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Okay,so I promised myself,I would never write something this personal on my blog.I like to keep my personal stuff away from public view.That's just me. However, I had been asked a couple times to share my story about scoliosis,so I am going to do it now,before I talk myself out of it.:-)
On Sunday night, I was looking for a safe place to share my story.So I wandered over to Above the Curve Nail Polish's facebook page,and found a thread where people were sharing their stories. I posted a very short version of my ordeal with scoliosis.
On that note,please,make yourself comfortable,pull up a chair,or come back and read this when you have the time.
Sit tight,make yourself some tea,or beverage of your choice and get ready for the long version.
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Officially,Scoliosis Awareness day is not until Saturday the 29th.
The color of scoliosis awareness is green,a nail polish color that have grown to love since I have been blogging about nails!
Scoliosis is a medical word for "curvature of the spine, in which the muscles and skeleton cause the spine to curve sideways." It happens most to young women,during the growth spurt just before puberty, but can sometimes occur with young men too. Sometimes it is genetic.Sometimes a person just grows too fast for their spine to catch up with the rest of the body.
I do know that by the time I was nine years old I was much taller than the other children my age.
By the time I turned nine,my parents had already noticed there was something not right about my back. I was told to sit up straight.I couldn't keep my posture,and even a regular trip to the store,would wear me out.I complained always of being tired.
We saw some doctors while we were still living in Spain,and the only treatment for scoliosis there was a back brace. We did try it for awhile.I believe there may be a photo album that has a picture of me wearing the odd contraption.
I never wanted to leave Spain. At that time though, my parents thought it best to go to the States and seek out other medical opinions.
We moved to Virginia,and while we were in Virginia,my father found this team of medical doctors at the University of Health Sciences in Charlottesville,who were working on pioneering research for a treatment/cure for scoliosis. This was 1972. I was unaware that the treatment was experimental. I only know my parents made a choice for me that in the end was a choice that would help me to live a more normal life.
The doctors examined me and determined that my curvature,which was in the form of an S, was so bad,that they said I would be hunch-back by the time I turned 18 years of age. Turning hunchback was probably not the worst of it. The disease progresses beyond that,and there are complications with internal organs,like the heart and lungs.I don't believe that most parents want to see their children pass away before they do.
So the only option we had now,was to go through with a 6 hour surgery, that would involve the fusion of a pin to the top of my spine,and the insertion of a Harrington rod,to hold my spine in place.Since I was still growing,the rod would keep the curvature from becoming worse.
I will tell you some things I experienced during this timeframe, from a 9 or 10 year old point of view.First, I had to see the hospital psychiatrist.The sole point of my seeing him,was so the doctors could determine that I was aware that I might be placing my own life on the line.There was a fifty/fifty chance I would not survive the operation.So we discussed death from a point of however,it was possible to talk about death with a 9 year old. I only knew I had my faith in God,and that I had my mother,father,brother,and all my relatives pulling for me. I honestly believe that God put me on this earth for a reason,and my survival is why I am still here today.
I wore a body cast for about 9 months before the actual operation took place. That was no fun.The cast went all the way up to my chin,and fit too snuggly around my hips.My movement was very limited,as it was intended to help straighten my spine as much as possible before the surgery took place. I had a particularly funny way of describing to my schoolmates,what it felt like to wear a body cast. It was my "turtleshell."
Let's move on to what happened next.During the spring of 1972,I was admitted to the ward where I would stay and wait until it was time for my surgery.I recall it was April,only because there was a clown running around the ward,on April Fools Day, stirring the children's hearts with glee. Later in life,I would look back on that memory with irony.
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I think the thing that scared me the most,was being on my back for such a long time,and especially going from place to place within the hospital with nothing to look at but the florescent lights on the ceiling.
The day came for my surgery. I had anasthesia of course. I remember seeing my parents faces before I was rolled off to the operating room. After that,I was gone for six hours at least. I remember waking up in recovery where I threw up just a little.
The next thing I know,I am up in my hospital bed,sleeping for what seemed like forever. I would drift in and out,and each time,I saw my parents,my favorite uncles Joe and Tom,my favorite aunts too.They were sitting down in chairs at the end of the bed. I felt such a warm feeling of being surrounded by family. I knew they were all there to lend their support.
After three days of sleep,I was finally able to suck on some ice chips.After that it was a liquid diet only for maybe two or three days. I was allowed to eat normal food after that.
You might wonder if I felt pain.No.It was not painful to me. I couldn't actually feel that anything had been done to me,which surprised me immensely,wondering if the deed had actually been done.LOL!
|Orly It's Not Rocket Science|
That's not the end though. Here is where the real work started. The operation was a piece of cake, compared to the physical testing I was about to endure.
Three weeks went by. I was still in bed. It was time to get me up and moving around,even if it was just for a few minutes.
My legs would not bear my weight.
I literally couldn't walk! I still cannot be sure if it was a) I was in bed too long and lost all my strength,b) I had some sort of damage to the nerves in my spine that caused my legs to give out, or c) it was all in my head. Of course I didn't think of these things then,but looking back,I sort of wonder.
My mother told me,"When you want to walk,you will walk." Which was easy for her to say,even if that was her way of encouraging me. Of course,she was the one who believed it was all in my head.I believed it was too.
As the hospital could no longer keep me there,I went from there to the rehabilitation facility where I underwent a little physical therapy, some group activities,and basically endured what I thought was a very difficult situation for me. Of course I wasn't just going to get up and walk out of there,and I believe now,the more I resisted it,the harder it became,to get back on my feet,so to speak.
I was not alone.However,I never felt more alone in my life. There were people there who were there for different things.There were people I played checkers with from the top of my bed.Yes,I wasn't out of the bed yet.Oh! And the cast, still there,yeah! That would accompany me for the next six months after I left the facility.
Somehow,I did manage to walk again.I honestly don't have a clue how I endured it. I got up every day,was led to the area where the bars were,in case I needed to hold myself up. Somehow I did walk again.
What else can I relate to you about this experience? The doctors told me that I could not ever get pregnant,my back would not be able to endure the baby weight.Two, I couldn't gain weight - get fat- which I did by the way. Three,you can't ride horses,and no jumping on trampolines. The idea was that if any of these things took place, the spring mechanism, in my fusion/rod would go askew. Oh,I forgot to mention,no falls.No falling down! Yeah,right!
I have a secret.I rode a horse.I fell off.It was a bad fall,but I am fine. I also jumped on a trampoline.I had lots of fun that day!
I have fallen countless times in my life.I had the angels to bear me up.That's what I believe. And,no, didn't have children,but that was because I didn't want to.