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.