MG story 2: Not Normal

This month, MG awareness month, I am sharing stories, with their permission of course, from other's who have MG. Myasthenia Gravis is called the snowflake disease because we are all so different. You really can't compare one MG patient to the next, or one hour to the next. I hope this gives you more insight into the life of someone living with MG. I hope this gets MG awareness out there, because we NEED awareness. Thank you for reading, thank you for sharing.

Thank you to the person who contributed this story.

"People who are trying to understand what MG is, are always telling me that 'at least with medication and treatment I have read that you can be normal.' This drives me crazy. I have not been normal for years! 

I cannot walk without assistance. I cannot eat certain foods I used to love because I cannot chew without fatigue and swallowing is so difficult it takes real effort and pain. I cannot speak for more than a few minutes before I start to sound like a drunk. I have to have oxygen 24/7 because my diaphragm is so weak I do not get adequate inspiration. 

I had a Thymectomy that they were sure was going to put me into remission. It has been three years with no results other than a nice scar. I spent 5 entire days each month in the hospital getting IVIG infusions. I take a total of 22 different meds a day to treat this awful disease. I usually have 5-6 crises per year in spite of all this treatment to make me normal. This requires ventilation support and plasmapheresis over a ten day period. 

I have to avoid crowds and people who are sick because of my high risk for infection. When I do get sick it is life threatening. For me it is not just a cold or flu that people accept and after a few days are better. I can be seriously ill for weeks. 

I cannot climb stairs. I have trouble holding simple things like pens and spoons. I can no longer do things that I once enjoyed. I had to sell our ranch and my beautiful horses. I have had to give up my job. I am now on disability. My vision is double most days and when fatigued I cannot even get one of my eyes to focus. I have prisms in my lenses and sometimes need to wear an eye patch to allow me to see anything or to rest my eyes. Now my doctors tell me my condition is refractory and the medicines are no longer working to my benefit. I could go on but I think this makes the point! 

What about this is NORMAL???? Ask my wife if she thinks I am normal or even if she feels as a caregiver that her life is normal. [...] A diagnosis of MG means that your life as you knew it is pretty much over. We will never be that kind of normal again. The misinformation on the internet is written by people who may be learned but I guarantee [they] have never had MG. 

June is MG awareness month. Take the opportunity to use your influence to educate those you have association with about MG and how this disease has required each of us to redefine our lives and set new normals for everything we do! I realize that each person's experience is different [...] This is a serious illness with sometimes devastating symptoms that bring about real disabilities. For some they are mild and respond well to treatments, but for people like myself they are severe and we have to live each day by each moment."