Some people are born with a silver spoon and some people are born poor. Some are light in color, handsome, intelligent and some are dark, not so likable features and there are those golden boys who are obviously the son's of God, tall and handsome, blue eyes, blond hair, athletic and intelligent.
Some people are born healthy and some have physical or mental disabilities, Some even die young.
There's no doubt that life can be tough and sometimes seem downright unfair but God is good. He created us perfect but our great ancestors didn't obey God that we inherited the wrath of the devil, sickness and everything bad.
Yes, I used to be overwhelmed by so many things, how I can provide my only child the things he needs, how can I send him to school, I worry about the house, the this, the that, but my worst enemy is stress. I could die of stress. I have to learn to relax and not dwell on problems. It didn't happen overnight but I got there after many years. I learned to trust God. I always refer to Matthew 6:25-26. Instead be concerned above everything else with the Kingdom of God and with what he requires of you and he will provide you with these other things. So do not worry about tomorrow, it will have enough worries of its own. There is no need to add to the troubles each day brings.
Saturday, September 15, 2012
Symptoms Continue to Get Worse
Another try to get a CT Myelogram from the UC doctors. I have been trying it for about three weeks now, to no avail. I met with two doctors yesterday, first at 9AM with my PCP and then at 1PM with the Spine Clinic, I even asked Kev to join me so that maybe there's more chances that we can convince the doctor to refer us to radiology but it was a fiasco. constipation, loss of control of urination, sexual difficulties, abnormal sweating and the body’s temperature control system going haywire. Even breathing and heart rate can be affected. Also there's the issue of accessibility.
Injuries or diseases affecting the brain may also lead to difficulties with thinking or mental processes and to changes of behaviour; problems with balance; and difficulties with vision, speaking, swallowing and so forth. These issues need to be addressed along with the loss of movement when a person is being treated and is learning to cope with paralysis.I was just really glad and thankful that Kev took the day off and it was nice to have him for another day also.
Last night was the worst though in terms of my pain from walking, it was horrible. It's so hard to describe it, my buttocks feels like it's broken in small pieces like broken glass and my trunk and stomach feels like it wants to separate from my body, like it wants to break away and with unbelievable excruciating pain. The trunk is at the same time so stiff that if it gets twisted even a little bit is so painful!! My arms right now are even hard to lift up and the root of it is sooo painful with deep pain!!!I suspect that I have upper neuron damage since I have pain on the back of my head just on the left side and it feels like it is my brain although I fine it kind of weird because I have more weakness and pain on my left side now as oppose to in the beginning was all on the right. I don't know if it's because of compensating for the weakness on the right that I try to use the left. I don't know anymore.
It is more evident now that I can no longer walk long distances. I'm scared to walk the hallway of the hospital since before my Dad's passing in December but now it is even worse. If I did walk it today, the next day I have to stay in bed.
The loneliness I felt for missing the days when I used to spend hours exercising, toning my arms, doing body sculpting and constantly trying to keep my abs tight have long been forgotten. Every now and then the reminder is a flab that forced me to forget about my size two's and my arms that are now starting to wiggle with me.
At this stage of my ailment, I'm just living it for my son but I'm not having a fun time anymore. Seriously, it's not living anymore, I'm here because I'm not dead yet. I'm sure others would not understand at all. They would say it could be worse but for me the only thing that is worse than not being able to sit up is bedridden. I told my specialist that I prefer to be paralyzed and bedridden now. I know it's not a good thing to say but I'm just too tired. Been too many years of struggle. At least if you're paralyzed you don't have to struggle to walk, you'll use a wheelchair, lol.
Woke up from my tongue quivering last night again. The pain in my buttocks is indescribable, weakness in my legs gets worse everyday. The constant sweating and feeling hot in the back of my head and neck area is uncomfortable and annoying.
I guess I just have to live it day by day and just hope for the best.
Injuries or diseases affecting the brain may also lead to difficulties with thinking or mental processes and to changes of behaviour; problems with balance; and difficulties with vision, speaking, swallowing and so forth. These issues need to be addressed along with the loss of movement when a person is being treated and is learning to cope with paralysis.I was just really glad and thankful that Kev took the day off and it was nice to have him for another day also.
Last night was the worst though in terms of my pain from walking, it was horrible. It's so hard to describe it, my buttocks feels like it's broken in small pieces like broken glass and my trunk and stomach feels like it wants to separate from my body, like it wants to break away and with unbelievable excruciating pain. The trunk is at the same time so stiff that if it gets twisted even a little bit is so painful!! My arms right now are even hard to lift up and the root of it is sooo painful with deep pain!!!I suspect that I have upper neuron damage since I have pain on the back of my head just on the left side and it feels like it is my brain although I fine it kind of weird because I have more weakness and pain on my left side now as oppose to in the beginning was all on the right. I don't know if it's because of compensating for the weakness on the right that I try to use the left. I don't know anymore.
It is more evident now that I can no longer walk long distances. I'm scared to walk the hallway of the hospital since before my Dad's passing in December but now it is even worse. If I did walk it today, the next day I have to stay in bed.
The loneliness I felt for missing the days when I used to spend hours exercising, toning my arms, doing body sculpting and constantly trying to keep my abs tight have long been forgotten. Every now and then the reminder is a flab that forced me to forget about my size two's and my arms that are now starting to wiggle with me.
At this stage of my ailment, I'm just living it for my son but I'm not having a fun time anymore. Seriously, it's not living anymore, I'm here because I'm not dead yet. I'm sure others would not understand at all. They would say it could be worse but for me the only thing that is worse than not being able to sit up is bedridden. I told my specialist that I prefer to be paralyzed and bedridden now. I know it's not a good thing to say but I'm just too tired. Been too many years of struggle. At least if you're paralyzed you don't have to struggle to walk, you'll use a wheelchair, lol.
Woke up from my tongue quivering last night again. The pain in my buttocks is indescribable, weakness in my legs gets worse everyday. The constant sweating and feeling hot in the back of my head and neck area is uncomfortable and annoying.
I guess I just have to live it day by day and just hope for the best.
To People That Don't Know Me
I was diagnosed with Chiari Malformation with Syringomyelia in October 2002 but I continued to do some things that I can still do. Before my diagnosis, my Mom used to try to stop me from working around the house and remind me to rest and that I had done enough already. Neighbors of mine in Santa Rosa used to call me the "go getter". My boss in Rhonert Park used to call me the lady with a "can do" attitude. My ex-husband told his Mom that he felt like he won the lottery because I was a hard worker at work and at home.
I considered myself an intelligent child. I graduated in elementary with honors and same thing in High School, only with a little difficulty. My first year in college was exciting, although my migraine headaches were getting worse and it happened almost daily. I maintained a good GPA. Sophomore, it was a bit rough. After that, things got worse, migraine headaches everyday and eyes were getting dry and itchy and eyesight is poor. Cognitive skill is deteriorating but didn't realize it until later that there was really something wrong. I always thought it was just me. I was taking Pre-law in college. I wanted to become a lawyer like my father but my mother didn't want me to continue with my course because the family was planning to move abroad so she wanted me to become a dentist so that I can have a career abroad. My Mom said she will stop supporting me if I didn't change my course.
So in the summer after my sophomore year besides all the weird things I was going through, I started to take the pre-requisites for Dentistry. In my practical courses, I had very good grades but courses where memorization was needed, I was failing. I had been studying and was always prepared for the exams but during tests I blacked out. My professors were disappointed and met with me and asked what was going on. I felt so stupid. I gave up school in third year and went back to it many times later in my life. First year I came to the U.S. In 1994, I enrolled in classes. I did good with my practical subjects, in fact I had A's, but where I needed to memorize, I didn't do good. Next thing, my symptoms were more pronounced. Stomach issues, severe migraines happened everyday. After many years of ordeal, I was diagnosed in 2002. After my diagnosis and after my decompression surgery, I was so excited to go back to school. I had strong feelings that I would do good but I was disappointed. I couldn't carry my books from the parking lot to my classroom so I bought a backpack with a roller, still my arms can't pull the bag. I applied for a disabled parking permit thinking it should help. It was difficult to get to my classes although I had no other choice. I thought things were better. During my first test besides not being able to recall any terms I memorized from brain fog, I was so sick when I got home but again, I had no choice but to study for there was another test the next day. I asked my husband and my son that dinner will be leftovers because I wanted to head out to Starbucks to study. Albeit I was feeling weird, I still studied but when I went home, my husband told me, my color was different, that my face was green. Before we even had dinner, to me things got dark and next thing I passed out. I was taken to the ER. I overworked my brain. Too much water in my head and I needed bed rest.
It didn't just stop there. Too many instances to enumerate. From studying to exercise and work, etc.
I used to go to the gym on a regular basis to keep myself trim and realize later that I couldn't do any form of exercise because my nerves were too damaged and my muscles do not recuperate normally.
It was difficult to accept all of these changes in my body function. I took many years to come to terms with reality that there were many things that I cannot pursue in life because of my limitations. Thats why to some they call Syringomyelia a preternatural thief of lives not lived to its fullest.
In later years, I realized that those ambitions, the eagerness of wanting to better yourself will always stay with you but when your body fails, no matter how bitter it could be, like the saying goes; " only in your dreams" because things will not happen and life will not stop for you. You have to learn to
suck it all up. Only a miracle will help. If it does ever happen.
I considered myself an intelligent child. I graduated in elementary with honors and same thing in High School, only with a little difficulty. My first year in college was exciting, although my migraine headaches were getting worse and it happened almost daily. I maintained a good GPA. Sophomore, it was a bit rough. After that, things got worse, migraine headaches everyday and eyes were getting dry and itchy and eyesight is poor. Cognitive skill is deteriorating but didn't realize it until later that there was really something wrong. I always thought it was just me. I was taking Pre-law in college. I wanted to become a lawyer like my father but my mother didn't want me to continue with my course because the family was planning to move abroad so she wanted me to become a dentist so that I can have a career abroad. My Mom said she will stop supporting me if I didn't change my course.
So in the summer after my sophomore year besides all the weird things I was going through, I started to take the pre-requisites for Dentistry. In my practical courses, I had very good grades but courses where memorization was needed, I was failing. I had been studying and was always prepared for the exams but during tests I blacked out. My professors were disappointed and met with me and asked what was going on. I felt so stupid. I gave up school in third year and went back to it many times later in my life. First year I came to the U.S. In 1994, I enrolled in classes. I did good with my practical subjects, in fact I had A's, but where I needed to memorize, I didn't do good. Next thing, my symptoms were more pronounced. Stomach issues, severe migraines happened everyday. After many years of ordeal, I was diagnosed in 2002. After my diagnosis and after my decompression surgery, I was so excited to go back to school. I had strong feelings that I would do good but I was disappointed. I couldn't carry my books from the parking lot to my classroom so I bought a backpack with a roller, still my arms can't pull the bag. I applied for a disabled parking permit thinking it should help. It was difficult to get to my classes although I had no other choice. I thought things were better. During my first test besides not being able to recall any terms I memorized from brain fog, I was so sick when I got home but again, I had no choice but to study for there was another test the next day. I asked my husband and my son that dinner will be leftovers because I wanted to head out to Starbucks to study. Albeit I was feeling weird, I still studied but when I went home, my husband told me, my color was different, that my face was green. Before we even had dinner, to me things got dark and next thing I passed out. I was taken to the ER. I overworked my brain. Too much water in my head and I needed bed rest.
It didn't just stop there. Too many instances to enumerate. From studying to exercise and work, etc.
I used to go to the gym on a regular basis to keep myself trim and realize later that I couldn't do any form of exercise because my nerves were too damaged and my muscles do not recuperate normally.
It was difficult to accept all of these changes in my body function. I took many years to come to terms with reality that there were many things that I cannot pursue in life because of my limitations. Thats why to some they call Syringomyelia a preternatural thief of lives not lived to its fullest.
In later years, I realized that those ambitions, the eagerness of wanting to better yourself will always stay with you but when your body fails, no matter how bitter it could be, like the saying goes; " only in your dreams" because things will not happen and life will not stop for you. You have to learn to
suck it all up. Only a miracle will help. If it does ever happen.
On Being Disabled
Out of all torments, disability is the worst. This is what I believe in because I go through it. Material things can be replaced but your health is your wealth. Not only do I go through physical pain but mental anguish at times. Mental anguish ravages your soul and your very being. Sometimes I fight both pain. Around people you have to maintain a certain mood as to not be judged. Even though you're not in the mood to be positive, you have to, around people or else you're accused of putting their mood down. ( Now it's impossible to type again, so I will continue this next time. )
This is one good reason for having this blog. When I need to get things out of my mind, I can write how I feel without being judged by others. I can vent without hurting others. I need to express myself. It sure helps with my sanity.
Many years ago, I was always admired by others for being positive and patient. I remember once, a lady who came to visit me with a friend of mine cried after seeing me because she realized how she had taken everything for granted. "Here you are,"she mused, "sick and in pain but you're happy and positive." I believe that being able to inspire others can give us a certain feeling of self worth. Apparently, those days are rare for me now. At this point, it hardly ever happens anymore. Maybe my outlook will change later. After I lost the ability to sit up four years ago, having arms that almost has no use and having to always be in bed, it became difficult for me to inspire others. In fact, I am in need of someone to inspire me. I'm not sure. I'm hoping this feeling will pass soon.
Before this happened, my desire was to go out there, encourage and inspire others. Visit the sick, the elderly, orphans and so on, but for having chronic pain, you never know what the next day brings. Besides, it has been seven years that I had to depend on others to take me to places.
More often that not, I had to cancel doctors appointments. I refuse to go to PT, not only that it's too taxing to get out of the house but because my muscles cannot tolerate it. I haven't had any desire to go anywhere for years. I refuse to take showers. I refuse to see normal people who live "normal" lives.
In my opinion, there's a big difference between being disabled and can get around, than someone disabled who's almost stuck in bed all day.
This is one good reason for having this blog. When I need to get things out of my mind, I can write how I feel without being judged by others. I can vent without hurting others. I need to express myself. It sure helps with my sanity.
Many years ago, I was always admired by others for being positive and patient. I remember once, a lady who came to visit me with a friend of mine cried after seeing me because she realized how she had taken everything for granted. "Here you are,"she mused, "sick and in pain but you're happy and positive." I believe that being able to inspire others can give us a certain feeling of self worth. Apparently, those days are rare for me now. At this point, it hardly ever happens anymore. Maybe my outlook will change later. After I lost the ability to sit up four years ago, having arms that almost has no use and having to always be in bed, it became difficult for me to inspire others. In fact, I am in need of someone to inspire me. I'm not sure. I'm hoping this feeling will pass soon.
Before this happened, my desire was to go out there, encourage and inspire others. Visit the sick, the elderly, orphans and so on, but for having chronic pain, you never know what the next day brings. Besides, it has been seven years that I had to depend on others to take me to places.
More often that not, I had to cancel doctors appointments. I refuse to go to PT, not only that it's too taxing to get out of the house but because my muscles cannot tolerate it. I haven't had any desire to go anywhere for years. I refuse to take showers. I refuse to see normal people who live "normal" lives.
In my opinion, there's a big difference between being disabled and can get around, than someone disabled who's almost stuck in bed all day.
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