My Condition
(If you haven't read, "What's next." just before this post; please do so. Please and Thank You.)
In simple words, I was told, a disease is something you get. Like Mom's M.S. A condition on the other hand is something you have. Often, something you were born with.
I was born with Wyburn Mason Syndrome. Or, more commonly just called Arterial Venous Malformation. Or A.V.M. Which means there is a cluster of extra blood veins/vessels that are tangled in a big knot, like yarn that has been played with by a cat, and they baloon in my head. They baloon because the blood flow goes to my head but isn't able to return to my heart as fast as it arrived. So, as it pumps into my head, the pressure builds. A lot of these vessels are very tiny and this knot of vessels is rather large and deep in the center of my head. In 1978 I had an aneurysm in my head. I was born in 1945. Which means 33 years of knowing something wasn't right, but, like Mom, being told they couldn't find anything wrong.
I was too young to even remember the first symptoms. But they scared my Mother, who as the trained nurse, knew they shouldn't happen. When I was calm and quiet, all was well. But, when I ran or played hard, I would suddenly pass out. Strong emotion could also lead to brief periods of wobblyness. Once while playing outside, I wobbled and took a bad tumble down the basement stairs. The kind of stairs that open to the outside of the house by two swing apart doors parallel to the ground. The ones that were always open when Mom was doing laundry in the cellar and hanging it outside. That tumble left me with a crooked tooth that I still have. Which is one of the reasons I've been told about it. It took me long enough to regain consciousness, to give Mom a real scare. Mom told me I was unconscious much to often as a small child, and she knew something was wrong, but the Doctors couldn't find anything.
Eventually, perhaps in self preservation, I instinctively learned to avoid passing out by stopping what I was doing as soon as "that feeling" was noticed. Still young, and without being fully aware of it, I learned that when I felt "the feeling", I would be ok if I gave it a little bit of time before continuing, and if I proceeded slower and gentler. Thus, I was able to avoid actually passing out.
As the years passed, Dad didn't connect my "lazyness" to those earlier episodes. Mom was always more compassionate and understanding. Dad would get very upset with me if I wasn't doing enough fast enough. I would especially run into problems where lifting or moving something heavy was involved. And, that includes a lot of chores on a farm. When I felt that pressure, or things would go out of focus or I'd feel dizzy or weak, I just wouldn't be able to push through it. The odd part was that it might only take a couple of minutes or it could take 15 minutes or so after I stopped to feel fine again. When it was over, it was totally over. No left over sensations to let me know it had been real. I began to doubt my own sanity....or at least my own "quality of character." Sometimes I wondered if I really was lazily avoiding work. Except that this was also interfering with my fun. I could never run as far as I wanted. Or tumble as long, or skate as long. There always had to be those stupid breaks, when everyone else was still going strong. Maybe that's why I loved the Indian leg wrestling. One quick action and then rest awhile. And, riding Gypsy never caused me pain either.
Oh, I haven't mentioned the pain. Of course, back then I didn't know about the pain. I had no way of knowing that everyone didn't feel the same thing I did. I'd lived with it every day of my life. Now, I just have to jump ahead again and tell you how I discovered the pain. This happened several months after I finally had my diagnosis. I could no longer work full time, but staying home waiting to die just wasn't acceptable either. (They told me after the aneurysm, that it was just the first one and there would be more and I probably wouldn't live a year.) ((That was a bad year.)) Anyway, I was working part time with a vending machine company. While cleaning the inside of a machine at the Hospital, (a good place to have a part time job in my condition.) I touched a bare wire with a wet wash cloth. It knocked me out cold. I don't even remember falling. I came to slowly in the Emergency Room. Confused and not knowing what had happened, the first thing I did realize was that I couldn't feel my head. I panicked. I very much remember yelling, "Where's my head. I can't feel my head." I kept yelling and trying to get my hands up to feel my head. Try to imagine the Nurse who had been checking my heart and suddenly I'm yelling about my head and thrashing around. All she knows is I've had an electrical shock. Why am I yelling about my head. It's my heart she's been worried about. This woman is practically laying across me to keep me from falling off the exam table and I'm trying to get my hands up to my head and still yelling that I can't feel my head. She has shouted for help with the crazy woman and then she yells at me, "You are using your mouth, so your head must be right where it belongs. Now, settle down!" That sank in. She was right. But, what an odd sensation, I'd always felt my head before. As I calmed down, I realized there was a stinging, tingle, creepyness sensation that was very uncomfortable all over my body. And, there was that achyness/pressure in my heart area that should have been in my head. I did not like this new feeling at all. I was in the Emergency Room quite awhile. By the time that stinging tingle had gone, the headache was back. So, don't suggest shock treatments to me. The headache I can live with; the stingtingle I'm not so sure of.
I've mentioned that my family yelled a lot. We never threw things at each other or hit or slapped. But, I did grow up yelling. And, that is one of the things that makes my head hurt worse. And, one of the hardest things to control when I'm angry. And, if I don't yell, I tense up and that is just as bad. A changing barometer and the corresponding weather always makes the pain bad. Almost unbearable at times. Heavy lifting, pushing and pulling all cause extra pain and "that feeling." The feeling that reminds me I'm living with a time bomb in my head. And, I've already way outlived the time they gave me. In other words, my pain is a pain. I don't look sick, I probably do look lazy to anyone who doesn't know my story. I can be working along, and sometimes just have to stop and sit, before I can go on as if nothing had happened. Still, living with this now is so much easier than it was when I didn't know what was wrong. And, I didn't know what was wrong till one of those little blood vessels exploded in my head when I was 33. I'll talk about that in my next post.
In simple words, I was told, a disease is something you get. Like Mom's M.S. A condition on the other hand is something you have. Often, something you were born with.
I was born with Wyburn Mason Syndrome. Or, more commonly just called Arterial Venous Malformation. Or A.V.M. Which means there is a cluster of extra blood veins/vessels that are tangled in a big knot, like yarn that has been played with by a cat, and they baloon in my head. They baloon because the blood flow goes to my head but isn't able to return to my heart as fast as it arrived. So, as it pumps into my head, the pressure builds. A lot of these vessels are very tiny and this knot of vessels is rather large and deep in the center of my head. In 1978 I had an aneurysm in my head. I was born in 1945. Which means 33 years of knowing something wasn't right, but, like Mom, being told they couldn't find anything wrong.
I was too young to even remember the first symptoms. But they scared my Mother, who as the trained nurse, knew they shouldn't happen. When I was calm and quiet, all was well. But, when I ran or played hard, I would suddenly pass out. Strong emotion could also lead to brief periods of wobblyness. Once while playing outside, I wobbled and took a bad tumble down the basement stairs. The kind of stairs that open to the outside of the house by two swing apart doors parallel to the ground. The ones that were always open when Mom was doing laundry in the cellar and hanging it outside. That tumble left me with a crooked tooth that I still have. Which is one of the reasons I've been told about it. It took me long enough to regain consciousness, to give Mom a real scare. Mom told me I was unconscious much to often as a small child, and she knew something was wrong, but the Doctors couldn't find anything.
Eventually, perhaps in self preservation, I instinctively learned to avoid passing out by stopping what I was doing as soon as "that feeling" was noticed. Still young, and without being fully aware of it, I learned that when I felt "the feeling", I would be ok if I gave it a little bit of time before continuing, and if I proceeded slower and gentler. Thus, I was able to avoid actually passing out.
As the years passed, Dad didn't connect my "lazyness" to those earlier episodes. Mom was always more compassionate and understanding. Dad would get very upset with me if I wasn't doing enough fast enough. I would especially run into problems where lifting or moving something heavy was involved. And, that includes a lot of chores on a farm. When I felt that pressure, or things would go out of focus or I'd feel dizzy or weak, I just wouldn't be able to push through it. The odd part was that it might only take a couple of minutes or it could take 15 minutes or so after I stopped to feel fine again. When it was over, it was totally over. No left over sensations to let me know it had been real. I began to doubt my own sanity....or at least my own "quality of character." Sometimes I wondered if I really was lazily avoiding work. Except that this was also interfering with my fun. I could never run as far as I wanted. Or tumble as long, or skate as long. There always had to be those stupid breaks, when everyone else was still going strong. Maybe that's why I loved the Indian leg wrestling. One quick action and then rest awhile. And, riding Gypsy never caused me pain either.
Oh, I haven't mentioned the pain. Of course, back then I didn't know about the pain. I had no way of knowing that everyone didn't feel the same thing I did. I'd lived with it every day of my life. Now, I just have to jump ahead again and tell you how I discovered the pain. This happened several months after I finally had my diagnosis. I could no longer work full time, but staying home waiting to die just wasn't acceptable either. (They told me after the aneurysm, that it was just the first one and there would be more and I probably wouldn't live a year.) ((That was a bad year.)) Anyway, I was working part time with a vending machine company. While cleaning the inside of a machine at the Hospital, (a good place to have a part time job in my condition.) I touched a bare wire with a wet wash cloth. It knocked me out cold. I don't even remember falling. I came to slowly in the Emergency Room. Confused and not knowing what had happened, the first thing I did realize was that I couldn't feel my head. I panicked. I very much remember yelling, "Where's my head. I can't feel my head." I kept yelling and trying to get my hands up to feel my head. Try to imagine the Nurse who had been checking my heart and suddenly I'm yelling about my head and thrashing around. All she knows is I've had an electrical shock. Why am I yelling about my head. It's my heart she's been worried about. This woman is practically laying across me to keep me from falling off the exam table and I'm trying to get my hands up to my head and still yelling that I can't feel my head. She has shouted for help with the crazy woman and then she yells at me, "You are using your mouth, so your head must be right where it belongs. Now, settle down!" That sank in. She was right. But, what an odd sensation, I'd always felt my head before. As I calmed down, I realized there was a stinging, tingle, creepyness sensation that was very uncomfortable all over my body. And, there was that achyness/pressure in my heart area that should have been in my head. I did not like this new feeling at all. I was in the Emergency Room quite awhile. By the time that stinging tingle had gone, the headache was back. So, don't suggest shock treatments to me. The headache I can live with; the stingtingle I'm not so sure of.
I've mentioned that my family yelled a lot. We never threw things at each other or hit or slapped. But, I did grow up yelling. And, that is one of the things that makes my head hurt worse. And, one of the hardest things to control when I'm angry. And, if I don't yell, I tense up and that is just as bad. A changing barometer and the corresponding weather always makes the pain bad. Almost unbearable at times. Heavy lifting, pushing and pulling all cause extra pain and "that feeling." The feeling that reminds me I'm living with a time bomb in my head. And, I've already way outlived the time they gave me. In other words, my pain is a pain. I don't look sick, I probably do look lazy to anyone who doesn't know my story. I can be working along, and sometimes just have to stop and sit, before I can go on as if nothing had happened. Still, living with this now is so much easier than it was when I didn't know what was wrong. And, I didn't know what was wrong till one of those little blood vessels exploded in my head when I was 33. I'll talk about that in my next post.
posted by LeeAnn | 4:32 PM
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