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.
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