Its been so long since I blogged and its been a very hard time. It seems again my fears were warranted
Just after my last blog entry I had another situation which I am still not sure exactly why it happened and
can not really get any concrete proof of why.
I was at home talking to my friend Jill on the phone for about an hour one night, I think it was the ninth of march, and all of a sudden I started to feel very sick and went to the bathroom to have my dinner come right back up even though it was over 4 hours since I had eaten, the food was still in my stomach. From there I started getting pain in my upper right hand side, right below my rib cage. I tried taking a bath to calm it but it just got worse. I went to lay down around 10 pm and no matter how I was lying, I could not make the pain subside. I tried taking pain meds, I had tried everything. I was afraid because I had been blocked up in my bowels for almost a week, so I was very fearful that there was an impaction in my bowels. I tried like heck to go to sleep and try to make the pain go away to no avial. Finally around 3 AM when my husbands alarm went off for him to get up for work, and I had been lying there awake with severe pain that was only getting worse, I had to tell him that something was really wrong and I needed to go to the hospital.
Now my husband knows me well, and knows that I hate going to the hospital and will do everything to avoid it so he knew it must be serious. I could not even walk down to the car myself and he had to help and get me in the car. Once I got to the ER I could not eve walk as the pain was so bad and had horrible shocking pain shooting up my spinal cord, they got me in and did a catscan, only to find that I had a ruptured appendix. I know that I have read somewhere, although I cannot remember where that sometimes in women my age, it is caused by bowel problems and chronic constipation. The doctor told me that I needed emergency surgery to remove my appendix. I told the surgeon of my current bowel problems, and that I keep myself in a somewhat constipated state so that I dont have bowel accidents in public all the time, as that is what happens if things are not firm.
She could not say this was the cause, but it is what it is. When they went in to remove my appendix, they found it was not where it should be and that it was up near my liver. They said I should only be in the hospital for a day or two but because of infection that had set in, I ended up in the hospital for five days on a ton of IV antibiotics and morphine every two hours. Ever since I have not been able to keep anything in my system and my bowels have gone so crazy from my Cauda Equina Syndrome from that spinal cord surgery in jan 09, that I am now back in diapers 24/7 and am so afraid of all foods. I have tried eating everything from a liquid diet to solid diet and nothing is working, it just falls right out of my rectum, and the most horrible part I cannot feel it because I am completely numb down there to this day, ever since jan 09. Its like starting all over with this stuff and I am so depressed ready to give up again.
I had a check up with the surgeon last Thursday or Friday, sorry cannot remember the exact day, as I go to doctors so often that its hard to remember all the dates, for instance next week I have doctors appts. on 3 out of 5 days, so I am sure its not hard to understand why I have a hard time remembering the dates. Anyways on my appt. date I asked the surgeon, since it had been two weeks since my surgery that shouldn't my system be getting back to normal. She said that this has nothing to do with the surgery, these problems with my bowels, but that just the surgery itself has irritated my spinal cord injury, so she has no idea if or ever I will get any kind of system down again with my bowels and having accidents. Right now I can barely leave my house, in fact I can tell you that I have only left my house 3 times since the surgery because of my fear of a public accident of being covered in feces. I have already lost 10 pounds from this and it is getting scary. I am wondering, will I ever be able to eat normal food again? This is exactly what it was like in the beginning after my bowels got damaged from the spinal cord surgery. I do normally have to wear diapers half the week on a regular basis since that jan surgery, but to have to wear them 24/7 and the fear that goes along with it, is so mentally draining and makes me wonder why I have to live this way, just because some doctor decided I was not worth being honest with and damaged me for life. It just reinforces to me that it is for life and there is just nothing I can do to stop it, or have any quality of life.
This week I finally gave in and hired a house keeper, as I have not cleaned house since January of 2009 due to my disabilities now. My poor husband has been working 12 hours a day, and then coming home and trying to clean and do everything here too and its taking its toll on him as well. I know I should have done this sooner, but its hard to admit to myself that I will never be normal again and do normal things. So now we have an added expense of a house keeper as well, just to live in a healthy clean environment. when I think of it now I cannot believe that I have let him take on so much, but I did not want to face the facts. The fact that my life is ruined and will always be this way from what I have been told by all my doctors. They all say the same thing, that since its been over two years, I am not going to get better and I have to learn to live with it. I have always taken pride in having a clean home, and I can no longer have that pride in myself. Its just another failure to me and it hurts really badly.
So now not only am I am in diapers again 24/7, but I also now have another added expense of $200 or more to add to my already rising medical costs, just so I can live in a decent house that is not covered in dust, filled with dirty laundry and everything else that goes along with not being able to even clean, So I am sure it is understandable why I have not blogged lately as I am now again learning to live with more disappointment from this disastrous surgery that ruined my life. I also had to cancel my scope of my bowels and colon that was scheduled for the first of April because I have so much pain again throughout my lower body, bowels and bladder, nerve and muscle pain, Its all just very irritated right now and the meds are not helping me much at this point. I hate hate hate this life I have to live now.
Well thats it for now. I will update again next week I think after all my doctors appts.
Tuesday, March 29, 2011
Monday, March 7, 2011
Another horrible and painful week, When does it end?????
I have not blogged for a while as there are just so many different bad things happening, and I am constantly wondering how did I deserve to have to live this way?
I went last Monday for my first supra pubic catheter change and all seemed to go well, although it was very painful. My urologist changed the catheter, then had me take one dose of Macrodanten as a precaution to avoid infection. My appt. was later in the afternoon so I came home afterwards, ate dinner and went to bed a bit early.
Tuesday I did not wake up until almost 1pm, and was not feeling well at all. I was super hot and for some reason could not wake up. I was having chills and sweats and was so so tired, and had so much pain in my back all the way down to my feet. I could not wake up or get out of bed so I layed there all day, just sleeping, ignoring the phone that I kept hearing ring all day long. Well not really ignoring it, but just did not feel able to get up and answer it. It was like I was helpless to even lift my body off the bed. The only thing I did get up for was to empty my catheter and went right back to bed and sleep. I had no idea what was wrong with me, but something was not right.
Every joint in my body from the waist down was hurting, and my chest felt very heavy. So I just slept all day. When my husband came home he was beside himself with worry, as he normally calls many times during the day to check up on me, as well as my daughter, she does the same thing. I know I am a big worry for them and I hate that. I wish I could be the way I was before this surgery that has destroyed who I was, but I know that this is what my life has become. Anyways when my husband got home and found me still in bed asleep in my pajamas, he was very worried. He then took my temprature and found it was 104 and freaked out. He wanted to take me to the ER but I refused, I was very combative to try and get up. I think it was that the fever had me so out of it I could not think clearly.
He put up with that for a while, trying to force me to take sips of liquids, but I could not even take a drink of anything as I was too out of it and too weak. he kept trying to wake me up to no avail. I feel so bad now what I put him through because he stayed up all night long, sitting next to me wide awake watching me just to make sure I stayed alive. He left the next morning as soon as the infectious doctor was open and took them a sample of my urine which was full of blood. There was no infection showing in it, but they told him to get me there ASAP. He came home and it probably took him an hour just to force me to get up and get me in the car. I did not even have the energy to get dressed so he just took me in my PJ's and went. I had slept at this point for around 36 hours straight, as well as all the way to the docs.
Once I got to the doctors office, they determined I was completely dehydrated and in pretty bad shape. They tried putting an IV in me to give me fluids, but it must have taken them around 5 or 6 times poking in different areas just to get a needle in me, as that is how bad the dehydration was. Finally they got one in and started a bag of fluids on me. They also took many vials of blood for tests. Once that bag was done, they gave me a bag of Gentamicin antibiotics through the IV, then another bag of fluids. I was basically getting all the care there that I would have gotten in the hospital. If I had not agreed to all of this, they said I would need to go back in the hospital like last august and that was the last place I wanted to be. So I spent the whole day in their office hooked up to an IV. They also gave me a shot for all the pain I was experiencing in all my joints. I slept through the whole thing and was really out of it still. I still could not stay awake because I was so sick.
Finally at the end of the day they had my husband take me home with the IV needle still in my arm, making me promise to come back the next day, for more. So I went home and again went right back to sleep, and slept through the whole night again from the time I got home. I went back the next morning, and they did a flu test, which was negative, so it came down to something to do with the catheter change I had on Monday, as that night is when this whole thing started. As I started talking to the doctor, we tried to figure out what it could have been that caused all of this. The only thing in common with this reaction and the reaction that put me in the hospital with sepsis last august was that I was given Macrodantin. I had only one pill but my doctor thinks that this might have been it. They still dont know, but it had something to do with the suprapubic change because I was perfectly fine before my appt. Monday for the catheter change, and I have to say that I am very very scared. It was some kind of very scary reaction to something.
Before that surgery of January 05, I rarely got sick, and almost never had any kind of infection for years. I got a cold probably once every couple years like normal people. Regular stuff that regular people get. I am no longer regular since that life changing surgery that has damaged me to a point that I question, if one of these times, one of these things is going to kill me. In the shape I was in when my husband first found me Tuesday afternoon after he got off of work, I would have laid there and died because my brain was not thinking properly due to the high temperature and that is extremely scary.
I am just now finally starting to feel a little better, and I am so tired of going through all of this. Its very depressing to know that I wont ever be me again. The me that spent time with my family and did things like everyone else, the me that did not worry about getting sick all the time as it happened very rarely, years between colds and such, or ending up in the hospital or dead. I know this now, that I will never ever be that person again, and I hate that doctor for making me this way. He sleeps fine at night I am sure, because he does not have a tube sticking out of his pelvis to empty his bladder, he does not have to empty his bowels with his fingers, digging everything out, he does not have the nerve and muscle pain I have 24/7, he gets to enjoy his life and his family with no worries what tomorrow will bring or if there will even be a tomorrow. It gets hard to know this and still go on, knowing I will never be me again,.
So now I am afraid of my next catheter change, that will be the beginning of next month. I also have to have a colonoscopy three days before that, and go back for a check up with the infectious disease doc the same week, as well as go to my pain management doctor that week. I actually have to go see him monthly too, just like the urologist for changing the suprapubic catheter. My life revolves around doctors and staying alive all thanks to that surgery from January 05. Most of my friends don't even call anymore because I think its too depressing for them too and I don't blame them. I would probably feel the same way. The hardest thing is feeling the fear each day of what will happen, and also seeing the fear in my husbands eyes all the time wondering if he will have a wife. I constantly find myself apologizing to everyone for not being who I used to be, or for what I am going through at the time, but then I get mad because why should I be apologizing anyways? This was not my fault, it was that doctor that did this to me, its his fault but he does not have to live each day with it. Only I do and that is what is so wrong with this whole situation.
I went last Monday for my first supra pubic catheter change and all seemed to go well, although it was very painful. My urologist changed the catheter, then had me take one dose of Macrodanten as a precaution to avoid infection. My appt. was later in the afternoon so I came home afterwards, ate dinner and went to bed a bit early.
Tuesday I did not wake up until almost 1pm, and was not feeling well at all. I was super hot and for some reason could not wake up. I was having chills and sweats and was so so tired, and had so much pain in my back all the way down to my feet. I could not wake up or get out of bed so I layed there all day, just sleeping, ignoring the phone that I kept hearing ring all day long. Well not really ignoring it, but just did not feel able to get up and answer it. It was like I was helpless to even lift my body off the bed. The only thing I did get up for was to empty my catheter and went right back to bed and sleep. I had no idea what was wrong with me, but something was not right.
Every joint in my body from the waist down was hurting, and my chest felt very heavy. So I just slept all day. When my husband came home he was beside himself with worry, as he normally calls many times during the day to check up on me, as well as my daughter, she does the same thing. I know I am a big worry for them and I hate that. I wish I could be the way I was before this surgery that has destroyed who I was, but I know that this is what my life has become. Anyways when my husband got home and found me still in bed asleep in my pajamas, he was very worried. He then took my temprature and found it was 104 and freaked out. He wanted to take me to the ER but I refused, I was very combative to try and get up. I think it was that the fever had me so out of it I could not think clearly.
He put up with that for a while, trying to force me to take sips of liquids, but I could not even take a drink of anything as I was too out of it and too weak. he kept trying to wake me up to no avail. I feel so bad now what I put him through because he stayed up all night long, sitting next to me wide awake watching me just to make sure I stayed alive. He left the next morning as soon as the infectious doctor was open and took them a sample of my urine which was full of blood. There was no infection showing in it, but they told him to get me there ASAP. He came home and it probably took him an hour just to force me to get up and get me in the car. I did not even have the energy to get dressed so he just took me in my PJ's and went. I had slept at this point for around 36 hours straight, as well as all the way to the docs.
Once I got to the doctors office, they determined I was completely dehydrated and in pretty bad shape. They tried putting an IV in me to give me fluids, but it must have taken them around 5 or 6 times poking in different areas just to get a needle in me, as that is how bad the dehydration was. Finally they got one in and started a bag of fluids on me. They also took many vials of blood for tests. Once that bag was done, they gave me a bag of Gentamicin antibiotics through the IV, then another bag of fluids. I was basically getting all the care there that I would have gotten in the hospital. If I had not agreed to all of this, they said I would need to go back in the hospital like last august and that was the last place I wanted to be. So I spent the whole day in their office hooked up to an IV. They also gave me a shot for all the pain I was experiencing in all my joints. I slept through the whole thing and was really out of it still. I still could not stay awake because I was so sick.
Finally at the end of the day they had my husband take me home with the IV needle still in my arm, making me promise to come back the next day, for more. So I went home and again went right back to sleep, and slept through the whole night again from the time I got home. I went back the next morning, and they did a flu test, which was negative, so it came down to something to do with the catheter change I had on Monday, as that night is when this whole thing started. As I started talking to the doctor, we tried to figure out what it could have been that caused all of this. The only thing in common with this reaction and the reaction that put me in the hospital with sepsis last august was that I was given Macrodantin. I had only one pill but my doctor thinks that this might have been it. They still dont know, but it had something to do with the suprapubic change because I was perfectly fine before my appt. Monday for the catheter change, and I have to say that I am very very scared. It was some kind of very scary reaction to something.
Before that surgery of January 05, I rarely got sick, and almost never had any kind of infection for years. I got a cold probably once every couple years like normal people. Regular stuff that regular people get. I am no longer regular since that life changing surgery that has damaged me to a point that I question, if one of these times, one of these things is going to kill me. In the shape I was in when my husband first found me Tuesday afternoon after he got off of work, I would have laid there and died because my brain was not thinking properly due to the high temperature and that is extremely scary.
I am just now finally starting to feel a little better, and I am so tired of going through all of this. Its very depressing to know that I wont ever be me again. The me that spent time with my family and did things like everyone else, the me that did not worry about getting sick all the time as it happened very rarely, years between colds and such, or ending up in the hospital or dead. I know this now, that I will never ever be that person again, and I hate that doctor for making me this way. He sleeps fine at night I am sure, because he does not have a tube sticking out of his pelvis to empty his bladder, he does not have to empty his bowels with his fingers, digging everything out, he does not have the nerve and muscle pain I have 24/7, he gets to enjoy his life and his family with no worries what tomorrow will bring or if there will even be a tomorrow. It gets hard to know this and still go on, knowing I will never be me again,.
So now I am afraid of my next catheter change, that will be the beginning of next month. I also have to have a colonoscopy three days before that, and go back for a check up with the infectious disease doc the same week, as well as go to my pain management doctor that week. I actually have to go see him monthly too, just like the urologist for changing the suprapubic catheter. My life revolves around doctors and staying alive all thanks to that surgery from January 05. Most of my friends don't even call anymore because I think its too depressing for them too and I don't blame them. I would probably feel the same way. The hardest thing is feeling the fear each day of what will happen, and also seeing the fear in my husbands eyes all the time wondering if he will have a wife. I constantly find myself apologizing to everyone for not being who I used to be, or for what I am going through at the time, but then I get mad because why should I be apologizing anyways? This was not my fault, it was that doctor that did this to me, its his fault but he does not have to live each day with it. Only I do and that is what is so wrong with this whole situation.
Saturday, February 12, 2011
Why Cant I just Be Me
So you say you want to see anger
What this accomplishes I do not know
Oh you want me to be sad now do you
How far would you like me to go
I'm so tired of all of this judgment I get
Of how I am supposed to react
Maybe if you had to live my life
you would learn the real true facts
That you cannot just be who they want you to be
You have to learn to just be who you are
Your that person that had their life destroyed
Your that person that has been pushed to far
How strong do you think that you could be
if you had to live the life that I live?
Could you stand to be judged on top of it all
Could you really have that much to give?
Well maybe just maybe I am not that strong
When the pain takes my life away
The tears that I get that build up inside
When my grand daughter wants me to play
Just those simple things that I used to do
That I wish I could still do hurts so bad
Thinking of the life and love that I used to know
And all the happy times that I used to have
There gone for me now and I have built a wall
So high so you cannot see whats inside
Its all I have that protects me now
And I refuse to give up that right
That right to see who I have become
Because of this misery and all of this pain
Just picture if you live in a world like mine
A world dark and where it always rains
Think of those days when its gray outside
And all you can wish for is the sun
But the rain just keeps on coming down
And you feel like your the only one
The only one left in this dark and cold place
And you don't know how to make it change
Because you do not have that power inside yourself
To bring brightness out of that gray
With your broken body that defines who you are
The one that you fight to keep alive
And you know that you'll live the rest of your life
in this pain and sorrow till you die
So still do you question why you cant get in
And make me who you want me to be?
Well I really don't care if it bothers you anymore
I just have to learn how to be me
Its the only thing that is keeping me alive
I keep on living by hiding my fears
Of what will happen to me one of these days
That day I run out of my tears
So I try to use them very sparingly
When I'm alone and by myself
So you cant see how much pain it is
I have to put them up on a shelf
A shelf so high that only I can reach
That is hidden very deep inside of me
I have to keep them away from those I can hurt
Because if they get away then everyone will see
That in truth I am not this strong person they want
But I am so very empty and weak
They will find I cant be who they want me to be
And it could be the end of me
So please just let me be who I am
And accept me for who I am inside
because unfortunately on that January day
I had to learn to live a new life
I need to me to survive, and each day I may change
But I am just me............. that's all. I am me and I am still here,
and to me that is an accomplishment.
What this accomplishes I do not know
Oh you want me to be sad now do you
How far would you like me to go
I'm so tired of all of this judgment I get
Of how I am supposed to react
Maybe if you had to live my life
you would learn the real true facts
That you cannot just be who they want you to be
You have to learn to just be who you are
Your that person that had their life destroyed
Your that person that has been pushed to far
How strong do you think that you could be
if you had to live the life that I live?
Could you stand to be judged on top of it all
Could you really have that much to give?
Well maybe just maybe I am not that strong
When the pain takes my life away
The tears that I get that build up inside
When my grand daughter wants me to play
Just those simple things that I used to do
That I wish I could still do hurts so bad
Thinking of the life and love that I used to know
And all the happy times that I used to have
There gone for me now and I have built a wall
So high so you cannot see whats inside
Its all I have that protects me now
And I refuse to give up that right
That right to see who I have become
Because of this misery and all of this pain
Just picture if you live in a world like mine
A world dark and where it always rains
Think of those days when its gray outside
And all you can wish for is the sun
But the rain just keeps on coming down
And you feel like your the only one
The only one left in this dark and cold place
And you don't know how to make it change
Because you do not have that power inside yourself
To bring brightness out of that gray
With your broken body that defines who you are
The one that you fight to keep alive
And you know that you'll live the rest of your life
in this pain and sorrow till you die
So still do you question why you cant get in
And make me who you want me to be?
Well I really don't care if it bothers you anymore
I just have to learn how to be me
Its the only thing that is keeping me alive
I keep on living by hiding my fears
Of what will happen to me one of these days
That day I run out of my tears
So I try to use them very sparingly
When I'm alone and by myself
So you cant see how much pain it is
I have to put them up on a shelf
A shelf so high that only I can reach
That is hidden very deep inside of me
I have to keep them away from those I can hurt
Because if they get away then everyone will see
That in truth I am not this strong person they want
But I am so very empty and weak
They will find I cant be who they want me to be
And it could be the end of me
So please just let me be who I am
And accept me for who I am inside
because unfortunately on that January day
I had to learn to live a new life
I need to me to survive, and each day I may change
But I am just me............. that's all. I am me and I am still here,
and to me that is an accomplishment.
Thursday, February 10, 2011
Update of my surgery
Well its been a couple weeks since my surgery and thinks are ok at this point. It was very difficult at first, but I am adjusting. Its hard to adjust to having a tube sticking out of your belly and that is the only way to empty your bladder, but I am adjusting to it and learning new tricks on how to accomplish things. I still have a very hard time coming to terms with it all.
I should not have to live this way, and had I had the truth to begin with I would not have to, because I would still be fully functional, the way I was before that doctor destroyed who I was with his lies. I have had so many appts. lately that I am exhausted and have been very quite. I just have all of these thoughts in my mind that are very hard to get out. I dont want people to know what I think because that is the only private thing I have left that works, is my brain.
When I was a child and I had the worst parents in the world, I swore I would be the best mother in the world, and I think I accomplished that. My daughter was my main priority and no one came before her. As she grew I was so proud of what I had accomplished. As she matured into a woman I swore I would be the best grand mother any grand babies could have, and I was. I took my grand daughter to the park, the nature center, the ocean mammal center, anywhere we could have fun and I could teach her things that were important. Like being kind and helping where you could, to love all of life and never take it for granted. Then I met the doctor that took that all away from him giving me false test results. He has changed me in ways I thought no one could ever change me. I was one of the most trusting people you would ever meet, and now I do not trust anyone except My daughter, my Father and my Husband. I know there are those that do deserve my trust, but I just cannot go there anymore. I found out what blind trust can do to to you, it can destroy you.
I am now not that grand mother I swore I would be. Every time I see my grand babies and my oldest who is four asks to sleep over, and each time I have to tell her no, it kills just a little bit more of me inside. I hate it and it tears my heart apart. I want those days back that I used to have with her. I want the happiness I had before Jan 09, I want who I was back but I know I will never get it. Its like I am living someone elses life, and I cannot switch back no matter how hard I try. I am just so tired. I am so tired of not being who I was and it makes me very depressed. I get to the point where I close out everyone and dont talk to anyone, even my own husband. I also know that I take a lot of my anger out on him and this is wrong because no one could have a better husband. He is there for me 24 hours a day no matter how mean I am to him. He understands that it is not the real me that is doing this, but the one I have become.
The only thing that keeps me going is hoping and praying that even though I have to live this life in this way, that one day I can become a kinder person, the type I was before all of this.
My surgery so far has gone ok. I have had to have one course of antibiotics for a week after the surgery, which was on Jan 25th, but we will see if it helps with the infections in the future. They sent out a culture yesterday from my check up appt., and I am hoping with all I am that it comes back negative. I want to know that this surgery was worth it. The incision site is healing well and the leaking around the catheter has stopped, so that is a big accomplishment, Who would have ever thought I would even talk of such things, but here I am, this is me and my life now. The one thing that wont change and I know this, is the amount of time and the type of activity I can do with my grand daughters. I know I will forever be changed in that way and its hard, and it makes me angry. I just hope the doctors can control the infections now, and I hope that this does not damage my kidneys or give me bladder cancer from having this done, but it was a dicision I had to make and it seemed the most optimistic of those available to me.
I am still on the same meds, and its still confusing to make sure I take them all, just to control all the pain and disfunction I live with now that I am damaged goods, but I do my best and hopefully it will keep me here to love my family.
I should not have to live this way, and had I had the truth to begin with I would not have to, because I would still be fully functional, the way I was before that doctor destroyed who I was with his lies. I have had so many appts. lately that I am exhausted and have been very quite. I just have all of these thoughts in my mind that are very hard to get out. I dont want people to know what I think because that is the only private thing I have left that works, is my brain.
When I was a child and I had the worst parents in the world, I swore I would be the best mother in the world, and I think I accomplished that. My daughter was my main priority and no one came before her. As she grew I was so proud of what I had accomplished. As she matured into a woman I swore I would be the best grand mother any grand babies could have, and I was. I took my grand daughter to the park, the nature center, the ocean mammal center, anywhere we could have fun and I could teach her things that were important. Like being kind and helping where you could, to love all of life and never take it for granted. Then I met the doctor that took that all away from him giving me false test results. He has changed me in ways I thought no one could ever change me. I was one of the most trusting people you would ever meet, and now I do not trust anyone except My daughter, my Father and my Husband. I know there are those that do deserve my trust, but I just cannot go there anymore. I found out what blind trust can do to to you, it can destroy you.
I am now not that grand mother I swore I would be. Every time I see my grand babies and my oldest who is four asks to sleep over, and each time I have to tell her no, it kills just a little bit more of me inside. I hate it and it tears my heart apart. I want those days back that I used to have with her. I want the happiness I had before Jan 09, I want who I was back but I know I will never get it. Its like I am living someone elses life, and I cannot switch back no matter how hard I try. I am just so tired. I am so tired of not being who I was and it makes me very depressed. I get to the point where I close out everyone and dont talk to anyone, even my own husband. I also know that I take a lot of my anger out on him and this is wrong because no one could have a better husband. He is there for me 24 hours a day no matter how mean I am to him. He understands that it is not the real me that is doing this, but the one I have become.
The only thing that keeps me going is hoping and praying that even though I have to live this life in this way, that one day I can become a kinder person, the type I was before all of this.
My surgery so far has gone ok. I have had to have one course of antibiotics for a week after the surgery, which was on Jan 25th, but we will see if it helps with the infections in the future. They sent out a culture yesterday from my check up appt., and I am hoping with all I am that it comes back negative. I want to know that this surgery was worth it. The incision site is healing well and the leaking around the catheter has stopped, so that is a big accomplishment, Who would have ever thought I would even talk of such things, but here I am, this is me and my life now. The one thing that wont change and I know this, is the amount of time and the type of activity I can do with my grand daughters. I know I will forever be changed in that way and its hard, and it makes me angry. I just hope the doctors can control the infections now, and I hope that this does not damage my kidneys or give me bladder cancer from having this done, but it was a dicision I had to make and it seemed the most optimistic of those available to me.
I am still on the same meds, and its still confusing to make sure I take them all, just to control all the pain and disfunction I live with now that I am damaged goods, but I do my best and hopefully it will keep me here to love my family.
Friday, January 28, 2011
So So Tired Of It All
I am so tired of all I am going through and I wonder how I keep living. Sometimes it just does not seem worth it, having to live in this body that I hate now, Thanks to the Doctor who did this to me (although I do not think he should be allowed around anyone doing surgery on them) Its just a title he has as far as I am concerned although I do not think he deserves that kind of respect..
Tuesday I had surgery to have the suprapubic catheter put in because basically my options are running out for infections and I am hoping this will help stop them by moving the catheter out of the area where we have the most bacteria. I am not dealing with this well at all. I have a ton of pain in my stomach from it, and it is leaking everywhere. I am so frustrated that I have to put a ton of guaze on it every two hours as it only takes that long to saturate the dressings as well as the diapers I am now wearing 24/7. I fricking hate my life right now and the fact that in reality even though those that are so close to me, like my husband does not really know how hard it is to live with.
I was sitting trying to change all the bandages, while holding the catheter tube as well, and my husband was on the sideline micromanaging and then yelling at me because I was dripping from the tube on the toilet seat. I hate to sound like I am not appreciative but REALLY????? I had already got urine spilled down my arm and all over my hand and was trying to clean that off first, I was fully aware that the stupid thing was dripping. Its nice he can sit and yell in the door way yet never lift a finger to help me clean it up!!!!!!! I know he is probably just as frustrated, well maybe not in the same way, but he is now living with a crazy person. One that has a hard time even trying to figure out why I keep living. I am sooo ready to just give up, but I know I wont, because that is not my nature, I am a fighter and I will continue to fight whether I want to or not, because that is just who I am.
This morning for instance, I was supposed to go have an independent medical exam done, and getting ready all I hear is my husband yelling at the cats. Guess what? Hes not mad at the cats, but he wont yell at me (well until he just cant handle anymore, when it gets to overwhelming then he yells) So I told him to quit taking it out on the cats, its not their fault my life has been ruined. So finally we leave the house, take two hours to drive through rush hour traffic to get to the hospital near downtown Los Angeles which hurt like hell because of my surgery only three days earlier, and we come to the address only to find it is an old closed down hospital? What is up with that? So we go to the new hospital, then we find the neurology floor and go up. Find what we think is the right place and ask the front desk person, who informs us that the doctor we were supposed to see does do rounds at that hospital but he does not work there as his primary hospital, that he actually works for University hospital. Well the lady was nice enough to call him and when I got on the phone with him, he had no idea who I was and had no appt. scheduled for me. WHAT? Are you kidding me? After all we went through to get down there and to do as we are asked this is what happens? I have papers with the doctors name and address (which was wrong) along with the proof of service. It said it was from the superior court, so I had assumed they had filed it. Is this some kind of game for those attorneys or what, because I did not find it funny in the least bit. Just jumping through another hoop adding insult to injury. I guess thats the way they do business. Apparently putting me through more pain by making me do these things does not even enter their minds, thanks alot I really appreciate how humane you all are !!!!! AS if my life being destroyed was not enough I have to go through this kind of stuff too. Thanks again.
I am so done and over all of this but you know what? My body does not know this so it keeps living, keeps going to doctors, keeps trying to live and fight, keeps trying to not have pain by taking medicine after medicine just so it can keep trying!!!!!! All I can say is I am exhausted, I am so exhausted its hard to think, its hard to be nice, its hard to have hope, its hard to dream because all of those things take energy and good thoughts that I just dont have. I had thought I would learn to deal with it by now as its been over two years, but let me tell you, the anger never goes away, the pain never goes away. That doctor needs to think what he is doing to someones life before he lies about test results to get them to do surgery, just because, well I dont know why he does it, but my question for him would be, is it worth it? How do you sleep at night? I am sure it is better then me.
Tuesday I had surgery to have the suprapubic catheter put in because basically my options are running out for infections and I am hoping this will help stop them by moving the catheter out of the area where we have the most bacteria. I am not dealing with this well at all. I have a ton of pain in my stomach from it, and it is leaking everywhere. I am so frustrated that I have to put a ton of guaze on it every two hours as it only takes that long to saturate the dressings as well as the diapers I am now wearing 24/7. I fricking hate my life right now and the fact that in reality even though those that are so close to me, like my husband does not really know how hard it is to live with.
I was sitting trying to change all the bandages, while holding the catheter tube as well, and my husband was on the sideline micromanaging and then yelling at me because I was dripping from the tube on the toilet seat. I hate to sound like I am not appreciative but REALLY????? I had already got urine spilled down my arm and all over my hand and was trying to clean that off first, I was fully aware that the stupid thing was dripping. Its nice he can sit and yell in the door way yet never lift a finger to help me clean it up!!!!!!! I know he is probably just as frustrated, well maybe not in the same way, but he is now living with a crazy person. One that has a hard time even trying to figure out why I keep living. I am sooo ready to just give up, but I know I wont, because that is not my nature, I am a fighter and I will continue to fight whether I want to or not, because that is just who I am.
This morning for instance, I was supposed to go have an independent medical exam done, and getting ready all I hear is my husband yelling at the cats. Guess what? Hes not mad at the cats, but he wont yell at me (well until he just cant handle anymore, when it gets to overwhelming then he yells) So I told him to quit taking it out on the cats, its not their fault my life has been ruined. So finally we leave the house, take two hours to drive through rush hour traffic to get to the hospital near downtown Los Angeles which hurt like hell because of my surgery only three days earlier, and we come to the address only to find it is an old closed down hospital? What is up with that? So we go to the new hospital, then we find the neurology floor and go up. Find what we think is the right place and ask the front desk person, who informs us that the doctor we were supposed to see does do rounds at that hospital but he does not work there as his primary hospital, that he actually works for University hospital. Well the lady was nice enough to call him and when I got on the phone with him, he had no idea who I was and had no appt. scheduled for me. WHAT? Are you kidding me? After all we went through to get down there and to do as we are asked this is what happens? I have papers with the doctors name and address (which was wrong) along with the proof of service. It said it was from the superior court, so I had assumed they had filed it. Is this some kind of game for those attorneys or what, because I did not find it funny in the least bit. Just jumping through another hoop adding insult to injury. I guess thats the way they do business. Apparently putting me through more pain by making me do these things does not even enter their minds, thanks alot I really appreciate how humane you all are !!!!! AS if my life being destroyed was not enough I have to go through this kind of stuff too. Thanks again.
I am so done and over all of this but you know what? My body does not know this so it keeps living, keeps going to doctors, keeps trying to live and fight, keeps trying to not have pain by taking medicine after medicine just so it can keep trying!!!!!! All I can say is I am exhausted, I am so exhausted its hard to think, its hard to be nice, its hard to have hope, its hard to dream because all of those things take energy and good thoughts that I just dont have. I had thought I would learn to deal with it by now as its been over two years, but let me tell you, the anger never goes away, the pain never goes away. That doctor needs to think what he is doing to someones life before he lies about test results to get them to do surgery, just because, well I dont know why he does it, but my question for him would be, is it worth it? How do you sleep at night? I am sure it is better then me.
Friday, January 21, 2011
The Erratic Thoughts of My Mind Lately
I know that the last few posts of mine have been Erratic and I want to explain more in depth from my heart. I have avoided opening it up for you to see because it just hurts to much. Its bad enough living with it inside myself without letting it out for you to see.
I have a very hard time adjusting to this new life, even though its been two years. The reason for this is that I still remember who I used to be. I was a very mild person, very easy going and loved all those that were around me. This is where my true heart is going to come out. I had so many friends that enjoyed planning outings and fun things to do. Going on fun vacations and enjoying life to its fullest. I cannot do this anymore no matter how hard I try and that is what makes it so hard and breaks me heart each and every day.
Yes I was abused as a child and it taught me all the things I did not want to be as an adult. Because I had bad parents, I worked hard to be the best parent in the world. Because I suffered such abuse I swore my daughter would never suffer such pain as I did, I never even spanked my daughter a day in her life. When she did something wrong, instead of punishment I used positive reinforcement. You might realize that in past posts that I refer to not being able to be there for my dad as he has suffered through so much cancer and heart problems, yet I say no good things about my mother. The reason for this is that as an adult my father came to me, he acknowledged the pain he had inflicted on me while breaking down in tears. He apologized and asked for me forgiveness. I forgave him because he had become a changed man. I understood when he explained that it was difficult living with a person such as my mother, and I understand. I understand because I was in and out of foster homes as a child due to the care I received from my mother. I can only imagine what the pain was like being married to someone who hated their children. Because he apologized, I forgave him and built a new relationship with him. We decided to let the past stay in the past and start new. I found he could be a good man, once he put his heart into it, so that is why you will see the change in my attitude, knowing what he did to me as a child.
My mother on the other hand has been nothing but cruel. She will not own up to her mistakes or even admit they were there. There were times she was so out of it on drugs when I was a small child I called an ambulance thinking she was dead. I remember this so clearly and I was only five or six at the time, it was one of the most frightening things I had ever experienced. I remember going to see her in the hospital and her telling us kids she tried to kill herself because she would rather be dead then to have us children. For this I cannot forgive, because how can you forgive something that is not even acknowledged in her mind. Unfortunately because the protection of herself means more to her then her children and that is very sad. Therefore I do not speak with her and have not for quite some time. I have given her chances over the years, but over and over she makes excuses and never takes the blame for her part in what has happened to me. I realized I was better off without having any relationship at all with her because it was completely toxic to me, and those are the things in my life I had gotten rid of. I only surrounded myself with positive things and she was not to be one of them.
Before January 5th 2009, I was the best person I could be, I had so much pride in what I had accomplished in life, and I hate what this doctor has done to me, the person he has changed me into. I had spent 27 years being the best loving parent I could be. I did this by raising my daughter in the exact opposite of everything my parents did. She is beautiful and has two beautiful children. She is the mother I wish I had when I was a child and I am proud of that. What I am not proud of is that I let a doctor convince me into a surgery that was not only not successful, but changed who I am inside. It changed me from that loving mother I was to her, all because he lied and gave me test results that were not true. Had I known the real results (which took me nine months to get after I got out of that hospital). It was for his own gain and he never considered what it would do to me as a person. The person I was. He took me away inside.
I have gone from a person that people loved to be around and I loved being around them, a person that was up for any adventure, a person that showered my family with love and a good home life as well as the person that would do goofy stuff such as rollerskate in my pajamas around the house while cleaning, that was who I was. So yes I do get frustrated and angry. I long for that person I was before that day and wish I could get her back and that is what destroys me. I know she is gone and no matter how hard I try I cannot get her back. I cannot make the pain go away, I cannot get my bodily functions back, I cannot sleep for thinking of all that I have lost because I can and will no longer be healthy like I was. One of my current doctors asked me why I do not show anger and the truth of the matter is, is that I am Angry, I am frustrated, I am at the end of my rope and, I am sad for all I have lost., for all I worked all those years building that was just taken away from me. I am angry that as I live like this he goes on living a normal life, as I am sure I do not even enter his mind because that is the kind of man he is. I Know this because I have contact with another girl that he did the same exact thing to shortly after he did this to me.. That in itself made those emotions even worse. It would be one thing if he did it once and learned how wrong he was, but he didnt learn and he continued on like I did not even matter. I guess while I was in the hospital for almost two weeks and he did not come to check on me or run any tests to see what went wrong, should have taught me that, but it was confirmed when I found he did the same exact thing again.
So yes my emotions and reactions are all over the place all the time, because the biggest loss to me was losing myself because of him, and I just dont really know how to handle that. I dont know if I ever will and this will be my life.
I have a very hard time adjusting to this new life, even though its been two years. The reason for this is that I still remember who I used to be. I was a very mild person, very easy going and loved all those that were around me. This is where my true heart is going to come out. I had so many friends that enjoyed planning outings and fun things to do. Going on fun vacations and enjoying life to its fullest. I cannot do this anymore no matter how hard I try and that is what makes it so hard and breaks me heart each and every day.
Yes I was abused as a child and it taught me all the things I did not want to be as an adult. Because I had bad parents, I worked hard to be the best parent in the world. Because I suffered such abuse I swore my daughter would never suffer such pain as I did, I never even spanked my daughter a day in her life. When she did something wrong, instead of punishment I used positive reinforcement. You might realize that in past posts that I refer to not being able to be there for my dad as he has suffered through so much cancer and heart problems, yet I say no good things about my mother. The reason for this is that as an adult my father came to me, he acknowledged the pain he had inflicted on me while breaking down in tears. He apologized and asked for me forgiveness. I forgave him because he had become a changed man. I understood when he explained that it was difficult living with a person such as my mother, and I understand. I understand because I was in and out of foster homes as a child due to the care I received from my mother. I can only imagine what the pain was like being married to someone who hated their children. Because he apologized, I forgave him and built a new relationship with him. We decided to let the past stay in the past and start new. I found he could be a good man, once he put his heart into it, so that is why you will see the change in my attitude, knowing what he did to me as a child.
My mother on the other hand has been nothing but cruel. She will not own up to her mistakes or even admit they were there. There were times she was so out of it on drugs when I was a small child I called an ambulance thinking she was dead. I remember this so clearly and I was only five or six at the time, it was one of the most frightening things I had ever experienced. I remember going to see her in the hospital and her telling us kids she tried to kill herself because she would rather be dead then to have us children. For this I cannot forgive, because how can you forgive something that is not even acknowledged in her mind. Unfortunately because the protection of herself means more to her then her children and that is very sad. Therefore I do not speak with her and have not for quite some time. I have given her chances over the years, but over and over she makes excuses and never takes the blame for her part in what has happened to me. I realized I was better off without having any relationship at all with her because it was completely toxic to me, and those are the things in my life I had gotten rid of. I only surrounded myself with positive things and she was not to be one of them.
Before January 5th 2009, I was the best person I could be, I had so much pride in what I had accomplished in life, and I hate what this doctor has done to me, the person he has changed me into. I had spent 27 years being the best loving parent I could be. I did this by raising my daughter in the exact opposite of everything my parents did. She is beautiful and has two beautiful children. She is the mother I wish I had when I was a child and I am proud of that. What I am not proud of is that I let a doctor convince me into a surgery that was not only not successful, but changed who I am inside. It changed me from that loving mother I was to her, all because he lied and gave me test results that were not true. Had I known the real results (which took me nine months to get after I got out of that hospital). It was for his own gain and he never considered what it would do to me as a person. The person I was. He took me away inside.
I have gone from a person that people loved to be around and I loved being around them, a person that was up for any adventure, a person that showered my family with love and a good home life as well as the person that would do goofy stuff such as rollerskate in my pajamas around the house while cleaning, that was who I was. So yes I do get frustrated and angry. I long for that person I was before that day and wish I could get her back and that is what destroys me. I know she is gone and no matter how hard I try I cannot get her back. I cannot make the pain go away, I cannot get my bodily functions back, I cannot sleep for thinking of all that I have lost because I can and will no longer be healthy like I was. One of my current doctors asked me why I do not show anger and the truth of the matter is, is that I am Angry, I am frustrated, I am at the end of my rope and, I am sad for all I have lost., for all I worked all those years building that was just taken away from me. I am angry that as I live like this he goes on living a normal life, as I am sure I do not even enter his mind because that is the kind of man he is. I Know this because I have contact with another girl that he did the same exact thing to shortly after he did this to me.. That in itself made those emotions even worse. It would be one thing if he did it once and learned how wrong he was, but he didnt learn and he continued on like I did not even matter. I guess while I was in the hospital for almost two weeks and he did not come to check on me or run any tests to see what went wrong, should have taught me that, but it was confirmed when I found he did the same exact thing again.
So yes my emotions and reactions are all over the place all the time, because the biggest loss to me was losing myself because of him, and I just dont really know how to handle that. I dont know if I ever will and this will be my life.
Wednesday, January 19, 2011
So Confused and Bothered On How To Live This Life
So things have been very rough for me lately, and I have felt very closed off from life.
Its like the saying goes quoted from Carlos:
"You never know how strong you are, until being strong is your only choice you have"
I have had a marathon of Doctors appts. lately, and its wearing me out. My pain has been horrible lately as well as my stress. Since that last post I made about my past and the way I deal with anger, I have really been
very bothered by it. It made me think about a lot of things I had put away and thought I had dealt with, yet there they are again, sitting in my brain, making me remember. I hate that if I am not breaking down in front of people, or complaining about what I have to live with, then I am not acting in the right manner that people think I should with the injuries I have now since that surgery in 2009. I am the one that has to live with this, and I have to learn to live with it in my own way. It took me over a year to be able to sit and talk to people without breaking down, and I think I am doing pretty good with controlling my anger, as that was not so true in the beginning of learning to live this way.
If these same people could live with me 24 hours a day they may see things in a different manner. When I go and have to see someone or talk to someone at an appt. or something, even just visiting a friend, I put my brave face on, put my wall up, and try to be normal in their eyes. I dont want to be different or looked at with pity. Well big announcement, I am not normal, I do not live a normal life and I will never be normal again, and I have to deal with it in my own way. If I cant do that and at least have control of that, I would probably not be here now and that is very honest. People have no idea how many times I get so angry and frustrated with all these things I have to live with I just want to give up, because at times it just does not seem worth it. It pisses me off. It depresses me. I go inside myself and have a hard time coming back. IT IS NOT NORMAL TO HAVE TO STICK TUBES IN YOU TO EMPTY YOUR BLADDER, IT IS NOT NORMAL TO HAVE NERVE AND MUSCLE PAIN MOST OF THE TIME, IT IS NOT NORMAL TO HAVE TO MANUALLY EMPTY BOWELS MANUALLY WITH GLOVED HANDS, IT IS NOT NORMAL TO NOT BE ABLE TO FEEL YOUR HUSBANDS TOUCH, OR TO EVEN FEEL THE COUCH UNDER YOUR ASS BECAUSE YOU ARE NUMB. Do people think I do not know this just because I seem polite and put a smile on my face when I see them? I live with it daily and believe me, its hard enough to live with, let alone having to show you my pain, humiliation and loneliness.
I am so tired and exhausted from going from doctor to doctor, just so my body can function, I wish I was the way I was before that damned surgery that ruined me. I have to make do the best I can to try to go on and make my family as comfortable as I can, which is not very comfortable since everything that is done has to be planned around me and my injuries. I think about who I was all the time before January of 2009, and I am so different it just makes me angry. I was normal like anyone else. I went to the bathroom like anyone else, I had a normal social life like anyone else. But I dont anymore and no matter how angry I get, or how hostile I act, It would not change a thing now, I have still lost all these things and it wont bring them back. I cannot go back and reverse the lies that were told to me, or the surgery he did that destroyed me. I have to go on, and live as long as I can, which quite honestly I question at times, will this take many years away from me?
When I lie in bed at night, when its quiet and dark, it is the time I feel the most like what I feel inside. But it makes me think of all of these things. It makes me think of what I would be doing right now if not for that damage that was done to me. It makes me think of all my anger, it makes me cry, it makes me think of my lost future, or how I lost my business I was just building. But I hide it and keep it all in. I dont want to let it out and show I am weak because I cannot let weakness overtake me, I would never survive that way. I have lost so much over this and the loses just keep coming and I keep dealing with them. Its like being on auto pilot most of the time where I have no happiness, because that is not something I even have time to think about, you just get to a point where you just stop feeling emotions at all, because if you do it will destroy you even worse. I am so busy thinking and trying to remember all my doctors appts. and where and when, and if I have an infection or not, and how its effecting everyone around me, that I dont have time to think of being happy. I am not happy and dont know if I ever will be again. I hope to be one day but for now I am not
When I get to spend the occasional time with my daughter and my grand daughters, they can get a laugh out of me, and make me forget for maybe a few minutes, but that is about the extent of my happiness and I am so thankful for that, but those times seem to keep getting fewer and further between because it seems that I am spending more and more time at the doctors. I see my doctors more then I see them and that is sad. I wish I could still spend as much time as I used to with my family, but its just not possible with everything else that goes on. I am hoping once I get the suprapubic catheter surgery, it will help with at least the infections and that will hopefully give me a little more hope of having more energy and time away from doctors and with my family. I will just have to wait and find out. It could get better or it could get worse. I have no idea what my future holds and that is the worst part of all of this.
Is My Future Before Me Or Behind Me?
I keep looking for my future
It seems so hard to find
Will it bring me happiness
Or will it take my mind
Will my body keep defying me
Only bringing me sorrow
Or Will it let me find a way
To find just a few bright tomorrows
I have no idea what my future holds
As it hides it truths from me
It hides the answers that I seek
And keeps it a mystery
Its like living in this empty place
where there are no answers there
I do not know where I will go
If its something I can bare
Will I have the strength that I might need
To put it in that box
You know the one where my emotions go
In that box that has a lock
I live each day and try to hope
For something better than this life
The one I live each day right now
That is filled with pain and strife
The future I thought that I would have
Is gone and I am lost
One man thought that it had no worth
I was not worth the cost
The cost that I have paid to live
In this sorrow and this pain
How dare he not consider me
To think he was so vain
He thought he was worth more than me
My future that I had ahead
The pleasure that I used to know
Lives only in my head
For now I am lost and so unsure
Of what lies ahead for me
Is the future that I used to know
Gone forever for me to see
Only time will tell, but my box with a lock is here while I wait.
Its like the saying goes quoted from Carlos:
"You never know how strong you are, until being strong is your only choice you have"
I have had a marathon of Doctors appts. lately, and its wearing me out. My pain has been horrible lately as well as my stress. Since that last post I made about my past and the way I deal with anger, I have really been
very bothered by it. It made me think about a lot of things I had put away and thought I had dealt with, yet there they are again, sitting in my brain, making me remember. I hate that if I am not breaking down in front of people, or complaining about what I have to live with, then I am not acting in the right manner that people think I should with the injuries I have now since that surgery in 2009. I am the one that has to live with this, and I have to learn to live with it in my own way. It took me over a year to be able to sit and talk to people without breaking down, and I think I am doing pretty good with controlling my anger, as that was not so true in the beginning of learning to live this way.
If these same people could live with me 24 hours a day they may see things in a different manner. When I go and have to see someone or talk to someone at an appt. or something, even just visiting a friend, I put my brave face on, put my wall up, and try to be normal in their eyes. I dont want to be different or looked at with pity. Well big announcement, I am not normal, I do not live a normal life and I will never be normal again, and I have to deal with it in my own way. If I cant do that and at least have control of that, I would probably not be here now and that is very honest. People have no idea how many times I get so angry and frustrated with all these things I have to live with I just want to give up, because at times it just does not seem worth it. It pisses me off. It depresses me. I go inside myself and have a hard time coming back. IT IS NOT NORMAL TO HAVE TO STICK TUBES IN YOU TO EMPTY YOUR BLADDER, IT IS NOT NORMAL TO HAVE NERVE AND MUSCLE PAIN MOST OF THE TIME, IT IS NOT NORMAL TO HAVE TO MANUALLY EMPTY BOWELS MANUALLY WITH GLOVED HANDS, IT IS NOT NORMAL TO NOT BE ABLE TO FEEL YOUR HUSBANDS TOUCH, OR TO EVEN FEEL THE COUCH UNDER YOUR ASS BECAUSE YOU ARE NUMB. Do people think I do not know this just because I seem polite and put a smile on my face when I see them? I live with it daily and believe me, its hard enough to live with, let alone having to show you my pain, humiliation and loneliness.
I am so tired and exhausted from going from doctor to doctor, just so my body can function, I wish I was the way I was before that damned surgery that ruined me. I have to make do the best I can to try to go on and make my family as comfortable as I can, which is not very comfortable since everything that is done has to be planned around me and my injuries. I think about who I was all the time before January of 2009, and I am so different it just makes me angry. I was normal like anyone else. I went to the bathroom like anyone else, I had a normal social life like anyone else. But I dont anymore and no matter how angry I get, or how hostile I act, It would not change a thing now, I have still lost all these things and it wont bring them back. I cannot go back and reverse the lies that were told to me, or the surgery he did that destroyed me. I have to go on, and live as long as I can, which quite honestly I question at times, will this take many years away from me?
When I lie in bed at night, when its quiet and dark, it is the time I feel the most like what I feel inside. But it makes me think of all of these things. It makes me think of what I would be doing right now if not for that damage that was done to me. It makes me think of all my anger, it makes me cry, it makes me think of my lost future, or how I lost my business I was just building. But I hide it and keep it all in. I dont want to let it out and show I am weak because I cannot let weakness overtake me, I would never survive that way. I have lost so much over this and the loses just keep coming and I keep dealing with them. Its like being on auto pilot most of the time where I have no happiness, because that is not something I even have time to think about, you just get to a point where you just stop feeling emotions at all, because if you do it will destroy you even worse. I am so busy thinking and trying to remember all my doctors appts. and where and when, and if I have an infection or not, and how its effecting everyone around me, that I dont have time to think of being happy. I am not happy and dont know if I ever will be again. I hope to be one day but for now I am not
When I get to spend the occasional time with my daughter and my grand daughters, they can get a laugh out of me, and make me forget for maybe a few minutes, but that is about the extent of my happiness and I am so thankful for that, but those times seem to keep getting fewer and further between because it seems that I am spending more and more time at the doctors. I see my doctors more then I see them and that is sad. I wish I could still spend as much time as I used to with my family, but its just not possible with everything else that goes on. I am hoping once I get the suprapubic catheter surgery, it will help with at least the infections and that will hopefully give me a little more hope of having more energy and time away from doctors and with my family. I will just have to wait and find out. It could get better or it could get worse. I have no idea what my future holds and that is the worst part of all of this.
Is My Future Before Me Or Behind Me?
I keep looking for my future
It seems so hard to find
Will it bring me happiness
Or will it take my mind
Will my body keep defying me
Only bringing me sorrow
Or Will it let me find a way
To find just a few bright tomorrows
I have no idea what my future holds
As it hides it truths from me
It hides the answers that I seek
And keeps it a mystery
Its like living in this empty place
where there are no answers there
I do not know where I will go
If its something I can bare
Will I have the strength that I might need
To put it in that box
You know the one where my emotions go
In that box that has a lock
I live each day and try to hope
For something better than this life
The one I live each day right now
That is filled with pain and strife
The future I thought that I would have
Is gone and I am lost
One man thought that it had no worth
I was not worth the cost
The cost that I have paid to live
In this sorrow and this pain
How dare he not consider me
To think he was so vain
He thought he was worth more than me
My future that I had ahead
The pleasure that I used to know
Lives only in my head
For now I am lost and so unsure
Of what lies ahead for me
Is the future that I used to know
Gone forever for me to see
Only time will tell, but my box with a lock is here while I wait.
Subscribe to:
Posts (Atom)