So I haven't posted for a very long time. I thought I should now. I have a good friend who owns her own medical practice and her husband is my cardiologist. She has beengood to me, patient with me and most of all has tried to help bygettingme the help Ineed to try and find the right person to help fix this. Yet once again all has fallen through. Where there was once hope there is now emptiness. So many around me have stood by me, supported me, etc. yet I have effected them all in some negative way. My family is barely hanging together, I disappoint my friends, I haven't been to church in some time, because of this illness consumes me and no one truly understands what I am ging through. Yet I pretend to be stronger than I am arond everyone because I dont want them to see me as weak and not incontrol, but honestly this is me now. Iam angry,hateful, and even mean, and not because I want to but because this is what consumes me with this illness.
My bestfriend Chris trys to keep me laughing, my spitits up, but I am still alone. so at this point I am throwing in the towel, no more fighting this, no more doctors, no more meds, etc. I am done. My life will be as it was made to be and I wll deal with what has been dealtto me. I am not sure why this has happened or what I have done, but it is what it is. On my good days I will be thankful, and on those many bad days the only prayer I will pray it to take me from this pain and life.
I thank everyone for all they have tried to do and have done. But now it must be as it should.
It is funny how much lately I have reached out to so many in my past on my facebook. Just to have a chance to touch my past and be open to my future.
I want to end this with an apology to everyone for my cruelty even though it wasn't my intention.
Sunday, January 31, 2010
Friday, February 22, 2008
I am done with all the meds
What a crazy road I seem to have been on. My meds had increased, and they finally this last month had tried Fentynal patches which in 1 month left me physically toxic. Yes, sicker physically without really ever knowing that these 3 day at a time patches were actually poisoning/overdosing me (They just were recalled http://www.fda.gov/oc/po/firmrecalls/pricara02_08.html ) Finally the first time I was in the least amount of pain I have been in years, but at what expense. Well let me tell you, at the expense of not being able to really be there like I would like to for my children and husband, as they were slowly poisoning me. After a month I could no longer take it and stopped all my medications against the recommendation of my physicians, as I have been suggesting for months. They insisted that if this route was what I was ever to take that I go into the hospital and have a pic line placed into my heart due to the strain this could take on my body, but still recommended against stopping all the meds, but I am tired, and I wonder now how much real good all of these meds are really doing or at the expense of loosing any precious time with my family. I have learned that it is better to be in in pain and to have quality time with my family than to not remember not having any time with my family. This my doctors do understand, so now we all search for alternatives to my suffering, and to find hope. In this whole process, I am thankful for my family, my friends, and my church and for the Lord who stands by me even though at times I am feeling so alone. Truly I am Blessed, even with these illnesses.
Wednesday, February 6, 2008
Can this illness drive you to do crazy things?
First of all let me apologize for any typos, or spelling errors as my spell checker for some reason isn't working and it doesn't help that the docs have me on so much pain meds right now that my function level , well lets just say it is poor but I am trying and it takes me many trys. Over time I have come to find that this chronic illness that lives inside of me has another name...... I now call it "Satan." It acts, deceives, hurts, corrupts,consumes, destroys, takes over ones life, and those around it or who loves others in so many ways. You can call it Chiari, Pseudo Tumor Cerebrie, or any other Chronic illness which leaves you in so much pain, but the bottom line is......its name is Satan, and if allowed in at will destroy and consume you and those you love. I am fighting this Satan now as unfortunately I think now that I have let this "Evil" in and I and my family are being consumed. I thank God every night that he has answered my prayers and not allowed me to give in and kept me strong, although I feel so very weak yet something within me has has kept me fighting this urge where one voice is telling me that I can't keep doing this and allowing this to destroy my family and is allowing them to be hurt and then another voice wants peace for my family and myself and knows that I could in a blink of an eye end all of thins pain for them and myself , yet I know this voice is Satan , and then the other part of me is fighting knowing that they would never want any of this
nor do I. Then their is the calm voice within I hear that that I know is peaceful with encouraging words which is why I remain here to fight for my family and myself and my miracle. My youngest one Max came to sit by me today and asked me why it is that it hurts me so much to cuddle with him anymore cause he misses it. He says he is sad he I am sick and it makes his cry to think that I am sick, I was so hurt by this question. All I could say to him as I tried to hold back my tears as I watch his tears swell up in his eyes, was I too miss cuddling with him to, so very very much but this illness that I have makes it hurt alot for my skin to even touch my clothes, my blankets and things like that, and its not that I don't want to cuddle with him cause more than anything in the world I would love to. But of course this is still just hard for him to understand so I asked him to find his favorite stuffed animal that I had gotten for him and he could cuddle with that a squeeze it as tightly as he wants and my love is always stored in it for him and although I may not be able to sit and cuddle alot like he wants, but I will try as much as possible to endure his hugs so I leaned over to give him a hug (pain and all) but he had a hard time letting go. This is why one of the reasons this illness keeps me fighting and on that fine line of the edge off being driven to do crazy things. One minute I know what I am fighting for and the next that maybe what I need to be fighting against .
Satan comes in many forms in our lives, and each day he enters my life and tests me regarding these chronic illnesses and through the boundaries of my weakest links......my loved ones and how this effects me. When I see my childrens and families sadness and tears and that there is no help to my pain and theirs except to end mine, I realize then, Satan wins! This is when I turn to God and continued to ask for his strength, I ask my dear Christian friends to to put me in their prayers asking for further strength, but I still realize that Satan awaits daily silently knocking on my door still trying to succeed by gaining further entry into my life, putting up further road blocks, and by closing my door on me succeeding on my own dreams of finding a cure for these chronic illnesses, that are consuming me and my family. I haven't seen my parents in several years nor my 94 year. old grandmother who I miss so dearly and is not doing well herself. am so homesick and isolated right now which doesn't help with my depression. But until the time comes I will continue to take my long walks on those white sandy beaches and will invite at times my children to also run on the reach while the water and sand runs between their toes, I will sit calmly on the beach as I feel the oceans air blow through my hair only to feel the calming peace run through my body and the warmth overcome me, I will watch my husband building sandcastles with with Kaytlynn and Max while they laugh and play in delight, I will watch Kyler and Kendrick run down the white beaches full of seashells flying there bright and colorful kites smiling and full of enjoyment with I have not seen in so long, and I will finally feel those tiny little arms or Max's hugging me and cuddling me so tightly without pain, while looking up to God knowing God was looking down at me and finally gave me my miracle.
nor do I. Then their is the calm voice within I hear that that I know is peaceful with encouraging words which is why I remain here to fight for my family and myself and my miracle. My youngest one Max came to sit by me today and asked me why it is that it hurts me so much to cuddle with him anymore cause he misses it. He says he is sad he I am sick and it makes his cry to think that I am sick, I was so hurt by this question. All I could say to him as I tried to hold back my tears as I watch his tears swell up in his eyes, was I too miss cuddling with him to, so very very much but this illness that I have makes it hurt alot for my skin to even touch my clothes, my blankets and things like that, and its not that I don't want to cuddle with him cause more than anything in the world I would love to. But of course this is still just hard for him to understand so I asked him to find his favorite stuffed animal that I had gotten for him and he could cuddle with that a squeeze it as tightly as he wants and my love is always stored in it for him and although I may not be able to sit and cuddle alot like he wants, but I will try as much as possible to endure his hugs so I leaned over to give him a hug (pain and all) but he had a hard time letting go. This is why one of the reasons this illness keeps me fighting and on that fine line of the edge off being driven to do crazy things. One minute I know what I am fighting for and the next that maybe what I need to be fighting against .
Satan comes in many forms in our lives, and each day he enters my life and tests me regarding these chronic illnesses and through the boundaries of my weakest links......my loved ones and how this effects me. When I see my childrens and families sadness and tears and that there is no help to my pain and theirs except to end mine, I realize then, Satan wins! This is when I turn to God and continued to ask for his strength, I ask my dear Christian friends to to put me in their prayers asking for further strength, but I still realize that Satan awaits daily silently knocking on my door still trying to succeed by gaining further entry into my life, putting up further road blocks, and by closing my door on me succeeding on my own dreams of finding a cure for these chronic illnesses, that are consuming me and my family. I haven't seen my parents in several years nor my 94 year. old grandmother who I miss so dearly and is not doing well herself. am so homesick and isolated right now which doesn't help with my depression. But until the time comes I will continue to take my long walks on those white sandy beaches and will invite at times my children to also run on the reach while the water and sand runs between their toes, I will sit calmly on the beach as I feel the oceans air blow through my hair only to feel the calming peace run through my body and the warmth overcome me, I will watch my husband building sandcastles with with Kaytlynn and Max while they laugh and play in delight, I will watch Kyler and Kendrick run down the white beaches full of seashells flying there bright and colorful kites smiling and full of enjoyment with I have not seen in so long, and I will finally feel those tiny little arms or Max's hugging me and cuddling me so tightly without pain, while looking up to God knowing God was looking down at me and finally gave me my miracle.
Tuesday, January 22, 2008
My days with my chronic pain
I am a mother of 4 beautiful children ages 16, 15, 11, and 7. I have a wonderful husband and just a great family. And up until a 7 years ago I had more than any one person should ever be blessed with.
I had a full time job that I thoroughly enjoyed, my husband worked full time and we were able to spend quality time with our children. Doing all the things that we believed a "family" should do. Tried raising our children with morals, with respect for themselves and others and believing in God.
You see, I suffer from Pseudo Tumor Cerebri, and possible Chiari malformation, yet my Neurologist won't officially diagnose me as I don't meet her known criteria. She is not updated on the current criteria to which I do qualify. She is a wonderful doctor, who is compassionate, and very caring just not up to date on the new Chiari information or its new criteria for diagnoses. But I can't blame her as she is a very busy woman, and we live in a rural community. She assisted me the best that she could/can and tried to help me get some relief from my pain by having a shunt placed in me. This surgery failed. The surgery left me deformed, emotionally drained, physically sick due to the infection and the carelessness of the Neurosurgeon. The surgery left me pain that has me in tears for many hours of each and every 24 hour day. Between the surgery and my chronic illnesses it has taken away my ability to perform a part time job much less a full time job. It has left my once stable family torn in more pieces than I can count.
You see, my children now have to worry about their mother. Something that they should never, ever have to do. They have had to grow up faster than is fair to any child because they have to make up for the everyday things that I am not able to do for them anymore. My 7 year old has no idea what "real fun" is. His idea of fun is sitting at home playing legos, or sitting by my side and telling me how sad he is that I am sick and can't play with him. My husband has had to work harder than ever to make up for the income that I once contributed to the family, so that we can afford the bare medical treatment - medications, drs, therapists, specialists - Plus he has to try and maintain the stability that we once had as a family unit.
It is so hard to wake up each morning in so much pain that the tears roll down my face uncontrollably while at the same time trying to be a positive roll model for my children and reassure them that I am ok. When I know I am certainly anything but ok. It is so hard to watch my husband struggle with his full time job that has no benefits and maintain a household, cook dinner, help the children with their homework, and ensure that they are able to do some of the things that all teenagers and young children should be able to enjoy.
So you see, chronic pain takes so much away from a person. I am no longer a person but rather a burden to all those around us. I have become isolated from society because I and others like me are no longer able to function. I have become depressed because I suffer horrendous amounts of pain day in and day out. I am not alone, as there are others like me. Plus we see our families being torn apart right before our eyes and there is not a darn thing we can do about it. It is so hard to find a doctor that is willing to treat those of $us, and when we do they are not able to provide adequate relief sometimes due to the lack of information on the illness and its treatment. Most doctors know their hands are tied so they turn us away. Society in general turns us away. Every door is closed to those of us that suffer chronic pain from these illnesses. That is humiliating, it takes away a person's self esteem, takes away all that we fought so hard to become. Pain has taken away everything about me and others like me.
As a chronic painer I have had to fight for everything. I fight to get out of bed each and every day, I try so hard to fight back the tears and when I can't it is so frustrating. I have to fight to be seen by a doctor that is willing to treat and cure my pain due to not having the right type of insurance. I have had to fight to get any relief and the relief that is offered leaves the mind in a mess, or doesn't touch the pain enough so that I can function. My first medication was a drug called Neurontin, this drug caused me to forget who I was, where I lived, and I even forgot that I was responsible for our children. Do you have any idea how horrible I felt not only as a mother but as a human being?
If taking a medication that contains an opiod/pain killer is the only way that allows me to wake up in the morning and kiss my children good bye as they head out the door for school than I don't want it? If taking an opiod/pain killer is the only way that allows me to walk outside on a sunny day, then why bother. If taking an opiod/pain killer is my only means that I might actually smile or laugh with my family or friends- then forget it? I don't want to have to rely on an opiod/painkillers to have my quality of life back when I know there is a cure. These opiods/pain killers are just a band-aid.
Every day that I wake up the very first thought is not what am I going to do today, its not what clothes should I wear, its not whether or not my socks match my pants, its not any of these things that most people think of. My first thought each and every morning is whether or not today is going to be the day that throws me over the edge, or what is the most effective way to end all this pain...yes, suicide is the first thing on my mind every day. Its the last thing on my mind at the end of each day. And its there on my mind right along with the pain every minute of every day. I have to pray every night and ask God for the strength to make it through another day and to thank him for getting me through the day that is at end.
I'm not asking for money, I'm not asking for special treatment, I'm not asking for a new house or a fancy car. All I ask is for adequate relief. Enough relief to allow me to have a "good" day. A "good" day being a day that I can get up without tears, kiss & hug my family good bye as they venture out for their day, straighten up my house, do a load of laundry, make dinner, help my children with their homework, talk to them about their day, and to let them know that they are the most important thing in the world to me. My dream, my goal in life at this point, is to reassure my children that whatever troubles life throws at them, I will always be there for them no matter what. Yet this to for me is a struggle.
The past 7 years I have not lived, I have suffered with each year getting worse. I may not be dead, but is this really any kind of life? I don't understand why I am not worthy of proper medical treatment, treatment that involves adequate relief. I have worked, I pay taxes, I am a proud American, I have respected others, I have done so many right things in my life to help others. I am the reason that my husband went into his own depression and chose to look to another for his own comfort. He says that he is sorry for straying and will never again look to another, but should he be sorry when I am to blame? My family falling apart is not because he haas not tried, but because I am unable to when I am consumed by my pain. The pain that I suffer is not my fault, it is not something that I did to myself deliberately, it is not my fault and it is not my family's fault. Why are we left to suffer like this? Why do I deserve less than some sense of normalcy in my life and the lives of my family?
Lately, I have been taking long walks on cyber-beaches, be them in Cabo San Lucas, with waves crashing against the rocks, or long stretches of white sand in Maui where I can hear the wind rushing through my ears, gulping in the salty hungrily, hoping each breath will renew and restore my weary body.
My problems certainly are no more, or no less, important than anyone else’s. I can only measure them against myself; against the problems I have solved, the ones laying in wait, and the ones just around the corner, beckoning me and challenging me to conquer them, one by one. Whole or broken, the seashells that crunch beneath my feet tell me I’ve unraveled yet another problem which only a moment, hours or days before felt insurmountable.
I never cease to be amazed and stunned at the amount or ferociousness of the issues for which I am confronted; daily fights for financial assistance, medicinal help (promised, yet not delivered) and all else that awaits me and others in chronic, intractable pain. While it is true that everyone, not just sick people, must deal with the gnats in the air and the bumps in the road, it is far different when tackling those issues through the veil of pain.
Which brings me back to the cyber-beach and all it’s simplicity. I can feel the sand between my toes, warm and sun soaked, stretched out in front of me for mile after eye-squinting mile. It comforts me, that beach. The hot sun pours down on my beaten body, offering a sort of healing. But the Earth can’t heal me this time around, good as the sun feels. It can only offer me the sense of healing, which will have to be enough for now. I live being afraid to wake up each day.
My visits lately to doctors and to the ER, have been useless. No one undertands the pain I am in, nor wants to really listen. They hear only what they want to. I am on disability now, with State paid insurance. I do not qualify for medicare until 2009, so in the meantime I am treated as a second class person because of the insurance I do have. I don't go to the doctors looking for pain meds, nor am I addicted to them, yet when they look at my history of my illnesses, and my list of the 33 pills I take daily, they treat me as if I was drug seeking. I am treated by ER docs as a nuisance, and a waste of time anymore. Only 2 of the 33 pills are for pain, which I do not take regularly as prescribed, as I have the fear of addiction, and don't want to be costantly doped up. The rest are to help my kidneys from failing, my heart, etc. I ask the doctors to help me seek out why I am in so much pain and to help me get the treatment and cure, yet they turn me away. This only makes things worse. I am so hopeless.
I had a full time job that I thoroughly enjoyed, my husband worked full time and we were able to spend quality time with our children. Doing all the things that we believed a "family" should do. Tried raising our children with morals, with respect for themselves and others and believing in God.
You see, I suffer from Pseudo Tumor Cerebri, and possible Chiari malformation, yet my Neurologist won't officially diagnose me as I don't meet her known criteria. She is not updated on the current criteria to which I do qualify. She is a wonderful doctor, who is compassionate, and very caring just not up to date on the new Chiari information or its new criteria for diagnoses. But I can't blame her as she is a very busy woman, and we live in a rural community. She assisted me the best that she could/can and tried to help me get some relief from my pain by having a shunt placed in me. This surgery failed. The surgery left me deformed, emotionally drained, physically sick due to the infection and the carelessness of the Neurosurgeon. The surgery left me pain that has me in tears for many hours of each and every 24 hour day. Between the surgery and my chronic illnesses it has taken away my ability to perform a part time job much less a full time job. It has left my once stable family torn in more pieces than I can count.
You see, my children now have to worry about their mother. Something that they should never, ever have to do. They have had to grow up faster than is fair to any child because they have to make up for the everyday things that I am not able to do for them anymore. My 7 year old has no idea what "real fun" is. His idea of fun is sitting at home playing legos, or sitting by my side and telling me how sad he is that I am sick and can't play with him. My husband has had to work harder than ever to make up for the income that I once contributed to the family, so that we can afford the bare medical treatment - medications, drs, therapists, specialists - Plus he has to try and maintain the stability that we once had as a family unit.
It is so hard to wake up each morning in so much pain that the tears roll down my face uncontrollably while at the same time trying to be a positive roll model for my children and reassure them that I am ok. When I know I am certainly anything but ok. It is so hard to watch my husband struggle with his full time job that has no benefits and maintain a household, cook dinner, help the children with their homework, and ensure that they are able to do some of the things that all teenagers and young children should be able to enjoy.
So you see, chronic pain takes so much away from a person. I am no longer a person but rather a burden to all those around us. I have become isolated from society because I and others like me are no longer able to function. I have become depressed because I suffer horrendous amounts of pain day in and day out. I am not alone, as there are others like me. Plus we see our families being torn apart right before our eyes and there is not a darn thing we can do about it. It is so hard to find a doctor that is willing to treat those of $us, and when we do they are not able to provide adequate relief sometimes due to the lack of information on the illness and its treatment. Most doctors know their hands are tied so they turn us away. Society in general turns us away. Every door is closed to those of us that suffer chronic pain from these illnesses. That is humiliating, it takes away a person's self esteem, takes away all that we fought so hard to become. Pain has taken away everything about me and others like me.
As a chronic painer I have had to fight for everything. I fight to get out of bed each and every day, I try so hard to fight back the tears and when I can't it is so frustrating. I have to fight to be seen by a doctor that is willing to treat and cure my pain due to not having the right type of insurance. I have had to fight to get any relief and the relief that is offered leaves the mind in a mess, or doesn't touch the pain enough so that I can function. My first medication was a drug called Neurontin, this drug caused me to forget who I was, where I lived, and I even forgot that I was responsible for our children. Do you have any idea how horrible I felt not only as a mother but as a human being?
If taking a medication that contains an opiod/pain killer is the only way that allows me to wake up in the morning and kiss my children good bye as they head out the door for school than I don't want it? If taking an opiod/pain killer is the only way that allows me to walk outside on a sunny day, then why bother. If taking an opiod/pain killer is my only means that I might actually smile or laugh with my family or friends- then forget it? I don't want to have to rely on an opiod/painkillers to have my quality of life back when I know there is a cure. These opiods/pain killers are just a band-aid.
Every day that I wake up the very first thought is not what am I going to do today, its not what clothes should I wear, its not whether or not my socks match my pants, its not any of these things that most people think of. My first thought each and every morning is whether or not today is going to be the day that throws me over the edge, or what is the most effective way to end all this pain...yes, suicide is the first thing on my mind every day. Its the last thing on my mind at the end of each day. And its there on my mind right along with the pain every minute of every day. I have to pray every night and ask God for the strength to make it through another day and to thank him for getting me through the day that is at end.
I'm not asking for money, I'm not asking for special treatment, I'm not asking for a new house or a fancy car. All I ask is for adequate relief. Enough relief to allow me to have a "good" day. A "good" day being a day that I can get up without tears, kiss & hug my family good bye as they venture out for their day, straighten up my house, do a load of laundry, make dinner, help my children with their homework, talk to them about their day, and to let them know that they are the most important thing in the world to me. My dream, my goal in life at this point, is to reassure my children that whatever troubles life throws at them, I will always be there for them no matter what. Yet this to for me is a struggle.
The past 7 years I have not lived, I have suffered with each year getting worse. I may not be dead, but is this really any kind of life? I don't understand why I am not worthy of proper medical treatment, treatment that involves adequate relief. I have worked, I pay taxes, I am a proud American, I have respected others, I have done so many right things in my life to help others. I am the reason that my husband went into his own depression and chose to look to another for his own comfort. He says that he is sorry for straying and will never again look to another, but should he be sorry when I am to blame? My family falling apart is not because he haas not tried, but because I am unable to when I am consumed by my pain. The pain that I suffer is not my fault, it is not something that I did to myself deliberately, it is not my fault and it is not my family's fault. Why are we left to suffer like this? Why do I deserve less than some sense of normalcy in my life and the lives of my family?
Lately, I have been taking long walks on cyber-beaches, be them in Cabo San Lucas, with waves crashing against the rocks, or long stretches of white sand in Maui where I can hear the wind rushing through my ears, gulping in the salty hungrily, hoping each breath will renew and restore my weary body.
My problems certainly are no more, or no less, important than anyone else’s. I can only measure them against myself; against the problems I have solved, the ones laying in wait, and the ones just around the corner, beckoning me and challenging me to conquer them, one by one. Whole or broken, the seashells that crunch beneath my feet tell me I’ve unraveled yet another problem which only a moment, hours or days before felt insurmountable.
I never cease to be amazed and stunned at the amount or ferociousness of the issues for which I am confronted; daily fights for financial assistance, medicinal help (promised, yet not delivered) and all else that awaits me and others in chronic, intractable pain. While it is true that everyone, not just sick people, must deal with the gnats in the air and the bumps in the road, it is far different when tackling those issues through the veil of pain.
Which brings me back to the cyber-beach and all it’s simplicity. I can feel the sand between my toes, warm and sun soaked, stretched out in front of me for mile after eye-squinting mile. It comforts me, that beach. The hot sun pours down on my beaten body, offering a sort of healing. But the Earth can’t heal me this time around, good as the sun feels. It can only offer me the sense of healing, which will have to be enough for now. I live being afraid to wake up each day.
My visits lately to doctors and to the ER, have been useless. No one undertands the pain I am in, nor wants to really listen. They hear only what they want to. I am on disability now, with State paid insurance. I do not qualify for medicare until 2009, so in the meantime I am treated as a second class person because of the insurance I do have. I don't go to the doctors looking for pain meds, nor am I addicted to them, yet when they look at my history of my illnesses, and my list of the 33 pills I take daily, they treat me as if I was drug seeking. I am treated by ER docs as a nuisance, and a waste of time anymore. Only 2 of the 33 pills are for pain, which I do not take regularly as prescribed, as I have the fear of addiction, and don't want to be costantly doped up. The rest are to help my kidneys from failing, my heart, etc. I ask the doctors to help me seek out why I am in so much pain and to help me get the treatment and cure, yet they turn me away. This only makes things worse. I am so hopeless.
Are the docs joking?
Yesterday, I went to the doctors for the severe pain in my back/spine. This was an orthopedic doctor. So far no was has addressed the severe pain in my back and spine. He was a little nervous to really touch me or do anything because of my chronic illnesses, etc. He did refer me to a Neorosurgeon, but guess who? Yes Dr. Beers, the same one who placed the "wasted" shunt in me, and had assualted me. And guess what? I told him that there was no way I would ever let Dr. Beers near me again. Go Figure. I know that we are taught that we should forgive, but I am really struggling with this. I am limited here. So in the meantime, Dr. Davis (Ortho) will have me do PT for the next week to see if that will help. He also told me to go back to Healion and have them order an MRI of my Spine since they were suppose to have done this last week but instead sent me to the hospital for a spinal tap. So my husband and I went back sat there again for 4 hours, to then be told to come back today and after the doctor talkked with the Ortho doc they would decide on the MRI or not. We were furious that again we sat there while I was in so much pain, yet nothing was done to help me. My EKG's are abnormal, my labs are abnormal yet nothing done to help get to the bottom of it. Everyone is just passing the buck. I wasn't asking for pain meds, etc as these are not helping anyway, just for someone to do there job, take the MRI and give me some answers as to why this is happening. I have never had such severe pain in my spine like this. It hurts to walk and sit.
On top of everything they still can't figure out why my ears are plugged, and my white cell count is high. I feel hopless and lost. Last night I was in so much excruciating pain that I turned to my husband and point blank said I am done living this way and being in so much pain, and dealing with doctors who don't seem to know what to do except to leave me this way, that I would rather be dead. He could only reply with "Don't give up, you are loved" This was nice but love is not taking my misery away. Maybe it is my depression caused by the pain that is making me think that death would be better than a life of pain. I have no quality of life anymore. My children comment about it as well. Everyone is tired of this, but most of all me. I have caused sadness for my family, financial hardship, etc. This is my struggle, not theirs. It seems as if no one understands. I put on a good face for those who know me, as if I am o.k. but I truly am not.
This disease has taken over me, my life, and my family. I am now so very tired of fighting the fight and not going anywhere.
I pray very very often to give me the strength and to heal this pain, yet still no answers.
I have taken to set up my plans on my parting wishes, as I want to alleviate as much stress on my family as the time comes. My family does not deserve any of this.
I am met with roadblock after roadblock. I am just tired of all the pain and suffering this has caused.
On top of everything they still can't figure out why my ears are plugged, and my white cell count is high. I feel hopless and lost. Last night I was in so much excruciating pain that I turned to my husband and point blank said I am done living this way and being in so much pain, and dealing with doctors who don't seem to know what to do except to leave me this way, that I would rather be dead. He could only reply with "Don't give up, you are loved" This was nice but love is not taking my misery away. Maybe it is my depression caused by the pain that is making me think that death would be better than a life of pain. I have no quality of life anymore. My children comment about it as well. Everyone is tired of this, but most of all me. I have caused sadness for my family, financial hardship, etc. This is my struggle, not theirs. It seems as if no one understands. I put on a good face for those who know me, as if I am o.k. but I truly am not.
This disease has taken over me, my life, and my family. I am now so very tired of fighting the fight and not going anywhere.
I pray very very often to give me the strength and to heal this pain, yet still no answers.
I have taken to set up my plans on my parting wishes, as I want to alleviate as much stress on my family as the time comes. My family does not deserve any of this.
I am met with roadblock after roadblock. I am just tired of all the pain and suffering this has caused.
Friday, January 18, 2008
Is no one listening?
the last 2 days I have been back and forth to the emrgent care cervices. I was told that my head CT looked the same. Because the radiologogy dept closed I was asked to return the following a.m. for an x-rays on my back and to check labs again as they discovered that my white blood count is up, but don't know why. (I had gone in with right face numbness, severe back pain, and headache.) So I show up bright and early yesterday morning. The docctor takes a look at me and says, he needed to call my Neurologist. He said he would be doing nothing until speaking to her. He did and a LP was recommended. I was told that they had an ambulance coming for me. I explained that I did not want a LP, as I was trying to see a Chiari Specialist and the info I have received says a LP can make the situation worse (further desending the tonsils) They wouldn't listen My keys were taken as they did not want me to drive as I was having some blurry vision. The ambulance came, as well as the fire dept. My keys were returned to me once I was strapped to the guerney. They took me to the hopsital. When I arrived I was told that I was there for a LP. I again expained my refusal. They again called my Neurologist. The ER doctor returned and checked my legs and my back. He then told me I needed to have an LP and that my Neurologist ordered it. I asked just for the MRI on my back, they still refused to treat my back.
SO .......
I just had a LP late last night at the ER. I have a slight headache still and my back pain iS worse. We fought against this and I lost. After trying to place a IV in me and blowing my veins 6 times, they finally got one in. They kept asking me why I was refusing the LP. I explained to them that I had been told that my cerrebellum tonsils have distended into my spinal cannal some (Chiari) and are compressed, and although my Neurologist could not officially diagnose me with it because she goes by th 5mm rule, and I am only 3. For people with Chiari it is advised not to have a LP done, until after seeing a Chiari speacialist. Were in the process now. So with all this said they gave me 3 mm Ativan, as they said I had alot of aniexty about the LP. I told them that I didn't want one still. After a while they said they were taking me to radiology to xray my back, (That is why I went) They had me get on the table, and the next thing I know they said they were giving me Versed. After about 5 min. I was out. (right prior to this they had me sign papers for my admittance. I woke up to find that they had gone ahead and done my spinal tap. I was furious! They then told me to relax, that my Neurologist had ordered it and felt that it was safe beceuase my tonsils were not herniated to 5mm. I felt so betrayed. I then asked about my back and the infection they said I had. They said they weren't sure about the infection, and didn't take xray of my back and at this time they were going to release me while they wait on my MS panel, and the spinal fluid. This was all crazy. How can they go ahead against you permission and do things like this. I had no fever, no stiff neck, etc to warrant a LP. They were fishing for what the cause is of the infection. And yet still no answers. I wast told to see my Neurologist today, yet she can't see me and sent a message through her nurse that she will call me later, but she won't have any results for several weeks. Great! What about my spine and back pain? And now I am left with the worst spinal headache.
Today now I sit in pain further pain.
SO .......
I just had a LP late last night at the ER. I have a slight headache still and my back pain iS worse. We fought against this and I lost. After trying to place a IV in me and blowing my veins 6 times, they finally got one in. They kept asking me why I was refusing the LP. I explained to them that I had been told that my cerrebellum tonsils have distended into my spinal cannal some (Chiari) and are compressed, and although my Neurologist could not officially diagnose me with it because she goes by th 5mm rule, and I am only 3. For people with Chiari it is advised not to have a LP done, until after seeing a Chiari speacialist. Were in the process now. So with all this said they gave me 3 mm Ativan, as they said I had alot of aniexty about the LP. I told them that I didn't want one still. After a while they said they were taking me to radiology to xray my back, (That is why I went) They had me get on the table, and the next thing I know they said they were giving me Versed. After about 5 min. I was out. (right prior to this they had me sign papers for my admittance. I woke up to find that they had gone ahead and done my spinal tap. I was furious! They then told me to relax, that my Neurologist had ordered it and felt that it was safe beceuase my tonsils were not herniated to 5mm. I felt so betrayed. I then asked about my back and the infection they said I had. They said they weren't sure about the infection, and didn't take xray of my back and at this time they were going to release me while they wait on my MS panel, and the spinal fluid. This was all crazy. How can they go ahead against you permission and do things like this. I had no fever, no stiff neck, etc to warrant a LP. They were fishing for what the cause is of the infection. And yet still no answers. I wast told to see my Neurologist today, yet she can't see me and sent a message through her nurse that she will call me later, but she won't have any results for several weeks. Great! What about my spine and back pain? And now I am left with the worst spinal headache.
Today now I sit in pain further pain.
Wednesday, January 16, 2008
My Daily Battle and Upcoming Ones
It started again last night. The ever pounding pressure like headache. The pressure behind my left eye. Although I have lost sight in it already, it still has much pressure behind it. I took a Dilauded for the pain as it stretched and expanded from my brain down my spine. It hurt to lay down but was much worse sitting up. The Dialauded took barely the edge off the pain but had a tendency to also finally get me a little sleep. I woke up exhausted, and knowing that I had 4 kids to get to school. My task was barely accomplished, yet even my 7 yr. old understood my condition, and got himself ready and fed. I am so proud of him yet so saddened that this illness also takes allot from him as a child. Sometimes he has to do more than any 7 yr. old should.My 7 yr. old is very caring, and although he likes to be comforted, and is a snuggle bug, he likes to give the same back to me.I have slept most of today, due to the nausea, palpitations, chest pain, and numbness down my face. It feels as if someone is pressing down on the top of my head and cramming it into my spine. My ears are ringing as well.Yet with all of this I find myself trying several times today trying to sit up for a few minutes and accessing the Internet to continue to research and find answers to my illnesses so that I may find a cure.Tomorrow will be the 1 yr. mark of my father-in laws suicide. I am praying that I will be in less pain to be their for my family and to comfort them, and myself. I was very close to him as well. I adored him. I took his death very hard. He had been placed on a medication for depression called Lexapro. He had only been on it for about 1 week and decided he didn't like the side effects, so just stopped and 2 days later went to his favorite place with his 2 best hunting dogs, shot them both, and turned the gun on himself. There is nothing worse than having a coroner at you door giving you the news. I collected his personal effects including the gun. Because of my husbands emotional state at the time, I kept the gun that was wrapped in a brown paper bag and hid it from him until the following morning. I knew he would look in the safe so I left with it under my pillow as to keep it safe from my husband and children. The next morning I took it to my friend who is a firearm dealer and asked him to assist me in cleaning it up( It was a bloody mess) He agreed to as my husband and his brothers wanted it so that they could dismantle it and destroy it. I think it was part of their own closure. So I never wanted them to see it in its last condition. Tomorrow will be hard for many. 2 days after his death we went to the lake and I had each member of the family write a message to him on a 3x5 card, and we attached each to a balloon and let them go. This was to help my children with grieving and trying to remember the good things about their grandpa. We will again do this tomorrow, as we do for holidays, etc.I have set my husband up for a massage tomorrow (A Christmas present from last year)to help with tension and stress that tomorrow will be for him. I wish I could endure one myself, but to be touched hurts.Well I am off for now as back to lying down I go.
Labels: brain, dilaudid, family, headaches, Lexapro, numbness, ringing in ears, spine
Labels: brain, dilaudid, family, headaches, Lexapro, numbness, ringing in ears, spine
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