Isn't that what all of sick people out there are trying to find; a cure, or a way to make life manageable?
Illness doesn't really show any racism, it hits us all hard. maybe in different ways, but we all go through the same stages of pain before we get to realization, denial, anger, or grief are some of the steps we have to take if we have a painful chronic disease, or a deadly illness.
We all have to find our own way to fight. and some times we give up for a couple of hours or days, and then we pick ourselves up again and start over. not one of us will give up without a fight, and we can't, if you have a bad day think of the people around you. and fight for them.
The worst for me when I was going to be put on a respirator was that if I died? How could I be there for them? And to say that it is okay? To give them a shoulder to cry on? When I was on that respirator I didn't fight for me, i fought for them...
I knew that they could live without me, but I couldn't be the reason for their pain, because I gave up.
That's what I did, and keep doing.
Tuesday, December 7, 2010
4 were are we going
Today i finally got an appointment to the Pain clinic on the 14 of December, and I am hoping with every bone in my body that they will find a way to make my pain less, so I can live a little more. I am starting to get tired of this couch. and I wanna decorate the house for Christmas, and eat without fear.
To have a disease that makes you scream by just swallowing food, liquids, and my own saliva. do I have to be scared to eat for the rest of my life? And I never know when the esophagus spasms are coming. sometimes I don't even have to eat anything.
what I would like is to talk to others that are in the same situation, and what has helped for them, or if they are in my position: maybe we could help each other. There has to be something out there that can help, but where? even if you don't have spasms but have found some coping techniques for living with chronic diseases?
Its not easy reading articles from different countries with Google translator... it's not always precise.
To have a disease that makes you scream by just swallowing food, liquids, and my own saliva. do I have to be scared to eat for the rest of my life? And I never know when the esophagus spasms are coming. sometimes I don't even have to eat anything.
what I would like is to talk to others that are in the same situation, and what has helped for them, or if they are in my position: maybe we could help each other. There has to be something out there that can help, but where? even if you don't have spasms but have found some coping techniques for living with chronic diseases?
Its not easy reading articles from different countries with Google translator... it's not always precise.
4 Desember!
December has always been my favorite month. I love snow, shopping presents, decorating, candles, Christmas trees and I love that even though all of (us) kids have grown up, we still go around the Christmas tree. and we still open one present at a time. Christmas eve is the one day a year you have all the time in the world. We would open presents all night long if that what it takes. One Christmas we used 6 hours, but we had a lot of fun during those six hours. and I love all the typical Norwegian foods and drinks we have this month.
It has always been the time of year where my boyfriend and I gather all of our friends and have a Christmas party with good food and a lot of aquavit. Sometimes we can even take a little walk on the lake, or just walk late at night while it's snowing. Some of us girls have taken the ferry to Denmark to party, and just being the girls. that was supposed to be last weekend and I cant really make any plans with my health. so maybe next year. and the Christmas party was going to be this weekend, but that will not happen until next year.
Oh well on too a totally different topic: The cold is the only thing I am not too happy about. But when you live in Norway, you get used to it or move. it's really not that a difficult decision. I have sometimes played with the idea of moving somewhere warmer, but my family and my friends mean too much to me.
If you are as lucky as I in both of those categories you'd stay right where you are too.
And isn't that what matters in life? A strong tied family, good friends, and for me: a good show on the TV, or a good book. and of course travel. learning new cultures, and meeting people at the place they are in there life, because we influence people all the time, and maybe most when we don't even think about it.
I have always had this philosophy, that every person that walks by me, I either smile to them or say hello and smile, because I don't know what that person goes through, and if my smile can make someone else smile one time that day, or maybe changes their state of mind, well I would like to think that I have made a difference at the end of my life.
You don't really have to be the president to change the world, it is the small things us "meaningless" people do that makes the world into good neighborhoods, and communities. because most of us can't see the whole world, its too big, so we just try to see what we can change in the area we spend most of our life in.
It has always been the time of year where my boyfriend and I gather all of our friends and have a Christmas party with good food and a lot of aquavit. Sometimes we can even take a little walk on the lake, or just walk late at night while it's snowing. Some of us girls have taken the ferry to Denmark to party, and just being the girls. that was supposed to be last weekend and I cant really make any plans with my health. so maybe next year. and the Christmas party was going to be this weekend, but that will not happen until next year.
Oh well on too a totally different topic: The cold is the only thing I am not too happy about. But when you live in Norway, you get used to it or move. it's really not that a difficult decision. I have sometimes played with the idea of moving somewhere warmer, but my family and my friends mean too much to me.
If you are as lucky as I in both of those categories you'd stay right where you are too.
And isn't that what matters in life? A strong tied family, good friends, and for me: a good show on the TV, or a good book. and of course travel. learning new cultures, and meeting people at the place they are in there life, because we influence people all the time, and maybe most when we don't even think about it.
I have always had this philosophy, that every person that walks by me, I either smile to them or say hello and smile, because I don't know what that person goes through, and if my smile can make someone else smile one time that day, or maybe changes their state of mind, well I would like to think that I have made a difference at the end of my life.
You don't really have to be the president to change the world, it is the small things us "meaningless" people do that makes the world into good neighborhoods, and communities. because most of us can't see the whole world, its too big, so we just try to see what we can change in the area we spend most of our life in.
Sunday, December 5, 2010
2 today has been a good one...
I have had 2 good friends who came to visit me and gave me a lovely flower bouquet. one of them, have a little baby that is 5 months old.
It's nice to see people, and not get to isolated, when you are in pain, but think about it for yourself? how would you deal with overpowering pain? We all think we are so strong but when all comes to all, it's okay to not be so strong, and ask for help. Being in pain is no way to live, been drugged down so much that you just sleep all the time, is not a way to live either. The doctors have to find the golden midway. What is hardest is that I really don't want to go on any medicine at all, I just want the doctors to get off their asses and cure me.
Aren't the flowers pretty?
It's nice to see people, and not get to isolated, when you are in pain, but think about it for yourself? how would you deal with overpowering pain? We all think we are so strong but when all comes to all, it's okay to not be so strong, and ask for help. Being in pain is no way to live, been drugged down so much that you just sleep all the time, is not a way to live either. The doctors have to find the golden midway. What is hardest is that I really don't want to go on any medicine at all, I just want the doctors to get off their asses and cure me.
But this has been one of the better days i have had, and comments that I am becoming a junky, it's really not necessary. Would that person have said that if I were fighting cancer? Or any other known diseases that we know are painful. that's what is the hardest. Nobody believes you because they don't know the disease and how much this hurts.
It's not a good feeling to hope that you could have an illness (like cancer) that there is a hope that you can be cured. Because this is the problem. They can't cure me, so how do you people out there think I should grab this "state" am in?We are looking at every single website we can find. We have bought the latest research on esophagus spasms, we are trying alternative, and experimental treatment. but none of this will make me healthy, it will only make the symptoms less visible.
So for all of you out there who thinks all I will become is a junkie, come on.... either give me some hope that can give me a chance to find a cure, or stop being so judgmental!
Aren't the flowers pretty?
2 what a day.........
I am still on my strict regime to use less pain killers. but today this went to hell. My pain just grew and the spasm came more often and stronger each time.
I am so lucky that I have a nurse that comes home to me every day to see how I am doing. And today she said that this can't go on any longer. It's tormenting to have me lying at home in this much pain.
So we called the hospital, but of course they needed the nurse to call them. And tell that we didn't lie.
Again you are always being seen as this person fishing to get more drugs. for the F..ing last time. Do they really think that I would choose this life? Seriously..??
But as long as you have a condition that is not mainstream you are stamped as a drug addict. Just because you are in pain that the doctors can't fix with surgery or a magic pill. It's easier to say that you are addicted to the stuff, even if you have just used it for 2 days. that doesn't matter. They have to have something on you, to use against you if they want to try something that everyone with a brain will understand would help the situation (condition)
My mom has always taught me to respect doctors, police officers etc, but how about you doctors start to see that you are working with humans, and listen to us. And admit that you don't know everything. We do respect you too, but don't start lying, when we know a lot about the condition. i think it's sad that I cant respect or trust doctors anymore.
But when we got there it was like a ghost town. The emergency room was empty. and it still took 4 hours before my pain was at a low enough level so we could go home.
But the snowy, icy weather might have something to do with why people are staying home tonight.
Stay under your quilts and use that someone special to keep warm
I am so lucky that I have a nurse that comes home to me every day to see how I am doing. And today she said that this can't go on any longer. It's tormenting to have me lying at home in this much pain.
So we called the hospital, but of course they needed the nurse to call them. And tell that we didn't lie.
Again you are always being seen as this person fishing to get more drugs. for the F..ing last time. Do they really think that I would choose this life? Seriously..??
But as long as you have a condition that is not mainstream you are stamped as a drug addict. Just because you are in pain that the doctors can't fix with surgery or a magic pill. It's easier to say that you are addicted to the stuff, even if you have just used it for 2 days. that doesn't matter. They have to have something on you, to use against you if they want to try something that everyone with a brain will understand would help the situation (condition)
My mom has always taught me to respect doctors, police officers etc, but how about you doctors start to see that you are working with humans, and listen to us. And admit that you don't know everything. We do respect you too, but don't start lying, when we know a lot about the condition. i think it's sad that I cant respect or trust doctors anymore.
But when we got there it was like a ghost town. The emergency room was empty. and it still took 4 hours before my pain was at a low enough level so we could go home.
But the snowy, icy weather might have something to do with why people are staying home tonight.
Stay under your quilts and use that someone special to keep warm
Saturday, December 4, 2010
2 what now
i have tried pills Adalat no effect, Viagra(Sildenafil) no effect, in any way at all. you get where i am going, they have tried Botox 4 times, 2 times successful, and 2 times not the improvement that we had hoped for. i have taken stesolid, ketorax IV, morphine IV (stopped using morphine IV cause I had an allergic reaction), antidepressants, oxyContin, ketalar, ketroax PCA pump, nitroglycerin(1, 2), ketogan, lyrica, neurontin, epidural and a whole lot more i can’t even remember. but look at the bright side, who else have gotten the government to pay for Botox and Viagra??
i have tried acupuncture (see bottom of the page), 3 drops of peppermint oil in a glass of water, Oliclinomel, and i am going to try hypnosis to better deal with the whole pain situation. i am willing to try everything, and when you end up in my position you have to try everything, or you have lost. I also go to a psychologist; you have to treat your whole body, not just the physical but also the psychic part. everything goes together.
Of course there are days that i crawl under my blankets and want to stay there forever, but that is a part of the healing process. to come to terms with the fact that this is permanent, but i am far from coming to terms with it, hell no....
but i can’t keep doing this everything is perfect to friends and family, i have to change, i have this problem that i don’t want people to see that i am sick, but how can people be considerate if they don’t know that i am having a bad day. my only fear is that they will see it as irritating and not just me being sick me. we have to work on that one.
I must do this for me, and only me, and don’t feel guilty because i cant just do things impulsively. i have medicines and energy level to take into account when i say yes or no to something. and i guess i cant feel guilty if i don’t have the energy to do everything.
but i always feel guilty if i don’t give a 110% for someone else, i live to help others, probably why i joined the red cross to help. it gives me more, then i think i give them, but still, i have to learn to say NO, but how do i do that without feeling bad? i wanna make people feel good... without draining myself of energy
i have tried acupuncture (see bottom of the page), 3 drops of peppermint oil in a glass of water, Oliclinomel, and i am going to try hypnosis to better deal with the whole pain situation. i am willing to try everything, and when you end up in my position you have to try everything, or you have lost. I also go to a psychologist; you have to treat your whole body, not just the physical but also the psychic part. everything goes together.
Of course there are days that i crawl under my blankets and want to stay there forever, but that is a part of the healing process. to come to terms with the fact that this is permanent, but i am far from coming to terms with it, hell no....
but i can’t keep doing this everything is perfect to friends and family, i have to change, i have this problem that i don’t want people to see that i am sick, but how can people be considerate if they don’t know that i am having a bad day. my only fear is that they will see it as irritating and not just me being sick me. we have to work on that one.
I must do this for me, and only me, and don’t feel guilty because i cant just do things impulsively. i have medicines and energy level to take into account when i say yes or no to something. and i guess i cant feel guilty if i don’t have the energy to do everything.
but i always feel guilty if i don’t give a 110% for someone else, i live to help others, probably why i joined the red cross to help. it gives me more, then i think i give them, but still, i have to learn to say NO, but how do i do that without feeling bad? i wanna make people feel good... without draining myself of energy
2 my day..... how was yours?
Life isn't always bad, I had a visit from my grandparents who I love dearly. and then my friend Elisabeth stopped by for some good girl talk, i really need to get some things off my chest, and I cant write it all in this blog.
Then a good friend of my stopped by to see how I was doing, but tonight has been very painful.
I have basically been lying in fetus position all night. the f***ing spasm are of course coming back now that my fentanyl patch is in a smaller strength. if you think that the pain isn't there it won't be there. what a load of crap! I have prayed many times and hoped that my back pain would go away, but I have still not seen such luck. don't get me wrong, I do believe in the power of trying and not giving up. I should not be doing all the things that I do, but I am, not now, not ever am I giving up. I am going to get a life.
Think about that for a second, what do you really want with your life? work? husband? wife? kids? house? pet? what are your hobbies? take a minute to think what you can do today to get the life you want, that you maybe have pushed far back in your brain, and think what you can do today to get one step closer to that dream.
But remember, don't only dream for you, do it for those around you that you love, maybe they need help to achieve their dream. I know it's a cliché, but none of us know when a serious illness will strike, or worse.
I have lived with illness all my life, but to get a new one when you are an adult it really throws you. and esophagus spasms as strong as i have is like having a cramp in your calf and multiplied that by ten, with no way to get it to let go. how am I meant to live with this? how can they give me up?
And the worst is that they are saying if I had cancer or was older they would ease my pain. what does having a known disease and old age have to do with pain? so i cant have pain because I am young? so because I am young I have to live a painful life just because of my age? and that life without help, will be a life in torture every day, eating will be a nightmare, and life will not be living, just existing!
Then a good friend of my stopped by to see how I was doing, but tonight has been very painful.
I have basically been lying in fetus position all night. the f***ing spasm are of course coming back now that my fentanyl patch is in a smaller strength. if you think that the pain isn't there it won't be there. what a load of crap! I have prayed many times and hoped that my back pain would go away, but I have still not seen such luck. don't get me wrong, I do believe in the power of trying and not giving up. I should not be doing all the things that I do, but I am, not now, not ever am I giving up. I am going to get a life.
Think about that for a second, what do you really want with your life? work? husband? wife? kids? house? pet? what are your hobbies? take a minute to think what you can do today to get the life you want, that you maybe have pushed far back in your brain, and think what you can do today to get one step closer to that dream.
But remember, don't only dream for you, do it for those around you that you love, maybe they need help to achieve their dream. I know it's a cliché, but none of us know when a serious illness will strike, or worse.
I have lived with illness all my life, but to get a new one when you are an adult it really throws you. and esophagus spasms as strong as i have is like having a cramp in your calf and multiplied that by ten, with no way to get it to let go. how am I meant to live with this? how can they give me up?
And the worst is that they are saying if I had cancer or was older they would ease my pain. what does having a known disease and old age have to do with pain? so i cant have pain because I am young? so because I am young I have to live a painful life just because of my age? and that life without help, will be a life in torture every day, eating will be a nightmare, and life will not be living, just existing!
Friday, December 3, 2010
4 my f**ing luck
Today I got a nice letter in the mail that told me I have irregular cell division in my cervix and it's so big that they have to go in and cut out the part that have the irregular cell division, and send it away to see if there are some cancer cells. So the 15 of December is the d-day for the surgery. Here i go again.
A friend of mine said today that I should postpone the surgery until after Christmas, he said you know it will go wrong, it always goes wrong with you baby.
It sucks to always be the person that everything goes wrong with, why cant I be the lucky one? I have said the last year that when I turned 30 that my luck would turn as well, but do I have the time to wait until I turn 30? Now that something is wrong with my cervix, it seems that nothing is going my way.
I did what a lot of girls do in that kind of situation: major shopping spree, got some good holiday presents, and some nice stuff for my guy, cause he is the best one in the world. I love him with every bone in my body, that idiot... but he is my idiot. and he will be that all my life as they say, ring or no ring, that's not what matters. It's only the feeling we carry around in our hearts..
A friend of mine said today that I should postpone the surgery until after Christmas, he said you know it will go wrong, it always goes wrong with you baby.
It sucks to always be the person that everything goes wrong with, why cant I be the lucky one? I have said the last year that when I turned 30 that my luck would turn as well, but do I have the time to wait until I turn 30? Now that something is wrong with my cervix, it seems that nothing is going my way.
I did what a lot of girls do in that kind of situation: major shopping spree, got some good holiday presents, and some nice stuff for my guy, cause he is the best one in the world. I love him with every bone in my body, that idiot... but he is my idiot. and he will be that all my life as they say, ring or no ring, that's not what matters. It's only the feeling we carry around in our hearts..
Wednesday, December 1, 2010
0 christmas shopping
Today my parents took me out for some shopping to get out of the house. I always get shocked by how many people I have to buy gifts for. but I am over halfway there. so that's a start.
A shopper as I am, I ended up buying new winter shoes for me. New indoors shoes, two tights, new sheets for the bed, and mittens. I can never shop for only what I set out to buy.. I think it is a disease, my brain looses all focus.
I have to make lists with who I am buying for, what I am getting them, and who remains, or I will buy several things to every person.
My brain doesn't work with this Lyrica pills. I walk like I am drunk even though my brain is clear, so high heeled shoes are a no, no. unless i wanna stay a night on a drunk cell, because i have no chance at walking on a straight line. So Lyrica makes you feel like an alcoholic. I hope that someday a drug comes on the market that could help me and others like me to have a normal life as possible, because to live like this it is the same as not living at all. I sleep all the time, I cant follow a conversation, I lie crying in pain, I can eat 2% of what exists on the marked, and all I want is to go to school, get my education, and start teaching. and also get back to the red cross and help those who need help. I want my life to have purpose again.
A shopper as I am, I ended up buying new winter shoes for me. New indoors shoes, two tights, new sheets for the bed, and mittens. I can never shop for only what I set out to buy.. I think it is a disease, my brain looses all focus.
I have to make lists with who I am buying for, what I am getting them, and who remains, or I will buy several things to every person.
My brain doesn't work with this Lyrica pills. I walk like I am drunk even though my brain is clear, so high heeled shoes are a no, no. unless i wanna stay a night on a drunk cell, because i have no chance at walking on a straight line. So Lyrica makes you feel like an alcoholic. I hope that someday a drug comes on the market that could help me and others like me to have a normal life as possible, because to live like this it is the same as not living at all. I sleep all the time, I cant follow a conversation, I lie crying in pain, I can eat 2% of what exists on the marked, and all I want is to go to school, get my education, and start teaching. and also get back to the red cross and help those who need help. I want my life to have purpose again.
2 perfect system
Today my home nurse should have been here, but of course she was not. maybe the hospital has forgotten to call them. It wouldn't be a surprise.
I have been awake for 4 hours today. they have given me strong sleeping pills so i will sleep and can't complain about the pain. i don't understand them at all. Why not give me the medication that will keep me pain free and awake? So this is the good life they were talking about? the life that would do so i could live almost normal?. I am so sick of this “normal” term, there is nothing normal about being sick.
I have been awake for 4 hours today. they have given me strong sleeping pills so i will sleep and can't complain about the pain. i don't understand them at all. Why not give me the medication that will keep me pain free and awake? So this is the good life they were talking about? the life that would do so i could live almost normal?. I am so sick of this “normal” term, there is nothing normal about being sick.
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