I never really thought there was going to be a moment that would come and leave me wondering whether to cry or curse. It feels unshakeable – this event – because even as I distract myself from it, when my thoughts wander back to the place that can bring me to my knees or swallow me in the darkness, I find myself alone in the sea of the unknown.
My luv by my side, my Holy Spirit residing inside, my God directing my path, and my friends and family supporting me, I still confront the unknown daily alone. Alone, because it is a rare disorder and therefore lacks commonality in my circle. I experience events frequently; slurred speech, swallowing issues, and even the dreaded nasal regurgitation, loss of balance, along with muscle weakness, but for some reason none spoke as loudly to me as being unable to cut my own food. That specific event left me feeling as if I was looking into my future and that was terrifying.
The event occurred when Jersey Tee and I were having lunch at a Mom & Pop truck stop. A nice little place chosen in part for the ambiance, friendliness of staff, and home cooked meals. We began our lunch with a salad. As we were cutting our salads I noticed my arms became fatigued. Three repetitive slices into the salad and I had to take a break. I suppose this is where I should say I was recently diagnosed with Myasthenia Gravis; a rare muscular disease which impacts the voluntary muscles of the body. There are good and bad days with this dreaded disorder, but no cure. Needless to say, the salad event would constitute a bad day for me. My Jersey Tee asked if I wanted her to cut it for me. I told her no. She asked if I were sure and I stubbornly responded, “no.” I was blindsided by this myasthenia cheap shot. My next thought, I am not ready to have my food cut up for me. I am not there yet. Is this what my future holds? I don’t ask why is this happening. To me, it is a pointless, ridiculous question. Why ask why. It is part of myasthenia; a debilitating neurological disorder, leaving its profound impact.
Despite the treatment I am receiving, benefits seem to be off in the distance. I believe I have had approximately 14 treatments and have been informed that my legs are weaker, and well now, this incident with the arms – I have to say I might be in the 15% who are referred to as “refractory.” There are additional treatments, each more difficult on the body, so I am hopeful that the IVIg will kick in. I am however learning the losses are multiplying and abilities decreasing, severely impairing my ability to engage in simple daily activities.
Yesterday as I was receiving treatment and unable to distract myself, I found my eyes constantly welling up. I need to do something I decided. How am I going to cope with these ongoing issues? Each day brings something different, a kaleidoscope of symptoms. After a bit of research I found that NH lacked support groups for MG, or at least I was unable to locate any locally. So, I called the Myasthenia National Organization and will be speaking to someone about starting a support group in NH. It is said that sometimes the best way to help ourselves is to help others. Little is known about this disorder and I think informing medical providers by inviting them to the support groups might be beneficial as well.
Additionally, maybe I will be able to start an online chat group for MG as well, if there is an interest.
I would like to thank all my friends and family for their continued prayers, love and support. Thank you my sweet Jersey Tee for all that you do for me.
Deb Correia 7/9/2016 ©