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

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

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

Here is a definition of the catheter:

suprapubic catheter

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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



I will never be safe in my own life again.

So Not So Great Of News From Infectious Disease Doctor

So I went to the infectious disease doc on Monday, and we are trying to figure out how to keep me the most healthy since I keep getting bladder infections and UTI's over and over and it seems that from being on antibiotics for so long, it seems it has somewhat shut down my immune system.

My body has lost its ability to fight infection and my options of treatments are running out. I am on Avalox right now which is a new med and have 2 more days left. After those two days its going to get a bit scary and uncertain. I will for the first time in around a year that I am going off of antibiotics and am going to try to really boost up my system with vitamins and probiotics. Its going to be scary because at this time I will have no protection to stop infection. I am hoping that my new things I have been trying like the new speedicath compacts, new cleaning wipes and other things will make a difference and not cause me infection. Right now I have an infection that up to this point I have never had. Its created by my own body from having so many infections. It is not something I have done by my practice of cathing, but my body has done this to me itself due to so many infections.

If this trial does not work, this is where it will get scary. There is one other med they can try on me that is not an antibiotic (sorry don't have the name of it handy right now) that actually acts like a detergent to the bladder and is supposed to cleanse it and hopefully wash away bacteria. It is similar to formaldehyde which quite honestly sounds very scary to put in my body. If that does not work, then the only option I will have left is  being treated with antibiotics such as gentramicin through IV which would probably mean being hospitalized for each treatment. Apparently they have ran out of medications in pill form for me, as I have become resistant or allergic to. Its really really scary to me to hear that my options are running out, and will most likely become more extreme measures to treat me.

I will find out soon enough if I can hopefully built my immune system back up some by not being on antibiotics and filling my body with vitamins and probiotics. I am hoping my body will learn to fight infection again like it used to before my surgery from January 2009. That is what really freaks me out, is that before that surgery that caused my damage,  I had never had any type of UTI or bladder infection in my life, and I think I have had enough in this last almost two years to last several people a lifetime.

So please keep your fingers crossed for me that this trial off of the antibiotics works, and that the vitamins and probiotics will help  my immune system get its health back that it once had before all of this madness.

I will keep updated on how the process goes.

So So Tired Of Infections and How To Treat Them

Well its been awhile again since  I have blogged, and its just because CES makes being a consistent blogger hard.

One piece of good news is that my New grand daughter has been born and she is truly a blessing. So small and innocent a total beauty. They (my husband,daughter,and 2 grand daughters are my blessings in life and keep me going) So that has been an awesome thing that has happened in all this madness, that makes me remember to be thankful for that. Since tomorrow is Thanksgiving, I will say that my family is truly what I am thankful for. They hold me up when I am falling, and push me forward when I am ready to stop. Without their love for me I might not  be here now and that is being totally truthful. If anyone who lives their life the way I do and says they have not thought of leaving this life at times, they will be lying. But this is where I am totally honest, about everything and every thought, and that is totally honest, there are days I wish I could just end it but thankfully I do not believe in the cowards way out. I was born a fighter and I continue to fight what seems to be a losing battle.

On the CES side of things, well it just keeps getting worse and more confusing to live with each day. I have learned that pain is going to be a life long thing, and having no bodily functions along with all the numbness is also going to be a life long thing, but why oh why can I not get a break when it comes to infections.

In the last couple weeks I noticed that I was feeling worse and worse each day, in fact I have not been able to find any energy or good feelings at all since I was released from the hospital a couple months ago. I could not understand why and I had a feeling what was coming. Its the same thing over and over and gets more complicated each time. After having had a headache for almost two weeks, I started again with the chills and loss of appetite. I started sleeping more then half the hours in the day. This was all pointing one direction and a direction I have been dreading, and hoping I would not be going again. The direction of the road to infection.

Monday I before I woke up, my husband had already made me an appt. with the infectious disease doctor. I guess he is also seeing the signs and learning where they are leading. They took a urine tests as I thought It was just another bladder or urinary tract infection. Well the cultures came back today and my husband stopped to get the results as he was over by the doctors office. From what his understanding was, he told me that I have an infection now that has been caused by my body from having so many bladder infections on a constant basis. I have no idea what this infection this time holds in store for me, but I will find out on my appt. on Monday, as I am meanwhile on yet another new medication. I am hoping that its something that is easier to treat, then the infections of the past. At least it would mean that what I am doing is not causing them myself, and that I have learned to be careful enough not to cause them to myself. Its so hard living with no bladder function and trying to get a perfect system with using catheters and avoid getting infections. The doctor mentioned me considering getting surgery to get a suprapubic catheter inserted. I told her that if I get to that point where there is no other option, then I would consider it, she told me straight out that I am already there. I dont know, am I just in denial? I have had a very hard time excepting the damage that was done to my body and do not want to think that its as bad as it is I guess. I will talk more on monday to the doctor about this.

I have been using the speedicath compact catheters, and they seem to work well, but I have to hope that this is not the cause of the infection, as they do make it a little more easy to catheterize. I never thought I would be living my life this way, not in my wildest of dreams. Speaking of dreams, that is one of the things I like about dreaming when I sleep, I like dreaming because in my dreams I am normal, the way I was before January 2009. I love being normal in my dreams, but then I wake up and realize I am not and never will be again. Since that day that surgeon damaged me, I will never be normal again and this again brings on the depression, its a vicious cycle that I have to live every day, over and over.

My husband has been on vacation this week, so we thought it would be nice to have my grand daughter stay for a sleepover. We were having a great time until the next morning when the worst thing possible could happen. My bowels lost control right in front of this little four year old. She does not understand this and thank god my husband was here to divert her attention from me locking myself in the bathroom to clean myself up from my waist to my feet that were completely covered in feces. Thankfully I made it there before it had gotten all over the carpet, although the bathroom carpets were not so lucky. It was completely humiliating to me to have this happen in front of my little grand daughter, but thankfully I think I moved quickly enough for her to not see the worst of it.

So yes its been hard lately, and there have been more medical problems,  more embarrasment, and more confusion on how I am to live my life. I guess I will have a better idea on monday of what the new plan of treatment will be with this new issue.

Thankfully I have my beautiful family that loves me for who I am inside and not what I have become, because if I did not have their true honest love, I would be alone with this and probably no longer here, and that is the honest truth of what CES can do to you.

Could someone with CES please explain to my Daughter why its so hard living life normal?

This last week has been so hard. Physically and mentally. My daughter is getting closer to her due date and has had a few false scares and been in the hospital a couple times. She has needed my help and I am not as able as I would like to be to help her the way she needs. In that sense because of  that I feel like the worst mother in the world. Not for my lack of trying to be there for her, its because I physically cant due to severe pain and bowel problems that will not calm down, and  for her its just not enough.

No matter what, because of my medical issues I cannot offer as much help as I used to and  that I know she needs but she does not understand this. This has led to her yelling at me about what kind of mother I have become, and how I am not there for her the way she would like. Here is the reality of the situation, because CES is mostly an invisible disability, even she does not see it fully. So I am attacked and made to feel as a failure of the role I treasure the most, being a mother and grand mother.

If my own daughter does not get it, why would most of my other people in my life? Oh she needs help today, well I better take more pain meds and push my way through so I am not a complete failure. But does anyone know this is how I do it? NO. Its so hard wanting so badly  to be a good mother, and knowing, because she is telling you to your face, that you dont measure up and that she has to beg you. Yes that is another one of the things you get to live with, being told how much you used to be able to do and you used to be able to that, why cant you anymore? Then if you give an honest answer such as " Well I have severe pain, my bowels are out of control, and I am just so drained emotionally and physically from it all" Then you get  " That is the excuse you always use ever since your surgery" . I hate to tell those out there that do not understand but its REALITY. Its what we live with, its who we are now. Heck I would love to be who I was before but I cannot magically make that happen. And this kills me, or at least makes me ponder the thought that it might just be an easier way to deal with it. Luckily for me and my husband, as well as my daughter, even though I think she really does not like me much anymore, its a fleeting thought.

There is nothing in this world more horrible mentally to feel that your child does not love you anymore because of what you have become, believe me it hurts and it hurts badly. It seems this surgery has destroyed my life in so many ways that if I tried to make a list, it would go on for ever. I am so exhausted of living with this, I am so exhausted of having to explain myself all the time, I am so exhausted of the constant pain, I am so exhausted of feeling like a complete failure to everyone around me that used to be able to depend on me but cant anymore. I am just so exhausted that  I want to give up.

I am so thankful on a constant basis that I have my husband here to talk me down off that ledge that I am ready to go over so many times. If not for him I may have given up by now. But he is my rock and its amazing. Its amazing because he too not only lost the wife he married, but he took over all my responsibility as a wife who used to take care of him, even though at this point I dont know what he even gets out of it. I think he has gotten a really bad deal here, but for some reason he still loves me. I think  that my daughter is having a very hard time continuing to love me, the way I am now. I asked my husband tonight, why does my daughter not love me anymore? What did I do to deserve this, and here is the thing. The thing is I have done nothing. I have done nothing but let a doctor destroy my life, and there for destroy my relationship I had with my daughter before all of this.

This is another thing to take into consideration before you even contemplate, letting a doctor do surgery for a tarlov cyst on you. Think of all of the lives that can be destroyed. Not only yours but all the people who are involved in your life. I guarentee you that it will not just effect you, it will effect everyone who loves you. And you may suffer the lose of that love without even seeing it coming. There will be nothing for you to do to stop it either, because as I have found. Some people cannot handle the damaged person you may become. That is why I continuosly caution to get second and third opinions, and demand to see test results on paper, to match what any surgeon tellls you to make sure he or she is being honest with those results. Make sure you life is not damaged because of lies. Not only will it damage you, but it will destroy you and it will also destroy relationships around you. Believe me I know because I am living it and it will take every ounce of strenght you can pull from the deepest parts of you, to be able to live. Just to want to live.

I know that deep down my daughter loves me, she has to because she always has, but she does not like me or who I have become, and she cannot deal with it, its just the way it is. I think some days are harder then others for her. Some days the things she says to me hurts so bad, and they are things I would have never imagined my daughter ever saying to me in my life. I truly hope she does not really mean them. She says I am not the mother I used to be, the one that was always there for her. You know what? Shes telling the truth, as that mother is gone. All that is left is me, this damaged person that tries each day to try to find a reason to continue with this damaged life.

Lets talk about an exciting subject - Catheters :)

Yes that is what the subject is going to be today, Catheters. Its not a subject I would even have ever thought of talking about, but it is so important to us with CES and a neurogenic bladder.

When I first came home from the hospital, they sent me home with these long red rubber  catheters that must have been around 14 inches long. WHAT? What do I need something that long for? Ummm I think they gave me the ones for men. So once I went to the urologist, he informed me there were other options. And that yes I was right, there was no reason I needed catheters that were that long.

So then I switched to the 6 inch ones, along with using the surgical lube, plus cleaning supplies. It was a nightmare and has been since it all started on Jan 5th 2009. I have had so many infections because of catheters. Just the name of them is like a dirty word to me and not something I would normally talk about (Since I never even knew any type of catheter except the ones they use in the hospital even existed)

When I was in the hospital, they told me I would need to use catheters, and I had this picture of carrying around this bag, as that is the only type I had ever seen, the foley type. I never heard of straight catheters and they had to teach me and my husband how to use them before we left the hospital. Use them? I did not even know what they looked like. I thought the ones they sent me home with were all that were available. Well I learned very quickly that was a wrong assumption. I now know that you have choices.

So I have finally found the catheter that is the best so far, the speedicath. It is awesome compared to all the others I have tried. It comes in a little tube about the size of a lipstick tube, and opens up with the surgical lube already applied. Now I am thinking how cool is that, and you are probably thinking why would you think that is cool right? Well when you have to learn to live this way, to find something that makes life just a little bit easier is cool no matter how you look at it.

On the other hand if you have a tarlov cyst and don't get lied to, just so that you will consent to a surgery, that in my opinion I never needed because it did nothing but damage me, you would not even have to think of things like this. But this is what happens when you are deceived and you are damaged, you use catheters, and that becomes your life. So then you have to go through trials and tribulations to figure out what is easiest for you to deal with it. This little catheter just might, and I say might because I have just started using them, it just might make my life a little easier. I hope this info helps someone out there, as someone else had recommended them to me and I am passing the info on. I think the speedicath is going to be a very valuable asset to my life, as long as my insurance continues to cover them, as they are much more expensive then the other type I was using. But yay no more surgical gel packets. Of course my life would work much much better if I did not have to think of this at all, and I did not get my life destroyed by some doctor that lied to me.

Absence does not make the heart grow fonder with CES, it just means I have more problems then normal lately

It is so hard to keep up with my blog sometimes. It seems as if I repeat myself. I guess that is what living with CES is like. Its like repeating the same horrible day over and over, kind of like groundhog day.

These last few weeks have been horrible and I constantly find myself fantasizing about what it would be like had I never met that doctor who ruined my life with that tarlov cyst surgery with his lies. Again I want to stress right from the get go. If you find you have a tarlov cyst, dont just believe the first surgeon that says he can fix you, ask to see the tests results he has done, and confirm his decision with other neuro surgeons and see if they agree its the right thing, also make sure you know the risks. I myself was not warned that I could end up like this and now here I sit, wishing If I could only just go back in time. I myself never had a reason to doubt a doctor, but now I am so cautious with every doctor I go to, because of my fear I have of them now, due to Mr doctor who destroyed my life.

Right now I would love to be in bed sleeping. Only one problem, well a few problems. One is that I have such severe pain right now I cannot get it under control.. Another is my bowels are going crazy with explosions (sorry if that is too much info, but this blog is not about being nice, or hiding things, its about brutal honestly). I have such horrible pain in my abdomen all the way up to my stomach, that hurts so bad you wish you could just die. I am afraid to lay down and fall asleep if the pain were to subside for a bit, only to find myself covered in feces. Yes these become your priorities once you have CES, and all of those old normal priorities you once had are out the window. Its now all about survivial, and that is all that matters. You live with that day and night, and your mind does not have much more room for any other thought, just surviving that day.

My Dad went in for the second part of his cancer surgery this week, he will be in the hospital till next week, and again I cannot go see him. I talk to him on the phone every other day, when I feel well enough to talk, and he is my cheerleader, he spurs me on, telling me to be strong. Here he is fighting cancer, and he is telling me how to be strong. Am I the only one that sees how wrong this is? I am his daughter, and he is fighting for his life, yet he is encouraging me to fight for my own. This is where my anger comes out. I should be there rooting him on, telling him hes going to be alright, but yet he is the one telling me this. That should give you a good idea of how hard it is to live with CES, that my own dad with his cancer is considering my situation worse than his own.

My daughter has made it to 35 weeks thank god for that, and my new grand baby will be here shortly, hopefully close to her due date instead of earlier. I cannot wait to meet her and hold her little body. At least that I can do, because she will be small and not weigh much. This gives me some kind of hope of some kind of happiness, and right now I am hanging on to that. I cannot wait and that is the one thing I am excited for right now. I went to visit yesterday, and my 4 year old grand daughter asked if she could go to my house with me, and it broke my heart to tell her no. I had to because My husband was at work and I cannot watch her by myself in case anything should happen, I would be at a loss to take care of her. She asks me this every time I see her, and if my husband is at work I have to say no. My heart gets broken every time over and over. The other day she even told her mom, she wanted to be Nana when she grew up, that is how strong our bond is, so I am sure you can imagine the heartbreak I feel each time I disappoint her.

I just try to keep strong, do what I can, and try to live my life, even though I fear it could be taken at any time by infection, as that hospitalization really gave me that wake up call. Its all I can manage right now but for me its the best I can do.

Way To Much To Deal With, How do we get by?

So I know I have been silent lately, as I try to wrap my brain around all that has become of me.

Its been an extremely stressful and painful time for me as of lately. My dad had surgery for his cancer
and I cannot go near him because of the risk of infection and my uncontrollable pain lately.

My Daughter ended up in the hospital last week for 3 days with preterm labor, and is now home on complete bed rest. I have been trying to help her as much as I can, but its very hard when you are in constant pain. I have so much pain and stress that I cannot sleep like a real person. Oh how I long for sleep. I am at the point now where I have forgotten how normal can be. Normal for me changed on January of 2009, and I know I will never be normal again. Its a hard place to be, to know that the pain will never go away, I will never have bodily functions again, and so much more.

It has put me in a very bad depression lately because before this happened to me. I would have been at my Dad's bedside to help him through this cancer treatment, I would be there day and night for my daughter, to help her little one stay put and be born on time. But..... I cannot be that person anymore and it kills me. It kills me mentally and physically, trying to help. Trying to be a good daughter and a good mom, as well as a good Nana. To be honest, before my life was destroyed I considered myself the best at all of those things, and now I am no more then mediocre at best. I do still plan to write here, but its gotten harder and harder.

I find when I am in these types of situations, my anger consumes me towards that doctor that did this to me. I shut myself off from my friends and family, and enclose myself in this bubble, this bubble of protection and fear. All I can hope is that somehow I can somewhat get the pain back in to some kind of control. It never goes away, but at times it becomes so unbearable that I want to die, an lately it is there, right at that pinnacle. Thankfully I have an appt. Tuesday to see my pain management, so hopefully he will have a new idea.

I am also going to try some new catheters that hopefully will lower my risk a little bit as far as infection. I have so far had to use surgical lube and apply it to them before use. Well this is just one more step that can lead to infection, and I have now been switched to ones that are already self lubed. Hopefully by cutting out one step of the process it can help. Despite being on suppressive antibiotics, I am in fear that I have another infection already. Its just crazy all the things I have to worry and live with each day. This is not the mind of normal, normal people do not have to think or live like this, and it is just getting really tiring for me.

Housebound And the Loss Of Energy With Pain

So................. This is where I am at. I am silent, as I am depressed. Since I got out of the hospital it seems things have just stayed the same, very bad. The pain levels are worse since then, My energy level is worse since then, and my thoughts are not any better, I am also having to do breathing treatments each day to try and just heal my lungs from the severe allergic reaction I went through by finding I am now allergic to another antibiotic I used to be able to take, which I broke out in hives, and my lungs filled with fluid due to it. I am trying to figure out how to get my energy back, therefore hopefully making me feel somewhat better.

This week I went to the infectious disease specialist  to get checked up after going septic from the bladder infection due to my paralyzed bladder, and also to try and find out why did I get worse with pain, and worse with energy. Apparently a side effect of taking antibiotics forever is also giving up your energy forever, unless I can figure out something I can take to give me energy.. I had no idea that antibiotics on a continuous basis would zap your energy. From what the doc says is that because they are constantly depleting the good bacteria, and your body is constantly trying to replenish what keeps getting killed off, well you get the idea, its a vicious cycle. I have been taking the probiotics as well, trying to help my body replace the bacteria, but it seems its just not enough and it is not working, which mentally makes me feel worse. Its like I am completely helpless to my situation.

I also went to have Xrays done as well last week and finally got a good picture of what is in my back. After surgery I was told there was one donor bone plate and four screws. Well it seems there are 3 or 4 titanium plates and 13 screws? What the hell is up with that? I guess another one of those lies I was told. I now go by the rule that anything that doctor told me is a lie and I have to verify what is really going on. It seems the more time goes on the worse it gets and the more I find out. I showed the images to my daughter and she said " Mom it looks like you have barbed wire in your back" and I have to say I agree with her. I dont understand what its all about and hopefully will find out more in the future. From what was explained to me after surgery was that they used donor bone as the plate and used four screws. So where do all the titanium plates and screws come into this? It is a very frightening site for me to see that image and wonder what it can cause to me in my future, especially after I looked up the part numbers of the plates and screws, and they say they are for the neck and upper back. Ummm all this hardware in me? Is in the bottom of my spine and it clearly states on the website for these products that they are not to be used in any load bearing area of the back, not sure about where they are on me, but it would seem the bottom of your back holds a lot of load..

I also asked my doc why do I feel so tired and they said after as sick as I got at the hospital from infection it is not uncommon for it to take up to six months to start feeling better. Really? Well let me be frank, that is complete bullshit that I have to go through that. I have a grand baby due in 8 weeks, I have a 4 year old grand daughter that already I am limited on the time I spent with her before going in the hospital, and lately has been harder, and so many other things that, even though I have tried to adjust to this damage and try to live some kind of life, is now changed again. What the hell did I do to deserve this ? Mr Dr. You know who you are, do you see what you have done to me? To my Life? Thanks a frigging lot is all I have to say to that.

Thankfully I have a strong spirit and am a fighter or I can tell you I would not be here now. Thats right, if I were any weaker then I am now I might consider other options. Thankfully for me and my family I do not believe in those thoughts, but that does not stop me from having them.

This is how I wake up in the morning, after fighting to get sleep through the pain at night. I have a perfect view out my window of the ocean, and the trees and cliffs and its a really beautiful area where I live. When I first moved in here I would wake to that view and be so thankful that I had such a great life. I felt blessed and at peace. Now I wake up to that same view, which now escapes me. I get no pleasure from it anymore. My first thought when I awaken now is not how blessed I am,  but I think Ok how do I make it through today. That is all I concentrate on when I awaken. I dont look at the view, I dont think how blessed I am, I just try to figure out how to make it through the day and dread stepping out of my bed because I then know I have to start the process of survival during the daylight.

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.

Why when I finally figure out how to live with this, does it just get worse?

So the last couple days have not been so good. For some reason I have this new pain that is drving me insane. It starts at both hips and the sacral area of the spine, and starts throbbing all the way down both legs. It has been waking me up at around 6am every morning (where as I usually sleep till around 9am), same thing just throbbing and throbbing. I sat in the bath tub for around 2 hours after taking pain meds and muscle relaxers before it calmed down. It has completely exhausted me.

Hubby is making my appt, to start acupuncture, so hopefully that will help. Its getting really old though when you finally think you have a hand on things and then all of the sudden there are new things. Yesterday I had an appt. with a nerve damage rehab specialist, and she says not only does she think I have Cauda Equina Syndrome, but that the nerves at the S1 and S2 level have been damaged directly as well. I am afraid of how far  this can go, and how much worse it can get. I just dont know. All I know is that when I have days like this, that is what brings back my depression in full force. Its like the pain just sucks everything out of you till there is nothing left, yet you have to go on because that is what life is about. I am just hoping my insurance will cover the acupuncture, not sure on that one yet. I am so tired of waking up in tears every morning lately from pain, please something make this new pain stop!!!!! I am strong, but how strong do I have to be?

I wish I knew what this new pain is all about. The nerve specialist told me that the foot spasms are directly related to damage to the sacrum nerves and not the cauda equina nerves. So the diagnosis is just getting worse. She was not able to tell me if it will continue to get worse or not, but just basically that is what is happening. I will be scheduling a new MRI also to see if they can see anything that is going on with all this new stuff. Hopefully it is something they can stop from further damage. I would imagine though if there is something they could do, it would involve surgery, which would be my worst fear of all.

On a positive note, my new grand baby is still in mommy's tummy, and if she makes it full term and comes on her due date, well lets just say we will have something new to be thankful for every year :) Her due date is thanksgiving :)

For My Daughter who has to live with my CES, I Am Sorry.

Well this post is going to be a bit different. I have sat here thinking about how I affect the people around me, and besides my husband, I think it has affected my my daughter the worst. So this is escpecially too her. In case one day you find my blog, you will know that you have never been out of my thoughts even though I have not been there for you the way I have in the past.

I am sorry I am not the mom you used to know. I know it hurts you when I am not there for you like I used to be before this new life. I want to write this in case you ever find my blog and wonder if I ever think about how it affects you, this crappy thing called CES. You have to know that in my heart with you, it effects me the worse. We all know my husband is able to roll with the punches, because he is made of that kind of stuff, with that steel exterior, even though I know it hurts him inside, I am sure it hurts you and my grand baby even worse, which is something that one cannot even imagine if they have ever seen the look of hurt on my husbands face in my bad times.

I miss seeing you all the time, and doing things with you and the grand baby, like going to disneyland, the aquirium, the zoo and all those other wonderful things we used to do. I hate hearing the disappointment in your voice when I let you down and it breaks my heart. I hate that while you are going through such a rough time right now with your pregnancy, worrying if that little one will stay in there as long as she should, that I cannot help lighten that load for you. I remember when your daughter was born at 26 weeks, and while you were at the hospital I would go to your house almost every day and clean, rearrange, set up furnishings, go shopping for things you needed. I was there 100% no matter what you needed, but this time I know I am not and I am disappointed in myself for not being able to do those things this time. Even though I know its out of my control it still hurts me to hear it in your voice and know that not only has this changed me, but its changed us. I have loved you from the day you came into this world, and everything I have ever done has been or revolved around you and me. We were a pair and now I let you down on a contant basis and I hate that.

I hope one day things will get better because I miss us. I think the times I know I hurt you the worst are the times that I recieve those letters of frustration from you asking me why I cant just move on and be the mom you used to know. I would love nothing more but unfortunately my body does not agree with my mind or my heart.

I do start new rehab with the nerve damage specialist this week and hopefully between her and the neuro I can accomplish some improvement. I dream of getting at least somewhat more mobile to be able to have the fun we used to or at least come close. I wish I could just run with you both like I did before jan 2009. I dream of it and wake up, and that is when I cry, I cry because I love you so much but cannot give you what you need all the time. Shoot lets be honest here, I cannot give you what you wish hardly ever. .

So for you my dear daughter, I want you to know I feel the loss too and I wish I could change it more then anything in this world. Hopefully over time with more rehab I will get more functionality, or at least that is what I wish for. I love you xoxo and never forget that no matter what or who I become, never ever forget that.

Its Late, Its Quiet, Its Dark, Its The Way I Feel Inside

Its late at night and I cannot sleep. For the last week I have been having issues sleeping as everytime I fall asleep I am jolted awake by these horrible pains. They feel like being hit with a cattle prod. I fondly refer to them as the cattle prod in the crotch and they wake me instantaneously. Its amazing I can feel that pain but I cannot feel when my husband tries to touch me because I am numb. People ask well cant you at least let him be satisfied? What they do not understand is my husband is not that guy that just wants to satisfy himself, hes that guy that wants to make love, and knowing I cannot feel his touch it to painful for him to have that excitement that is required to satisfy himself, if he cannot satisfy me he cannot even bear the thought of just satisfying himself. He wants me to feel that intimate touch the same as he can and if I cannot then he cannot bear the pain of knowing this, so he too suffers along with me. That is why I am awake right now. I was asleep, but as you can see I am now blogging. Sometimes this blog saves my life.

Its one of those nights where everything is very dark and quite, quite except for the sound of the wind and the thoughts in my head. You know the kind of night I am talking about? Those kind of nights that make your mind go to dark places because there is no one there to talk to so your mind just wanders, it wanders to dark and desperate places and seems to match the outside world, the same as your inside world?

The silence makes me think to much, and for some reason makes the physical pain and the emotional pain so much more intense. Its like because I have nothing or too much too think about, it makes the nerve signals easier for those nerve pains to come through and make my life hell. Its like a direct connection to remind the  signals of the damage, the damage that is me and who I am now.

I sit and think about what my life was like before the day my life changed. I have decided to refer to it as the day I had to start a new life, because my old life as I knew it was gone. And let me tell you this new life sucks to be honest, it sucks I cannot do what I used to and it takes so much for me to try and keep my spirits up. That new life started in the beginning of 2009. When its quiet and late I am reminded all to well of what I have lost. The loss of running and playing with my grand daughter, going roller skating, riding my bike, hiking the cliffs around my house, going on vacation and swimming with dolphins, all those awesome adventures that I did and had to look forward to in the future, that life that is no longer there, that future was taken away from me in a split second, or I guess you would say in how ever much time it took that doctor to destroy my nerves..

My husband lies beside me sleeping soundly as I type away. He sleeps like a baby, how I envy him sometimes. But then I feel bad because how can I envy a man I love so deeply, a man who loves me so deeply. A man who stands beside me no matter what, that goes to doctor appt. after doctor appt. That will get up in the middle of the night, put on his miner head light and cath me to help keep infection under control, That man that will awaken if I cry to loud from the pain and hold me and calm me because somehow even though he cannot feel my physical pain he somehow understands it and he just keeps on until the crying and hysterics stop. How  can I envy a man who has taken over not only his own responsibilities in life but mine as well. He Cleans, he does all my laundry, he does the grocery shopping, hes everything all the time. So how can I envy him for taking on all of that. Its the sleep, maybe that is what it is, it is the envy of the sleep and not him. Its the envy I have of not being able to sleep a whole night through without being jolted awake by pain. Its really amazing the small things that some take for granted. I now appreciate those small things. I wish for those small beautiful things all the time.

I have written a lot of poems at night and slowly I have been transfering them over to this blog, and for some reason tonight seems a perfect time to transfer one of those poems that can explain how I feel better than  I can write it in regular words. So for you my friends who follow my blog I will post one that I wrote at an earlier time, a time when I was feeling this same way. I really hope those that consider that a tarlov cyst can cause you grief really understand how much worse it can be, if you have a surgeon that can damage you, and lie to you and put you in my place. I would love to go backwards in time if only I could.

Here is one of my poems of my sadness I live with now that my life was changed:

The Silence Within

The silence is so deafening
As I keep going further in
I cannot seem to turn and go back
To where I have always been

I Just keep going deeper
Though I try turning back
The sadness is so beautiful
To this heart that has turned black

I'm trying to chase the rainbow
That I know is over the ridge
If I could just climb high enough
And go across that bridge

I need to make my way across
To the beauty that life has for me
The song of oceans I know exists
The beauty I used to see

How did I end up in this place
Where my dreams were taken away
Its not the place I used to know
Where my mind would run and play

Be careful of who you trust out there
So you don't end up like me
Trusting someone who only wants to
Go and steal your dreams

I have to say at least I have learned
To open myself to only a few
To keep my dreams close to my heart
And share them only with you

I hope the silence goes away
And I can come out to the sun
I want to laugh, I want to dream
I want this darkness done

The Silence within me is losing its grip
As I keep trying to get away
I think I may be winning the fight
The night has now turned to day

The silence seems to be gone for now
I hope it stays away
At least for a while, so that I
Can feel warmth shining for at least a day

Why Does The Sun Shine But Not On Me

Its Official, I hate hate hate CES.

It is one of those days that no matter how I sit, lay, stand, it makes no difference to my body and the pain that defies me. I am in Pain. Pain that rules my life. I have taken a burning hot bath, I have sat on ice packs, I have taken medications, I have sat in the recliner, I have laid in  my bed, laid on my couch, stood and paced and nothing can effect that horrible pain. Why? Why is it me that has to live this way? Why not the asshole who has created this? Not only am I dealing with the pain so badly today, but I am so tired I want to die. I feel like crap, have no appetite and I am tired of having hot sweats and then cold chills from this infection.

I also hate when people say " Hey how ya doing today" and you say" oh I am ok" when you know you are lying out of your ass. You know you are not ok, but its what people expect you to say some kind of pleasantry that was started a million years ago I would guess. Do they really want you to be honest? I have seen many people disappear when I am honest. Its like when you go to a doctor and they always always ask " So how are you today" . Now how ironic is that really? You are in the doctors office because you are obviously not ok, but still you say oh I am ok, and they obviously know that since you are there you are not ok. So Why the question, why is it asked? Its a frustrating question that I always dread.

My daughter has gotten so smart over  the last year and a half, she does not ask me how I am today. Why? Because she knows that I will not really tell her, and then If I do really tell her she gets upset. Its a no win situation, so instead we just dont go there. here is a poem I wrote earlier on in this CES journey that really fits this conversation of how people ask questions and don't understand. It is a poem of my frustration. Its a poem that unfortunately I have too many days feeling the same as I did when I wrote it. I wrote this back in July of last year:

'I Am Tired

I am so tired
I am so tired of being me
I am tired of wanting change
I am tired of what has become of me

I am tired of the pain
I am tired of my body defying me
I am tired of people being angry at me because I am tired

I am tired of being sorry
I am tired of trying to say I am ok when I am not
I am tired of the fact that I am just not me
I am tired of being lost in this body
I am just so tired today

I'm Angry

I am angry
I am so very angry at life
I am angry that my most personal self has been taken
I am Angry that a large part of me is gone
I am angry because I have to explain myself
I am angry at the pain each day
I am angry that I have to explain the pain each day
I am so angry sometimes it consumes me

I am angry I cannot feel
I am angry people don't understand I cannot feel
I am angry that I have pain and cannot feel
I am angry people don't understand what its like

I am thankful

I am thankful I have you and you love me
That is all I am thankful for right now

Hopefully tomorrow will be a better day

The CES that never Stops

So I finally got my results back from my culture that I had done on my urine sample from last Wed., and again I have the infection. Its back with a vengance again. Now I am on 10 days strong antibiotics, and 180 days of lower dosage, which will again probably be renewed to another 180 days. My urologist has told me that it just seems no matter how sterile I am with Cathing, its just a lose lose situation. There is no way to avoid infection. He says that its now looking like I most likely will be permanently on antibiotics, as each time I come off of them, the infection comes right back.

I did want to restate a few things that I think are really important for people that see Tarlov cysts on their MRI's.
If and when you see a neuro about it, #1 make sure he is board certifieid and honest.
#2 and I cannot stress this enough, Make sure to request and see ANY and ALL Paper copies of tests that are performed to determine if it is a problem. I trusted the doctor, and believed what he told me. It was not until much later, that I figured out I had been given inaccurate test results, and well we can all see where that has gotten me. Never trust what any doctor tells you, Look for yourself. I wish I would have as I would never be writing this blog.

Ok back to blogging now, but I really wanted to reiterate those points as they could literally change your life.

Today has been a really bad day for me. I have been having severe nerve pain and cannot move around much. I am still amazed how I can be so numb with no other feeling then those nerve jolts that make you scream and sound like you have tourettes syndrome. Those others with CES that read this blog know exactly what I am talking about.

I have also been having hot sweats and cold chills all day due to the infection, along with the Nausea. I wish it would go away and leave me alone. Ah if only wishes could come true, there are a few things I would wish for :) Since I am feeling so bad to day I thought I would work on a new poem, as writing anything that might slightly seem coherent would take more thought, while writing poetry opens and empties my mind. Empties it of all that bad stuff that gets stuck, and I do feel the need to empty my soul.


Why Did You Take My Soul From Me?

Where did you take me I ask myself
Could you have not at least left me my soul?

Did you have to take everything of who I was?
Do you ever have the urge to let me know?

At first I wondered if you had the chance
Would you have left me intact?

But then I learned you had a second chance
And again you chose to repeat this act.

How many times since you left me gone
Have you repeated this same exact thing

Taking the souls of from those loving hearts
Those souls that can no longer sing

If they are anything like you have left me
Their souls can only scream and cry

Scream from the pain and misery
Screaming and asking why

Why would you lie and destroy my heart
And still away the person I used to be

Is money really worth so much to you
Was it really worth more than me?

I hope one day you change your life
Or maybe it might happen to you

I actually think that is the only way
You will understand what you do

To put a price on a soul and life
Is the worst kind of person to be

Cutting emotions with your steely knife
No matter the damage you leave.

I hope one day you will see.

Sporadic Life Sporadic posting, its what CES is all about

Well I know its been a while since I have made a new post, but there have been a lot of stressful things going on. Some of these issues I cannot post about right now, but some I can. Right now I am only going to post about one thing out of so so many. Tomorrow I will post about another very important one, that I think those with Tarlov Cysts should really worry about, but today I am only going to post about this one thing. Take note that CES makes this one thing like a grain of sand on the beach, as there are many many things that make up CES.

One of the great things in my life right now is that I am going to have a new grand daughter, and so far things are going good on that front............... well mostly.

The part that does not fit into that category is the wonderful baby shower I had for my daughter. You see my First grand daughter was born almost 15 weeks early. So when that happened, as every mother I had planned to throw my Daughter the best baby shower any mother could dream of, the baby shower of my daughters dreams. But because of my grand babies early arrival, my daughter never had her dream baby shower. Instead she spent day in and day out at the hospital with her beautiful daughter who was fighting for her life every day, for 99 days to be exact. I had watched my daughter grow from my little girl into the strong woman she is today and I could not be more proud of who she has become.

So for this new grand baby that is on the way, I planned her baby shower and wanted to fulfill that lost dream. You see she is my only child, and as a parent I wanted to make her dreams come true, Its all I have ever wanted from the day she was born. I reserved this beautiful location, with beautiful gardens and ocean views. I made sure they had delicious food, and I special ordered a wonderful cake. I invited all of her close family and friends to join in her celebration. Every thing was perfect down to the balloons and party favors.

Sounds wonderful right? And it should have been. But you can never really predict when CES will rear its ugly head. It just so happens that particular day was to be one of those days. I woke in the morning, with a very high level of pain, so I took my pain meds to control it and continued to shower and dress and was so excited to fulfill her dream shower as I prepared to get ready and go. I was all set, I had showered, done my hair, put on my makeup, I was excited and ready.

Right before I was to leave my house all hell broke lose. I was sitting there one moment excited for the day and the dream I was going to fulfill. In the blink of an eye I and my house was covered in feces and the nerve pain went out of control. It continued on and I lost control. Not only did I lose control, but my body defied me as well as it lost control. Sometimes when this happens it will stop once it has happened. Then I proceed to clean up the mess and move on, not letting it ruin my life. However this day, for some reason it did not stop, nerve spasm after nerve spasm it continued on. I started to panic. What was I to do. It was about 10 minutes to the party and here I was in severe pain, covered in feces, as I am sure guests were beginning to arrive at the event.

Thankfully for my wonderful loving husband who I could not be more blessed to  be married too, he cleaned up the mess I had left all over from the living room to the bathroom, and took my place, where I should have and wanted to be. He left the house and went to meet the guests. I am not sure what he told them without embarrassing me or himself, for I was fully embarrassed and humiliated beyond comprehension. As he was there at the shower getting it started I was home in severe pain from nerves and spasms. See the big problem when this happens for me is that I have no feeling and no control, as every thing is numb in that area, so I cannot feel when everything evacuates my system. And believe me for some reason on this day, this day that was to  be so special was worse then most. I dont know how there was so much that could evacuate from one body, but so it was. I was stuck on the toilet for a good hour or more. It was excruciating and painful. It got so bad that it got to the point where blood was running out because apparently it became so inflamed from the spasms it caused me to bleed.

So there I was stuck on the toilet, in pain and evacuating blood and feces. I eventually was able to finally bend over far enough from the toilet to run a hot, very hot bath after about an hour. Once the bath was run I got in there and layed down in the water. I took many wash clothes and continiously soaked them with the hot water, covering all the areas that had pain. It took well over an hour with that process to finally get the pain to subside, along with more pain medications as well as muscle relaxers. Once I was finally able to get it under control, I again began to prepare myself to go to the shower and hide my frustration, anger and humiliation from all that attended. I was not able to dress in that cute outfit I had planned on wearing, as it was now in the washing machine, getting rid of all the waste it had been covered in. Instead I wore the most comfortable clothing that would not put any stress in my mid to lower section of my body, and that would accompany a diaper without being to obvious.

I eventually made it to the shower, and it was as beautiful as I had imagined it for my daughter, and I know she loved it and I had made her dream come true. That was most important to me as I love her more then this world and would do anything to make her happy, which includes going through an ordeal like that and greeting and talking to the guests as though every thing was fine. I have learned since this horrible ordeal started in January of 2009 to become a great actress. In the end even though I had to go through all the pain and all the frustration, to see my daughters smile and her tell me mom it was every thing I dreamed it to be was worth it, but then again I would also die for her.

The cost of this to me, and I dont mean money, was being mentally and physically exhausted for days. Because no matter what I went through that day to get there, There are certain things you have to fight through to stay strong. It does not mean that I can live a normal life or that I can live with the damage done to me, believe me I am not ok with it, it means I make myself appear to be normal in front of others as to not feel the humiliation I already have to live with inside myself.

Again this is just one day. I have to warn anyone that has a tarlov cyst, this could be you if you choose to have surgery, you can have days like this and you can have more days like this then you do not. I know, that is my life. I have to live my life one day at a time and the above experience is what could happen if you try to plan something wonderful in your life in advance. Your plan can be changed in seconds. At least when I had the tarlov cyst I knew what to expect, that I would get some siatic type pain in my left thigh, that my left big toe would be numb. However this CES? You cannot plan, you cannot hope, you cannot dream. You have to do what CES says you can do.

Obviously it is Friday almost a week later since this incidence happened, but that is how long it took for me to mentally be able to write it, you see first I had to deal with it inside myself. You see first I had to process it emotionally before I could actually admit this is my life.

Lost in my life and its hard to find my way forward

Well its been a while since I have written on my blog, and its due to many issues going on right now.

The first is that I am having a new grand baby. I am super excited, but at the same time super angry that I wont be able to be like I was with my first grand baby with this one. This should be one of the most exciting times for me, but I worry. I worry how long will I be able to hold my grand child, I wonder how many days will I have to give up the right to spend time with her, knowing that those days of CES are going to interfere with my life as they do.

The thing is that CES has been ruling my life lately like never before. See after my surgery I had this fear, the fear of going back to a neurologist. It may seem irrational and some people may not understand it, but going to a neurologist is what landed me where I am. Going to a neurologist destroyed who I was. A neurologist became my nemesis in my mind and scared me to death. I had gone to one other neurologist before my surgery who told me one thing, so I went to the new doctor who was represented to me as a neurologist for a second opinion, but I then found out he was actually an orothopedic doctor, which I did not even know till after he had destroyed my life with his surgery and his lies. So yes I had an irrational fear of letting any other neurologist near me.

Well I ended up going back to the original neurologist because the problems with my feet are getting much worse and I even had a situation where my right leg completely stopped working, there for trumping my fear and sending me running to the neuro. He was not at all scary once I was there, and I am hoping with all my heart to trust him. I will be starting some rehab, as he hopes it can help with some of my pain. The loss of function is there and I don't think it will ever go away, but if he can help me to stop it from going further, then that will give me some peace of mind. Going through this though has put me in a very dark place again, and I am having a hard time climbing back up out of it. Most days are painful and I have to take a lot of medications just to cope, but sometimes if you can imagine, which is hard, its even worse. The kind of bad that makes you now want to fight anymore, and its hard. Its hard to try and focus on the positive like my new grand baby that is one the way.

Every time I start to feel happy, my body reminds me I have a lot of reason for not being happy. So I fight on
and hope that the next day will find me in a better place. Today was a very rough day, with an extreme amount of pain, and has again reminded me of my hate. My hate of what was done to me, by someone who only wanted to further their own aspirations, and not have any care at all for what he would do to me or what I would become because of his surgery. I wish I could make him live one day in my life to see what he has created with his lies and negligence. 

Scary night last night

Lately I have been having an extreme amount of pain in my feet, to where they seem to "Claw Up". It feels like the middle of my foot is tightening up and pulling my front part of my foot in, like a bird clawing on to a branch to sit. It is extremely painful.

Well last night I started having really bad pain at the bottom of my spinal cord, shooting down my leg, so I figured maybe if I got up and tried to stretch out it would go away. When I went to stand, it was like I did not even have a right leg, other then the pain that was surging down it. I could not stand and my right leg was totally unresponsive. I tried to go a few feet from the couch but was stuck, I was leaning against the wall screaming in pain, because I could not move. I could not stand on my leg and the pain was immense

Thankfully my husband woke and heard me yelling, and he came to see what was going on. He had to help me to the bathroom, where I could take a bath and hope to calm what ever it was that was going on with my leg. We both looked at my feet and noticed my right foot was red and purple, while my left foot looked totally normal. So while I waited for the bath to fill I took my pain meds and a muscle relaxer. I just sat on the toilet seat and waited hoping the pain would go away.

I finally took a bath, and sat in the hot water for half an hour and thankfully it started to subside. To say the least I need to make an appt. with the neurologist today to see what the heck is going on. I was only a bit worried about the pain in my feet since it was not getting worse, but it seems now it is going past that point. I am wondering if it has to due with more scar tissue forming on the nerves from my surgery. I am very scared at this point, and think I may be getting worse. It seems the damage never stops, it just keeps progressing. It makes me wonder how long will I be mobile before this just completely takes over me. I hate that this surgery has done this to me, and I hate having to live like this.

Continued from Yesterdays post

Once I was home and had seen my surgeon on several occasions, I was constantly being told that it would get better, I just had to be patient as nerves take time to heal. I could only hear these things so many times, where I finally came to the conclusion I was not getting any better. I would need to learn to live a new life.

Not only did I need to learn to live a new life, but so did my family. They had lost the Mother, Grandmother, Wife, Daughter and Sister I had been. I was gone and what was left was this damaged body that I could not learn to live with. I cannot tell you how many times I contemplated just ending it. Thinking that it would be so much easier to just end it for me and my family. I know that is  the cowards way out, but it is so hard at times, and only living it would you understand.

I am very lucky I have a wonderful husband that is there for me. He is the one person that sees it all. He sees when I am curled up in pain and cannot sleep for days on end because it feels like I am being hit with a taser gun over and over. He has walked behind me when my bowels lose control, when myself and the floor, and everything around me is covered in feces. He silently and lovingly just cleans it up and tries to calm my tears and hysterics. I can honestly say that he has seen all of the worst things you can imagine, yet he is still here and for that I am thankful. Even though we have no intimate relationship anymore due to my having no feeling plus the fear of infections, yet he's still here, as he has stuck to his vows like no man I have ever seen. He really meant the part in sickness and in health.

The two people it is most difficult for are my Daughter and my Grand Daughter. Before this surgery I had watched my grand daughter 3 to 4 days a week from around 9 to 5 each one of those days. My daughter sees me and I walk and she does not understand that most of the damage I have suffered is invisible to the naked eye. If you see me, you will look at me and think "Well she looks fine to me" and I think its very hard for my daughter to get past that visual. She does not see me having to stick a straight catheter in my urethra each time to empty my bladder. Or putting on rubber gloves to pull out the feces. She does not see me when my bowels lose control and I am covered in feces, she does not see when I am in so much pain I want to die, she does not see I can only walk so far before I am in severe pain, as I avoid her on these days. These are the things I hide from her. I don't want to burden her with this, because I know how hard it is to live with.

I know it is also hard for my grand daughter She notices that her "Nana" is not around as much, that she does not climb on the jungle gym and go down the slides, she notices I don't run and chase her, she knows all the things I don't do anymore, but shes 3. Shes 3 and most likely she will never remember the Nana that I swore I would be before she was born, the one that took her somewhere special on most days I had her, so she would know the love I have for her. What she sees now is this other Nana, the one that cannot go to the park and run, the one that cannot pick her up for hugs and kisses because of the pain, the one she is lucky to see once every week or two and never by myself, because god forbid if something happens, she would be alone with me. This is who she will know and remember, not the woman who vowed to show her the love and playfulness that she deserved from a 45 year old Nana. She will never know that young woman.