Part I of my story - Being diagnosed
The blog I have been putting off. Part of me is excited to get my story out there and the other part is afraid. So I am sucking it up and blogging it for the whole wide world. Oh boy! Here goes.
So I've shared with you all some big things in my life but what I haven't shared is what I have been fighting.
I have Kearn Sayers Syndrome. It's beyond me to write down what KSS is. If you want I can tell you what I really think of it but not over this blog. Just kidding. It's been a challenge but in the long run my life has been blessed as I worked through my trials.
How I came to find out I had KSS was when I started noticing a droopiness in my left eye. (I had to pause and blink to figure out which was my left and which was my other left) Any way... I was about eleven years old. Entering into middle school. Feeling self conscious about my appearance. I hated going to parties or being around little kids or strangers who would point at me and ask, "what's the matter with your eye?" or "why do you look like that?" Choking back the tears and trying to ignore only made things worse.
I went to the doctor when we first moved here and not only did we try to find a reason why my eye might be droopy the doctor also found a heart murmur. Definition I do know, sounds something like this: Swish, swash swish whoosh?. Even to this day I am going to Sacred Heart's clinic here in town for EKGs and echos twice a year.
Blood tests were needed to be done to see if I was having an allergic reaction to something. I hate needles and the tests made me afraid to the point where I wouldn't sleep for weeks before the tests even happened. Just the thought put me into a ball where I would start shivering let alone the actual day it did happen.
Yes, the tests came back with information but nothing that matched the cause of my lack of energy and tired eye. I went to Spokane for a MRI which not only included an IV (the worse kind of needle) but also the results made the doctors there think I had ms, or a tumor in my brain. Let me just say that we decided to go another route.
I went to Seattle to be seen by the doctor who took care of Jenny when she was alive. He thought I could have KSS. He sent me to a doctor who sent me to another doctor who recommended a doctor at Children's Hospital. Sound like a guinea pig?
So I wound up at Children's and was told a muscle biopsy would tell us or not if I have KSS. Great! Surgery. Just what I wanted.
I came home and remembered I had a heart appointment here in town. With the surgery coming up we thought of canceling the appointment but God was obviously whispering in our ear to keep the appointment.
Mom and I went and though always irritated and humiliated at the process of having an ultra sound on my heart. On that particular appointment the ultra sound technician found that two of my three heart conductors weren't working. So that pretty much means I was one count em' one conductor away from not being here. A pacemaker was needed to be put in pronto.
I watched everyone around me talk about the situation and just remembering being in that dark room makes me dizzy. I cried and cried. Pacemakers weren't for 13 year old girls.
Surgery day came around and I was out like a light at anesthesia percentage 1/2 percent. Ahem. 1/2 percent! Most people black out at 8%!
What you're no longer allowed to do when you get a pace maker: Jump on tramps. (Mom already made that a rule.) Ride mad roller coasters. Swim in a dam. Go through air port security. Let me tell ya'll something though, when I turn 18. That trampoline is MINE! I might have to bend the law since I've been deprived of swimming in dams and I forgot going to hard core metallic rock concerts.
...sorry I get side tracked.
Two months later the biopsy report came back and resulted that I have KSS. Which is a progressive degenerative mitochondria muscle disorder. I have no idea what I just said. KSS effects the whole body, lowers energy and in my case also effects my eyes.
All that ran through my mind and our my mouth was "Why me?" I cried and cried and cried and cried some more until I took a breath and then kept crying.
I felt like my life was ending, the world was against me. There was no cure, never going to be a cure. All these negative words kept filling my body with anger and hurt. It didn't help either that I was struggling with school and going through that stage of feeling like I had no friends.
Read my next post for a continuing story.
So I've shared with you all some big things in my life but what I haven't shared is what I have been fighting.
I have Kearn Sayers Syndrome. It's beyond me to write down what KSS is. If you want I can tell you what I really think of it but not over this blog. Just kidding. It's been a challenge but in the long run my life has been blessed as I worked through my trials.
How I came to find out I had KSS was when I started noticing a droopiness in my left eye. (I had to pause and blink to figure out which was my left and which was my other left) Any way... I was about eleven years old. Entering into middle school. Feeling self conscious about my appearance. I hated going to parties or being around little kids or strangers who would point at me and ask, "what's the matter with your eye?" or "why do you look like that?" Choking back the tears and trying to ignore only made things worse.
I went to the doctor when we first moved here and not only did we try to find a reason why my eye might be droopy the doctor also found a heart murmur. Definition I do know, sounds something like this: Swish, swash swish whoosh?. Even to this day I am going to Sacred Heart's clinic here in town for EKGs and echos twice a year.
Blood tests were needed to be done to see if I was having an allergic reaction to something. I hate needles and the tests made me afraid to the point where I wouldn't sleep for weeks before the tests even happened. Just the thought put me into a ball where I would start shivering let alone the actual day it did happen.
Yes, the tests came back with information but nothing that matched the cause of my lack of energy and tired eye. I went to Spokane for a MRI which not only included an IV (the worse kind of needle) but also the results made the doctors there think I had ms, or a tumor in my brain. Let me just say that we decided to go another route.
I went to Seattle to be seen by the doctor who took care of Jenny when she was alive. He thought I could have KSS. He sent me to a doctor who sent me to another doctor who recommended a doctor at Children's Hospital. Sound like a guinea pig?
I came home and remembered I had a heart appointment here in town. With the surgery coming up we thought of canceling the appointment but God was obviously whispering in our ear to keep the appointment.
Mom and I went and though always irritated and humiliated at the process of having an ultra sound on my heart. On that particular appointment the ultra sound technician found that two of my three heart conductors weren't working. So that pretty much means I was one count em' one conductor away from not being here. A pacemaker was needed to be put in pronto.
I watched everyone around me talk about the situation and just remembering being in that dark room makes me dizzy. I cried and cried. Pacemakers weren't for 13 year old girls.
Surgery day came around and I was out like a light at anesthesia percentage 1/2 percent. Ahem. 1/2 percent! Most people black out at 8%!
What you're no longer allowed to do when you get a pace maker: Jump on tramps. (Mom already made that a rule.) Ride mad roller coasters. Swim in a dam. Go through air port security. Let me tell ya'll something though, when I turn 18. That trampoline is MINE! I might have to bend the law since I've been deprived of swimming in dams and I forgot going to hard core metallic rock concerts.
...sorry I get side tracked.
Two months later the biopsy report came back and resulted that I have KSS. Which is a progressive degenerative mitochondria muscle disorder. I have no idea what I just said. KSS effects the whole body, lowers energy and in my case also effects my eyes.
All that ran through my mind and our my mouth was "Why me?" I cried and cried and cried and cried some more until I took a breath and then kept crying.
I felt like my life was ending, the world was against me. There was no cure, never going to be a cure. All these negative words kept filling my body with anger and hurt. It didn't help either that I was struggling with school and going through that stage of feeling like I had no friends.
Read my next post for a continuing story.
Oh my dear Gabbie! You have such talent! I have been reading your blogs, WOW! You are going to inspire so many people! Me, for one!! I look forward to reading more of your story! You have made me laugh, and you have made me cry!!! Love you~
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