because after a conversation with my mom. I realized I would not have anyone to help me file financial aid in order for me to go to college. I then just decided to ditch school to go to work. After that I enlisted in the Navy and almost went but my family convinced me not to go and I didn't graduate on time with my class and that made my contract void. Which brings me to when I started feeling symptoms. Keep in mind this is the light version of the story.
      Like I mentioned earlier I was 18 years old and that fall I was living from house to house because I had gotten kicked out of my father's house for fighting my stepmother over trying to send my brother to jail. That ended up with me going to jail for a couple of days. Anyhow, as I was working and going through life emotionally drained  I was still determined not to be a failure. I had an aunt who helped me get into a program that allowed me to get into every HBCU college in the country. Unfortunately for me I had no one to co-sign the loans for me so that died as soon as it started. I then continued working and laying at whomever house I felt like going to for the night being determined to at least start school in the spring.
    In the midst of all of the drama my body was slowly shutting down on me. It first started when I realized I needed support to put my hair into a ponytail because my arms were too heavy to lift. After that it was hard for me to lift my legs to go up steps. I remember trying to get on the public bus and it took me about 2 minutes to actually get on because I kept falling. That was so embarrassing. Next thing I remember is not being able to eat dinner. I had a really hard time chewing and swallowing and drinking anything. Anyone in their right mind would've went to the doctor by now but I didn't and I couldn't tell you why I made that choice. Maybe it was because no one noticed and I just put it on the back burner as if it or I didn't matter anymore.
   One day my best friends came home for winter break and noticed that one side of my face was inactive. I never noticed but it actually looked like I had a stroke. I would go cross eyed and my eye on the right was very droopy and wouldn't open all the way. After that my speech had gotten worse and I wasn't able to talk for more than a few minutes. It wasn't until January 2005 that I decided to go to the hospital and the only reason why I went was because I was starting school that semester and I wanted to be able to answer questions in class. SMH!
   When I went to the hospital needless to say they kept me there. They ran tests on me for about a week and then diagnosed me with the disease. The doctor said that all my voluntary muscled pretty much failed when I came in and the last thing to stop working properly would have been my diaphragm and I could've died. I ran out the hospital and started school as soon as I got out. Nothing was going to keep me from being successful and feeling like a failure. Then I got hospitalized again because I wasn't used to taking the medications. That ended my college career for that moment but of course I eventually got it together.
   I worked hard and got my own place by the time I was 20. At that time I was in cosmetology school, working at a hair salon and assistant manager of a well known shoe store. Everything was starting to look up for me. Until I realized the side effects of the medications I was taking and how the medicine was actually killing me. That's another story. I just wanted to share the hard part. I will post the horrors of medicine at a later post.

If you or someone you has overcome anything tragic please share your story as an inspiration to me and others to stay strong.

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