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.