Congenital Myasthenia

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Alone in my fight #CheckInWithMe

I have #CongenitalMyasthenia, #Scoliosis and #Adenomyosis. My life recently has been filled with pain and weakness. I’m currently testing out a new drug for my #CongenitalMyasthenia and it’s making me have crazy ups and downs. Last week I only went to 1 1/2 days of school. My whole life, academics have been something I could hold on to and not be defined by my illnesses. Now my school career is shaped by how many #spoons I have each day. No one understands what I go through. I sometimes feel too weak to do anything except lie in bed while my back hurts and my uterus burns. All of my illnesses are overwhelming and I just got this app to #reachout. #CheckInWithMe.


looking forward

I recently gave a presentation on invisible disabilities and its impact on my life to a scout troop working on their #Disability awareness badge. During my discussion I discussed how an ever changing “New Daily Norm” or even moment to moment can impact one’s goals.

I talked about what my goals & dreams once were, which included being a lawyer working in the civil rights & social justice arena and serving as a politician. I may not be able to do what I had so diligently planned for but I still make a difference in what I do. I prepared for so many years for a life in the political realm. I wont be able to run for office as I would not be able to fulfill the requirements of a full-time job. That being said, I still do make a difference in my advocacy for the disabled and volunteer work in the scouting community.

I’m happy to say, that I am now officially serving as a volunteer with the Regional Advocacy program with the Christopher Reeves Foundation. I do volunteer with #RareDisease Legislative Advocacy and likely NORD, National Organization for Rare Diseases.

My life is far from what I expected or so diligently planned for. With that being said, I wouldn’t change it for I have my @silverlining, my family, which I would not have had but for my challenges with Ehlers Danlos. I also know I am more empathetic to invisible and cognitive conditions due to my challenges with dysautonomia and #MyastheniaGravis. This makes me better equipped to work with scouts with special needs as well as to help educate other leaders.

While talking about my experiences, I realized my mental motto to “look forward” not only applies to my dreams for “jobs” but to my abilities in the recreational world. I like to use adaptive skiing as an example. When I first learned, I could Monoski as my weakness & injuries developed, I began bi-skiing. Soon, my weakness became worse & my balance decreased. I fought transferring to a bi-ski with fixed outriggers as I wanted the speed and indpendence that went along with that ski. The reality is I spent more time falling than skiing. Finally, I was given the choice to change ski’s or not ski. I changed skis.

Last year was my first time on the slopes since changing skis. My first day I spent more focused on not being able to mono-ski rather than enjoy what I could still do. It took me a few days but by the third and last day, I realized how much fun I could still have. Sadly, the first two days of skiing were lost to me as much time was focused on what I was “missing” rather than what I could do.

My question for you… “have you focused so much on what you can no longer do, or change in abilities that you are not enjoying what you can do? If so, how do you think you can get past it to enjoy what you can do?”

For me, I need to constantly remind myself, what I do today does matter. I can still make a difference for people. I also remind myself to enjoy what I can do today as that may change tomorrow. #ChronicPain #EDS#CongenitalMyasthenia

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