It is so hard to keep up with my blog sometimes. It seems as if I repeat myself. I guess that is what living with CES is like. Its like repeating the same horrible day over and over, kind of like groundhog day.
These last few weeks have been horrible and I constantly find myself fantasizing about what it would be like had I never met that doctor who ruined my life with that tarlov cyst surgery with his lies. Again I want to stress right from the get go. If you find you have a tarlov cyst, dont just believe the first surgeon that says he can fix you, ask to see the tests results he has done, and confirm his decision with other neuro surgeons and see if they agree its the right thing, also make sure you know the risks. I myself was not warned that I could end up like this and now here I sit, wishing If I could only just go back in time. I myself never had a reason to doubt a doctor, but now I am so cautious with every doctor I go to, because of my fear I have of them now, due to Mr doctor who destroyed my life.
Right now I would love to be in bed sleeping. Only one problem, well a few problems. One is that I have such severe pain right now I cannot get it under control.. Another is my bowels are going crazy with explosions (sorry if that is too much info, but this blog is not about being nice, or hiding things, its about brutal honestly). I have such horrible pain in my abdomen all the way up to my stomach, that hurts so bad you wish you could just die. I am afraid to lay down and fall asleep if the pain were to subside for a bit, only to find myself covered in feces. Yes these become your priorities once you have CES, and all of those old normal priorities you once had are out the window. Its now all about survivial, and that is all that matters. You live with that day and night, and your mind does not have much more room for any other thought, just surviving that day.
My Dad went in for the second part of his cancer surgery this week, he will be in the hospital till next week, and again I cannot go see him. I talk to him on the phone every other day, when I feel well enough to talk, and he is my cheerleader, he spurs me on, telling me to be strong. Here he is fighting cancer, and he is telling me how to be strong. Am I the only one that sees how wrong this is? I am his daughter, and he is fighting for his life, yet he is encouraging me to fight for my own. This is where my anger comes out. I should be there rooting him on, telling him hes going to be alright, but yet he is the one telling me this. That should give you a good idea of how hard it is to live with CES, that my own dad with his cancer is considering my situation worse than his own.
My daughter has made it to 35 weeks thank god for that, and my new grand baby will be here shortly, hopefully close to her due date instead of earlier. I cannot wait to meet her and hold her little body. At least that I can do, because she will be small and not weigh much. This gives me some kind of hope of some kind of happiness, and right now I am hanging on to that. I cannot wait and that is the one thing I am excited for right now. I went to visit yesterday, and my 4 year old grand daughter asked if she could go to my house with me, and it broke my heart to tell her no. I had to because My husband was at work and I cannot watch her by myself in case anything should happen, I would be at a loss to take care of her. She asks me this every time I see her, and if my husband is at work I have to say no. My heart gets broken every time over and over. The other day she even told her mom, she wanted to be Nana when she grew up, that is how strong our bond is, so I am sure you can imagine the heartbreak I feel each time I disappoint her.
I just try to keep strong, do what I can, and try to live my life, even though I fear it could be taken at any time by infection, as that hospitalization really gave me that wake up call. Its all I can manage right now but for me its the best I can do.
Monday, October 25, 2010
Friday, October 15, 2010
Way To Much To Deal With, How do we get by?
So I know I have been silent lately, as I try to wrap my brain around all that has become of me.
Its been an extremely stressful and painful time for me as of lately. My dad had surgery for his cancer
and I cannot go near him because of the risk of infection and my uncontrollable pain lately.
My Daughter ended up in the hospital last week for 3 days with preterm labor, and is now home on complete bed rest. I have been trying to help her as much as I can, but its very hard when you are in constant pain. I have so much pain and stress that I cannot sleep like a real person. Oh how I long for sleep. I am at the point now where I have forgotten how normal can be. Normal for me changed on January of 2009, and I know I will never be normal again. Its a hard place to be, to know that the pain will never go away, I will never have bodily functions again, and so much more.
It has put me in a very bad depression lately because before this happened to me. I would have been at my Dad's bedside to help him through this cancer treatment, I would be there day and night for my daughter, to help her little one stay put and be born on time. But..... I cannot be that person anymore and it kills me. It kills me mentally and physically, trying to help. Trying to be a good daughter and a good mom, as well as a good Nana. To be honest, before my life was destroyed I considered myself the best at all of those things, and now I am no more then mediocre at best. I do still plan to write here, but its gotten harder and harder.
I find when I am in these types of situations, my anger consumes me towards that doctor that did this to me. I shut myself off from my friends and family, and enclose myself in this bubble, this bubble of protection and fear. All I can hope is that somehow I can somewhat get the pain back in to some kind of control. It never goes away, but at times it becomes so unbearable that I want to die, an lately it is there, right at that pinnacle. Thankfully I have an appt. Tuesday to see my pain management, so hopefully he will have a new idea.
I am also going to try some new catheters that hopefully will lower my risk a little bit as far as infection. I have so far had to use surgical lube and apply it to them before use. Well this is just one more step that can lead to infection, and I have now been switched to ones that are already self lubed. Hopefully by cutting out one step of the process it can help. Despite being on suppressive antibiotics, I am in fear that I have another infection already. Its just crazy all the things I have to worry and live with each day. This is not the mind of normal, normal people do not have to think or live like this, and it is just getting really tiring for me.
Its been an extremely stressful and painful time for me as of lately. My dad had surgery for his cancer
and I cannot go near him because of the risk of infection and my uncontrollable pain lately.
My Daughter ended up in the hospital last week for 3 days with preterm labor, and is now home on complete bed rest. I have been trying to help her as much as I can, but its very hard when you are in constant pain. I have so much pain and stress that I cannot sleep like a real person. Oh how I long for sleep. I am at the point now where I have forgotten how normal can be. Normal for me changed on January of 2009, and I know I will never be normal again. Its a hard place to be, to know that the pain will never go away, I will never have bodily functions again, and so much more.
It has put me in a very bad depression lately because before this happened to me. I would have been at my Dad's bedside to help him through this cancer treatment, I would be there day and night for my daughter, to help her little one stay put and be born on time. But..... I cannot be that person anymore and it kills me. It kills me mentally and physically, trying to help. Trying to be a good daughter and a good mom, as well as a good Nana. To be honest, before my life was destroyed I considered myself the best at all of those things, and now I am no more then mediocre at best. I do still plan to write here, but its gotten harder and harder.
I find when I am in these types of situations, my anger consumes me towards that doctor that did this to me. I shut myself off from my friends and family, and enclose myself in this bubble, this bubble of protection and fear. All I can hope is that somehow I can somewhat get the pain back in to some kind of control. It never goes away, but at times it becomes so unbearable that I want to die, an lately it is there, right at that pinnacle. Thankfully I have an appt. Tuesday to see my pain management, so hopefully he will have a new idea.
I am also going to try some new catheters that hopefully will lower my risk a little bit as far as infection. I have so far had to use surgical lube and apply it to them before use. Well this is just one more step that can lead to infection, and I have now been switched to ones that are already self lubed. Hopefully by cutting out one step of the process it can help. Despite being on suppressive antibiotics, I am in fear that I have another infection already. Its just crazy all the things I have to worry and live with each day. This is not the mind of normal, normal people do not have to think or live like this, and it is just getting really tiring for me.
Friday, October 1, 2010
Housebound And the Loss Of Energy With Pain
So................. This is where I am at. I am silent, as I am depressed. Since I got out of the hospital it seems things have just stayed the same, very bad. The pain levels are worse since then, My energy level is worse since then, and my thoughts are not any better, I am also having to do breathing treatments each day to try and just heal my lungs from the severe allergic reaction I went through by finding I am now allergic to another antibiotic I used to be able to take, which I broke out in hives, and my lungs filled with fluid due to it. I am trying to figure out how to get my energy back, therefore hopefully making me feel somewhat better.
This week I went to the infectious disease specialist to get checked up after going septic from the bladder infection due to my paralyzed bladder, and also to try and find out why did I get worse with pain, and worse with energy. Apparently a side effect of taking antibiotics forever is also giving up your energy forever, unless I can figure out something I can take to give me energy.. I had no idea that antibiotics on a continuous basis would zap your energy. From what the doc says is that because they are constantly depleting the good bacteria, and your body is constantly trying to replenish what keeps getting killed off, well you get the idea, its a vicious cycle. I have been taking the probiotics as well, trying to help my body replace the bacteria, but it seems its just not enough and it is not working, which mentally makes me feel worse. Its like I am completely helpless to my situation.
I also went to have Xrays done as well last week and finally got a good picture of what is in my back. After surgery I was told there was one donor bone plate and four screws. Well it seems there are 3 or 4 titanium plates and 13 screws? What the hell is up with that? I guess another one of those lies I was told. I now go by the rule that anything that doctor told me is a lie and I have to verify what is really going on. It seems the more time goes on the worse it gets and the more I find out. I showed the images to my daughter and she said " Mom it looks like you have barbed wire in your back" and I have to say I agree with her. I dont understand what its all about and hopefully will find out more in the future. From what was explained to me after surgery was that they used donor bone as the plate and used four screws. So where do all the titanium plates and screws come into this? It is a very frightening site for me to see that image and wonder what it can cause to me in my future, especially after I looked up the part numbers of the plates and screws, and they say they are for the neck and upper back. Ummm all this hardware in me? Is in the bottom of my spine and it clearly states on the website for these products that they are not to be used in any load bearing area of the back, not sure about where they are on me, but it would seem the bottom of your back holds a lot of load..
I also asked my doc why do I feel so tired and they said after as sick as I got at the hospital from infection it is not uncommon for it to take up to six months to start feeling better. Really? Well let me be frank, that is complete bullshit that I have to go through that. I have a grand baby due in 8 weeks, I have a 4 year old grand daughter that already I am limited on the time I spent with her before going in the hospital, and lately has been harder, and so many other things that, even though I have tried to adjust to this damage and try to live some kind of life, is now changed again. What the hell did I do to deserve this ? Mr Dr. You know who you are, do you see what you have done to me? To my Life? Thanks a frigging lot is all I have to say to that.
Thankfully I have a strong spirit and am a fighter or I can tell you I would not be here now. Thats right, if I were any weaker then I am now I might consider other options. Thankfully for me and my family I do not believe in those thoughts, but that does not stop me from having them.
This is how I wake up in the morning, after fighting to get sleep through the pain at night. I have a perfect view out my window of the ocean, and the trees and cliffs and its a really beautiful area where I live. When I first moved in here I would wake to that view and be so thankful that I had such a great life. I felt blessed and at peace. Now I wake up to that same view, which now escapes me. I get no pleasure from it anymore. My first thought when I awaken now is not how blessed I am, but I think Ok how do I make it through today. That is all I concentrate on when I awaken. I dont look at the view, I dont think how blessed I am, I just try to figure out how to make it through the day and dread stepping out of my bed because I then know I have to start the process of survival during the daylight.
This week I went to the infectious disease specialist to get checked up after going septic from the bladder infection due to my paralyzed bladder, and also to try and find out why did I get worse with pain, and worse with energy. Apparently a side effect of taking antibiotics forever is also giving up your energy forever, unless I can figure out something I can take to give me energy.. I had no idea that antibiotics on a continuous basis would zap your energy. From what the doc says is that because they are constantly depleting the good bacteria, and your body is constantly trying to replenish what keeps getting killed off, well you get the idea, its a vicious cycle. I have been taking the probiotics as well, trying to help my body replace the bacteria, but it seems its just not enough and it is not working, which mentally makes me feel worse. Its like I am completely helpless to my situation.
I also went to have Xrays done as well last week and finally got a good picture of what is in my back. After surgery I was told there was one donor bone plate and four screws. Well it seems there are 3 or 4 titanium plates and 13 screws? What the hell is up with that? I guess another one of those lies I was told. I now go by the rule that anything that doctor told me is a lie and I have to verify what is really going on. It seems the more time goes on the worse it gets and the more I find out. I showed the images to my daughter and she said " Mom it looks like you have barbed wire in your back" and I have to say I agree with her. I dont understand what its all about and hopefully will find out more in the future. From what was explained to me after surgery was that they used donor bone as the plate and used four screws. So where do all the titanium plates and screws come into this? It is a very frightening site for me to see that image and wonder what it can cause to me in my future, especially after I looked up the part numbers of the plates and screws, and they say they are for the neck and upper back. Ummm all this hardware in me? Is in the bottom of my spine and it clearly states on the website for these products that they are not to be used in any load bearing area of the back, not sure about where they are on me, but it would seem the bottom of your back holds a lot of load..
I also asked my doc why do I feel so tired and they said after as sick as I got at the hospital from infection it is not uncommon for it to take up to six months to start feeling better. Really? Well let me be frank, that is complete bullshit that I have to go through that. I have a grand baby due in 8 weeks, I have a 4 year old grand daughter that already I am limited on the time I spent with her before going in the hospital, and lately has been harder, and so many other things that, even though I have tried to adjust to this damage and try to live some kind of life, is now changed again. What the hell did I do to deserve this ? Mr Dr. You know who you are, do you see what you have done to me? To my Life? Thanks a frigging lot is all I have to say to that.
Thankfully I have a strong spirit and am a fighter or I can tell you I would not be here now. Thats right, if I were any weaker then I am now I might consider other options. Thankfully for me and my family I do not believe in those thoughts, but that does not stop me from having them.
This is how I wake up in the morning, after fighting to get sleep through the pain at night. I have a perfect view out my window of the ocean, and the trees and cliffs and its a really beautiful area where I live. When I first moved in here I would wake to that view and be so thankful that I had such a great life. I felt blessed and at peace. Now I wake up to that same view, which now escapes me. I get no pleasure from it anymore. My first thought when I awaken now is not how blessed I am, but I think Ok how do I make it through today. That is all I concentrate on when I awaken. I dont look at the view, I dont think how blessed I am, I just try to figure out how to make it through the day and dread stepping out of my bed because I then know I have to start the process of survival during the daylight.
Subscribe to:
Posts (Atom)