Life Itself is Discouraging at Times, but Kittens are Cute.

I have not updated for a few days, as the way my life works is there are spurts between doctors appts., and it takes a while for what they have to say to sink in before I feel like blogging.

So here so far is my beginning of my new round of appts. I went to see my neuro on Monday to ask some questions and set up some new imaging as it has not been done for quite a while and I would like to know if anything has changed. I finally got xrays that show the hardware in my back, and so far I cannot understand why there is so much. I was told after surgery that there was 1 plate and 4 screws. But I finally found the list and it showed 4 plates and 13 screws. Now wait a second? What is up with that. So that is what sent me on my new quest of getting new imaging. So I can see what exactly is in there. My neuro could not give me advice as to what was there or why, as he is not an orthopedic doctor, so that opinion will have to come from an ortho.

The good thing about getting the xrays is that now my neuro can speak to the radiologist, and between them they can figure out the best type of imaging to see everything, the hardware and the nerves, and hopefully give me more of an idea as to what the heck went wrong. I did have a conversation with my neuro about my hospitalization, because for the life of me I cannot figure out why I don't feel better. Why cant I get any energy? He said that once you go septic, it compromises your immune system and it does not seem to work properly after a situation like that. So that does explain somewhat. He said it could take up to six months for me to start feeling back to myself. I guess in most things before this surgery, if I got sick I always bounced right back, but since then it has been hell. I have had more infections in the last year and a half then I have had in my life. I was also told by the infectious disease specialist, that I will have to take antibiotics forever. I guess its just something I am going to have to deal with, although I have to say, I am really tired of going to doctors. I have seen more doctors since that surgery then I have seen in my life, and I have to say its getting old. But I do what I do to survive and stay as healthy as I can.

I think the little baby kittens came into my life right when I needed them to. It gave me something I could do and take my mind off of all of this stress. They put a smile on my face, and for a while, just a short while I can forget how bad things really are. I am just so glad that at least for them, they will have good lives, and it was because of me, because I seen they needed help and I was able to give it to them. I am proud for that :)

So the next steps are finding out what imaging will work best to  show what happened to me, and I also need to go see my urologist and get on a program that is more efficient as well as starting to see the infectious disease specialist so he too can track my system, and hopefully between those two they can keep me out of the hospital. There is not a day that goes by that at some point my anger comes through. It comes through because all of my life I have trusted doctors. I remember thinking of their hypocritical oath they take of first do no harm. Until my surgery I never even questioned whether a doctor was being honest with me. I mean come on that is their job right? You go to them to find the truth. Now I have this anger that never truly goes away, because now I question every doctor that touches me or even talks to me and wonder if they are honest. It has always been my nature to trust, and that is something that has been taken away from me, and that I can never get back, and that is where my anger comes from. I have always believed the best in people, and it has been my philosophy all my life. Trust people until they prove to me I cant. Well that time has come and I have no trust and that really really bothers me on a daily basis.

Anyways so that is my plan for now, while I finish raising these kittens in between doctors. At least in between there is some innocence there, in five little furry kittens that did not ask to be where they are either. I think that is why I associate so well, since I never asked to be where I am either. Maybe some day I can trust again, but I don't see it happening. The only people I trust are my family, and very very close friends, and animals, because animals love you no matter what. I love that that love has been brought to me when I most need it, that love that comes from five little tiny furry creatures :) Who knows where I would be without that little love.

I just cannot wait till I can start feeling better and get some energy back. So I can at least go for walks, because lately that has even been a great challenge. I have gone out walking only twice in the last two weeks, where as before the whole ending up in the hospital again I was at least going a couple times a week. Lets hope that energy comes back soon, and I make sure to not run into anyone that is sick, because that is just a very scary thought to me right now with the flu season coming up.

Any tips on getting energy back when you are drained physically and emotionally?

Wow so it has been a couple weeks since I got out of the hospital, but still not myself.

Its been so hard living with Cauda Equina Syndrome. I would have much preferred to just leave the Tarlov Cyst as it was now that I know I was lied to about the results that led me to surgery. Since my hospital stay, my energy level is at a zero, and my pain has shot through the roof. My bowels have gone absolutely insane. I just cannot get a handle on this. When I go to sleep at night, I always pray for a better nights sleep and a better day to come, but those are just hopeless dreams as it never happens. I guess I am becoming resigned to the fact that I just have to live day by day, and live with the fact that I may never sleep another night through, without getting jolted awake by that shocking pain.

Here is a for instance for you. Last friday night, all of my friends had another reunion in my hometown. Its a yearly thing (which I also missed last year due to this) and I was hoping, just really hoping that I would feel up to at least going to see them for a short period of time. I figured it would not take much as we just sit and visit, but I could not even get the energy nor the pain under control for that small thing. Well of course the pain took control and I was not able to go. Its these simple things in life that brings back the depression of living with this like never before. It seems I cannot plan anything that might lift my spirits, because my body rules my life now.

Right now also my daughter is sick, as well as my husband and I am living in complete fear. The average person, the person I was before this surgery would have been doing all I can to help them because I love them that much. Now I have warned them to not come anywhere near me. I have my husband isolated to the bedroom and my daughter and grand daughter cannot come over to visit, because of my fear of them getting me sick. My daughter and grand daughter visited me two days ago, and I am still in fear I may get sick from that, as at the time they were not sick yet. I am in fear of getting sick and ending back up in the hospital. Its because I have no immune system from taking antibiotics daily now. They kill all the good bacteria in my body that protects me so I have no protection from sickness. If I were to get sick it could be very dangerous to me. So I am isolated, by myself, and any comunication I have is over phones or the internet. It is extremely lonely and I hate it.

I do take probiotics, but I am afraid that those will not do the job, you see I was taking them when I ended up in the hospital 2 weeks ago, so they might help a little, but I do not trust they will keep me well enough to not end up back there. The hospital is a whole other issue for me. My Dad had surgery for cancer on the 15th. Normally I would have been there waiting through the whole surgery to make sure he is ok, but I could not go there. I had to wait at home on pins and needles hoping he came through the procedure ok. I was so scared for him, yet I could not be there for him. Thankfully he came through it alright, but hes still in the hospital and probably will be for a while, but I cannot go see him. The most I can do is call him and for me that is just not enough. You see out of six children, I am the only one who has not abandoned him and still have a relationship with him, so I am all he has where his children are concerned. CES has now made that impossible for me, to be there.

Seriously, what next? What next will it take from me? What next will I find that will put my life at risk? That is what my life is like now, just waiting to see what thing it will limit next for me. It just seems to build up and I see no end in site. I wish that the surgeon that did this had really thought about what risk he put me at, before he lied to me to get me to consent to a surgery. I wonder how it would be for him if he had to live like this. Living in this prison he has put me in, damaging my relationships in my life and literally taking away the life I knew. I just constantly hope and pray that one day, someone will stop him from doing this to others. At least if I knew that, I would feel somewhat better mentally at least, to know that others are safe from the damage he could create. Maybe one day.

So Five Little Lives Gave Me Some Happiness Today

Well its been a bit since I blogged and it is because I am still trying to get back to feeling where I can function since I got out of the hospital. Its like my body does not want to let me feel better. I try so hard, which is super frustrating, to feel better, to make my body feel better and to make my mind feel better, but so far not much has worked.

It seems like that infection got into my body so badly that I just cannot get my energy back. I am afraid each day if this will be another day that I end up back in the hospital, which until that happened I had thought I had a handle on things somewhat. So how do you stop being afraid? Especially when its a very good reality that it will happen. I had only woken up a bit dizzy with a headache and the pain in my back that morning and within hours I was fighting for my life with infection in a hospital. Who would have thought things could go from ok to horrible is such a short time, Surely not me. But now that is a new part of who I am and what I live with. It has taught me a new lesson, to never think I am safe because I may not be.

Well I have two little rays of happiness that keep me going, the biggest being my new grand baby on the way, and my daughter being more pregnant then she has ever been. That is such a relief each day that goes by and my grand baby stays in that belly. I cannot wait to meet her. I know I wont be able to spend as much time with her as I did my first grand baby, as my body will just not allow it. But still I am very excited to meet her, and hopefully god willing, I will get the most time possible with her, loving her as no other grandma can.

The second little ray of sunshine is this. There is this little wild tabby cat that lives in my neighborhood, and 3 days before I was hospitalized, she had kittens. They were hidden somewhere in my neighborhood and for the life of me and all my neighbors we could not find them. I wanted to save them, to save some kind of life. I felt it would be somewhat fulfilling, to find them, raise them and find them loving homes. I searched high and lo and could not find those kittens anywhere. She was a very good baby hider.

Well I ended up in the hospital three days after she had them, and then when I got home, I have been so depressed because my body just does not feel better, that I had since put the kittens out of my mind. I was in no way in a position to even think of them with all that had since gone on. Well today my neighbor from two doors down found them :) There were five of them and they are about 3 weeks old. It gave me a bright spot as I could now try to save them. So I now have five baby kittens to look after and bottle feed. I hope I can save their lives, and give them a good future in good homes, instead of living in the streets and continuing the problem of feral cats. Looking at them makes me happy, being able to take care of them makes me feel happy, because I can feel good about something. I cannot fix my life or the damage of myself, or change how I have to live and the fear I have to live with, but I might, just might be able to give those kittens what I cannot give myself. What has been taken from me, a good life. That is the other bright spot.

Its amazing where before I had my own business that I ran, I babysat my grand daughter on a constant basis, I was able to do and be everything I wanted before this surgery, and now I am happy just to be able to try and look after baby kittens. I guess I have lowered my standards on what can make me happy, but I have to take those little things, focus on them, as they are all I have now. I only have little things now, none of the big things I had before Jan 09 are there for me anymore. I closed my business because I could no longer work, I stopped babysitting my grand baby as the pain was too much to be able to care for her properly, and the fun things I did with family and friends, well lets just say they have learned to not even call and ask anymore because they know what the answer will be. So yes, taking care and saving kittens may help me save myself, at least mentally for now.

How do you live with fear?

I have been having a very difficult time since my hospitalization. It has brought out this new fear in me that I never knew before. Before I was in the hospital, I knew that I had been damaged and  I knew I would get infections, but I never really thought of the consequence that it could kill me. Now I have this fear that has made my reality a little too real.

I am constantly, several times a day checking my blood pressure (which is still low), my temperature (which is still slightly high) and my oxygen saturation along with heart rate. These are not normal things to check. I have never thought to check them on a regular basis, but this is now my life. You see I found that if all of these things are not right, then there is most likely something wrong. So now I live with the paranoia that one of these things will be off and I will have to run back to the hospital. I have not left my house since I got home except two small walks around my neighborhood. I know its irrational, I know it sounds crazy, but this is the new me right now, and I do not know how to except it.

So how do you conquer fear such as this? How do you go on living your life normally when there is nothing normal about it? This is a big problem for me right now and I am trying to figure it out. How to integrate this fear into something of a normal part of my life. It was not here before and I never thought it would be, but now it has to be a new part of who I am if I am to be able to live a somewhat normal life. Well that is if you can call my life normal at all.

Another Piece Taken, How Much Is Left.

Why must you keep coming and taking more of me
Why cant you go away, leaving whats left to be free?

I dont ask for much, just a small part that can be mine
To do what I want with, can we just draw a line?

Can you just  leave me alone, to live in the light
Can you give me that part back, can you just do what is right?

Why must you continue to hurt me inside
Making me fear what is rightfully mine

One piece at a time, you keep sucking me dry
Will you just keep on taking and making me cry?

I hope that one day someone takes all of you
How will you live, what will you do?

When your light turns dark, when your love turns to hate
When the music turns to screams, will it all be too late?

You think you have the power to come and steal my life
What I want to know is what gives you this right?

Your just a man who holds blades of steel
Cutting and slicing, killing souls your should heal

What happens when your left and there is no one there
No more pieces to take, no more lives to steal.

You'll be all  alone, just you and the parts

The pieces you have stolen that made up my heart

Do you think you can ever put them back again?

Written by me and my fear.

Another Late Night With CES and Here I Am Again,............ At my blog

Wow where do I even start with this one? So much has happened since my last blog, its unbelievable.

I guess I will continue from the last date of my last post which was August 26th. That day is where it got really really bad to worse. After I wrote that blog, my pain was getting much worse, the hot and cold chills got way worse, my blood pressure dropped down to around 70/47, my temp went up to 104, and well lets just say it got very very scary.

By the time my husband got home from work I was very frightened and did not have any idea what was happening to my body, so I had him take me to the emergency room as quickly as possible. I was afraid my system was shutting down, and really for the first time since I had been home from that surgery that caused this I really felt in fear for my life.

Once I got to the ER, they confirmed that my temp was super high and blood pressure super low. They said it was the bladder infection spreading through my body. The first thing they did was insert an iv and  give me a antibiotic that I had had before which was rosephin. I had had this one before with no problems. You see there are quite a few I am allergic too and have been sent in to Anaphylaxis  shock, but I knew, at least from past experience that this one was safe for me. So they inserted the iv and started the iv bag of rosephin lo and behold I start to itch within seconds, next up within probably a minute hives started to break out on my whole body, within probably 2 to 3 minutes I started having very bad difficulty breathing. It was very apparent that this antibiotic was no longer safe for me. I had  thought that the difficulty breathing was being caused by my breathing tubes swelling shut as has happened in the past with allergic reactions from drugs. Well I was to find out later that for some reason this time, my lungs started filling with fluid. and this was my beginning of my fight for my life.

They immediately injected benedryl which the first injection had no effect so they than did a second injection which was much stronger and seemed to work. It was very strange at that point, as I started going into a different place and then coming back, yelling strange things to my husband, which he had no idea what I was talking about and eventually just quit trying to explain to him what was happening. all I know is that it was a very very scary situation.

Next thing I remember was being in a hospital room, where they were making me lay flat on my back because my blood pressure was so low and they were afraid that if I even was elevated at all, it could cause a stroke. My fever would not go down, my blood pressure would not come up, and I had the worst pain in the world. I was so cold that my teeth just kept chattering and I could not stop it. They would not let me have blankets because they said that if I covered up to much it would only make the fever continue. I had no idea what had happened to me and was very scared for my life.

The next day, as I started seeing doctors and getting some explanations, it seems that the infection from my bladder had moved into my blood stream and had started attacking all my body systems. which explains why it was affecting my blood pressure and everything else, as it was attacking all of my bodily systems. They tried many different antibiotics, and started to get some idea of what would work. I had developed pneumonia from the allergic reaction in the ER and my lungs had filled quickly with fluid, so now not only was I on antibiotics, but I was getting shots of heparin in my stomach to make sure I got no blood clots to my lungs, I was getting breathing treatments every few hours to try and reduce the fluid buildup in my lungs, and of course the antibiotics for the original infection that started in my bladder but had spread to my blood stream.

I had thought what I was living with since that fateful surgery of January 5th that caused the CES, I had some control over. This Night changed that thinking all together. It made me realize that nothing is in control, and I have no idea what will happen next, which is the most scary thing of all. I am now working with an infectious disease doctor as well as the urologist, to track this infection problem of my paralyzed bladder, since it seems that the particular bacteria I have does not ever really go away, but now will need to be controlled forever. This is my understanding, and I may not be 100% correct in the way I have worded this all, but it should be pretty close. Remember I am not a doctor, just an average woman living with the damage that was caused to me by this tarlov surgery, which I feel now should have never been done had the surgeon been honest with me to begin with. So I finally got out of the hospital Tuesday after noon after spending six days in the hospital, which has put my new therapy on hold for the moment as obviously I have much bigger things to worry about right now.

I am still very sick at home, still on antibiotics, which I am being told will be for life and will have to counter act those by adding probiotics now as well to all the other meds

Ok well I as super tired and need to do a breathing treatment and get some sleep. I will continue this blog entry tomorrow when I have more energy. I was not really up to writing this now but felt it was very important to get out there, just so those that are thinking of having tarlov surgery an think they have a a surgeon they can trust may think twice. Believe me, you do not want to be where I am. Like I have said time and time again, If only I could go back and make sure the doctor was a trustworthy doctor, I would not be here writing this today. Think, think really hard, and don't believe you know everything, or are smarter then I was, or trust someone just because they have a good bedside manner. Really really take this seriously, remember your life depends on it.