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.
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