Having had MG for about 40 years now, I thought I had pretty much kept it at bay and was in control. I can now say that that is not the case. It hit like a ton of bricks. I was so week I had to sit after crossing the room. I was physically exhausted all the time. I tried to extra rest and stress reducing I had used in the past and instead of improving I was getting even weaker. & days of this rest and I called my doctor. I was given an appointment for 7 days later. I felt like crying most of the time. Tired , muscle spasms and just scared. I had been told once that it is possible to have and onset and never recover to where you were before. What would I do, if that was the case.
The doctor prescribed Prendisone, day 1, I felt amazing. Like I was 20. I wanted to cry I was so happy. Energy, strength and an over all feeling of health. I made an appointment with a new neurologist in Madison for May 1st. Hopefully a change in meds or new med addition can keep this feeling going.
Not feeling well and helpless is torture for me. I have 11 grandkids and 8 Great grandkids and 3 more on the way. I cringe at the thought of not being physically able to hold then or carry them. I still want to play cars on the floor and blow bubbles in the yard. I am not going down without a fight.
STRESS is my number 1 problem....kids, money, illness, aging family members. Life hits me hard. But this scare has made me take a good look at how I react and try to handle things for me and everyone else.....I am a control freak.....so my new motto is
Sunday, April 9, 2017
Hello, let me catch you up on my life before this wake up call.
I was born back in 1955, back when Mickey Mouse Club had Annette and Saturday morning cartoon were our entertainment. The Three Stooges were acceptable and Kids played outside.
I was born in Chicago but before school age we moved to the suburbs. Life was good, oh, and I was adopted. Not a big deal back then. I had siblings, parents and a Grandmother who lived with us. We had a pool, took vacations and I thought we had it made. The teens years got tense , I found a high school sweetheart and I married at 16. "SHUDDERING" I now wish my kids had been that mature. was it mature of stubborn, they seem to run together when I think back. Life could begin!
Life did begin and quickly, the first baby coming just 8 months after we married. Followed by 2 more with in the next couple years. We rented apartments, found fast food and got by. Three years later along came one more , quickly followed by number five. I was happy.
Now by happy I don't mean I did not have a meddling Mother in Law, crazy Father in law or tragedy.
While pregnant with baby #3 my Dad died, earth shattering. The most kind , wonderful man on Earth and gone at 38. Who would always make everything seem ok, an adventure or a learning experience. A few months later I began to have muscle weakness, double vision and fatigue. Doctors, even after tests said REST, you have 3 kids. So that is what I did.
I slept more, watched for over use of muscles and stopped doing alot of things. Conserve energy was my motto. I missed playing at the park, long walks by the waterfall in Joliet and much more.
My kids grew and life was still pretty good, husband 5 healthy kids. I could not complain, but should have.
Now comes along my first Grandson, my pride and joy. A big healthy, cuddly blonde boy....and the weakness gets worse. Will I be able to carry him,, get to see him grow? All these questions were finally answered by the MDA clinic in Tulsa. I was one of Jerrys kids.
It turns out that I have Myasthenia Gravis, a neuromuscular disease. It has no cure, very little can be done to change it and it is always present.
I had to quit work as I am never sure what the day will bring. I was a cashier at a craft store and had days when I could not lift the bag to hand it to a customer. Stress is my #1 trigger.
So, I retired, we moved to Wisconsin, my favorite childhood vacation spot and life continued.
More grandkids came along and I lost more than a few of the most important people in my life.
Yet we keep putting one foot in front of the other. Then came Great Grandkids. Life is WONDERFUL and then!
Our 45th Wedding Anniversary
A week of stress from all sides and I cannot even dress myself. The MG is showing its ugly head again and I am terrified.
Having had MG for about 40 years now, I thought I had pretty much kept it at bay and was in control. I can now say that that is not the case...