I was very secretive about my first visit to the Myasthenia Gravis support group amongst my friends and family. I just knew this was something I had to do by myself. I didn’t know what I was going to find, but I just hoped for something that would help me in what I was going through now. I had become very good at concealing the true essence of what this disease was doing to me. I didn’t want anyone to think I was no longer capable on a paraplegic level. Most of all, I just didn’t want to believe this was really taking over my body.
I made sure my husband didn’t come inside with me, and he dropped me off outside the building. I wheeled into the room of the support group and found a place in between two people. One was kind enough to pull the chair out for my power chair. My first day happened to be when they were having a speaker. The speaker was an anesthesiologist. I knew that the lead facilitator would not be here this time, but I had already met her stand-in.
The speaker hadn’t started yet, so I said my hellos to the ladies next to me. I told them that I just heard about this group, and after speaking with the facilitator, wanted to find out more about this disease.
The speaker began his presentation about the complications of performing surgery on a patient with Myasthenia Gravis, and explained that it is just as important for them to have an anesthesiologist, as a surgeon, who understands the condition. He explained more about the disease, and his belief that it is indeed neuromuscular. He also said that often patients with Myasthenia Gravis need to be on a breathing tube after surgery.
After the presentation the facilitator asked everyone to introduce themselves and explain their current condition. I found myself telling the group, in detail, that I was not a power wheelchair as I was now – but a manual user, and that I was wearing the glasses I was wearing because I couldn't see without getting severe double vision. I also explained the problems I was having with chewing, swallowing, fatigue, and requiring assistance at home with basic needs, such as dressing. One thing I didn't mention to the entire group was that I was also beginning to experience diffuculty breathing.
As I told the group that just a month ago I was in a seventeen-pound titanium manual wheelchair, I could feel those words seep into my heart - and it was then I really felt the jolt of my circumstance. I was so desperate, but had no idea what to do or who to turn to, and that is why I was really here.
As I listened to the others around me, I realized that their stories and symptoms were just as mine, except I was the only one in a wheelchair.
I was handed a clipboard with a form I was to fill out, the group also made sure I received an emergency card that I was told I must keep in my wallet. If I was ever to be admitted into the hospital I was to show them the card since it also had a list of drugs that I must not take. This was also the first time I was given knowledge about what Myasthenia crisis was.
When I left I was so relieved, to not only meet some new friends I really needed right now, but for the priceless information.
As promised by the time I got home I received an email with the neurologists that the majority of the group was seeing. It was pretty apparent to me that the doctors that really worked only treating Myasthenia Gravis were a few, and very booked. I managed to make an appointment with one a month from now. I thought having a second opinion wouldn’t be a bad thing.
It was during this week that my breathing was becoming more sporadic. By the weekend it was getting worse, and I called the lead group facilitator, who was also my mentor, and she advised I should seek medical help.
After speaking with my husband, we immediately drove to the emergency room of the neurologist I was to see next month. It didn’t take but thirty minutes before I was tagged with a bracelet and admitted.