Many may wonder why I have not updated in so long. The short story is nothing and everything is constantly changing, and you finally give into the fact you have no control over your life because its constant, like water is fluid, that is how your life is, although it does not flow so well. But I will give you the long story to give more of an idea.
Last time I updated, my heart was not in it. I was not getting what I needed here at the time. But you know what ? Just when I think I dont need my blog, I do and here it is. So here I am as well.
I have not done an update since last November and while many things have changed, many have stayed the same. First I will start with the medical and get that out of the way, so that I can then get to the personal, which I think is by far more intesersting, well at least to me because quite honestly, my medical is the worse part of my life and I dont like to dwell on it any more then I already do, I mean I live it every day so how much more do I need right?
Thankfully I have not been in the hospital for a few months, but I do still end up there occasionally from infection, whether it be staph, Klebselia or some other foreign named infection I know nothing about other than the fact that it can make you go septic and almost kill you very very fast. Infection you learn is a part of this life, and you finally have to accept it whether you want to or not, it will be there at some point or another.
Not only is infection a part of your life forever, but so is pain, spasms, electric jolts, Not being included by other to participate in activities that all your friends can do because of your disability. There are so many things that you have to learn to live with, and the learning is what takes the longest, because just when you think you have control there is something hiding right around the corner new that you have to learn to deal with. Its an ongoing cycle that never ends, kind of like this blog. It could last forever, or as long as I live. That is what CES is, its uncertainty, never knowing what is next but just hoping and praying that somehow someway, you will find just a nugget of happiness that rarely comes.
I have to be honest and say the reason I have stayed away from my blog, was because it makes me cry, alot. Because I read it and I get angry all over again, and that is not good for me, not with everything I already deal with.
My feet are getting much worse, and some days its so so hard to walk. I hate that those spasms keep me up at night and they are now moving up my calves. I wonder if some day I will lose all function, but again its an unknown and no one has any answers for me. Yesterday was the first day I had gone for a walk in weeks because of another staph infection, and today I can hardly move, but that is the price I pay just to be outside. I decided to move to a new location to have a new start, stupidly thinking that would make some kind of difference, but guess what? I still have CES. I may have ocean views, live close to family, and anyone else would feel so lucky to be where I am, but its hard to enjoy with this hanging over my shoulder every day. Its almost like a tease some days, saying look at what you could have enjoyed, but you cant because you have CES, its just not fair.
I have also started to experience these really scary headaches. They are called Ocular headaches, and no one can tell me why I get them, but I never had them in my before life. They dont have pain, but what they do have are blinding flashes on my complete left side in both eyes, to where it pretty much leaves me with left side blindness. The only answer is to lay down and hope for it to stop. Sometimes I can get them under control quickly with medication, but sometimes they last up to an hour or more and are extremely scary, because even with my eyes closed I still see the flashing. I am told they are caused by nerves so to me, its another thing added to my CES symptoms.
I had my grand daughter over for a sleep over last week, and I was so excited. I had prepared the extra room especially for them, fit for little princesses, and it took me months due to my slow pace at getting things accomplished, and it was to be her first sleep over at my new home. Well right in the middle of us having fun, on came the headache and I was done for the night. I had to explain to her that Nana had to lay down, and her grandpa would have to play with her for the rest of the night. By the next morning my daughter had already picked her up, so that was it for me, a great big failure. The way I feel so often, like I am a failure because I cannot participate in the simplest of things.
There are other things that happen which may or may not be fair, but its the way I react to certain situations, and its the way they are in my life. Like take yesterday which is a perfect example. It was my anniversary with my husband (who by the grace of god is still here) and I cooked him a nice dinner (which if you dont know, that is another one of those things that is still difficult for me to accomplish because of pain). Somehow we got on a stupid conversation, where he told my daughter that he cooked the dinner with me, which was not true. I was so proud I had cooked him dinner and there he was taking the credit, stupid right? In a normal situation I would not have even reacted but because it is such a rare occurrence, and I have so few things to feel proud of, I got really angry, which started a huge argument between the two of us. He then (and I think he said it because he knew it would hurt) says to me " Look at all the things I have to do in my life to help you?", Wow really, were going there? He had just ruined this illusion I had that there were two people in my life at least who still seen me for who I used to be and not who I was now, but there you have it.
What is really amazing, is he could not understand how that comment hurt? How could it not? I guess I had blinders on for over the last 3 1/2 years, because for some reason I thought he could see past the CES, who was I fooling? Apparently, he might still love me, but he does not love CES, NEWSFLASH NEITHER DO I !!!!!!!!!!!!!!!!!!!!!!!!.
So Yea this is what has been going on with me, a lot of this, and it gets monotonous, to feel like you repeat yourself over and over again, yet nothing changes, and everything changes, where is the train stop because I want to get off now please. I would like to get a ticket back to my old life and be me again. You know what is the worst? The worst is when you are finally getting good sleep, and you are actually having a good dream, where you can feel a mans touch, you can feel your whole body and everything works perfect, and then you wake up :( You wake up and realize your still the same screwed up person you were when you went to sleep that is the worst, because it reminds you of who you were and who you will never be again.
Wow by all of this writing, it looks like I needed my blog as much as my blog needed me and hopefully it helps someone else out there as well.
Monday, July 23, 2012
Friday, November 25, 2011
Its been a long time and I have been MIA
Well dear blog, as you can see I have been neglecting you :(
There just has been so much going on lately and its really hard to keep up. I have been in and out of the hospital, have had really severe infections, such as an abscess the size of a baseball in my bladder due to my supra pubic catheter, although I did not feel it till I went septic. Been dealing with hopefully finallizing my legal battles because of this damage, and hope that someday someone can stop the doctor who creates this misery.
I am just trying to hang on by a thread, and trying to get my health back but its been very trying at times, and right now is one of them. I have had IV treatments for the 7 days of two different antibiotics and am hoping it is just being a delayed reaction that it does not feel as though they are working. If they dont and it comes down to the suprapubic catheter repeating the same staph again, I am not sure what options are left for me to control the infections.
It just seems to get more and more complicated, and I dont know what will become of me or how long I will last. I am in a very bad state mentally right now because of feeling so crappy, and I am hoping something will change for the better so that I can have some kind of hope.
For those that are considering tarlov surgery please please get several opinions and really think about what it can do to your life, as mine as I knew it has been destroyed and I know I cannot go back and it will not get better. That is my reality right now and its very hard to live with. So much so that I really cant think of anything to write because it would just all be bad and make you all reading this blog join my circle of pain and misery.
I really really hate that I was tricked into this decision of surgery and have wished thousands of times if only I could go back, but I cant and its what I have to live with now. Really take this seriously, its no joke, it can ruin you forever.
There just has been so much going on lately and its really hard to keep up. I have been in and out of the hospital, have had really severe infections, such as an abscess the size of a baseball in my bladder due to my supra pubic catheter, although I did not feel it till I went septic. Been dealing with hopefully finallizing my legal battles because of this damage, and hope that someday someone can stop the doctor who creates this misery.
I am just trying to hang on by a thread, and trying to get my health back but its been very trying at times, and right now is one of them. I have had IV treatments for the 7 days of two different antibiotics and am hoping it is just being a delayed reaction that it does not feel as though they are working. If they dont and it comes down to the suprapubic catheter repeating the same staph again, I am not sure what options are left for me to control the infections.
It just seems to get more and more complicated, and I dont know what will become of me or how long I will last. I am in a very bad state mentally right now because of feeling so crappy, and I am hoping something will change for the better so that I can have some kind of hope.
For those that are considering tarlov surgery please please get several opinions and really think about what it can do to your life, as mine as I knew it has been destroyed and I know I cannot go back and it will not get better. That is my reality right now and its very hard to live with. So much so that I really cant think of anything to write because it would just all be bad and make you all reading this blog join my circle of pain and misery.
I really really hate that I was tricked into this decision of surgery and have wished thousands of times if only I could go back, but I cant and its what I have to live with now. Really take this seriously, its no joke, it can ruin you forever.
Wednesday, August 31, 2011
I have been focused so much on my pain and what this spinal injury has done to me, I forgot about taking care of my marriage.
Wow what a surprise, now my marriage is in jeapordy all because of one doctor who thought they could lie and do a surgery that ruined most of my life. What I overlooked was the part of my life he had not yet completely destroyed, and it may be moving that direction. I realized right upon waking from surgery that I could not feel touch in my private areas, and we have lived without intimacy for almost 3 years, which everyone knows is so important in a marriage, and lets just say we were very active in that department before this all happened with this surgery..
I just realized tonight the real damage it has done to my relationship with my husband as well. I figured that since he never mentioned it, that at least that part of my life was still good. That was not the case, he was just very good at holding his emotions in. I can tell he is trying his best to be a loyal husband and stick to his vows, but it might be getting to be to much even for him. I guess it just takes the time to get to that boiling point till you really find out the true status of your marriage. I found that I am not the wife I thought I was even though I have been damaged permanently, that inside I have changed so much mentally that I have become a difficult person to live with as well. I can only imagine what it is like for him, and I cant say I blame him.
What concerns me in this place we are in, is what if it does end? Then what happens to me. He has taken care of me, he has supported me, his insurance has paid my medical bills. He has cleaned up all the mess from my bowels as they lose control, listened to me cry in the night, I guess there is only so much a person can take. We agreed to try to make it work, but now I am very scared and so is he. He wishes he had his wife back and I wish I could give that to him.
How can one person so completely destroy not only one but two lives, by telling lies and destroying a body. How do they live with that? I would really like to know how he sleeps at night, knowing the destruction he has caused.
I am aware of the effects it could have on my husband, and I just hoped that he could handle it. That may not be so, because we have been fighting more and more lately and it seems like I am a big burden to him now, instead of the woman I was before, the one he would move the world for. I am lost right now and do not know what to do. I think about a future without him and it scares me because he is the one that takes care of me, I am a dependent on his insurance, what if that goes away ? Am I going to end up on medical with sub par care, just because of injuries I have now that I should never have to have to begin with? Its a very scary feeling and has been keeping me up night after night. Before I would wake him if I was in pain, now I am reluctant to do that, because I feel like I am already walking a tight rope with this and him.
I have all of the parts of me that have been destroyed, and now it seems that I could have the ultimate loss, the love of my life. This is so wrong and I am so angry that I have been put in this place, somebody has to make this right or who knows what will happen to me. Will I end up on like the homeless, with no where to go and no medical care that I so desperately need because now I am disabled and unemployable? It just keeps getting worse and worse and more and more scary. I do not know where my life will end up now and I dont know what to do about it. All I know is that I have never felt a more powerful anger and sadness at the same time.
I do understand where he is coming from and I have felt lucky he has been here this long. I mean who wants a wife that cannot have intimate relations because she cannot feel, and has to worry about the risk of infection? Who wants a wife that cannot take care of a home. Who wants a wife that can do barely anything a normal wife would do? There are so many better women out there, that are healthy and could be all of that but I have no hope of that ever again, none, and it makes me not want to go on. I know I will because I am a fighter.
I think the worst situation happened tonight because my daughter may have to move in with us, one nine month old and one five year old, and I think that is what has pushed him over. He already spends so much time and money taking care of me and my medical needs, taking on driving me to doctors appts., making me dinner, having to pay someone to clean because I cant, emptying my suprapubic catheter in the middle of the night, and now this just might be too much and it scares me to death. Hes at his breaking point with the anger and exhaustion, I can see it, and I dont know where it will go from here, but at this point it does not look good.
Dont get me wrong, hes a wonderful man, but really how much can one man expect to give an get nothing back. If the tables were turned I am not sure I could handle it either. I am just about done, and for the first time in my life, I dont know what will come next and that is frightening ..................................
I just realized tonight the real damage it has done to my relationship with my husband as well. I figured that since he never mentioned it, that at least that part of my life was still good. That was not the case, he was just very good at holding his emotions in. I can tell he is trying his best to be a loyal husband and stick to his vows, but it might be getting to be to much even for him. I guess it just takes the time to get to that boiling point till you really find out the true status of your marriage. I found that I am not the wife I thought I was even though I have been damaged permanently, that inside I have changed so much mentally that I have become a difficult person to live with as well. I can only imagine what it is like for him, and I cant say I blame him.
What concerns me in this place we are in, is what if it does end? Then what happens to me. He has taken care of me, he has supported me, his insurance has paid my medical bills. He has cleaned up all the mess from my bowels as they lose control, listened to me cry in the night, I guess there is only so much a person can take. We agreed to try to make it work, but now I am very scared and so is he. He wishes he had his wife back and I wish I could give that to him.
How can one person so completely destroy not only one but two lives, by telling lies and destroying a body. How do they live with that? I would really like to know how he sleeps at night, knowing the destruction he has caused.
I am aware of the effects it could have on my husband, and I just hoped that he could handle it. That may not be so, because we have been fighting more and more lately and it seems like I am a big burden to him now, instead of the woman I was before, the one he would move the world for. I am lost right now and do not know what to do. I think about a future without him and it scares me because he is the one that takes care of me, I am a dependent on his insurance, what if that goes away ? Am I going to end up on medical with sub par care, just because of injuries I have now that I should never have to have to begin with? Its a very scary feeling and has been keeping me up night after night. Before I would wake him if I was in pain, now I am reluctant to do that, because I feel like I am already walking a tight rope with this and him.
I have all of the parts of me that have been destroyed, and now it seems that I could have the ultimate loss, the love of my life. This is so wrong and I am so angry that I have been put in this place, somebody has to make this right or who knows what will happen to me. Will I end up on like the homeless, with no where to go and no medical care that I so desperately need because now I am disabled and unemployable? It just keeps getting worse and worse and more and more scary. I do not know where my life will end up now and I dont know what to do about it. All I know is that I have never felt a more powerful anger and sadness at the same time.
I do understand where he is coming from and I have felt lucky he has been here this long. I mean who wants a wife that cannot have intimate relations because she cannot feel, and has to worry about the risk of infection? Who wants a wife that cannot take care of a home. Who wants a wife that can do barely anything a normal wife would do? There are so many better women out there, that are healthy and could be all of that but I have no hope of that ever again, none, and it makes me not want to go on. I know I will because I am a fighter.
I think the worst situation happened tonight because my daughter may have to move in with us, one nine month old and one five year old, and I think that is what has pushed him over. He already spends so much time and money taking care of me and my medical needs, taking on driving me to doctors appts., making me dinner, having to pay someone to clean because I cant, emptying my suprapubic catheter in the middle of the night, and now this just might be too much and it scares me to death. Hes at his breaking point with the anger and exhaustion, I can see it, and I dont know where it will go from here, but at this point it does not look good.
Dont get me wrong, hes a wonderful man, but really how much can one man expect to give an get nothing back. If the tables were turned I am not sure I could handle it either. I am just about done, and for the first time in my life, I dont know what will come next and that is frightening ..................................
Saturday, August 13, 2011
So it seems I am going to lose my mind as well as the life I had before surgery
I dont even know how to start this blog post, as my mind cannot even function anymore due to the constant pain and the constant mental stress all of what is going on is causing me. I am thinking this next week I need to find a good psychiatrist, because I just cannot deal with this crap anymore on my own. I was not built to deal with people who don't care and don't take responsibility for their actions. I am going to have a mental breakdown and I feel it coming. I really need professional help at this point on how to deal with it all, And I need a lot of it because I am at my breaking point now. And all is a lot of stuff. Its like the other side, yes the ones in my lawsuit have dug a very deep hole and threw me in it, and are slowly putting shovel after shovel of dirt in it, until they finally have me buried.
Today my husband gave me a new email that has more demands from the defense side. Seriously how much do you expect me to handle. I can hardly function each day as it is with all the pain you have caused me, that I get to live with for the rest of my life, due to the lies that were told to me to get me to consent to a surgery that destroyed my life. Well I cant do it, I don't even have the physical ability to look for all of this stuff you are demanding now, and my husband is going to have to take over because I just cant handle it anymore. You know what is really sad, is that he did not cause this you did, yet we are constantly being bombarded with demands for more documents, medical records, education levels, income paperwork, tell me do you want my first and only born child as well. My family did not cause this you did. Yet I yell at them and tell them not to even talk because I cannot even stand the sound of people talking my mind is so screwed up and when I get so stressed it makes the pain all the more painful by irritating my nerves.. I try so hard to be strong, to make it through each day, I have been trying to meet your demands no matter how much of a toll it takes on me mentally and pain wise. Its like it was not enough destroying my body and making me question why I keep going, do you know how many days I have thought of ending it all, but now it seems you are trying to take it all the way to the end and make me lose my mind of top of it all. PLEASE STOP before I go crazy.
I am surprised I still have a husband for what he has had to put up with since Jan 09. He has completely lost who I was, the wife he married, he now has this shell of a person who is in constant pain and cannot enjoy life with him, and I give him all the credit in the world that he is still here. I am not sure if I keep going the way I am, which is at a very high speed downhill, how long he will stay. Would that make you happy to know that not only did you destroy my body and my life, but you want to finish it off by destroying my family too because I take it out on them? I hate that I take it out on them because they are my anchors that have kept me here. If I had been alone, it might have been over a long time ago, because they keep me going, knowing I could never hurt them in that way. It is so so hard to keep this struggle going and to keep faith, with all that gets thrown my way as I try to just control the pain,
I have been trying to be the bigger person here, even though I suffer day in and day out, not talking about who did what, not naming names and hoping the legal system works, but I am losing that hope as it seems they are just taking advantage of it to make my life even more miserable than it already is, by demand after demand. The first year after this surgery in jan 09, I woke every day wanting to die because I could not imagine living the rest of my life with the damage that was done to me by you people. I thought I had learned to get my anger to a place and accept that this was my life now that I had to learn to live, but it just keeps getting worse and I do not know how much more I can take. That is why I am going to get help, to find a professional to talk to and hopefully talk me down from where I am, and how to cope with this all. Will you just finish this and stop trying to destroy me PLEASE. You know what is in those records and the medical Hell I have gone through since it happened, what more do you want?
I thought I was doing the right thing, by being quiet and keeping names out of this, and letting justice take its course, but I am wondering should this be the way I should handle this, or should I just put it all out there on all the different support forums for tarlov cysts and let people know the truth about what he does? Dont think that just because I have not been telling the world about what was done to me and the lies I was told makes me weak, what it does I thought was made me be the bigger person here, but eventually I will lose it, and I will not keep it a secret anymore. You are pushing me there, and it might not take much more for me to get there.
From now on I just cannot try to search for things that are from years ago, and control my pain and mental stability, so what ever my husband can find that is all there will be, because I cannot even think anymore without the anger coming back full force, and therefore irritating all those damaged nerves that send my pain out of control, which then puts me back in diapers and all the rest due to my body not being able to handle it. Do you know how it feels to take so many medications every day and the side effects it gives me just to survive each day? Well when my mind gets to this point, I hate to tell you but they don't work because the anger is too strong, which makes the pain too intense to control. Do you see by what I am writing I am now losing control, yes I am, so THANK YOU for that, I guess you just do not have hearts and that is a very sad thing. To destroy my body and who I was, and then do everything you can to also destroy a whole life completely.
Today my husband gave me a new email that has more demands from the defense side. Seriously how much do you expect me to handle. I can hardly function each day as it is with all the pain you have caused me, that I get to live with for the rest of my life, due to the lies that were told to me to get me to consent to a surgery that destroyed my life. Well I cant do it, I don't even have the physical ability to look for all of this stuff you are demanding now, and my husband is going to have to take over because I just cant handle it anymore. You know what is really sad, is that he did not cause this you did, yet we are constantly being bombarded with demands for more documents, medical records, education levels, income paperwork, tell me do you want my first and only born child as well. My family did not cause this you did. Yet I yell at them and tell them not to even talk because I cannot even stand the sound of people talking my mind is so screwed up and when I get so stressed it makes the pain all the more painful by irritating my nerves.. I try so hard to be strong, to make it through each day, I have been trying to meet your demands no matter how much of a toll it takes on me mentally and pain wise. Its like it was not enough destroying my body and making me question why I keep going, do you know how many days I have thought of ending it all, but now it seems you are trying to take it all the way to the end and make me lose my mind of top of it all. PLEASE STOP before I go crazy.
I am surprised I still have a husband for what he has had to put up with since Jan 09. He has completely lost who I was, the wife he married, he now has this shell of a person who is in constant pain and cannot enjoy life with him, and I give him all the credit in the world that he is still here. I am not sure if I keep going the way I am, which is at a very high speed downhill, how long he will stay. Would that make you happy to know that not only did you destroy my body and my life, but you want to finish it off by destroying my family too because I take it out on them? I hate that I take it out on them because they are my anchors that have kept me here. If I had been alone, it might have been over a long time ago, because they keep me going, knowing I could never hurt them in that way. It is so so hard to keep this struggle going and to keep faith, with all that gets thrown my way as I try to just control the pain,
I have been trying to be the bigger person here, even though I suffer day in and day out, not talking about who did what, not naming names and hoping the legal system works, but I am losing that hope as it seems they are just taking advantage of it to make my life even more miserable than it already is, by demand after demand. The first year after this surgery in jan 09, I woke every day wanting to die because I could not imagine living the rest of my life with the damage that was done to me by you people. I thought I had learned to get my anger to a place and accept that this was my life now that I had to learn to live, but it just keeps getting worse and I do not know how much more I can take. That is why I am going to get help, to find a professional to talk to and hopefully talk me down from where I am, and how to cope with this all. Will you just finish this and stop trying to destroy me PLEASE. You know what is in those records and the medical Hell I have gone through since it happened, what more do you want?
I thought I was doing the right thing, by being quiet and keeping names out of this, and letting justice take its course, but I am wondering should this be the way I should handle this, or should I just put it all out there on all the different support forums for tarlov cysts and let people know the truth about what he does? Dont think that just because I have not been telling the world about what was done to me and the lies I was told makes me weak, what it does I thought was made me be the bigger person here, but eventually I will lose it, and I will not keep it a secret anymore. You are pushing me there, and it might not take much more for me to get there.
From now on I just cannot try to search for things that are from years ago, and control my pain and mental stability, so what ever my husband can find that is all there will be, because I cannot even think anymore without the anger coming back full force, and therefore irritating all those damaged nerves that send my pain out of control, which then puts me back in diapers and all the rest due to my body not being able to handle it. Do you know how it feels to take so many medications every day and the side effects it gives me just to survive each day? Well when my mind gets to this point, I hate to tell you but they don't work because the anger is too strong, which makes the pain too intense to control. Do you see by what I am writing I am now losing control, yes I am, so THANK YOU for that, I guess you just do not have hearts and that is a very sad thing. To destroy my body and who I was, and then do everything you can to also destroy a whole life completely.
Thursday, August 11, 2011
I am losing faith in Humanity but I know and have try to believe that life is better than this
I have so much anger and torment in my life right now, and its so hard to keep on keeping faith that karma will even out for me. I know I am a good person and I dont deserve what I have been through or the life I have to live now, but it is what it is, and sometimes its just way to hard to handle.
These last few weeks have sucked me dry of emotion and strength and I am trying to be so strong, while continuously being pushed and pushed towards that edge of no return. I wont let them push me there though, I refuse. After yesterday it is harder than it has ever been since that spinal cord surgery that destroyed my life. I had to go and be examined by their neurologist for my injuries, and I don't know if it was the stress this caused for me, or the exam itself which included being poked with safety pins all over and around my surgical site that has caused the nerve pain to go out of control, but here I am at almost 12:30 wide awake being jolted left and right, like I am a piece of cattle and they are using a cattle prod on my private areas and down my legs, which hurts more then you can imagine.
Sometimes I wonder just how much a body can take, and I hope and pray that my body is strong enough to survive all of this pain and misery that it has brought into my life. Just please let me try to learn to live with this without overwhelming me with your demands. You know who you are, as I have no doubt you have found my blog (and no it is not anyone that is close to me, in fact it are those I wish to never know again) This part is for them. Do you know how you have destroyed my life? Do you have any idea what it is like to live this way, knowing how my life was before, and the happiness I had known, I wish you did, I wish you could have seen how happy I was before with my family an being normal, I wish you could experience just a small amount of what I go through on a daily basis now, then maybe you would have a little more compassion, but instead you are more worried about protecting yourself instead of putting yourself in my shoes. So now not only do I live with the pain and suffering, but I also have to live with your demands that cause extreme stress on me.
I have no time to enjoy my life, and could not even enjoy my life if I wanted to, you know why? Because its hard to do with all the pain and all the medications, and lack of sleep from being jolted awake each and every night from the pain and then on top of it having to deal with all of you. I am exhausted, I am broke down, yet you continue to bleed me till you think I will give up. Well I was strong before this, and I will continue to be strong until I feel that justice has been sought and met. It needs to stop and if you have any heart or soul at all you will consider what my life is like. Because its horrible but I keep on keeping on, just going day by day and hoping the next one will be better. So far that has not happened. This is for you, this is how you make me feel.
The Sorrow Of My Soul
The sorrow of my soul that is my life
Don't you know it Is tearing me apart
I wish I could make it all go away
That you would just have a a heart
It seems such a little thing to ask
To just let me live my life
To let have some privacy
Instead of all of this strife
How long can this keep this going on
do you think you can outlast me
The one thing I do have is strenght
No matter what that will always be
My body defies me day and night
Like its doing right now at this time
But even though you have destroyed me inside
My soul will always be mine
You can keep on trying to make me give up
Through your demands and lack of a heart
I will be right there behind you all the way
Letting you know I will not fall apart
I have to admit that there have been times
When I wanted to give into the pain
To just give up and end it all
But yet here I still remain
The reason I remain is my beliefs
Those beliefs that the good will always come through
That the bad things that you put out there
Will only come back to you
Your karma will come and even out
And give back the balance of what you have given
Then how will you deal with it then
Are you prepared to face how you are living
Well no matter how much pain and sorrow I have
I will not ever give up this fight
Because I believe that those that are wrong
Need to learn to do what is right
I will live with this pain and embrace who I am
This damaged shell of what I used to be
I will learn to go on how ever long I can
How ever long the sorrow of my soul allows me.
I wont stop, I will fight, I will have courage,
I will have strengthI will at as long as life lets me,and that is what I have now
that you have changed me to this, this damaged life.
You will never take my soul, the sorrow of what it is, it is mine, not yours.
These last few weeks have sucked me dry of emotion and strength and I am trying to be so strong, while continuously being pushed and pushed towards that edge of no return. I wont let them push me there though, I refuse. After yesterday it is harder than it has ever been since that spinal cord surgery that destroyed my life. I had to go and be examined by their neurologist for my injuries, and I don't know if it was the stress this caused for me, or the exam itself which included being poked with safety pins all over and around my surgical site that has caused the nerve pain to go out of control, but here I am at almost 12:30 wide awake being jolted left and right, like I am a piece of cattle and they are using a cattle prod on my private areas and down my legs, which hurts more then you can imagine.
Sometimes I wonder just how much a body can take, and I hope and pray that my body is strong enough to survive all of this pain and misery that it has brought into my life. Just please let me try to learn to live with this without overwhelming me with your demands. You know who you are, as I have no doubt you have found my blog (and no it is not anyone that is close to me, in fact it are those I wish to never know again) This part is for them. Do you know how you have destroyed my life? Do you have any idea what it is like to live this way, knowing how my life was before, and the happiness I had known, I wish you did, I wish you could have seen how happy I was before with my family an being normal, I wish you could experience just a small amount of what I go through on a daily basis now, then maybe you would have a little more compassion, but instead you are more worried about protecting yourself instead of putting yourself in my shoes. So now not only do I live with the pain and suffering, but I also have to live with your demands that cause extreme stress on me.
I have no time to enjoy my life, and could not even enjoy my life if I wanted to, you know why? Because its hard to do with all the pain and all the medications, and lack of sleep from being jolted awake each and every night from the pain and then on top of it having to deal with all of you. I am exhausted, I am broke down, yet you continue to bleed me till you think I will give up. Well I was strong before this, and I will continue to be strong until I feel that justice has been sought and met. It needs to stop and if you have any heart or soul at all you will consider what my life is like. Because its horrible but I keep on keeping on, just going day by day and hoping the next one will be better. So far that has not happened. This is for you, this is how you make me feel.
The Sorrow Of My Soul
The sorrow of my soul that is my life
Don't you know it Is tearing me apart
I wish I could make it all go away
That you would just have a a heart
It seems such a little thing to ask
To just let me live my life
To let have some privacy
Instead of all of this strife
How long can this keep this going on
do you think you can outlast me
The one thing I do have is strenght
No matter what that will always be
My body defies me day and night
Like its doing right now at this time
But even though you have destroyed me inside
My soul will always be mine
You can keep on trying to make me give up
Through your demands and lack of a heart
I will be right there behind you all the way
Letting you know I will not fall apart
I have to admit that there have been times
When I wanted to give into the pain
To just give up and end it all
But yet here I still remain
The reason I remain is my beliefs
Those beliefs that the good will always come through
That the bad things that you put out there
Will only come back to you
Your karma will come and even out
And give back the balance of what you have given
Then how will you deal with it then
Are you prepared to face how you are living
Well no matter how much pain and sorrow I have
I will not ever give up this fight
Because I believe that those that are wrong
Need to learn to do what is right
I will live with this pain and embrace who I am
This damaged shell of what I used to be
I will learn to go on how ever long I can
How ever long the sorrow of my soul allows me.
I wont stop, I will fight, I will have courage,
I will have strengthI will at as long as life lets me,and that is what I have now
that you have changed me to this, this damaged life.
You will never take my soul, the sorrow of what it is, it is mine, not yours.
Saturday, July 16, 2011
Just been taking one step forward and two steps back
Well as you can see, its been a while since I have updated, and its been a difficult time for me.
I have been having some issues on dealing with all of this. I thought I had learned to deal with it, but it really is difficult and sometimes you fall back on the progress you think you have made mentally. My pain issues have also gotten worse, so I have not been online much lately at all. Also this getting hot thing is about to kill me, at least it feels that way. It seems I am overheated constantly, and I looked up heat intolerance and found it can definitely be caused by nerve damage, which I do believe that is exactly what is happening. My doctors have also confirmed this to me. Unfortunately because of the nerve damage, my body has a very hard time regulating the proper temperature so I am constantly hot and cold.
I have also ended up with a new problem which is vitamin D deficiency. Amazing that when I look it up online, the first thing I find is all of these clinical trials of people with spinal nerve damage and vit D deficiency. So I guess again its another added bonus. I have been having to take 50,000 units of vit D, which is over 50 times the normal dose you would take as a supplement. It has also limited my time outside, as you cannot go out in direct sunlight while taking this high a dose, due to the fact that the sun is where you get vit D from. Before I was at least able to go out and at least try and enjoy small walks outside, but now that is even being limited. I finished the vit D treatment which lasted 5 weeks, and right after that I ended up with another infection, which again limited my exposure to the sun due to the antibiotic I was on, which thankfully I finally just finished. So hopefully I will at least be able to go for short walks now.
It has been nice living closer to my daughter and grand babies, all though it does really tire me out, and brings my pain level higher, I have had to add Lido-cane patches as well as a gel called Voltaren for the added pain I have been in., The reason I am using this method to add to the many meds, is I did not want to take more pain medication as in pills. I hate the feeling of all the medications I have to take, and the side effects really also take my joy of life away as I feel like such crap all the time from them. I wish I did not have to take them, but I have tried to cut back on them, and the pain is just to unbearable to do that. It seems that no matter what I try, there is always something new that pops up, that makes life worse. Its like one bad surprise after another and its getting really frustrating. I can only imagine the effect it is having on those around me.
Also the bladder spasms that cause shocking pain are getting worse and worse where I have to take a med called vesicare to control them, also it makes the hole of the suprapubic catheter that is through my pelvis very sore and painful as well. So guess what? You got it, more pain medication.
Sometimes I get so sad and angry at the life I have to live now, after that doctor ruined my life. I thought I had those feelings under control, but its just hard sometimes to not let it in. It would be different if I had been told the truth of the test results and what the risks of the surgery were, but I was not. I feel like I was deceived, in fact I know I was deceived, and that is why its so hard to control those feelings. I was going through my records again the other day, and could not believe that he lied to me so much about all the findings. It really makes me angry. I pray all the time for God to help me deal with my feelings, and to help heal me inside my body and mind, but I am how I am now and it is not going to change. Maybe one day I will learn to live with it mentally, but I know physically it will never be the same as it was before surgery. In fact it just seems to get worse. My feet are another issue, and they also seem to be getting worse.
My friend from one of my support groups came to visit from Australia for a day, and he has to walk with a walking crutch, I wonder if because of the way my feet are becoming if one day I will end up where he is now. I hope not. I want to see my grand babies grow up, I want to be part of their lives, and not just looking from the outside. I want to participate with them, play with them, do all the things I used to do, but I cant, and its frustrating me very much.
I have been taking time away from the computer because of so many things I am dealing with mentally and physically and it just never seems to get better. I think this is the longest I have gone without updating since I started the blog, but its hard. I find myself closing in on myself, and shutting life out because I cannot participate in life how I should be able to at my age, and its very difficult to know this.
Here is a song that really fits how I feel so often
I feel like I am running, trying to not give into the feelings I get, the ones that make me want to give up and feel so lost, but I just keep running from it, hoping that one day it does not catch up to me.
Here are the lyrics to the song: Running
I'm not ready to paint my face
And cover all that lies beneathe
If that disappoints you I'm sorry to say
I will be no accomplice to a theif.
Just like this river that flows in between
Or the rocks and the brambles in the way
You can build a dam, you can force it upstream
But the water, always gets away.
(Chorus)
I been runnin' from, I'm runnin' from
The fear I'll lose myself in what I've become
And I don't wanna be under the gun
Please give me the strength to find I don't have to run.
My mama told me, child, she said
You're beautiful you're beautiful to me
[ From: http://www.metrolyrics.com/running-lyrics-sonya-kitchell.html ]
I said mama, wish I was in your head
Cuz despite your words I really do not see.
(Chorus X 2)
I been runnin' from, I'm runnin' from
The fear I'll lose myself in what I've become
And I don't wanna be under the gun
Please give me the strength to find I don't have to run.
I been runnin' from, I'm runnin' from
The fear I'll lose myself in what I've become
And I don't wanna be under the gun
Please give me the strength to find I'm not the only one
Please give me the strength to fine I don't have to run
I have been having some issues on dealing with all of this. I thought I had learned to deal with it, but it really is difficult and sometimes you fall back on the progress you think you have made mentally. My pain issues have also gotten worse, so I have not been online much lately at all. Also this getting hot thing is about to kill me, at least it feels that way. It seems I am overheated constantly, and I looked up heat intolerance and found it can definitely be caused by nerve damage, which I do believe that is exactly what is happening. My doctors have also confirmed this to me. Unfortunately because of the nerve damage, my body has a very hard time regulating the proper temperature so I am constantly hot and cold.
I have also ended up with a new problem which is vitamin D deficiency. Amazing that when I look it up online, the first thing I find is all of these clinical trials of people with spinal nerve damage and vit D deficiency. So I guess again its another added bonus. I have been having to take 50,000 units of vit D, which is over 50 times the normal dose you would take as a supplement. It has also limited my time outside, as you cannot go out in direct sunlight while taking this high a dose, due to the fact that the sun is where you get vit D from. Before I was at least able to go out and at least try and enjoy small walks outside, but now that is even being limited. I finished the vit D treatment which lasted 5 weeks, and right after that I ended up with another infection, which again limited my exposure to the sun due to the antibiotic I was on, which thankfully I finally just finished. So hopefully I will at least be able to go for short walks now.
It has been nice living closer to my daughter and grand babies, all though it does really tire me out, and brings my pain level higher, I have had to add Lido-cane patches as well as a gel called Voltaren for the added pain I have been in., The reason I am using this method to add to the many meds, is I did not want to take more pain medication as in pills. I hate the feeling of all the medications I have to take, and the side effects really also take my joy of life away as I feel like such crap all the time from them. I wish I did not have to take them, but I have tried to cut back on them, and the pain is just to unbearable to do that. It seems that no matter what I try, there is always something new that pops up, that makes life worse. Its like one bad surprise after another and its getting really frustrating. I can only imagine the effect it is having on those around me.
Also the bladder spasms that cause shocking pain are getting worse and worse where I have to take a med called vesicare to control them, also it makes the hole of the suprapubic catheter that is through my pelvis very sore and painful as well. So guess what? You got it, more pain medication.
Sometimes I get so sad and angry at the life I have to live now, after that doctor ruined my life. I thought I had those feelings under control, but its just hard sometimes to not let it in. It would be different if I had been told the truth of the test results and what the risks of the surgery were, but I was not. I feel like I was deceived, in fact I know I was deceived, and that is why its so hard to control those feelings. I was going through my records again the other day, and could not believe that he lied to me so much about all the findings. It really makes me angry. I pray all the time for God to help me deal with my feelings, and to help heal me inside my body and mind, but I am how I am now and it is not going to change. Maybe one day I will learn to live with it mentally, but I know physically it will never be the same as it was before surgery. In fact it just seems to get worse. My feet are another issue, and they also seem to be getting worse.
My friend from one of my support groups came to visit from Australia for a day, and he has to walk with a walking crutch, I wonder if because of the way my feet are becoming if one day I will end up where he is now. I hope not. I want to see my grand babies grow up, I want to be part of their lives, and not just looking from the outside. I want to participate with them, play with them, do all the things I used to do, but I cant, and its frustrating me very much.
I have been taking time away from the computer because of so many things I am dealing with mentally and physically and it just never seems to get better. I think this is the longest I have gone without updating since I started the blog, but its hard. I find myself closing in on myself, and shutting life out because I cannot participate in life how I should be able to at my age, and its very difficult to know this.
Here is a song that really fits how I feel so often
I feel like I am running, trying to not give into the feelings I get, the ones that make me want to give up and feel so lost, but I just keep running from it, hoping that one day it does not catch up to me.
Here are the lyrics to the song: Running
I'm not ready to paint my face
And cover all that lies beneathe
If that disappoints you I'm sorry to say
I will be no accomplice to a theif.
Just like this river that flows in between
Or the rocks and the brambles in the way
You can build a dam, you can force it upstream
But the water, always gets away.
(Chorus)
I been runnin' from, I'm runnin' from
The fear I'll lose myself in what I've become
And I don't wanna be under the gun
Please give me the strength to find I don't have to run.
My mama told me, child, she said
You're beautiful you're beautiful to me
[ From: http://www.metrolyrics.com/running-lyrics-sonya-kitchell.html ]
I said mama, wish I was in your head
Cuz despite your words I really do not see.
(Chorus X 2)
I been runnin' from, I'm runnin' from
The fear I'll lose myself in what I've become
And I don't wanna be under the gun
Please give me the strength to find I don't have to run.
I been runnin' from, I'm runnin' from
The fear I'll lose myself in what I've become
And I don't wanna be under the gun
Please give me the strength to find I'm not the only one
Please give me the strength to fine I don't have to run
Tuesday, May 24, 2011
Trying to make changes is a tough thing to do with CES
I keep hoping that my pain will get less, but its gotten so bad that it is even hard to sit and write on here, hence the reason why the absence. There has been so much going on personally and health wise that its hard to deal with it all.
Last time I had my supra pubic catheter change, about 2 weeks later something with really wrong. I was having bladder spasm pain in my pelvis since it was changed and I knew that something was different. I did not know what and I still do not know what caused it, but one morning I got up to empty it through the valve and nothing came out. I was confused as I was holding the tube in my hand, and all of a sudden the whole thing fell out. I totally freaked out and shoved half the tube which is around 15 inches long into the hole through my stomach into my bladder because I was freaking out, thinking of what would happen if my bladder hole closed up. I know that it can happen quickly, so I was very afraid, there for just shoving a bunch of the tube through the hole. Well I started trying to call my husband at work and on his cell phone and could not reach him. Apparently he was in a meeting at work and had his ringer off on his cell. I then tried calling my daughter since she is close enough to where I live now so she could have taken me to the urologist, but I could not reach her either. The problem for me is that because of the shocking pains I get after its changed I cannot drive, so I was in complete hysterics trying to figure out what to do. Finally my husband called me back as soon as he had seen he missed my call, and left work in an emergency to take me to the urologist to see what happened.
Well apparently the balloon they inflate inside my baldder had popped and that is what made the catheter fall out. I was very lucky as my doctor was just going out the door to go to the hospital to do surgery, so apparently it was my lucky day that I caught him just in time. So he replaced the catheter and my husband drove me home, and I was in soooo much pain from that experience. Then a couple days later I started feeling really sick to my stomach, getting fever and just plain feeling awful. Yep if you have tried to guess and you guessed I had an infection, you would be right. I thought I was doing so well as far as infection, but apparently things like this are a high risk, as I had shoved all the tube that was outside, that had bacteria on it, right into my bladder, which gave me a pretty bad infection that made me feel like crap for quite a while. I am now in fear of this happening again, as I had no idea it could happen. Its just another one of those things you learn about as you learn to try to make your life livable.
It just seems that every time I think I have found something to help me make my life a little more livable, something else pops up to let me know that there are many other things that are a risk to my health. Its hard, so very hard to learn all of this. I just wish I had never met that doctor who ruined who I was and made me learn to live this way. I keep wondering if I will ever come to terms with this and learn to live with this pain and medical problems. Its hard when you were so normal before and you have so many issues now. It would be different if I had medical issues such as these before, and I have lived with them all my life but I did not. I did not have any of this and it makes me so angry that I do now and that there is nothing I can do but go to doctors all the time to try and just live.
One positive thing since I moved is that I get to see my grand babies and my daughter more, but its kind of like a double edged sword, because I see them and want to be like I used to, and do the things I used to, but my body constantly reminds me I am not that girl, but this other one that is limited in everything I am able to do. Its been easier now that I have someone cleaning my house each week and helping me out, but its very hard to afford and I dont know how long I will be able to afford it, or I guess I should say how long my husband can afford it because I am not able to work at all.. I just know that I could see it taking its toll on my husband, who has stood by me through this all, and its not fair to him. He already lost the wife he knew, and then to have to take on all that extra work when he already works so many hours is just not fair. But its also not fair that he works to help pay for someone to help, an expense we would have never had if this had never happened. Its just all very hard, painful and depressing to deal with.
I just wish none of this would have ever happened, and I wish I would not have trusted a doctor (which by the way I never had any doubt in a doctor before, so it was just my nature to believe), then I would not have any of these problems, these problems that will last a life time, how ever long that will be because of all my bodily functions not working properly, and all these medications that I am sure will eventually take a toll on my liver and kidneys. Its just very scary of the unknown and what will happen to me. That is probably the hardest part, is not knowing where my life will go, or if I will even make it to watch my grand babies grow up. That is what causes me the most sorrow, the unknown.
The Mystery Of The Damage
The mytstery of the damage
That was brought in to my life
By that one doctor with no conscience
That damaged me with all of his knifes
I dont know what it holds for me
Or who I will become
Its Like playing Russian Roulette
But hes the one that holds the gun
He wont give me the answers
Of the damage that he did to me
So I have no idea of my life
Or what it has in store for me
Can you please just be a man who feels
And stop worrying about your career so much
Can you put your heart before the money
Can you just try to feel your patients touch
Put yourself in their shoes
Think of how they have to live
After you lay your hands on them
And the pain you so freely give
I'm Tired of pain and this horrible sentence
When you thought you could choose my fate
Unfortunately for me the damage is done
But for others it might not be to late
If you could only give them the honest truth
Instead of your lies and deciept
You could give them a chance of a normal life
And they wont have to live like me
Does it weigh on your soul at all any time
Do you regret what you have done?
I guess the answer to that would be no
Because I am not the only one
So here I am living this life that you gave
This life that you caused by your lies
So are the others that suffer and moan
And will be like that till they die.
So all I can do is sit and wait
And see what is next for me
Because you refuse to give the answers
To the answer of the mystery
The mystery of what you did never goes away
And I hate that you refuse to tell so I can cope
At least so I know what to expect in the future
That is the true horror of what you do, you give us no hope.
Last time I had my supra pubic catheter change, about 2 weeks later something with really wrong. I was having bladder spasm pain in my pelvis since it was changed and I knew that something was different. I did not know what and I still do not know what caused it, but one morning I got up to empty it through the valve and nothing came out. I was confused as I was holding the tube in my hand, and all of a sudden the whole thing fell out. I totally freaked out and shoved half the tube which is around 15 inches long into the hole through my stomach into my bladder because I was freaking out, thinking of what would happen if my bladder hole closed up. I know that it can happen quickly, so I was very afraid, there for just shoving a bunch of the tube through the hole. Well I started trying to call my husband at work and on his cell phone and could not reach him. Apparently he was in a meeting at work and had his ringer off on his cell. I then tried calling my daughter since she is close enough to where I live now so she could have taken me to the urologist, but I could not reach her either. The problem for me is that because of the shocking pains I get after its changed I cannot drive, so I was in complete hysterics trying to figure out what to do. Finally my husband called me back as soon as he had seen he missed my call, and left work in an emergency to take me to the urologist to see what happened.
Well apparently the balloon they inflate inside my baldder had popped and that is what made the catheter fall out. I was very lucky as my doctor was just going out the door to go to the hospital to do surgery, so apparently it was my lucky day that I caught him just in time. So he replaced the catheter and my husband drove me home, and I was in soooo much pain from that experience. Then a couple days later I started feeling really sick to my stomach, getting fever and just plain feeling awful. Yep if you have tried to guess and you guessed I had an infection, you would be right. I thought I was doing so well as far as infection, but apparently things like this are a high risk, as I had shoved all the tube that was outside, that had bacteria on it, right into my bladder, which gave me a pretty bad infection that made me feel like crap for quite a while. I am now in fear of this happening again, as I had no idea it could happen. Its just another one of those things you learn about as you learn to try to make your life livable.
It just seems that every time I think I have found something to help me make my life a little more livable, something else pops up to let me know that there are many other things that are a risk to my health. Its hard, so very hard to learn all of this. I just wish I had never met that doctor who ruined who I was and made me learn to live this way. I keep wondering if I will ever come to terms with this and learn to live with this pain and medical problems. Its hard when you were so normal before and you have so many issues now. It would be different if I had medical issues such as these before, and I have lived with them all my life but I did not. I did not have any of this and it makes me so angry that I do now and that there is nothing I can do but go to doctors all the time to try and just live.
One positive thing since I moved is that I get to see my grand babies and my daughter more, but its kind of like a double edged sword, because I see them and want to be like I used to, and do the things I used to, but my body constantly reminds me I am not that girl, but this other one that is limited in everything I am able to do. Its been easier now that I have someone cleaning my house each week and helping me out, but its very hard to afford and I dont know how long I will be able to afford it, or I guess I should say how long my husband can afford it because I am not able to work at all.. I just know that I could see it taking its toll on my husband, who has stood by me through this all, and its not fair to him. He already lost the wife he knew, and then to have to take on all that extra work when he already works so many hours is just not fair. But its also not fair that he works to help pay for someone to help, an expense we would have never had if this had never happened. Its just all very hard, painful and depressing to deal with.
I just wish none of this would have ever happened, and I wish I would not have trusted a doctor (which by the way I never had any doubt in a doctor before, so it was just my nature to believe), then I would not have any of these problems, these problems that will last a life time, how ever long that will be because of all my bodily functions not working properly, and all these medications that I am sure will eventually take a toll on my liver and kidneys. Its just very scary of the unknown and what will happen to me. That is probably the hardest part, is not knowing where my life will go, or if I will even make it to watch my grand babies grow up. That is what causes me the most sorrow, the unknown.
The Mystery Of The Damage
The mytstery of the damage
That was brought in to my life
By that one doctor with no conscience
That damaged me with all of his knifes
I dont know what it holds for me
Or who I will become
Its Like playing Russian Roulette
But hes the one that holds the gun
He wont give me the answers
Of the damage that he did to me
So I have no idea of my life
Or what it has in store for me
Can you please just be a man who feels
And stop worrying about your career so much
Can you put your heart before the money
Can you just try to feel your patients touch
Put yourself in their shoes
Think of how they have to live
After you lay your hands on them
And the pain you so freely give
I'm Tired of pain and this horrible sentence
When you thought you could choose my fate
Unfortunately for me the damage is done
But for others it might not be to late
If you could only give them the honest truth
Instead of your lies and deciept
You could give them a chance of a normal life
And they wont have to live like me
Does it weigh on your soul at all any time
Do you regret what you have done?
I guess the answer to that would be no
Because I am not the only one
So here I am living this life that you gave
This life that you caused by your lies
So are the others that suffer and moan
And will be like that till they die.
So all I can do is sit and wait
And see what is next for me
Because you refuse to give the answers
To the answer of the mystery
The mystery of what you did never goes away
And I hate that you refuse to tell so I can cope
At least so I know what to expect in the future
That is the true horror of what you do, you give us no hope.
Subscribe to:
Posts (Atom)