I find myself working really hard at playing the roll of who I used to be. I enjoyed entertaining, always had family or friends around. Since both Guilain-Barre Syndrome (GBS) and Chiari 1 are fairly invisible, I was often greeted with "you look great, you must be feeling good." It's a real conversation stopper to reply "No, actually, I'm going to have brain surgery and I barely have enough energy to stand here and talk with you." I think it makes me feel a little better to know I am not worrying those who matter to me. But I'm realizing it takes a lot of energy to pretend to be the same energetic person I used to be.
Three years ago my father was diagnosed with inoperable cancer and was gone in 6 months. He was in a tremendous amount of pain but always tried to great his visitors with his typical smile and good conversation. One of the first times he asked not to have any visitors his home care provider explained something to us. She said it takes a lot of energy to sit up or stand and carry on a conversation when you are dealing with pain. She told my father that he needed to know when to tell people that he just wasn't up for company. I get that now.
Granted, I am no where near the point my father was, but I often find myself feeling totally exhausted once we have been out or have hosted some guests. It takes much longer to regain that strength than it did to loose it.
There is, however, something to be said for forcing yourself into social settings. Some days it would be so much easier to shut everyone and everything out. But then I would loose a precious day. Being around people we love and who love us is very therapeutic. It's the pretending that drains us.
Saturday, October 4, 2008
Friday, October 3, 2008
Back to the beginning
Okay, here's my first attempt at blogging. My adult children can't hardly believe I use an I-Pod, they are going to freak when they find out I've started a blog. I guess Grandma's aren't what they used to be.
My new life started 4 years ago, almost to this date. I sure didn't think I'd be where I am now.
My hope is that someone who is living with the same or similar issues will come here and realize they aren't alone.
4 years ago in October I was preparing for a typical day at school. I teach Physical Edu. in a small parochial school. I commented to my husband before leaving for school that I felt like I had just drank a few glasses of wine. Just before my noon hour at school I realized my balance was off. Not wanting a gym full of Jr. High students to get the best of me, I took to leaning up against the gym wall as I officiated a volley ball game. When class was over I decided I'd better head home while I could drive. After several phone calls I was able to get in to see a local Family Practice Dr. I really didn't have a GP since I never went to a Dr.
A brief family history, which includes a sister with MS and mom having Parkinson's Disease and the Dr. was beating on my knee caps trying to get a reflex response. Even I knew something was out of whack. As she continued her physical she informed me my reflexes were all but gone and said "we have to consider MS." I never really worried about it. My sister who is now 58 was diagnosed when she was 12. I've done plenty of reading on MS and knew that I was almost too old for that diagnosis. Imagine "too old" being a good thing.
With in a few days I was in the emergency room of a larger hospital about an hour away. It was the only way I was going to get in to see a Dr. and I needed to be seen by a neurologist. Several tests later the diagnosis was Guillain-Barre Syndrome and I was moved to intensive care.
Guillain-Barre is a very rare neurological illness affecting the peripheral nervous system. It usually begins with rapid onset of weakness or even paralysis in the arms and legs. The insulation covering the nerves (myelin sheath) is damaged. This short circuits the ability of the nerve to conduct a signal. As the illness progresses there is danger of the respiratory failure, heart and other internal organs shutting down. I like to think I had a fairly mild case. I spent 7 days in the hospital and came home to lots of PT...in fact on and off for about 3 years. The worst thing the neurologists at this particular hospital could have told me (which I wouldn't find out until much later) was that "you eventually get over this illness". NOT! So I carried on pretending to be doing well when I felt awful. I'd push myself some days to the point of exhaustion just trying to prove I was "getting over it". My visits back to my GP who was very kind and understanding were pointless. She'd suggest blood work, maybe a few new tests...trying to determine why I just couldn't get back to where I used to be. Teaching became more difficult. I took to teaching by sitting down on the stage in the gym whenever possible. If I stood too long I became exhausted. The second year I went back to teaching I realized I just couldn't continue the pace and I was part time even then. I'd push myself through the year waiting for week-ends, spring breaks and then counting the days for summer vacation so I could recoup. I pulled it off, barely. After the third year a promised myself I'd spend the summer finding a better hospital and specialists.
This led us to the University of Wis. Hosp. in Madison, Wis. The trip is about 2 1/2 hours but has proved to be worth it. On my first visit this summer the Neurologist insinuated my issues, which I assumed were GBS residuals, were not peripheral, but connected to the central nervous system. Fast forward, several trips to Madison and more tests than I care to remember...
Sitting in my neurologist examining room on about the 4th visit he had the cumulative results of the tests. His first comment was that he didn't think my symptoms were related to the GBS although they were very similar. He brought up one of my MRI's on his computer and proceeded to show me what they 'hadn't' found, then we get the big "however..." I have a new title for my constant fatigue, upper back pain, muscle weakness and too many other symptoms to mention right now. Again, something a bit rare and unusual, I have a Chiari 1 Malformation.
And my NL wanted me to see a Neurosurgeon.
All I could think was, wait a minute...up until 4 years ago I didn't even have a GP!
Chiari 1 is when the cerebellum (back part of the brain) extends down into the spinal canal. Basically, the brain is too large for the area holding it. As the cerebellum is pushed down into the spinal column it prevents cerebral spinal fluid from flowing properly into the brain. The surgeon recommended more specific MRI's and determined I was a candidate for Posterior Fossa Decompression surgery. Not so sure that didn't scare me more or when he brought it down to lay terms and said it was brain surgery. Since the goal of the surgery is to create more room for the brain stem, they will remove a piece of the skull and possibly some small vertebrae in the upper part of the neck.
So there you have it. I have stepped back from teaching until recovery and having been used to a very busy life I find myself doing lots of surfing on line to try and grasp what is going on. My surgery is scheduled for Nov. 7 and now that I have resigned myself to the fact that it is going to be done, it can't come soon enough.
I've found some wonderful chat sites for both GBS and Chiari and have learned more from people who suffer these invisible illnesses than I have from my Doctors. I've learned we must all be our own advocate or at least have someone to be there for you. It's so important to follow your intuition and not to accept that what you are dealing with is fate and can't be changed.
I realize some things will never be the same, but there are some things we can change. We can become stronger with change in our lives whether it is good or bad. We only go around once and it's important to realize what counts in our lives. Faith, family and friends.
My new life started 4 years ago, almost to this date. I sure didn't think I'd be where I am now.
My hope is that someone who is living with the same or similar issues will come here and realize they aren't alone.
4 years ago in October I was preparing for a typical day at school. I teach Physical Edu. in a small parochial school. I commented to my husband before leaving for school that I felt like I had just drank a few glasses of wine. Just before my noon hour at school I realized my balance was off. Not wanting a gym full of Jr. High students to get the best of me, I took to leaning up against the gym wall as I officiated a volley ball game. When class was over I decided I'd better head home while I could drive. After several phone calls I was able to get in to see a local Family Practice Dr. I really didn't have a GP since I never went to a Dr.
A brief family history, which includes a sister with MS and mom having Parkinson's Disease and the Dr. was beating on my knee caps trying to get a reflex response. Even I knew something was out of whack. As she continued her physical she informed me my reflexes were all but gone and said "we have to consider MS." I never really worried about it. My sister who is now 58 was diagnosed when she was 12. I've done plenty of reading on MS and knew that I was almost too old for that diagnosis. Imagine "too old" being a good thing.
With in a few days I was in the emergency room of a larger hospital about an hour away. It was the only way I was going to get in to see a Dr. and I needed to be seen by a neurologist. Several tests later the diagnosis was Guillain-Barre Syndrome and I was moved to intensive care.
Guillain-Barre is a very rare neurological illness affecting the peripheral nervous system. It usually begins with rapid onset of weakness or even paralysis in the arms and legs. The insulation covering the nerves (myelin sheath) is damaged. This short circuits the ability of the nerve to conduct a signal. As the illness progresses there is danger of the respiratory failure, heart and other internal organs shutting down. I like to think I had a fairly mild case. I spent 7 days in the hospital and came home to lots of PT...in fact on and off for about 3 years. The worst thing the neurologists at this particular hospital could have told me (which I wouldn't find out until much later) was that "you eventually get over this illness". NOT! So I carried on pretending to be doing well when I felt awful. I'd push myself some days to the point of exhaustion just trying to prove I was "getting over it". My visits back to my GP who was very kind and understanding were pointless. She'd suggest blood work, maybe a few new tests...trying to determine why I just couldn't get back to where I used to be. Teaching became more difficult. I took to teaching by sitting down on the stage in the gym whenever possible. If I stood too long I became exhausted. The second year I went back to teaching I realized I just couldn't continue the pace and I was part time even then. I'd push myself through the year waiting for week-ends, spring breaks and then counting the days for summer vacation so I could recoup. I pulled it off, barely. After the third year a promised myself I'd spend the summer finding a better hospital and specialists.
This led us to the University of Wis. Hosp. in Madison, Wis. The trip is about 2 1/2 hours but has proved to be worth it. On my first visit this summer the Neurologist insinuated my issues, which I assumed were GBS residuals, were not peripheral, but connected to the central nervous system. Fast forward, several trips to Madison and more tests than I care to remember...
Sitting in my neurologist examining room on about the 4th visit he had the cumulative results of the tests. His first comment was that he didn't think my symptoms were related to the GBS although they were very similar. He brought up one of my MRI's on his computer and proceeded to show me what they 'hadn't' found, then we get the big "however..." I have a new title for my constant fatigue, upper back pain, muscle weakness and too many other symptoms to mention right now. Again, something a bit rare and unusual, I have a Chiari 1 Malformation.
And my NL wanted me to see a Neurosurgeon.
All I could think was, wait a minute...up until 4 years ago I didn't even have a GP!
Chiari 1 is when the cerebellum (back part of the brain) extends down into the spinal canal. Basically, the brain is too large for the area holding it. As the cerebellum is pushed down into the spinal column it prevents cerebral spinal fluid from flowing properly into the brain. The surgeon recommended more specific MRI's and determined I was a candidate for Posterior Fossa Decompression surgery. Not so sure that didn't scare me more or when he brought it down to lay terms and said it was brain surgery. Since the goal of the surgery is to create more room for the brain stem, they will remove a piece of the skull and possibly some small vertebrae in the upper part of the neck.
So there you have it. I have stepped back from teaching until recovery and having been used to a very busy life I find myself doing lots of surfing on line to try and grasp what is going on. My surgery is scheduled for Nov. 7 and now that I have resigned myself to the fact that it is going to be done, it can't come soon enough.
I've found some wonderful chat sites for both GBS and Chiari and have learned more from people who suffer these invisible illnesses than I have from my Doctors. I've learned we must all be our own advocate or at least have someone to be there for you. It's so important to follow your intuition and not to accept that what you are dealing with is fate and can't be changed.
I realize some things will never be the same, but there are some things we can change. We can become stronger with change in our lives whether it is good or bad. We only go around once and it's important to realize what counts in our lives. Faith, family and friends.
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