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.