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.

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.

CES and How I Deal With The Anger Of It (Warning, might be too much info)

The other day at a doctors appt. I was asked by my doctor, why I dont show more anger, he said I should be more angry. What he does not realize is that I am extremely angry, so angry at times its hard to function.  It took me a few days of contemplation on this, and a lot of thought to be able to answer this to myself. The thing is that I am full of anger, and for over a year after my surgery in January 2009 I could not go a day without breaking down and crying and losing control. Crying because of being angry that someone took my life in their hands and made me live this way just to further themselves with their lies. Crying because of the pain and humiliation I now had to live with, Crying because I now had to live a new kind of life that is just not fair. Its not fair to those around me to have to deal with, and therefore making them angry and hurt as well.

I have always had this theory and my answer to this question of anger is going to blow my theory right out of the water, this theory that I have stated time and time again over the years. I have always said that if you have abusive parents and you are a child that the parents are at fault for either allowing or causing this, but once you become an adult, you are responsible for your own decisions and your own life. Now this is where my theory gets blown out of the water. I realized after much thought, that I am handling the anger the same way I learned to handle anger as a child. This post is going to get very personal, as I really need to explain my past to explain my present. It is the only way it will make sense to anyone, because my doctor made me realize that I am the only one that does not see what others do. I just assume that they would understand that I am just dealing with it in my own way. I will be telling of things that I never thought I would put out there, things I have kept to myself inside  my whole life. So I guess here it goes, and it might  be a long read and at times hard for you to read,  but I think it will explain my reaction to anger and make it a little clearer for those that do not understand, when they talk to me why they do not normally see the strong anger I have, I might seem somewhat normal to them.

I guess this is where I go back to the beginning :) I was the youngest of six children and had probably two of the worst parents in the world. I was physically abused over and over, year after year. My dad used to have this thing that he used to beat us with that was made up of 7 flat rubber straps duck taped together. I can only explain it as like a flogger. To make it hurt worse he actually put holes all through it so the rough edges would make the pain worse. This was used on a normal basis on us kids, for the slightest thing we might do wrong, or even if it was just thought to be wrong. I learned from probably around 5 that the more you cried and showed your pain, the more you were to get hit. So I learned not to cry and just take it. You just take it and go inside yourself. I learned early to control. That at least I did not have to give that satisfaction of letting others see how much I hurt.

Then I had a mother that was addicted to drugs, who if she was not at work as a nurse (which is where she got her drugs) Then she was sleeping because she was so drugged out all the time. She never stood up for her children and sat and watched the abuse. Not only were we whipped with this rubber tool of my dads making, but we were also made to sit in dark closets for hours on end, or made to stand on one foot naked on the counter in the kitchen and if we even dared to put the other foot down, out came the rubber whip. To say the least we learned really great balance. It was extremely humiliating to stand like that in front of everyone else in the house and see the looks on their faces, that look that lets you know they are glad its you this time instead of them.

At the age of 8, I was at my church and was asked to help our minister to take some measurements in a shed on the property. Being that I was only 8 and with no adult who cared enough to watch me and give me guidance, I agreed to help him. I had no idea what evil was in the world and no one to teach me at that age about bad people. Well this minister took me to this shed and molested me, then left me locked in there ( I have no idea what his plans were for me), but thankfully there was this tiny window that I was able to smash out with my foot and escape. I ran home and told my parents, and they did call the police. The man was arrested and it was found he had many many victims, and some were not as lucky as me. The thing with this whole situation is this.... My parents way of dealing with this happening to their daughter was to act like it never happened. It was like the next day everyone acted like nothing had happened to me and back then Therapy was not a well known option as it is now. They never asked me how I was dealing with it, they never talked to me about it, they never mentioned it again. To them it was over but for me it is still not over. Again I learned to deal with a devastating thing on my own. I had to deal with the anger, with the degradation of my own body, with the nightmares (which at times I still have to this day), and with not being able to depend on anyone but myself. I learned that I had to control my feelings. That was how I survived and that is why I am here today. Because I learned how to control and compartmentalize things. I take that anger and put it in a box inside me and keep it locked up. God help those that might be around me if I ever let go of all that anger and rage I have put away for so many years and from so many things that have happened in my life.

So this is how I handle my anger. I learned it as a child, as a teenager and as an adult. It has been the one method that I have control. I have control therefore I survive. For every bad thing that has happened to me in my life (and there are many) I control my emotions, its what I do. So If you see me and talk to me  about something that should seem so much more devastating then I let on with my emotions, its because I learned to control my anger and all my other emotions at an early age, and I still use that same method to this day. With every bad thing that I have gone through in my life, I control it, I put it in a place where it cant hurt me, where I don't lose. You see I learned as a child that if you let that anger out, it gives that person that angered you the satisfaction of further hurting you. To me this is letting them win even worse and I refuse to let that happen.

So Yes I have extreme anger over what this doctor did to me with this surgery and his lies, but he has already taken enough of me and I refuse to give him anymore of myself then he has already taken. He has taken my bodily functions, makes me live in constant pain, he has taken my sensation in parts of my body, he has taken the life I used to live and made me live a new life, he has taken my trust of doctors, but I will not ever give him who I am inside, he wont get that from me. I refuse to let him have that part of me., I will be 100% honest, I hate him. I hate him with a passion you could not even imagine, for the lies he told me to get me to consent to a surgery where he gave me inaccurate test results and never told me the risks I would suffer to get his way. I hate him for cutting my nerves and making me live this humiliating life. I hate him for so many reasons that I cannot even express. But I will never give him the satisfaction of knowing that he continuously keeps me from sleeping, from being able to eat, from living the life I should be living if it were not for him. I at least still have control of my emotions (or maybe I dont as much as I would like to at times) and this is why I control what I show to others.

What really gets me as well, is I am not a person that hates. I hate the word hate. Yet there you have it. I hate him, he has made me capable of hating someone, which I thought I could and would never do. When he took my life in his hands with his lies and ruined who I was, he taught me how to hate.

Yet I still can see you and you will wonder why I do not seem as angry as I should. Dont take for granted that I do not feel it, just because you cannot see it, just realize I only have control of it but its still there.

So for my doctor who asked me this question the other day at my appt.(you know who you are) I want to thank you for having me think long and hard about this, and realize that I do still use the tools that I used as a child. So I guess my theory after all was not as accurate as I thought it to be.

Looks like Surgery Is hopefully the answer

Well I went to the infectious disease doc today and he agrees with putting in the suprapubic catheter. Everything I have been dealing with seems to be pointing to possible colonization of bacteria in my bladder, and both my urologist and the infectious doc agree on this route.

I will be scheduling my surgery as soon as possible, hopefully to avoid more infection. Lately there has been some really bad stuff coming out of the bladder that looks like a mixture of sand and mucus. I asked the infectious doc today and he said that its a good indicator of having stones in my bladder, as well as a breeding ground for bacteria, since my bladder does not work and things settle and build up in there. I hate when I start to get hopeful that something might work only to be disappointed, but this at least sounds like it could help, at least I am hopeful again.

I have my ultrasound next week to look for stones, and will also be scheduling my surgery. Apparently the surgery should not be too bad and its an out patient procedure so hopefully things go as planned. Also the infectious doc said that he will have me come in the day before and give me two different antibiotics by IV and then also for the next four days as well as IV fluids along with the antibiotics. This is to make sure that I do not again get an infection while trying to help the problem. It is just so frustrating, but at least I have now come to terms that this is what needs to happen, at least its something that may help. If not then they will remove it and go back to where I am, which would probably mean infection after infection. At this point I am out of ideas and so are the docs, so lets hope good things come from this.

I know that it wont fix my problems of my bodily functions not working or give me back the feeling where I am now numb, and I know the pain I live with, will still be there, and I will most likely be dependent on pain and nerve medication for the rest of my life (hoping that this does not damage my kidneys) as well as the indignity of having to wear diapers, but if I could at least have less infection that drains my body continuously to where I cannot even function from the exhaustion, then that will be a bit of improvement on my life at least. Maybe just maybe if I can go a month without infection, I can at least get a bit of my energy back because right now I feel like I am dying a slow death

My pain levels lately have been horrible and seem to always be getting worse. I am now having horrible pain in my heels when I just step on them to walk and I am hoping this CES is not progressively getting worse, causing more and more damage to my already damaged nerves. I try to go for walks to help with the pain, but its very hard for me to even get up the energy for that any more. I hate this life I live and so often want to just end it, but I know that would only be painful for my family and friends and that is not fair to them. Its not fair what I have to live with, but unlike that asshole doctor, I would never put my loved ones through that. I would not even do that to my worst enemies as I do not have a black heart like some people, like the doctor who did not care what he did to me. I am sure he goes on with his life, never giving a second thought to what he has done to my life. If you are reading this, do you Mr doctor? Do you have a conscience? Do you have nightmares about me like I have of you?

I hate that I have to live my life this way, and its so hard to be happy or even have one happy day but I try. I try to hope, to hope that I will see my grand daughters grow up and have children of their own.

The Darkness I am

It used to be the  light in my day to day life
I was a great mother, and a wonderful wife

But the light keeps getting darker in this life of mine
The further I go on  and the longer in time

They say the body is a temple to care for
That if you do it right, it will give you more

My temple has crumbled and is falling apart
Piece by piece it has shattered my heart

It amazes me that one man had that power
To smash in to bits what once was a tower

A tower of strength that seems no one could destroy
But he smashed it apart like some small plastic toy

My days I had known were so bright and so sure
My days now are spent just looking for a cure

A cure to live for, something I can grasp and embrace
Will I find it in time, can I really win this race

This race to find happiness and make the dark go away
The brightness of love that will shine on my days?

Its hard to stay hopeful with the things that I endure
The things that make death seems so much closer for sure

I want to remind that man who destroys
Of the light that he takes and breaks just like toys

You wont forget me, I will remind you each day
How your knives made of steal made me live this way

It would not be so bad if it were only your knives
But you go around with your lies ruining lives

For you never would have touched me with your knives made of steel
Had I known of your lies, you and the devil making your deals.

I wonder what you in the end will have to pay
For your deal with the devil and the lives that you slayed

I have a general idea of my future do you?
I wonder what the devil has in store when your due

I hope it was worth it to your soul.

Well It looks like I am going to make a big decison on my health and Hope that I can have a little better of a future, or at least a future at all

Well I hope you all enjoyed your holidays, I made the best of what I could. Since my last post I have had yet another infection, that is two since being in the hospital end of august, and between that time I was on suppressive antibiotics, which obviously did not work. I went to see my urologist and a couple things happened at that appt., First off I need to have an ultrasound, which will be the first week of January, to see if I have kidney or bladder stones, because if I do that could explain the many infections. The reason this is a possibility is that when the bladder does not function, things build up that would normally be flushed out, but with a neurogenic bladder this does not happen. If I dont he recommended the same thing as the infectious disease doc. Getting the surapubic Catheter right below my belly button, which means another surgery and having a tube with a valve on it coming out of my belly to get used to. I will have to change the type of clothing I wear and again learn to live another different life. Since I have already had two infections since being in the hospital last from going septic, I am really starting to consider it.

I think I have been living in denial for quite some time now, and thinking I am not as bad as I really am. The doctors keep telling me how bad it is, but I was refusing to believe it. In my mind I do not see my self that way, but my body tells me they are probably right. I had told the doctor if that time comes then I will consider it, and her response was " you are already there" I guess I just did not want to believe it.

Here is a definition of the catheter:

suprapubic catheter

Etymology: L, supra + pubis + Gk, catheter, a thing lowered into

a urinary bladder catheter inserted through the skin about 1 inch above the symphysis pubis. It is inserted under a general or local anesthetic. It is used for closed drainage and may be left in place for a time, sutured to the abdominal skin. Benefits include a lower incidence of urinary tract infection, and ease of ambulation. Disadvantages are that they must initially be inserted through the abdominal wall by a physician and the insertion site must be cleaned daily using sterile technique if the patient is in the hospital.It must also be changed by medical personnel at least every 4 to 8 weeks.

At the rate I am going and the damage that I think is happening to my body, I worry if I will see my grand kids grow up, get married, have children.  I just want to be here to see those things and I can no longer deny it. Late the other night, Christmas eve, my husband and I lied awake most of the night talking. The same as I have hid my feelings from him, he has apparently hid those same fears from me. Maybe we have both been in denial about the deterioration of my body, and how it is constantly going downhill. We both admitted that we were afraid of my not being here any longer if I continue on this way. I am so afraid of this but I know in my heart it might be my only chance to get out of this infectious situation, at least for the most part. From my research people with this type of catheter report a couple infections a year, and if you have the one that is silver coated those odds can even go down. Right now I cannot go more then two weeks without infection and its really wearing my body down, to wear I have no energy to do much of anything, most times lately I am just checked out of life and it kills me of what it does to my family. I am thinking at this point that I may have to give in and have this done. My husband and I both agree that at least we think it cant get worse then it already is, so its worth a try.

If on my test in January shows no stones, I have decided to go ahead with this surgery. Its just another blow to me, and it just seems they don't stop. Its one blow after another. Maybe just maybe, this might help some, and let me get some life back into my body. I need this to work for my own sanity. I also realize it might not be effective and I then would have to just go back to where I am now, which is not a good thought because I don't know how long my body will last at this rate. The pain I live with alone would make most people give up, and believe me you would never want to have my pain, but the infections are even worse, and believe me you cannot get much worse than the pain I live with, and its hard to even imagine that it could be worse, but at least I can take meds for that. This infection thing is right now out of my control and it could kill me. That is the honest truth. So Yes I will still have the horrible pain that limits my life but at least I have a chance to live longer if I can get the infections under control, and this surgery is my only hope of doing that.

Those of you even considering having surgery for a tarlov cyst, and think that is your problem. Please Please Please reconsider that decision so you don't have to live like me. If you think your pain is bad, look at all options before going towards surgery. Although I have seen a few success stories from a couple other doctors (not mine) there are not many, and maybe just maybe those doctors that had success were being honest with their patient and had been given honest test results. That was not the case with me, but remember this. I thought I was being told the truth and I was not, so don't just see one doctor, see many, and have it confirmed. YOU DO NOT WANT TO LIVE MY LIFE.

Tis not the season for me, or at least it does not feel that way

Well again its been a while since I have blogged. I have been just trying to hang on by a string, and each day is harder then the last. I thought that I would adjust by now, but its so so hard.

I was off of antibiotics for 17 days, and now another infection has set in. I think this is the worst one yet, as its the first one that has made my kidneys hurt. I never knew how bad pain could be in your kidneys as I have never had an infection in them before. They have always been in my bladder and urinary tract. I am also sooo tired all the time and find it hard to wake up before noon each day. Its literally ruling my life, this CES, and even though its been almost two years now, each day is like it just happened and I am not doing so great mentally with it. In fact not only is each day like the first learning to live with it, but it seems that I just keep getting worse.

The infectious disease docs do not understand why I have so many infections, and its very scary because they seem to get worse each time I get one. I have an appt. tomorrow with my urologist, but I went in to the infectious disease doctor yesterday because I was in sooo much pain from my kidneys and am finding it hard to function at all. They put me on Avolox again, but that is only while they are doing a culture to see if this will treat it. The fear I have is that it wont. I am afraid because not only would it mean ending up in the hospital for treatment with iv meds, but I would also spend Christmas in the hospital away from my family.

There has got to be some solution to all of these infections from cathing. I don't know what it is, but I fear if it is not figured out soon, eventually there will be no treatments left for me and then what? Does it just kill me because it cannot be treated? These are the thoughts and fears I live with every day. I start to get optimistic when I go a week or so without infection, and then that just gets blown out the window as soon as that next infection hits. I am just so afraid all the time. When I get feeling this way I just go inside myself and find it hard to have the will to keep trying. I have been taking so many vitamins and herbs to try to boost my system but nothing seems to work and it makes me just feel like giving up and giving in to it.

I also have to schedule a scan of my bladder and kidneys to make sure there are no kidney stones in there, as that is also a common thing that can happen when your bladder does not work. I have never even thought of this, but my doc yesterday told me this is very important and could possibly be the cause of the pain in my kidneys as well. I will find out from my urologist tomorrow and see what he says.

My husband is driving me crazy, he keeps making me take my temperature, blood pressure and pulse ox like every hour because he is also so very worried. Its so stressful and exhausting. I know he is doing it because he is also scared. Hes scared of losing his wife because of this damage that was done to  me from the surgery that caused this back in January of 2009. I don't know how long I can keep doing all of this, but I know I wont give up, it just completely pisses me off that surgeon thought he could destroy my life, without any warning of what could happen to me. I sometimes wish the same thing for him, but I know that the wrong state of mind to be in. Its just very hard that not only did it ruin my life, but it has made if very difficult to watch my family in pain watching what it has done to me.

I am hoping that I will not be in the hospital for Christmas and that at least I will get to spend it with my daughter and grand daughters. I will find out Thursday what the cultures show, and am praying that my kidneys are not now being effected by all of this crap. I am just really really tired of it all. I try to get in a better mood but its so hard because there is nothing to be happy about for me right now. I thank god I have my husband, daughter and grand daughters to brighten my days every now and then. Its like the other day I told my husband that I could not imagine going through this alone with out having them in my life. If I did not have them, I can honestly say I may not be here right now. This stuff is so hard to live with, that at  times its almost to hard to find something that is worth living for. Its a very shaky balance of good and bad, the good being my family and the bad being the surgeon that ruined my life and made me live my life this way.

Well Its Been A While But I Am Trying To Work Out How To Live With This Still ...............

The last week or so has been very difficult for me. I have been off of antibiotics for almost a week, and I have to say its a very scary feeling. I guess it would not matter if I was on them since none of the pill form work for me any more.

I have been trying to work out a system for myself that will boost up my immune system and stop these infections. I am taking many supplements such as B complex, B 12, D 3, C, Folic acid, Calcium, Magnesium, Dhea, Cranberry tablets, Black Cohash, and several others that I cannot think of at this moment, plus probiotics. My immune system is shot and does not work, in fact the infectious disease specialist is pretty sure that it has shut down. He did say there was one pill I could take, but I looked it up and it seems it is a carcinogenic and turns to formaldehyde in your bladder which sounds super scary. I also take my regular meds to control pain which are Opana, Norco, Valium, Amitryptiline, and Soma, along with my synthroid for my thyroid. Can anyone say confusing? Its very confusing as to what to take and when but I do the best I can. I have no idea if its working or not, as I am not feeling any better.

I hate when I feel this way because it really is depressing and makes you feel hopeless. I mean come on !!!! I am taking everything I can think of to make  my system stronger but I still just feel weak and no better. I know there are those that believe that vitamins can make all the difference and then there are those that feel that they make no difference at all. I am giving it my best shot and that is all I can do right now. I do feel like I have another infection, feeling the hot and cold sweats, the fatigue and just plain feeling bad. But I am trying all of this to see if it will take care of it instead of having to have iv antibiotics. I don't want to go in the hospital again, as it was way to scary, but it may be my only option, and my only option for ever, every infection I get. That is what is really scary. What do I do though? I have no other choice. What my hope is, is that all of these vitamins will kick in my immune system and make  me stronger, although its pretty hard to avoid the infections as I have to use catheters 5 to 6 times a day now, Please let it  give me energy and help my body fight like it used to before that disastrous surgery of January 09, which I deeply regret after finding out about the lies that led me there and also now here, where my life sucks.

Its strange too, because I was so worried about all the nerve and muscle pain at the beginning of when I was damaged (which is immense), and that is the least of my problems now. Now its all about just staying alive and having medications that can help me do that. I live with the knowledge that CES can take me out at any time it wants, and that is a fact. I learned that when I ended up in the hospital with sepsis.

I am also very saddened that I don't get to go see my new grand baby as often as I would like, but that is also my reality. When my first grand baby was born and home, I went to see her every day. In fact a couple weeks after she was home I was also able to go on vacation to Oahu and Kauai, and I remember my daughter calling me daily while there, begging me to come back and help her because she was so tired. I was busy exploring the islands, going on helicopter tours, swimming with dolphins and hiking. It is apparent that my daughter is getting the idea of what I am living with, as she does not even ask for my help now. I think that is to avoid the disappointment :( And that is what really hurts, the fact that even my daughter knows I am not the woman I was. The strong woman who was there for anyone who needed me at any time of day. No I am not her anymore and I have to come to terms with that.

I have also found that those doctor searches are worthless. I did one on the surgeon that did my surgery before I consented to it, that lied to me about test results, that destroyed my life and he came up clean. Since then I have learned there have been several to many lawsuits filed against him about similar outcomes as mine. You know what is amazing, its that our great government plays a part in that information not getting to you so you know. Yes, as long as the lawsuit never sees the light of day, that doctor will have a clean record, and you will never know that this has happened before and you were not the only one. So if you do a search on a doctor to make sure he is good before consenting to a surgery, keep in mind, as long as he does not go to court, it will never see the light of day. This really angers me. I wish I had known his past history, the real one as I would have never ever let him lay a hand on me, so remember this if you too think you are safe doing this. I thought I was.



I will never be safe in my own life again.