Its been a long time and I have been MIA

Well dear blog, as you can see I have been neglecting you :(

There just has been so much going on lately and its really hard to keep up. I have been in and out of the hospital, have had really severe infections, such as an abscess the size of a baseball in my bladder due to my supra pubic catheter, although I did not feel it till I went septic. Been dealing with hopefully finallizing my legal battles because of this damage, and hope that someday someone can stop the doctor who creates this misery.

I am just trying to hang on by a thread, and trying to get my health back but its been very trying at times, and right now is one of them. I have had IV treatments for the 7 days of two different antibiotics and am hoping it is just being a delayed reaction that it does not feel as though they are working. If they dont and it comes down to the suprapubic catheter repeating the same staph again, I am not sure what options are left for me to control the infections.

It just seems to get more and more complicated, and I dont know what will become of me or how long I will last. I am in a very bad state mentally right now because of feeling so crappy, and I am hoping something will change for the better so that I can have some kind of hope.

For those that are considering tarlov surgery please please get several opinions and really think about what it can do to your life, as mine as I knew it has been destroyed and I know I cannot go back and it will not get better. That is my reality right now and its very hard to live with. So much so that I really cant think of anything to write because it would just all be bad and make you all reading this blog join my circle of pain and misery.

I really really hate that I was tricked into this decision of surgery and have wished thousands of times if only I could go back, but I cant and its what I have to live with now. Really take this seriously, its no joke, it can ruin you forever.

I have been focused so much on my pain and what this spinal injury has done to me, I forgot about taking care of my marriage.

Wow what a surprise, now my marriage is in jeapordy all because of one doctor who thought they could lie and do a surgery that ruined most of my life. What I overlooked was the part of my life he had not yet completely destroyed, and it may be moving that direction. I realized right upon waking from surgery that I could not feel touch in my private areas, and we have lived without intimacy for almost 3 years, which everyone knows is so important in a marriage, and lets just say we were very active in that department before this all happened with this surgery..

I just realized tonight the real damage it has done to my relationship with my husband as well. I figured that since he never mentioned it, that at least that part of my life was still good. That was not the case, he was just very good at holding his emotions in. I can tell he is trying his best to be a loyal husband and stick to his vows, but it might be getting to be to much even for him. I guess it just takes the time to get to that boiling point till you really find out the true status of your marriage. I found that I am not the wife I thought I was even though I have been damaged permanently, that inside I have changed so much mentally that I have become a difficult person to live with as well. I can only imagine what it is like for him, and I cant say I blame him.

What concerns me in this place we are in, is what if it does end? Then what happens to me. He has taken care of me, he has supported me, his insurance has paid my medical bills. He has cleaned up all the mess from my bowels as they lose control, listened to me cry in the night, I guess there is only so much a person can take. We agreed to try to make it work, but now I am very scared and so is he. He wishes he had his wife back and I wish I could give that to him.

How can one person so completely destroy not only one but two lives, by telling lies and destroying a body. How do they live with that? I would really like to know how he sleeps at night, knowing the destruction he has caused.

I am aware of the effects it could have on my husband, and I just hoped that he could handle it. That may not be so, because we have been fighting more and more lately and it seems like I am a big burden to him now, instead of the woman I was before, the one he would move the world for. I am lost right now and do not know what to do. I think about a future without him and it scares me because he is the one that takes care of me, I am a dependent on his insurance, what if that goes away ? Am I going to end up on medical with sub par care, just because of injuries I have now that I should never have to have to begin with? Its a very scary feeling and has been keeping me up night after night. Before I would wake him if I was in pain, now I am reluctant to do that, because I feel like I am already walking a tight rope with this and him.

I have all of the parts of me that have been destroyed, and now it seems that I could have the ultimate loss, the love of my life. This is so wrong and I am so angry that I have been put in this place, somebody has to make this right or who knows what will happen to me. Will I end up on like the homeless, with no where to go and no medical care that I so desperately need because now I am disabled and unemployable? It just keeps getting worse and worse and more and more scary. I do not know where my life will end up now and I dont know what to do about it. All I know is that I have never felt a more powerful anger and sadness at the same time.

I do understand where he is coming from and I have felt lucky he has been here this long. I mean who wants a wife that cannot have intimate relations because she cannot feel, and has to worry about the risk of infection? Who wants a wife that cannot take care of a home. Who wants a wife that can do barely anything a normal wife would do? There are so many better women out there, that are healthy and could be all of that but I have no hope of that ever again, none, and it makes me not want to go on. I know I will because I am a fighter.

I think the worst situation happened tonight because my daughter may have to move in with us, one nine month old and one five year old, and I think that is what has pushed him over. He already spends so much time and money taking care of me and my medical needs, taking on driving me to doctors appts., making me dinner, having to pay someone to clean because I cant, emptying my suprapubic catheter in the middle of the night, and now this just might be too much and it scares me to death. Hes at his breaking point with the anger and exhaustion, I can see it, and I dont know where it will go from here, but at this point it does not look good.

Dont get me wrong, hes a wonderful man, but really how much can one man expect to give an get nothing back. If the tables were turned I am not sure I could handle it either. I am just about done, and for the first time in my life, I dont know what will come next and that is frightening ..................................

So it seems I am going to lose my mind as well as the life I had before surgery

I dont even know how to start this blog post, as my mind cannot even function anymore due to the constant pain and the constant mental stress all of what is going on is causing me. I am thinking this next week I need to find a good psychiatrist, because I just cannot deal with this crap anymore on my own. I was not built to deal with people who don't care and don't take responsibility for their actions. I am going to have a mental breakdown and I feel it coming. I really need professional help at this point on how to deal with it all, And I need a lot of it because I am at my breaking point now. And all is a lot of stuff. Its like the other side, yes the ones in my lawsuit have dug a very deep hole and threw me in it, and are slowly putting shovel after shovel of dirt in it, until they finally have me buried.

Today my husband gave me a new email that has more demands from the defense side. Seriously how much do you expect me to handle. I can hardly function each day as it is with all the pain you have caused me, that I get to live with for the rest of my life, due to the lies that were told to me to get me to consent to a surgery that destroyed my life. Well I cant do it, I don't even have the physical ability to look for all of this stuff you are demanding now, and my husband is going to have to take over because I just cant handle it anymore. You know what is really sad, is that he did not cause this you did, yet we are constantly being bombarded with demands for more documents, medical records, education levels, income paperwork, tell me do you want my first and only born child as well. My family did not cause this you did. Yet I yell at them and tell them not to even talk because I cannot even stand the sound of people talking my mind is so screwed up and when I get so stressed it makes the pain all the more painful by irritating my nerves.. I try so hard to be strong, to make it through each day, I have been trying to meet your demands no matter how much of a toll it takes on me mentally and pain wise. Its like it was not enough destroying my body and making me question why I keep going, do you know how many days I have thought of ending it all, but now it seems you are trying to take it all the way to the end and make me lose my mind of top of it all. PLEASE STOP before I go crazy.

I am surprised I still have a husband for what he has had to put up with since Jan 09. He has completely lost who I was, the wife he married, he now has this shell of a person who is in constant pain and cannot enjoy life with him, and I give him all the  credit in the world that he is still here. I am not sure if I keep going the way I am, which is at a very high speed downhill, how long he will stay. Would that make you happy to know that not only did you destroy my body and my life, but you want to finish it off by destroying my family too because I take it out on them? I hate that I take it out on them because they are my anchors that have kept me here. If I had been alone, it might have been over a long time ago, because they keep me going, knowing I could never hurt them in that way. It is so so hard to keep this struggle going and to keep faith, with all that gets thrown my way as I try to just control the pain,

I have been trying to be the bigger person here, even though I suffer day in and day out, not talking about who did what, not naming names and hoping the legal system works, but I am losing that hope as it seems they are just taking advantage of it to make my life even more miserable than it already is, by demand after demand. The first year after this surgery in jan 09, I woke every day wanting to die because I could not imagine living the rest of my life with the damage that was done to me by you people. I thought I had learned to get my anger to a place and accept that this was my life now that I had to learn to live, but it just keeps getting worse and I do not know how much more I can take. That is why I am going to get help, to find a professional to talk to and hopefully talk me down from where I am, and how to cope with this all. Will you just finish this and stop trying to destroy me PLEASE. You know what is in those records and the medical Hell I have gone through since it happened, what more do you want?

I thought I was doing the right thing, by being quiet and keeping names out of this, and letting justice take its course, but I am wondering should this be the way I should handle this, or should I just put it all out there on all the different support forums for tarlov cysts and let people know the truth about what he does? Dont think that just because I have not been telling the world about what was done to me and the lies I was told makes me weak, what it does I thought was made me be the bigger person here, but eventually I will lose it, and I will not keep it a secret anymore. You are pushing me there, and it might not take much more for me to get there.

From now on I just cannot try to search for things that are from years ago, and control my pain and mental stability, so what ever my husband can find that is all there will be, because I cannot even think anymore without the anger coming back full force, and therefore irritating all those damaged nerves that send my pain out of control, which then puts me back in diapers and all the rest due to my body not being able to handle it. Do you know how it feels to take so many medications every day and the side effects it gives me just to survive each day? Well when my mind gets to this point, I hate to tell you but they don't work because the anger is too strong, which makes the pain too intense to control. Do you see  by what I am writing I am now losing control, yes I am, so THANK YOU for that, I guess you just do not have hearts and that is a very sad thing. To destroy my body and who I was,  and then do everything you can to also destroy a whole life completely.

I am losing faith in Humanity but I know and have try to believe that life is better than this

I have so much anger and torment in my life right now, and its so hard to keep on keeping faith that karma will even out for me. I know I am a good person and I dont deserve what I have been through or the life I have to live now, but it is what it is, and sometimes its just way to hard to handle.

These last few weeks have sucked me dry of emotion and strength and I am trying to be so strong, while continuously being pushed and pushed towards that edge of no return. I wont let them push me there though, I refuse. After yesterday it is harder than it has ever been since that spinal cord surgery that destroyed my life. I had to go and be examined by their neurologist for my injuries, and I don't know if it was the stress this caused for me, or the exam itself which included being poked with safety pins all over and around my surgical site that has caused the nerve pain to go out of control, but here I am at almost 12:30 wide awake being jolted left and right, like I am a piece of cattle and they are using a cattle prod on my private areas and down my legs, which hurts more then you can imagine.

Sometimes I wonder just how much a body can take, and I hope and pray that my body is strong enough to survive all of this pain and misery that it has brought into my life. Just please let me try to learn to live with this without overwhelming me with your demands. You know who you are, as I have no doubt you have found my blog (and no it is not anyone that is close to me, in fact it are those I wish to never know again) This part is for them. Do you know how you have destroyed my life? Do you have any idea what it is like to live this way, knowing how my life was before, and the happiness I had known, I wish you did, I wish you could have seen how happy I was before with my family an being normal, I wish you could experience just a small amount of what I go through on a daily basis now, then maybe you would have a little more compassion, but instead you are more worried about protecting yourself instead of putting yourself in my shoes. So now not only do I live with the pain and suffering, but I also have to live with your demands that cause extreme stress on me.

I have no time to enjoy my life, and could not even enjoy my life if I wanted to, you know why? Because its hard to do with all the pain and all the medications, and lack of sleep from being jolted awake each and every night from the pain and then on top of it having to deal with all of you. I am exhausted, I am broke down, yet you continue to bleed me till you think I will give up. Well I was strong before this, and I will continue to be strong until I feel that justice has been sought and met. It needs to stop and if you have any heart or soul at all you will consider what my life is like. Because its horrible but I keep on keeping on, just going day by day and hoping the next one will be better. So far that has not happened. This is for you, this is how you make me feel.

The Sorrow Of My Soul

The sorrow of my soul that is my life
Don't you know it Is tearing me apart
I wish I could make it all go away
That you would just have a a heart

It seems such a little thing to ask
To just  let me live my life
To let have some privacy
Instead of all of this strife

How long can this keep this going on
do you think you can outlast me
The one thing I do have is strenght
No matter what that will always be

My body defies me day and night
Like its doing right  now at this time
But even though you have destroyed me inside
My soul will always  be mine

You can keep on trying to make me give up
Through your demands and lack of a heart
 I will be right there behind you all the way
Letting you know I will not fall apart

I have to admit that there have been times
When I wanted to give into the pain
To just give up and end it all
But yet here I still remain

The reason I remain is my beliefs
Those beliefs that the good will always come through
That the bad  things that you put out there
Will only come back to you

Your karma will come and even out
And give back the balance of what you have given
Then how will you deal with it then
Are you prepared to face how you are living

Well no matter how much pain and sorrow I have
I will not ever give up this fight
Because I believe that those that are wrong
Need to learn to do what is right

I will live with this pain and embrace who I am
This damaged shell of what I used to be
I will learn to go on how ever long I can
How ever long the sorrow of my soul allows me.

I wont stop, I will fight, I will have courage,
I will have strengthI will at as long as life lets me,and that is what I have now
that you have changed me to this, this damaged life.

You will never take my soul, the sorrow of what it is, it is mine, not yours.

Just been taking one step forward and two steps back

Well as you can see, its been a while since I have updated, and its been a difficult time for me.

I have been having some issues on dealing with all of this. I thought I had learned to deal with it, but it  really is difficult and sometimes you fall back on the progress you think you have made mentally. My pain issues have also gotten worse, so I have not been online much lately at all. Also this getting hot thing is about to kill me, at least it feels that way. It seems I am overheated constantly, and I looked up heat intolerance and found it can definitely be caused by nerve damage, which I do believe that is exactly what is happening. My doctors have also confirmed this to me. Unfortunately because of the nerve damage, my body has a very hard time regulating the proper temperature so I am constantly hot and cold.

I have also ended up with a new problem which is vitamin D deficiency. Amazing that when I look it up online, the first thing I find is all of these clinical trials of people with spinal nerve damage and vit D deficiency. So I guess again its another added bonus. I have been having to take 50,000 units of vit D, which is over 50 times the normal dose you would take as a supplement. It has also limited my time outside, as you cannot go out in direct sunlight while taking this high a dose, due to the fact that the sun is where you get vit D from. Before I was at least able to go out and at least try and enjoy small walks outside, but now that is even being limited. I finished the vit D treatment which lasted 5 weeks, and right after that I ended up with another infection, which again limited my exposure to the sun due to the antibiotic I was on, which thankfully I finally just finished. So hopefully I will at least be able to go for short walks now.

It has been nice living closer to my daughter and grand babies, all though it does really tire me out, and brings my pain level higher, I have had to add Lido-cane patches as well as a gel called Voltaren for the added pain I have been in., The reason I am using this method to add to the many meds, is I did not want to take more pain medication as in pills. I hate the feeling of all the medications I have to take, and the side effects really also take my joy of life away as I feel like such crap all the time from them. I wish I did not have to take them, but I have tried to cut back on them, and the pain is just to unbearable to do that. It seems that no matter what I try, there is always something new that pops up, that makes life worse. Its like one bad surprise after another and its getting really frustrating. I can only imagine the effect it is having on those around me.

Also the bladder spasms that cause shocking pain are getting worse and worse where I have to take a med called vesicare to control them, also it makes the hole of the suprapubic catheter that is through my pelvis very sore and painful as well. So guess what? You got it, more pain medication.

Sometimes I get so sad and angry at the life I have to live now, after that doctor ruined my life. I thought I had those feelings under control, but its just hard sometimes to not let it in. It would be different if I had been told the truth of the test results and what the risks of the surgery were, but I was not. I feel like I was deceived, in fact I know I was deceived, and that is why its so hard to control those feelings. I was going through my records again the other day, and could not believe that he lied to me so much about all the findings. It really makes me angry. I pray all the time for God to help me deal with my feelings, and to help heal me inside my body and mind, but I am how I am now and it is not going to change. Maybe one day I will learn to live with it mentally, but I know physically it will never be the same as it was before surgery. In fact it just seems to get worse. My feet are another issue, and they also seem to be getting worse.

My friend from one of my support groups came to visit from Australia for a day, and he has to walk with a walking crutch, I wonder if because of the way my feet are becoming if one day I will end up where he is now. I hope not. I want to see my grand babies grow up, I want to be part of their lives, and not just looking from the outside. I want to participate with them, play with them, do all the things I used to do, but I cant, and its frustrating me very much.

I have been taking time away from the computer because of so many things I am dealing with mentally and physically and it just never seems to get better. I think this is the longest I have gone without updating since I started the blog, but its hard. I find myself closing in on myself, and shutting life out because I cannot participate in life how I should be able to at my age, and its very difficult to know this.

Here is a song that really fits how I feel so often

I feel like I am running, trying to not give into the feelings I get, the ones that make me want to give up and feel so lost, but I just keep running from it, hoping that one day it does not catch up to me.

Here are the lyrics to the song: Running

I'm not ready to paint my face
And cover all that lies beneathe
If that disappoints you I'm sorry to say
I will be no accomplice to a theif.

Just like this river that flows in between
Or the rocks and the brambles in the way
You can build a dam, you can force it upstream
But the water, always gets away.

(Chorus)
I been runnin' from, I'm runnin' from
The fear I'll lose myself in what I've become
And I don't wanna be under the gun
Please give me the strength to find I don't have to run.

My mama told me, child, she said
You're beautiful you're beautiful to me

[ From: http://www.metrolyrics.com/running-lyrics-sonya-kitchell.html ]

I said mama, wish I was in your head
Cuz despite your words I really do not see.

(Chorus X 2)
I been runnin' from, I'm runnin' from
The fear I'll lose myself in what I've become
And I don't wanna be under the gun
Please give me the strength to find I don't have to run.

I been runnin' from, I'm runnin' from
The fear I'll lose myself in what I've become
And I don't wanna be under the gun
Please give me the strength to find I'm not the only one
Please give me the strength to fine I don't have to run

Trying to make changes is a tough thing to do with CES

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.

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.

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.

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.

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.

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.

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.

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.