My Journey

I receive a lot of comments and emails from people who read my blogs. I truly enjoy reading them. Recently however, I received an email from someone who wondered why I sugarcoat things when it comes to Myasthenia Gravis. This person is really struggling with MG and feels that my blogs oftentimes make it sound like MG is no big deal. I thought I should probably explain.

Myasthenia Gravis can be very serious. Everyone who has it experiences it in their own way. Every case of MG is different. Some people are so debilitated by MG that they can hardly function. Many can no longer walk. Others have just mild symptoms. Most are somewhere in between. I hear from people who struggle to even take a shower because they don’t have the physical strength to make it through the entire event. I know there are people on ventilators because they’ve had a myasthenic crisis. I also know of people whose symptoms are so mild, they don’t yet require medication.

I don’t mean to downplay the difficulties caused by Myasthenia Gravis. I know this can be a terrible disease. I also know that some people with MG may develop other autoimmune diseases, like: Grave’s Disease, Hashimoto’s thyroiditis, Rheumatoid Arthritis, Lupus, Pernicious Anemia, Sjögren’s syndrome, Type 1 Diabetes, Vitiligo, and Celiac Disease. In addition, diseases like ALS or Multiple Sclerosis can coexist in a person with Myasthenia Gravis and be overlooked because the symptoms are so similar. It’s not that MG leads to ALS or MS, but although rare, these diseases can occur at the same time.

I don’t mean to sugarcoat MG in my blogs. I try to paint a picture of what it’s like for me. It’s my journey with MG and I attempt to describe what I’m experiencing. I can still get around well, although my legs become extremely weak and painful at times. There are those with MG who are even unable to walk. I have trouble breathing at times and I fear colds because I’ve experienced how bad a cold can get for me. I’ve coughed until I don’t have the strength to cough anymore. I’ve choked to the point of almost passing out because I don’t have the strength to clear my airways by coughing.

I also realize that Myasthenia Gravis is a progressive disease and someday my symptoms could get worse. My medications do a good job for me today, but someday they may no longer hold me. I know I’m susceptible to develop some of the diseases I mentioned above, so my doctors monitor me closely. I know that someday, walking may become a whole lot more difficult.

Here’s the thing: I’m not there yet! I don’t want to spend time worrying about what may come. I want to spend the rest of my days enjoying everything I possibly can. Yes, I work on staying positive because that’s such an important part of fighting this disease. Your mind can play incredibly harmful tricks on you and I don’t want to fall down that rabbit hole. So, I work to stay positive. I think of all the things I can do, instead of things I can no longer do. I try to keep busy. Those are all things that will help both my mind and my body.

Don’t get me wrong; it’s no fun having Myasthenia Gravis, but I choose to fight it. I have Myasthenia Gravis; it doesn’t have me.

To the person who felt I’ve been sugarcoating things, I’m sorry if I’ve given that impression. I’m also sorry that you’re experiencing a tougher bout with MG than I’m experiencing. I truly hope things improve for you.

In my journey with MG, I choose to remain positive and focus on positive things, like writing this blog. It’s not intended to give people the wrong impression or sugarcoat what it’s like to have MG. It’s intended to help those with MG and their caregivers.

I receive so many comments and emails from people who need and enjoy my encouraging words. I choose to keep giving them. If I can help even one person make their journey with MG a little better, then it’s all worth it. We have to stay strong and there’s no better way to do that than to stay positive.

Together we’re #MGStrong!