Sunday, April 21, 2013
It's Alright Now...
Besides having a lot of issues, mentally I've been much better. I'm not sure if I had mentioned about my diagnosis in 2007 which were Gastroparesis and Cervical Spondylosis. One of the doctors said to me that my neck was like an 85 year old’s. I didn’t think much about it, being aware of having a degenerative ailment, anything could happen. We can only hope for the best. This time, the cervical spondylosis had turned into Central Cord Syndrome. It's difficult to deal with thoracic symptoms as it is and to add central cord syndrome symptoms is too much. Cervical syrinx causes more complications especially when the brainstem is affected as in my case. The degeneration is also faster in Syringobulbia. Besides suffering for so long, suddenly I felt that my symptoms are only getting worse. The room for improvement to much of my life is slim and seemingly inconsequential, when stacked beside the physical and emotional pain I have to endure every day. I have a lot of physical pain, and discomfort, much of which there is nothing that can be done to change it. But there's not much we can do to change it. I just have to enjoy the things I can still do, whatever it may be.
I continue to take 3600mg/day Neurontin for almost 13 years now. 300mg/day Cymbalta, 150mg/day Ultram, 5mg/as needed Diluadid and 20mg Baclofen at bedtime.
Let me tell you a little bit of what Central cord syndrome is. It is a form of incomplete spinal cord injury (in which some of the signals from the brain to the body are not received), characterized by impairment in the arms and hands and to a lesser extent in the legs. The brain's ability to send and receive signals to and from parts of the body below the site of trauma is affected but not entirely blocked. This syndrome, usually the result of trauma, is associated with damage to the large nerve fibers that carry information directly from the cerebral cortex to the spinal cord. These nerves are particularly important for hand and arm function. Symptoms may include paralysis and/or loss of fine control of movements in the arms and hands, with relatively less impairment of leg movements. Sensory loss below the site of the spinal injury and loss of bladder control may also occur, with the overall amount and type of functional loss dependent on how severely the nerves of the spinal cord are damaged.
Each individual has their own tolerance for coping, also depending on the demands, of his/her daily life. What might satisfy one person, may not satisfy another. On the contrary, what might seem unbearable to some, might seem reasonable to others. As for me, I would rather loose the use of my legs than to loose the use of my trunk (stomach included), arms and neck. Imagine what you can do with almost having no use of your arms and no use of your trunk. Besides it being so challenging, there seems to be no comfortability. With a stiff trunk, it’s difficult just to sleep, a small wrinkle or a seam in your clothing can cause so much pain.
For almost three years, each time I take a step it causes a very painful spasticity in my back and I avoid lying on my back because it causes the same problem. I lie down on one side mainly, my right side. I’m always in that position and can’t do much, even watching television is a challenge! This is the only way I can use my laptop, I use it sideways and when my right leg becomes numb and weak and painful like now, I have to wait until it goes away and I’m forced to lie on the left or my back causing a different type of pain but there’s usually no other choice. My back and my left side is ubestiff and without any feelings but if I lay on it, causes it to become spastic and the pain is unbearable oftentimes causing me to vomit. I wish that I can be a candidate for rhizotomy which is the cutting of the cold air, it causes difficulty breathing, I’ve been taken to the ER for this many times although the last few years that is causing my muscles to become spastic. Unfortunately, I can’t be a candidate. It is located on the left side of my head. This was proven during my last surgery at the North Shore University Hospital in Manhassett. I laid on my back for many hours during surgery and when I woke up, I was screaming to my lungs because of severe pain in my back. Spasticity is a
condition where muscles are continuously tight or stiff, sometimes causing a person a great deal of pain. I can only describe the pain of spasticity as in like a wash cloth being wrung and you have some part of your meat wrapped inside that cloth being twisted. To me it is over the top pain!! Out of all the pain I have to deal with, this has been the, OMG!! There has been no medication that alleviates it so far. Besides having to deal with the SM symptoms that we, sufferers are all aware of , in addition to central pain, dealing with autonomic dysfunction can be frustrating. I get cold sweats, hot flashes, change in temperature could be grueling, 24/7 nausea and chills. If I breath in cold air, it causes difficulty breathing, I’ve been taken to the ER for this many times although the last few years, I had been spared, so maybe the dysphagia is better. If I was exposed to heat, my body swells instantly and with cold wind that touches your skin, it's like an acid burning pain and if the cold is there to stay, it's like digging through your bones. Bladder dysfunction also adds to the aggravation. Most likely I use the bathroom about 30-40 times a day. With central pain, I can’t wear any of my nice clothes anymore because they hurt me and causes me to swell up so they’re replaced by soft, loose clothing usually made of cotton or flannel, always wearing pajamas. (If I wore my normal pants that have a waistline and zipper, because of nerve damage and or Gastroparesis, it causes my stomach to get big like I’m nine months pregnant) Anything that binds, it hurts and causes swelling. When a fabric is skin tight, it is very uncomfortable, in a few minutes, it becomes even more tight because of the swelling. The same as with shoes. I have so many clothes that are mostly fitting and I definitely cannot afford to replace them. I have a few maternity dresses that I would wear to go out and at home, one would always catch me in my pajamas. I think the yoga pants would be comfy, but with the amount of money that we get from SSDI there is definitely no budget for clothing!
Regardless of all of the symptoms that I just shared, I am more accepting of all such challenges. As with looks, I used to keep myself trim and toned by exercising on a regular basis. As with money and material possessions, having a job or passion for something you want to do that gives meaning to your life, the ability to fit in to society, being able to drive that gives you a certain independence,
keeping a healthy hobby that can promote a feeling of self-worth, these have been long gone from my list. I can’t have them so I have to divert away from things I can’t do or have. I turn to Him for I comfort and kindness. Since I can’t go to church, our Pastor comes and visits with me every Thursday and explains further what I read from the bible. There are times where I feel I'm loosing hope but it helps me to believe that we should not forget God no matter what we face here on earth.
Conversely, as with quads or paraplegics, having a wheelchair accessible vehicle offers them the freedom to travel and go out much more easily, some quadriplegics have the ability to drive, mostly using adaptive equipment. I think of this and this is the one that is most painful for me to think right now. I can now easily say, it’s okey to be paralyzed but to be paralyzed and not be able to sit up in
your own wheelchair and drive it, is a double jeopardy. This is the most frustrating for me right now because of not being able to sit up. I think I could act like Frida in that movie of the same title where they brought the bed wherever she goes!
You can't always control the course of your life, despite all the best planning in the world.
But the best thing is God will not leave us alone. I tell you honestly, I don't know how I got to this
point, but I know for sure I have someone watching over me.
Friday, February 1, 2013
A Diaphragm Issue?
It’s now been three years since I started to have spasticity. I didn’t quite understand it in the beginning albeit as time went on and stiffness started to spread, it became clear to me that it is a effect of paralysis. The muscle on the side of my thoracic vertebrae is now permanently stiff, reason why I cannot sit up. I always have a view of the ceiling when I'm at home or the sky when riding in a car. There has been more degeneration that followed. My stomach muscles became more flaccid. I now suffer from autonomic dysfunction. Walking has become even more of a pain than it used to be. What could be the next?
I always dreaded going to the emergency room, that’s why I waited for my right stomach quadrant pain that mimics a gallbladder problem to subside. Since I already had gallbladder surgery three years ago, I was worried it could be my liver, so this time, I was forced to go to the emergency room. Here we go again, carried a pillow and a blanket and wore comfortable clothes ready for the long haul. It wasn’t too bad being called in after an hour and a half wait, they ordered a CT, urine test and last was a chest X ray. Wondering why a chest X ray, the nurse said it’s to rule out pneumonia. All tests came out negative, except for a cyst in my liver which doesn’t usually cause pain according to the physician. But, there’s a possibility as with having Syringomyelia that it could be my diaphragm and they cannot help me at the ER. The doctor recommends a follow up with my primary care.
Am I going to see my GP for it? No, I don’t think so. I don’t even want to go to UCDavis anymore! In my opinion, I haven’t been taken cared of there as I should have been with
other hospitals. I plan to move back to Mercy Hospital where they have more caring doctors and real doctors at that. It mabe frustrating seeing doctors that don’t know a thing about
Syringomyelia, but my only consolation is that I’m able to
consult with my Neurosurgeon at the Chiari Institute online and he always has an answer and knows what I go through in most cases. I’ll wait until the weekend when he has time to e-mail his patients.
I always pray for more patience and energy to deal with this agony. If it is my diaphragm, I know that there’s nothing that could be done, it’s just another muscle in my body that will be in constant pain and I noticed that narcotic pain reliever cannot alleviate this pain. Syringomyelia as I’ve read, attacks every muscle in your body and will attack you at will.
I always pray for more patience and energy to deal with this agony. If it is my diaphragm, I know that there’s nothing that could be done, it’s just another muscle in my body that will be in constant pain and I noticed that narcotic pain reliever cannot alleviate this pain. Syringomyelia as I’ve read, attacks every muscle in your body and will attack you at will.
I always pray for more patience and energy to deal with this
agony. If it is my diaphragm, I know that there’s nothing that could be done, it’s just another muscle in my body that will be in constant pain and I noticed that narcotic pain reliever cannot alleviate this pain. Syringomyelia as I’ve read, attacks every muscle in your body and will attack you at will.
I know it’s not a good way to look at it but there are times when I think that maybe when I’m paralyzed, it maybe easier to know that you can’t move than to force yourself to use a part of your body because you still have a functioning brain e.g. a limb which causes you so much pain in order to function. I have been walking with a spastic gait for so many years. It could get uber frustrating but, I have to remain strong and positive as it’s the right thing to do. Life could be tough. But do I have a choice?
me to do things I wish to do but in order to be happy, I had to contend but in the end, bow your head down and be content because you realize that you can’t win the battle. Yes, I may sound dramatic but this is my life now. It may not be as much fun but I’m thankful of the small things I can do here and there. Thankful for my laptop that I can prop it sideways where it doesn’t need to be held and I can read from it. Thankful for my voice recognition software even though it could be a pain using it sometimes. I’m thankful for the people that are in my life especially my Mom, son, sis Alicia, Dora, my caregiver, all of my friends and last but not least, for Kevin Molloy for being there for me and thankful of his love. I feel blessed because I know that God loves us and He never leaves us alone.
I always dreaded going to the emergency room, that’s why I waited for my right stomach quadrant pain that mimics a gallbladder problem to subside. Since I already had gallbladder surgery three years ago, I was worried it could be my liver, so this time, I was forced to go to the emergency room. Here we go again, carried a pillow and a blanket and wore comfortable clothes ready for the long haul. It wasn’t too bad being called in after an hour and a half wait, they ordered a CT, urine test and last was a chest X ray. Wondering why a chest X ray, the nurse said it’s to rule out pneumonia. All tests came out negative, except for a cyst in my liver which doesn’t usually cause pain according to the physician. But, there’s a possibility as with having Syringomyelia that it could be my diaphragm and they cannot help me at the ER. The doctor recommends a follow up with my primary care.
Am I going to see my GP for it? No, I don’t think so. I don’t even want to go to UCDavis anymore! In my opinion, I haven’t been taken cared of there as I should have been with
other hospitals. I plan to move back to Mercy Hospital where they have more caring doctors and real doctors at that. It mabe frustrating seeing doctors that don’t know a thing about
Syringomyelia, but my only consolation is that I’m able to
consult with my Neurosurgeon at the Chiari Institute online and he always has an answer and knows what I go through in most cases. I’ll wait until the weekend when he has time to e-mail his patients.
I always pray for more patience and energy to deal with this agony. If it is my diaphragm, I know that there’s nothing that could be done, it’s just another muscle in my body that will be in constant pain and I noticed that narcotic pain reliever cannot alleviate this pain. Syringomyelia as I’ve read, attacks every muscle in your body and will attack you at will.
I always pray for more patience and energy to deal with this agony. If it is my diaphragm, I know that there’s nothing that could be done, it’s just another muscle in my body that will be in constant pain and I noticed that narcotic pain reliever cannot alleviate this pain. Syringomyelia as I’ve read, attacks every muscle in your body and will attack you at will.
I always pray for more patience and energy to deal with this
agony. If it is my diaphragm, I know that there’s nothing that could be done, it’s just another muscle in my body that will be in constant pain and I noticed that narcotic pain reliever cannot alleviate this pain. Syringomyelia as I’ve read, attacks every muscle in your body and will attack you at will.
I know it’s not a good way to look at it but there are times when I think that maybe when I’m paralyzed, it maybe easier to know that you can’t move than to force yourself to use a part of your body because you still have a functioning brain e.g. a limb which causes you so much pain in order to function. I have been walking with a spastic gait for so many years. It could get uber frustrating but, I have to remain strong and positive as it’s the right thing to do. Life could be tough. But do I have a choice?
me to do things I wish to do but in order to be happy, I had to contend but in the end, bow your head down and be content because you realize that you can’t win the battle. Yes, I may sound dramatic but this is my life now. It may not be as much fun but I’m thankful of the small things I can do here and there. Thankful for my laptop that I can prop it sideways where it doesn’t need to be held and I can read from it. Thankful for my voice recognition software even though it could be a pain using it sometimes. I’m thankful for the people that are in my life especially my Mom, son, sis Alicia, Dora, my caregiver, all of my friends and last but not least, for Kevin Molloy for being there for me and thankful of his love. I feel blessed because I know that God loves us and He never leaves us alone.
Saturday, November 24, 2012
Not Too Hopeful
I have not logged in here for a very long time but I would like to stop by and say hi and update you with what's going on with me.
Someone told me before that I was having a lot of symptoms for someone who has a very small syrinx. My ex-brother-in-law also told my in-laws that I should not be having all of the symptoms that I had before because my syrinx is very small. I want to inform you that the size of the syrinx doesn’t matter. Patients with Chiari I can have symptoms with a large syrinx, small syrinx, or no syrinx. A syrinx is a syrinx and it can cause a lot of pain! Because treatment of syringomyelia can prevent disease progression, but cannot restore neurons lost to the disease, early diagnosis and treatment is the key to maintain optimal function.
For Chiari related syringomyelia, surgery will reduce the syrinx, or at least stop it from growing, up to 80% of the time. However, this does not always translate into a significant improvement in symptoms, and many people still experience some pain - and other symptoms - after surgery. There is currently no way to identify beforehand who will get better with surgery and what symptoms will improve. However, some research has indicated that the longer someone has symptoms before they receive surgery, the less chances they have of a successful outcome. It is important for every patient to discuss the possible surgical outcomes, in detail, with their doctor, so they know what to expect.
I started to have severe symptoms in 1995 but wasn't diagnosed until 2002. Besides having arm pain since I was 9 years old. I had headaches since I was in first grade that was elevated into migraines from high school and in college became so debilitating that went on until the day I was diagnosed! In between were episodes of heart murmur, severe stomach problems, bladder dysfunction, right arm pain and other weird symptoms.
I would like to let you all know what I have been dealing with lately.To eliminate the smaller details, In December of 2010 I started to have spasticity on the left side of my lower back leaving it very stiff and hard like a piece of wood. I also have spasticity in my armpit, legs and bladder that can last for more than thirty minutes. We are probably aware that spasticity is a symptom of paralysis. It seems like a spreading paralysis that started in my lower trunk that went up to my upper back that included the left part of my chest.
Until now I have not heard any of my doctors tell me what’s going on. I am now very weak and I can just feel that quadriplegia is not so far away. I have not been able to sit up for almost two years now. Everywhere I go I needed to lie down, always having the view of the sky when traveling. The left side of my trunk feels like a hard board that could not be flexed and at the same time my stomach is flaccid that the muscles can’t support my body.
Before my surgery in September 2011, I asked Dr. B. if my spasticity on the left side of my torso will change but he said it is my Thoracic area that is causing this and didn’t say much about it.
I am so lost that I don’t know where to go anymore. I think there’s really no available surgical intervention at this time. Even Dr. B of the Chiari Institute may not just be telling me what may hurt me. He advises me to stay positive. There is NO CURE for Syringomyelia and I know I just have to be strong. I’m getting paralyzed slowly and I have to be strong because nothing could be done to stop it.
I have been depressed but I have to get out of the sideline. I have to do something. Get
A myself out of misery. I need to be strong and try harder to stay positive.
For months I have been wanting to see a psychologist at UC Davis. It took me almost 6 months before I was able to get into a therapy session. But it wasn’t the therapy session that I was hoping for. Instead, it was a group therapy. Or what to call it a pain therapy. And was the most disappointing to me was when it was my turn to talk and I started talking about my pain and what I go through on a day-to-day basis, Dr. Gerritz, one of the therapy doctors, said , “Aurora, there is no record of your pain that you are talking about in any of the departments here at UC Davis” so I asked him, do you think Dr. that it’s just me then? Dr. Fishman answered saying what Dr. Gerritz meant was that there are different factors that can trigger pain it could be depression or it could be other things. I didn’t believe what she said but I knew Dr. Gerritz was referring to the depression. I was even more disappointed.
I really wish I walked out of that session as I thought in the beginning.
Conversely, Kev and I were able to travel last Nov. 7-9 to Oregon and around North Coast to Redding, Trinidad, Arcata, Ferndale, Eureka, Crescent City, Brookings Oregon, Ukiah, Lucerne, Clearlake. In Crescent City, we were able to go to the Jedidiah Smith Redwoods. It was another nice short vacation for Kevin and I .
Getting home was another story. I ran out of Cymbalta and I suffered. I was vomiting every day and couldn’t stop. So my caregiver and I decided it’s time to go to the emergency room, and I did. There were many doctors that were involved in my care. My extremities were very weak. The doctors wanted to keep me for another two days at the hospital, but I wanted to go home. We left after almost 2 days and did nothing but rest. I cannot function. My arms feel like they are going to fall off and my buttocks and legs feel like they are going to separate from my body. I cannot use my arms without getting hurt so bad and so nauseous. I had been falling. Dizziness came with the severe pain.
WI sent an e-mail to my specialist in New York. My letter says:
Dr. B,
I was taken to the ER because I had been vomiting for almost three days and can't keep food down.
At the ER, doctors noticed that my extremities were very weak and some of my fingers lack sensation. They ordered an X-ray of my stomach, a CT and an MRI of my cervical spine but
not the head.
There were many doctors involved in my care. I knew they were all doing their best but it's not easy to decide what is the best thing for me right now. It was noted that the MRI doesn't
show a tremendous significance with the previous one from 01/12.
The nausea and vomiting subsided after I was given a dose of Zofran and was sent home with a prescription of the same medicine. The doctors thought of keeping me at the hospital but later released me with an order to come back when symptoms get worse and to follow up with Neurosurgery.
Right now, the nausea is back again especially after using my hands/arms. Washing my body has become very difficult for me especially drying my hair. My buttocks and lower back feels like it's broken into pieces and it's burning making my legs weak causing me to fall now and then. It's a very scary feeling doctor. My chest and arms always feel shaky but numb. I forgot to tell you in my last e-mail that my little fingers on both hands don't have sensation and also the left thumb. The big swollen lymph nodes on my left arm pit that were there
when I was in grade school are back. My upper back, shoulders and chest area are swollen and are tender to the touch and never goes away. The left side of my trunk seems like an inanimate object now.
Like you said, I just try to stay positive and live my life as best as I can. I'm ready with whatever happens as I know He will not leave me alone. I'm not sure if there's anything else that can help but if not it's alright too, as I want to rest now.
Thank you for everything you've done for me.
Sincerely,
Aurora
As for now, my symptoms are scary and I know I won’t last long being ambulatory, I feel it
even though I try to be as positive as I possibly can. There are all the symptoms.
Someone told me before that I was having a lot of symptoms for someone who has a very small syrinx. My ex-brother-in-law also told my in-laws that I should not be having all of the symptoms that I had before because my syrinx is very small. I want to inform you that the size of the syrinx doesn’t matter. Patients with Chiari I can have symptoms with a large syrinx, small syrinx, or no syrinx. A syrinx is a syrinx and it can cause a lot of pain! Because treatment of syringomyelia can prevent disease progression, but cannot restore neurons lost to the disease, early diagnosis and treatment is the key to maintain optimal function.
For Chiari related syringomyelia, surgery will reduce the syrinx, or at least stop it from growing, up to 80% of the time. However, this does not always translate into a significant improvement in symptoms, and many people still experience some pain - and other symptoms - after surgery. There is currently no way to identify beforehand who will get better with surgery and what symptoms will improve. However, some research has indicated that the longer someone has symptoms before they receive surgery, the less chances they have of a successful outcome. It is important for every patient to discuss the possible surgical outcomes, in detail, with their doctor, so they know what to expect.
I started to have severe symptoms in 1995 but wasn't diagnosed until 2002. Besides having arm pain since I was 9 years old. I had headaches since I was in first grade that was elevated into migraines from high school and in college became so debilitating that went on until the day I was diagnosed! In between were episodes of heart murmur, severe stomach problems, bladder dysfunction, right arm pain and other weird symptoms.
I would like to let you all know what I have been dealing with lately.To eliminate the smaller details, In December of 2010 I started to have spasticity on the left side of my lower back leaving it very stiff and hard like a piece of wood. I also have spasticity in my armpit, legs and bladder that can last for more than thirty minutes. We are probably aware that spasticity is a symptom of paralysis. It seems like a spreading paralysis that started in my lower trunk that went up to my upper back that included the left part of my chest.
Until now I have not heard any of my doctors tell me what’s going on. I am now very weak and I can just feel that quadriplegia is not so far away. I have not been able to sit up for almost two years now. Everywhere I go I needed to lie down, always having the view of the sky when traveling. The left side of my trunk feels like a hard board that could not be flexed and at the same time my stomach is flaccid that the muscles can’t support my body.
Before my surgery in September 2011, I asked Dr. B. if my spasticity on the left side of my torso will change but he said it is my Thoracic area that is causing this and didn’t say much about it.
I am so lost that I don’t know where to go anymore. I think there’s really no available surgical intervention at this time. Even Dr. B of the Chiari Institute may not just be telling me what may hurt me. He advises me to stay positive. There is NO CURE for Syringomyelia and I know I just have to be strong. I’m getting paralyzed slowly and I have to be strong because nothing could be done to stop it.
I have been depressed but I have to get out of the sideline. I have to do something. Get
A myself out of misery. I need to be strong and try harder to stay positive.
For months I have been wanting to see a psychologist at UC Davis. It took me almost 6 months before I was able to get into a therapy session. But it wasn’t the therapy session that I was hoping for. Instead, it was a group therapy. Or what to call it a pain therapy. And was the most disappointing to me was when it was my turn to talk and I started talking about my pain and what I go through on a day-to-day basis, Dr. Gerritz, one of the therapy doctors, said , “Aurora, there is no record of your pain that you are talking about in any of the departments here at UC Davis” so I asked him, do you think Dr. that it’s just me then? Dr. Fishman answered saying what Dr. Gerritz meant was that there are different factors that can trigger pain it could be depression or it could be other things. I didn’t believe what she said but I knew Dr. Gerritz was referring to the depression. I was even more disappointed.
I really wish I walked out of that session as I thought in the beginning.
Conversely, Kev and I were able to travel last Nov. 7-9 to Oregon and around North Coast to Redding, Trinidad, Arcata, Ferndale, Eureka, Crescent City, Brookings Oregon, Ukiah, Lucerne, Clearlake. In Crescent City, we were able to go to the Jedidiah Smith Redwoods. It was another nice short vacation for Kevin and I .
Getting home was another story. I ran out of Cymbalta and I suffered. I was vomiting every day and couldn’t stop. So my caregiver and I decided it’s time to go to the emergency room, and I did. There were many doctors that were involved in my care. My extremities were very weak. The doctors wanted to keep me for another two days at the hospital, but I wanted to go home. We left after almost 2 days and did nothing but rest. I cannot function. My arms feel like they are going to fall off and my buttocks and legs feel like they are going to separate from my body. I cannot use my arms without getting hurt so bad and so nauseous. I had been falling. Dizziness came with the severe pain.
WI sent an e-mail to my specialist in New York. My letter says:
Dr. B,
I was taken to the ER because I had been vomiting for almost three days and can't keep food down.
At the ER, doctors noticed that my extremities were very weak and some of my fingers lack sensation. They ordered an X-ray of my stomach, a CT and an MRI of my cervical spine but
not the head.
There were many doctors involved in my care. I knew they were all doing their best but it's not easy to decide what is the best thing for me right now. It was noted that the MRI doesn't
show a tremendous significance with the previous one from 01/12.
The nausea and vomiting subsided after I was given a dose of Zofran and was sent home with a prescription of the same medicine. The doctors thought of keeping me at the hospital but later released me with an order to come back when symptoms get worse and to follow up with Neurosurgery.
Right now, the nausea is back again especially after using my hands/arms. Washing my body has become very difficult for me especially drying my hair. My buttocks and lower back feels like it's broken into pieces and it's burning making my legs weak causing me to fall now and then. It's a very scary feeling doctor. My chest and arms always feel shaky but numb. I forgot to tell you in my last e-mail that my little fingers on both hands don't have sensation and also the left thumb. The big swollen lymph nodes on my left arm pit that were there
when I was in grade school are back. My upper back, shoulders and chest area are swollen and are tender to the touch and never goes away. The left side of my trunk seems like an inanimate object now.
Like you said, I just try to stay positive and live my life as best as I can. I'm ready with whatever happens as I know He will not leave me alone. I'm not sure if there's anything else that can help but if not it's alright too, as I want to rest now.
Thank you for everything you've done for me.
Sincerely,
Aurora
As for now, my symptoms are scary and I know I won’t last long being ambulatory, I feel it
even though I try to be as positive as I possibly can. There are all the symptoms.
Saturday, September 15, 2012
Life Is Just Not Fair But Remember That God Is Good
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.
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.
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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