Why Can’t We Find the Correct Treatment for Me?
Back in December 2008, I’d been living with a diagnosis of myasthenia gravis (MG), asthma, allergies, and hypertension for a couple of weeks. Still, my right eye was closed!
I wondered, "Is this ever going to be resolved?!" Yes, I’m impatient, and by this time I was extremely frustrated and depressed. Plus, Christmas was upon us.
My husband and I decided to try shopping for Christmas. Well, not a great idea. I had no more than stepped into one of my favorite craft stores and left in tears.
Coping with the pain
I had back problems for years but thought it was just the work and additional weight causing it, so I lived with it. Well, I couldn’t even stand up.
It was so painful and coupled with the weakness from myasthenia gravis, I returned to our car. However, to my surprise, people were actually stopping to see if I needed help. For our other stops, I just stayed in the car.
Christmas means a lot to me. I love to celebrate with my family and I generally go all-out with decorations, activities, cooking, baking, and enjoying family time.
Somehow, I managed to do all that and get through the holidays with the help of my family, but it wasn’t easy.
Ordering a powerchair
I saw my neurologist after the holidays and told him of my ongoing issues with my eye and inability to be up and around. After his exam, we talked about a powerchair.
I’d put that notion out of my mind for years. But my body was to the point that I needed some kind of help to resume my regular activity. I couldn’t do much, nor enjoy having my family (especially the grandchildren), around much anymore.
As a result of that visit, I was measured for the powerchair and he ordered it for me. Now for my eye, the trip to the ophthalmologist wasn’t very beneficial. Everything checked out ok, except for the myasthenia and he sent me home.
At my next visit to the neurologist, again I told him I needed something done so I could use my eye. The longer this was taking, the more depressed and frustrated I became. I needed both eyes in order to work effectively.
This time, we talked about doing an intravenous immunoglobulin (IVIG). He told me I’d have to have a peripherally inserted central catheter (PICC) put in and it would be in for several months.
That nearly destroyed me! I had a pool and loved swimming for fun and exercise. With a PICC in, how could I swim? We had chosen that house because of the pool. He finally said I could have the PICC removed once the medication was all infused.
Waiting for the first round
The procedure was scheduled. I went to the hospital for the insertion of the PICC. The nurse tried 1 arm without success, then tried the other. Every time she stuck me, it hurt like crazy.
She finally got the catheter in and placed it where it needed to be. Now I get to go home and wait for Monday to come to receive the first round of IVIG. That sounds like loads of fun.
Have you made any MG-friendly adaptations to your home?