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.