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.
Tuesday, May 24, 2011
Tuesday, April 26, 2011
Away for a while taking a break, sometimes things just get to overwelming for me.
As you can see, I have not blogged in a very long time. I have been having a ton of issues to deal with, and its been very exhausting and depressing for me. Sometimes when the depression sinks in, its hard to want to do anything or even make myself do it. Blogging was on the last of my list of things to make myself do.
My pain has been very severe lately, and its been a struggle for sure. I am not sleeping well, but am hoping this will improve. I did not know when I got the supra pubic catheter, that it could cause bladder and urethral spasms, but they are horrible. Picture what it would feel like having a an electric cord stuck up in there, well you get the picture. It seems they are the worst at night, and for some reason, this last catheter change has not been so great. It seems that each day I am having more and more issues and am so glad that the time for a new one is coming up soon because I think that maybe there must have been something wrong with the placement to cause this pain, or its just my bladder and everything reacting to a foreign object being in my pelvis. All I know is between those issues and the pain from my back all the way to my feet is getting overwhelming for me again.
I have also had family issues that have been difficult, such as my daughters husband suffering a grand Mal seizure and not being close enough or in good enough health to really be much of a help to her as I once would have been. This kills me inside and rips out my heart. All I ever wanted in my life the most was to be the best mother and grand mother and I am not holding up to either one of those roles since this damage that was caused to me from that surgery to my spinal cord, which again brings the depression even more. My husband also has been getting very frustrated with me and my issues and I know how hard it is for him to have lost the wife he once had. He never says it and keeps it locked up, but I can see it in his eyes. It hurts him a lot and I understand that. I just pray he sticks around as he has so far. I don't think he would ever leave, as he is a great man, one of those rare ones. He will sit and suffer along with me before he would walk out the door, but its hard knowing how much it hurts him to see me hurt so bad all the time.
We also made a change and moved to an undisclosed address due to having people that I think were parking outside my house watching it quite often. My husband left for work at 4AM and seen them there even that early. It was starting to make me feel like a prisoner in my own home. Now I am not sure who they were parked there watching, and I have no proof, but I have my suspicions, enough so to make me want to move and that is what I did. The only person that has my address is family and my attorney and it will stay that way, so I can at least suffer in peace and not feel like a bird locked in a cage. I mean seriously do they think I am going to go bungee jumping or something. The most I can do is go for walks, and I would like to ease my mind as I do so. So hopefully this will be so. I am sure by now you have all noticed there are no names here, because this blog is nameless for my own protection. I will never use any ones names to protect them as well as myself.
Anyways I just wanted to write a short blog while I had it in me because quite honestly its getting harder and harder as this injury gets worse to write about it. I am not sure when I will blog again. Probably after my next round of doctors appts. this month. Hopefully I can find out what all this electrical shooting pain increasing is all about, and maybe just maybe one out of the many doctors I have to see now will have some idea of how to get some kind of control over it, as well as try to help me get my bowels back under control as they are still not in any kind of control since my last emergency surgery. I have been guaranteed that the surgery irritated the spinal cord injury and that is what is causing that, who knows this increase in the shocking pain may also be from that. Oh well anyways I just wanted to update for those that follow my blog.
My pain has been very severe lately, and its been a struggle for sure. I am not sleeping well, but am hoping this will improve. I did not know when I got the supra pubic catheter, that it could cause bladder and urethral spasms, but they are horrible. Picture what it would feel like having a an electric cord stuck up in there, well you get the picture. It seems they are the worst at night, and for some reason, this last catheter change has not been so great. It seems that each day I am having more and more issues and am so glad that the time for a new one is coming up soon because I think that maybe there must have been something wrong with the placement to cause this pain, or its just my bladder and everything reacting to a foreign object being in my pelvis. All I know is between those issues and the pain from my back all the way to my feet is getting overwhelming for me again.
I have also had family issues that have been difficult, such as my daughters husband suffering a grand Mal seizure and not being close enough or in good enough health to really be much of a help to her as I once would have been. This kills me inside and rips out my heart. All I ever wanted in my life the most was to be the best mother and grand mother and I am not holding up to either one of those roles since this damage that was caused to me from that surgery to my spinal cord, which again brings the depression even more. My husband also has been getting very frustrated with me and my issues and I know how hard it is for him to have lost the wife he once had. He never says it and keeps it locked up, but I can see it in his eyes. It hurts him a lot and I understand that. I just pray he sticks around as he has so far. I don't think he would ever leave, as he is a great man, one of those rare ones. He will sit and suffer along with me before he would walk out the door, but its hard knowing how much it hurts him to see me hurt so bad all the time.
We also made a change and moved to an undisclosed address due to having people that I think were parking outside my house watching it quite often. My husband left for work at 4AM and seen them there even that early. It was starting to make me feel like a prisoner in my own home. Now I am not sure who they were parked there watching, and I have no proof, but I have my suspicions, enough so to make me want to move and that is what I did. The only person that has my address is family and my attorney and it will stay that way, so I can at least suffer in peace and not feel like a bird locked in a cage. I mean seriously do they think I am going to go bungee jumping or something. The most I can do is go for walks, and I would like to ease my mind as I do so. So hopefully this will be so. I am sure by now you have all noticed there are no names here, because this blog is nameless for my own protection. I will never use any ones names to protect them as well as myself.
Anyways I just wanted to write a short blog while I had it in me because quite honestly its getting harder and harder as this injury gets worse to write about it. I am not sure when I will blog again. Probably after my next round of doctors appts. this month. Hopefully I can find out what all this electrical shooting pain increasing is all about, and maybe just maybe one out of the many doctors I have to see now will have some idea of how to get some kind of control over it, as well as try to help me get my bowels back under control as they are still not in any kind of control since my last emergency surgery. I have been guaranteed that the surgery irritated the spinal cord injury and that is what is causing that, who knows this increase in the shocking pain may also be from that. Oh well anyways I just wanted to update for those that follow my blog.
Tuesday, March 29, 2011
Its been a while because I am lost and dont know where to start :(
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.
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.
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.
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