Today will be a short post and continuation of the story. I have not been feeling well lately and have been kind of lying to myself about it. Hopefully with some rest and good nutrition I will bounce back. I had 2 beers last night for the firs time in about a year and a half. I am also going out to dinner tonight for my birthday and am very excited. It feels unreal to be doing these things again. But very normal at the same time.
Back to the pain...that awful pain. I remember the night I had laid there in my bed in tears from the searing burning all over my body. I was awake the whole night wondering what was going on. I felt muscle twitches, spasms, stabbing, throbbing and everything imaginable possible in my body. Why? How is this possible??? What is causing this? I felt so alone and afraid. I wondered how I could have pinched nerves in both my arms. I had went to the ER and all they could do was give me Vicodin and send me home. I stayed at a friends house that night after he picked me up and I had hoped that the pain would subside but it didn't. I had driven to my Dad's house the next day with 2 useless arms. It was hard to navigate but sadly I had gotten used to it. I went inside and began sobbing. How was I going to finish school? The semester was almost over and I couldn't drop out. I had worked so hard...how was I going to play bass? How was I going to get into another college? How was I going to live with Mari when she got back from Japan? My Father thought I had cracked form stress. I went into my room and slept for a few hours finally. I woke up but the pain was still there. I had been to the doctor this whole time and no one offered any answer.
I sat in my GP's office for the hundred time it felt like. He walked in and examined me again and said.."perhaps it will get better...." I had asked for an MRI to see if there was a pinched nerve or anything there. But he said plainly "I will recommend anything you want but it is up to the review board to see if it is necessary and I don't see how an MRI would change your course of treatment." I sat in disbelief...He just rejected me. I had asked him to sign a disability paper for my college so I could have someone write for me and calss and take tests. I had also talked to my math tutor about dictating my homework for me. I walked into my math professor's office and explained my situation and how I had no arms that worked but I wanted to finish. She said ok and said that she hoped I felt better soon. There was about 3 weeks till finals. I was determined to make it. At this point the best answer I had gotten was that I needed ulnar nerve relocation surgery and then my problems would be solved. When I asked about my back or legs the surgeon said that sometimes when one thing hurts somewhere sometimes things hurt other places too. Very scientific for a doctor who went to Duke University So the plan was to finish the semester then get the surgery, recover for a few weeks and return to school in spring. But it didn't go that way.
I woke up that day in pain as usual. I got up and wore the same clothes I had fell asleep in. I think I slept 2 or 3 hours if that. I had not brushed my teeth in a few days because it hurt too much to bend my arms to do so. But I decided I needed to and tried anyways. I couldn't do it. I threw my tooth brush down and walked out to my car. How I drove was with stiff straight arms. I couldn't rotate my arms all the way around to turn so I had to do it in sections. I drove to subway and ordered some breakfast. I sat there staring at the egg sandwich....My arms hurt too much to pick it up but I was starving. There was only one other person eating there and I decided I didn't care what he though. I shoved my head face first into the food and took a bite. With each bite I felt shame and embarrassment. Also fear...a great fear that I still didn't know what was happening to me and if I didn't know how would it get any better. I finished and got up and the man opened to door for me. "Have a good day" he said. I wondered what he thought about me after seeing that. I went to my car and sat in the driver seat. I tried to put the key in the ignition and stopped. I cried. It hurt, every cell in my body screamed with agony, pain pain pain pain. What was happening? Somebody help me! Save me! I called my aunt and uncle who lived near by. They said I could drive to their house to rest, but I knew I couldn't make it. I then called my mom to pick me up and she said that my brother would get me. I mustered up the strength to drive the 2 miles. I parked and walked around. Then I felt the nerve in my lower back go off. Great, I thought. How could it get any worse. I waited and finally my brother came. He picked me up and I said I needed to go the hospital. He took me to Huntington Memorial. I thought that my salvation would be there. It was a state of the art facility. I would get the help I needed there.
I also recorded a bass solo piece. Please check it out.
http://www.youtube.com/watch?v=OTwrhVwteV4
Saturday, April 21, 2012
Friday, April 20, 2012
Stay Human
There are thieves in this world who attempt to steal life's most precious treasure
They lie, beg, cheat, desecrate, and manipulate their way into our souls
These people try to steal your humanity
They are the men and women who leave you heart broken
The parents who never cared
The politicians who steal your money
The doctors who robbed you of your health
And the ones who said you can't
Sometimes it is inconceivable to imagine
These people attempt to make you like them
To rob you of your soul and your heart
To transform you into a heartless beast
But no matter what has been taken from you do not turn
Because if all we have in this world turns to dust
then all that matters is who we are
Not what we possess
Anyways, I would like to dedicate this to a Lyme disease patient who lost his battle today, Patrick Wylie Kelly.
My thoughts for his family and friends.
The past few days have been interesting;. A surge of symptoms here and there. Some loss of motivation and then right back to the forefront again. I won my SSI case today, so that is a great blessing. They ruled it was psychosomatic (I really don't care what they say as long as they give me money). Besides that I have been practicing and reflecting. I feel like it is time to lay this journey so far on paper. I know I have talked to many people in it in bits and pieces, but it really is an epic journey that has taken me across the world in terms of people I have met and things I have discovered, as well as the ends of my sanity and will to live.
It was June of 2010. I stood in the airport lobby staring at the huge 747 through the thick glass that would take me away from the woman I loved, from the dream I had accomplished, from a life I had built that I knew would end but never wanted it to. The last eight months had been building to this and I never could have dreamed I would be where I was then. It was literally at that point one of the hardest things I had done in my life. It was funny that I cried and she didn't, but we said good bye. My throat open and closed and I heaved and turned away to head back to my home. Little did I know I was bringing more than just some souvenirs and photographs from Japan.
That plane ride home was like torture....sitting in a crowded seat alone in a plane full of people. I couldn't concentrate, couldn't sleep, couldn't stop thinking about how I was going to do it. How we were going to do it, I was determined at the time though. So I sat in a daze and tried to sleep. Every few hours I would check the screen to see how far away I was from her and from home. It was quite unsettling a lot to know you were in the middle of no where. That if you were to crash that there would be no help. Thank god it never happened. I watched some movies on Chopin and listened to classical music on the way back. It set the mood fairly well. When I had arrived at LAX I looked at the grey smog filled sky with a giant sigh. Everything was fairly ugly compared to where I had been before, but it was home nonetheless. I met my dad and we drove home, there I continued to talk to her everday.
I began practicing bass again after a hiatus of about a month. I had accepted my admission and San Jose State University and was waiting to go up north. Every day I practiced around 5 or 6 hours. Eventually I got a gig playing for a friend's rock band with only 6 days to learn 5 songs from a CD. During the rehearsals my left hand and arm started to hurt. I was afraid, perhaps I was overdoing it. I went to the doctor and was instructed to take anti-inflammatories and ice it. So I did...for weeks and weeks. Eventually the pain got so bad I could not bend my arm. I then went to physical therapy week after week. At this point I had moved out on my own to a house in Cypress. I rented a nice room with a few other people and decided to change my major and try to get into a better school. Why you ask? Because I had been bombarded with the possibility of not being able to make any money in music. Suddenly things I had never cared about, like a family, kids, or a house, all seemed to be in the forefront of my mind. I wanted to get married, and she had said yes. But I had already felt the burden of needing to provide, instead of accomplishing what I wanted.
So instead of practicing bass 6 hours a day I began studying math. Day in and day out I studied and went to class. I was in 18 units and going to 3 different colleges 5 days a week. I thought the only way to succeed was to kill myself through hard work and effort. I still managed to practice and get some gigs on the side as well as get lessons from teachers. That time was very liberating though, I was completely on my own. I had only one purpose, and that was to serve me and survive. I honestly wasn't taking great care of myself then. I stayed up late, drank often, and ran myself ragged. All this time my left arm was literally broken. I woke up with it in pain, and I went to sleep with it in pain. I couldn't really use it anymore. It just tangled there useless. Eventually I began to wonder if there was something with the nerve as opposed to just tendonitis. I remember stretching it one day and it literally exploded. My elbow flared up and then began the worst pain I would soon know for what seemed an eternity.
Fire was the best way to explain it, but if you have never known the feeling of nerve pain than you better thank god, jesus, allah, buddha, and anyone else you could give thanks to because this is quite literally the greatest pain a person can experience. It felt like someone had shoved hot coals under my skin and set them there to burn. It tormented me day and night, never relenting. Soon the pain spread to my other arm, then my back, then my legs, and I was reduced to nothing. Just a shell of pain...
To be continued
They lie, beg, cheat, desecrate, and manipulate their way into our souls
These people try to steal your humanity
They are the men and women who leave you heart broken
The parents who never cared
The politicians who steal your money
The doctors who robbed you of your health
And the ones who said you can't
Sometimes it is inconceivable to imagine
These people attempt to make you like them
To rob you of your soul and your heart
To transform you into a heartless beast
But no matter what has been taken from you do not turn
Because if all we have in this world turns to dust
then all that matters is who we are
Not what we possess
Anyways, I would like to dedicate this to a Lyme disease patient who lost his battle today, Patrick Wylie Kelly.
My thoughts for his family and friends.
The past few days have been interesting;. A surge of symptoms here and there. Some loss of motivation and then right back to the forefront again. I won my SSI case today, so that is a great blessing. They ruled it was psychosomatic (I really don't care what they say as long as they give me money). Besides that I have been practicing and reflecting. I feel like it is time to lay this journey so far on paper. I know I have talked to many people in it in bits and pieces, but it really is an epic journey that has taken me across the world in terms of people I have met and things I have discovered, as well as the ends of my sanity and will to live.
It was June of 2010. I stood in the airport lobby staring at the huge 747 through the thick glass that would take me away from the woman I loved, from the dream I had accomplished, from a life I had built that I knew would end but never wanted it to. The last eight months had been building to this and I never could have dreamed I would be where I was then. It was literally at that point one of the hardest things I had done in my life. It was funny that I cried and she didn't, but we said good bye. My throat open and closed and I heaved and turned away to head back to my home. Little did I know I was bringing more than just some souvenirs and photographs from Japan.
That plane ride home was like torture....sitting in a crowded seat alone in a plane full of people. I couldn't concentrate, couldn't sleep, couldn't stop thinking about how I was going to do it. How we were going to do it, I was determined at the time though. So I sat in a daze and tried to sleep. Every few hours I would check the screen to see how far away I was from her and from home. It was quite unsettling a lot to know you were in the middle of no where. That if you were to crash that there would be no help. Thank god it never happened. I watched some movies on Chopin and listened to classical music on the way back. It set the mood fairly well. When I had arrived at LAX I looked at the grey smog filled sky with a giant sigh. Everything was fairly ugly compared to where I had been before, but it was home nonetheless. I met my dad and we drove home, there I continued to talk to her everday.
I began practicing bass again after a hiatus of about a month. I had accepted my admission and San Jose State University and was waiting to go up north. Every day I practiced around 5 or 6 hours. Eventually I got a gig playing for a friend's rock band with only 6 days to learn 5 songs from a CD. During the rehearsals my left hand and arm started to hurt. I was afraid, perhaps I was overdoing it. I went to the doctor and was instructed to take anti-inflammatories and ice it. So I did...for weeks and weeks. Eventually the pain got so bad I could not bend my arm. I then went to physical therapy week after week. At this point I had moved out on my own to a house in Cypress. I rented a nice room with a few other people and decided to change my major and try to get into a better school. Why you ask? Because I had been bombarded with the possibility of not being able to make any money in music. Suddenly things I had never cared about, like a family, kids, or a house, all seemed to be in the forefront of my mind. I wanted to get married, and she had said yes. But I had already felt the burden of needing to provide, instead of accomplishing what I wanted.
So instead of practicing bass 6 hours a day I began studying math. Day in and day out I studied and went to class. I was in 18 units and going to 3 different colleges 5 days a week. I thought the only way to succeed was to kill myself through hard work and effort. I still managed to practice and get some gigs on the side as well as get lessons from teachers. That time was very liberating though, I was completely on my own. I had only one purpose, and that was to serve me and survive. I honestly wasn't taking great care of myself then. I stayed up late, drank often, and ran myself ragged. All this time my left arm was literally broken. I woke up with it in pain, and I went to sleep with it in pain. I couldn't really use it anymore. It just tangled there useless. Eventually I began to wonder if there was something with the nerve as opposed to just tendonitis. I remember stretching it one day and it literally exploded. My elbow flared up and then began the worst pain I would soon know for what seemed an eternity.
Fire was the best way to explain it, but if you have never known the feeling of nerve pain than you better thank god, jesus, allah, buddha, and anyone else you could give thanks to because this is quite literally the greatest pain a person can experience. It felt like someone had shoved hot coals under my skin and set them there to burn. It tormented me day and night, never relenting. Soon the pain spread to my other arm, then my back, then my legs, and I was reduced to nothing. Just a shell of pain...
To be continued
Sunday, April 8, 2012
The long road home
I am sorry I have not updated this blog in almost a year. The past year has been quite the experience for me, nearly dying from malnourishment, attempting suicide twice, becoming addicted to painkillers and ativan, living in Cedar Sinai for weeks on end, being pumped full of IV's, weighing at only 125 lbs. and not being able to walk, to fully functional in a few months time has been extremely crazy for me. I look back and realize I should not be here. I should not be driving, playing my bass again, talking with friends, and enjoying a brand new day. Many times I had given up hope, and many times I was sure it was the end. I cannot being to explain the misery and torment that life began to become in the process of treating Lyme...
Everyday I wanted it to be over, I wanted release...It seemed like the unsolvable puzzle that no one could figure out and the only thing anyone could do would be to take a stab at it. My doctors didn't know what to do, I didn't know, my family neither.
I remember that I had major stomach problems...it always hurt. So eventually I stopped eating. Along with all the antibiotics and medication came endless heartburn. With the heartburn I could either eat and then have to sit up for hours, or sleep...eventually I chose sleep. Soon Even the smallest meals began to fill me up. I went insane from the hunger and began having crazy thoughts. But to say the least I just did not want to continue. There was a point when I was getting my IV rocephin and I had not eaten for days. I stood up to go to the bathroom and literally fainted and hit my head against the wall. I fell over and wanted death. I had given up. I was rushed to the hospital and sent to the ER. They wanted to admit it and had asked if I had ever taken an HIV test because I was so thin and frail. I assured them I had and Lyme disease was my diagnosis...
There I sat in that hospital room...night after night hooked up to bags of fluids, and never being able to sleep. It was cold and dark, lonely and painful. At that point I was determined to die...I remember my dad crying and my mom too. I didn't care anymore, but through the grace of God my heart rate went up form the 30's and I was able to go home.
I'll save you some time but in after that I ended up swallowing a bottle of ativan and sleeping pills one night because I was done....let me tell you to never do such a thing. I ended up having to choke down charcoal and have a catheter put it. After my week long stint in one of the dirtiest ICU's I had ever seen I was then sent to a mental hospital in Cerritos that was literally hell. At this point I could barely walk and was reduced to shuffling around the grounds and hoping my back would not break on me. On the plus side I got to meet Sarah Michelle Gellers cousin who was a patient there (who looked just like him) and witness people hallucinating and tweaked out of their minds. Talk about One flew Over the Cuckoos Nest. Those times were scary. I was not sure I was going to make it...but I did.
I am back at normal weight, I am playing my bass, I am walking up stairs, I am living...I still feel bad sometimes, and still have neuropathy. But I don't feel like Lyme is there as strong as it was.
I say this to all the other Lyme disease patients out there...There is hope...there is an end to the suffering, the pain, the endless nights where you don't know if you will wake up, or even want to. The human body is capable of amazing healing on its own. We are incredible machines designed by God to allow ourselves to sustain even the most traumatic damage. Another thing is do not buy into the bull shit you may read. Lots of people have been sick for many years and have tried so many different crazy treatments that they no longer know what they are dealing with. There is an endless road of doctors and medications that can be pumped into your system. Do not trust everyone, there are snake charmers in the midst of chronic illness. Antibiotics are dangerous, and long term antibiotics are dangerous as well. There are great risks and complications to long term treatment, so weighing of the pros and cons is crucial.
During all this illness I experienced a great heart ache...A heart ache I have not had the time or want to deal with. I never wanted t o because every time I tried I would get emotional and the pain would get worse. I lost someone I loved and ironically this love took me to where I got Lyme. I still feel lots of abandonment and sadness and I can't seem to let it go. I am writing this for the therapeutic value of it. There is a lot of loneliness in chronic illness, lots of isolation, lots of friends and family lost, even significant others get tired. I guess I am still feeling lonely from all of this. And it's funny that I would be embarrassed to say I am lonely...Something to human that everyone experiences...Why would someone feel ashamed to say that to another person. And ask for company....is it my own insecurities or is there real judgment from others...who knows...I should stop caring so much. As the Persian girl who I met in the mental ward who I was sure had Lyme too said" I am undeadable!" At least I can look back and say I have survived. I am tough as nails...I am amazing...And really believe it.
You can beat this god awful disease and all the misinformation and ignorance that goes along with it. There is hope and someday I pray that we will be bigger than AID's patients (Although we already are) and we weill get the recognition and help we deserve.
I will continue to update this with Lyme and non Lyme stuff. I hope you are well on this Saturday night and I pray for you.
Everyday I wanted it to be over, I wanted release...It seemed like the unsolvable puzzle that no one could figure out and the only thing anyone could do would be to take a stab at it. My doctors didn't know what to do, I didn't know, my family neither.
I remember that I had major stomach problems...it always hurt. So eventually I stopped eating. Along with all the antibiotics and medication came endless heartburn. With the heartburn I could either eat and then have to sit up for hours, or sleep...eventually I chose sleep. Soon Even the smallest meals began to fill me up. I went insane from the hunger and began having crazy thoughts. But to say the least I just did not want to continue. There was a point when I was getting my IV rocephin and I had not eaten for days. I stood up to go to the bathroom and literally fainted and hit my head against the wall. I fell over and wanted death. I had given up. I was rushed to the hospital and sent to the ER. They wanted to admit it and had asked if I had ever taken an HIV test because I was so thin and frail. I assured them I had and Lyme disease was my diagnosis...
There I sat in that hospital room...night after night hooked up to bags of fluids, and never being able to sleep. It was cold and dark, lonely and painful. At that point I was determined to die...I remember my dad crying and my mom too. I didn't care anymore, but through the grace of God my heart rate went up form the 30's and I was able to go home.
I'll save you some time but in after that I ended up swallowing a bottle of ativan and sleeping pills one night because I was done....let me tell you to never do such a thing. I ended up having to choke down charcoal and have a catheter put it. After my week long stint in one of the dirtiest ICU's I had ever seen I was then sent to a mental hospital in Cerritos that was literally hell. At this point I could barely walk and was reduced to shuffling around the grounds and hoping my back would not break on me. On the plus side I got to meet Sarah Michelle Gellers cousin who was a patient there (who looked just like him) and witness people hallucinating and tweaked out of their minds. Talk about One flew Over the Cuckoos Nest. Those times were scary. I was not sure I was going to make it...but I did.
I am back at normal weight, I am playing my bass, I am walking up stairs, I am living...I still feel bad sometimes, and still have neuropathy. But I don't feel like Lyme is there as strong as it was.
I say this to all the other Lyme disease patients out there...There is hope...there is an end to the suffering, the pain, the endless nights where you don't know if you will wake up, or even want to. The human body is capable of amazing healing on its own. We are incredible machines designed by God to allow ourselves to sustain even the most traumatic damage. Another thing is do not buy into the bull shit you may read. Lots of people have been sick for many years and have tried so many different crazy treatments that they no longer know what they are dealing with. There is an endless road of doctors and medications that can be pumped into your system. Do not trust everyone, there are snake charmers in the midst of chronic illness. Antibiotics are dangerous, and long term antibiotics are dangerous as well. There are great risks and complications to long term treatment, so weighing of the pros and cons is crucial.
During all this illness I experienced a great heart ache...A heart ache I have not had the time or want to deal with. I never wanted t o because every time I tried I would get emotional and the pain would get worse. I lost someone I loved and ironically this love took me to where I got Lyme. I still feel lots of abandonment and sadness and I can't seem to let it go. I am writing this for the therapeutic value of it. There is a lot of loneliness in chronic illness, lots of isolation, lots of friends and family lost, even significant others get tired. I guess I am still feeling lonely from all of this. And it's funny that I would be embarrassed to say I am lonely...Something to human that everyone experiences...Why would someone feel ashamed to say that to another person. And ask for company....is it my own insecurities or is there real judgment from others...who knows...I should stop caring so much. As the Persian girl who I met in the mental ward who I was sure had Lyme too said" I am undeadable!" At least I can look back and say I have survived. I am tough as nails...I am amazing...And really believe it.
You can beat this god awful disease and all the misinformation and ignorance that goes along with it. There is hope and someday I pray that we will be bigger than AID's patients (Although we already are) and we weill get the recognition and help we deserve.
I will continue to update this with Lyme and non Lyme stuff. I hope you are well on this Saturday night and I pray for you.
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