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.