Well today is my birthday and this is my gift to myself. Happy Birthday!
It all started about one year ago while training for a marathon. I had just finshed the Ottawa full marathon in May and now was traing for the Army Run, which is a half marathon. This would be my third time running the Army Run.
I started having problems like falling off the sidewalk, muscle cramps, muscle fatigue , bladder issues, blood pressure dropping (even though I had high blood pressure for the last 22 years). It seemed that even though I was training, my time was not getting better.
I had gone to see the doctor many times, but we both thought it was all the training and my body was lettting me know I was overdoing it. It was not until I fell while holding neighbors baby (and landed safely sitting down) that I thought that I will have to see what is really happening.
So, I went back to my doctor and suggested that instead of looking at this symptom by symptom, we should look at it like one big picture... this is where the fun began. You see, I had been noticing other problems and thinking it would get better. I was having trouble brushing my teeth, my typing was getting worse, in fact I was ayways doing typing tests and praticing when no one was looking. My hand writing was terrible, I would print off the writing excercises we usually give to our children in second grade to improve their penmanship. One of my collegues was always saying to speak up and that I sounded like I was mumbling.
When ever I would mention these things to people, rightfuly so, they would dismiss them. I was an athlete, after all. One who ate right, excercised and lived a healthy lifestyle, and people who take care of themselves like that do not get seriously sick.
My doctor sent me to see a neurologist at the end of September. I did not realize how much this was bothering me until I heard her words, " I don't know what is wrong, but there is definitely something and I believe you". The doctor then said that she would like me to see two of her collegues. One is a Myasthenia Gravis specialist and the other deals with Movement Disorders. This is when I began to have a melt down...
I had gone on the bus there by myself, so I knew I had to gain my composure to get home, which was 45 minute bus ride. I had not mentioned to my children or my siblings that I was going to the doctor because I did not to worry anyone.
My children had a beautiful 25th Anniversary surprise party for us at our house on October 2nd, 2010. They invited our family who ived in the area and some close friends. There was a lot of effort put into the evening, it was evident. When the children gave their speech and said how they treasured the time we have spent showing them how to love someone, it broke my heart. I knew I had to keep it together and not think of my upcoiming appointments and what the future may hold.
I went to see these two different neurologists. First I went to see the Movement Disorder Specialist. It was October 22, 2010. I went there alone, again, and on the bus, because I really thought, what could he have to say? I was expecting him to say they were going to do some more tests.
When I first arrived I saw the understudy to my current doctor. This understudy did a series of tests which involved history, and the movement tests and reflexes. After the examination, he then reported to my current doctor. A few moments later he came back along with, 'He Who Shall No Be Named', my current doctor. Then the two of them started the tests all over again.
When they were finished, they asked me if my husband was with me, to which I responded that I was there alone. They looked at each other and then told me I have Multiple System Atrophy, I knew by the sound, anything with the word atrophy in it can not be good. Needless to say, I started crying.
I was then given some websites, and text about Multiple System Atrophy (MSA) and told to go home and read and find out what it is all about and then come back in a month. I left there just numb.
I definitely had the, "Fight or Flight" response and my instints were saying to activate the flight. But where would I go and what would I do? There is no place to hide where MSA cannot find me.
I got on the bus and headed home. My husband called and then I broke down as soon as I heard his voice. He said he would come and get me, to get off the bus and wait for him to come. He picked me up and we went home. Of course I was so upset I cried for hours. All our dreams and plans changed right at that moment.
The next day, I went to see the neurologist that deals with Myasthenia Gravis, for more testing. There symptoms that MSA and MG have in common, so, I started treatmet for MG. For awhile, I was being treated for both MG and MSA.
Finally, they discovered I have only a mild case of MG and my symptoms were more MSA-C which means cerebellar.
Now I had the challenge of telling my children and siblings of my fate!
(to be continued....)
Brenda our stories are so alike and reading yours, told with such gripping honesty, I relived those moments of dread - those moments when you realise this is happening to you, the athlete, the healthy one.
ReplyDeleteBrenda well done for sharing from your heart. This is a brave bold step and one that you will enjoy, I promise. Keep blogging - the good and the bad and your spirit will be lifted. Take care.
ReplyDeleteThank you for reading Sonja, especially knowing how tough it is. It brought it all back for me as well. The hurting never stops!
ReplyDeleteThank you for your support Karin. Even though it is tough I will keep on posting.
ReplyDeleteThank you for sharing your private thoughts Brenda. It is really interesting and her me understand what you are going through. I hope it helps you too. I know that writing is very therapeutical for me. I thought you were the strongest woman I knew and admired you so much - now I do so still, but tenfold! You're amazing!
ReplyDeleteThanks for sharing all those private thoughts Brenda. I cannot imagine what you are going through, but reading this helps me understand. I hope writing helps you too. I know it is very therapeutical for me. I always thought you were the strongest woman I ever met and admired you so much - now I still do, but tenfold! You're amazing!
ReplyDeleteBrenda,
ReplyDeleteSome of your posts sound so much like what my wife went through. I have read the posts and can definitely empathize with what you are going through. My wife passed away from in May of this year. She was diagnosed with MSA in early 2007 after well over a year of multiple doctors and hospitals trying to find out what is wrong.
I tried to chronicle our journey at:
www.livingwithasnowman.blogspot.com
I wish you well.
Scott Poole