Well I went to the infectious disease doc today and he agrees with putting in the suprapubic catheter. Everything I have been dealing with seems to be pointing to possible colonization of bacteria in my bladder, and both my urologist and the infectious doc agree on this route.
I will be scheduling my surgery as soon as possible, hopefully to avoid more infection. Lately there has been some really bad stuff coming out of the bladder that looks like a mixture of sand and mucus. I asked the infectious doc today and he said that its a good indicator of having stones in my bladder, as well as a breeding ground for bacteria, since my bladder does not work and things settle and build up in there. I hate when I start to get hopeful that something might work only to be disappointed, but this at least sounds like it could help, at least I am hopeful again.
I have my ultrasound next week to look for stones, and will also be scheduling my surgery. Apparently the surgery should not be too bad and its an out patient procedure so hopefully things go as planned. Also the infectious doc said that he will have me come in the day before and give me two different antibiotics by IV and then also for the next four days as well as IV fluids along with the antibiotics. This is to make sure that I do not again get an infection while trying to help the problem. It is just so frustrating, but at least I have now come to terms that this is what needs to happen, at least its something that may help. If not then they will remove it and go back to where I am, which would probably mean infection after infection. At this point I am out of ideas and so are the docs, so lets hope good things come from this.
I know that it wont fix my problems of my bodily functions not working or give me back the feeling where I am now numb, and I know the pain I live with, will still be there, and I will most likely be dependent on pain and nerve medication for the rest of my life (hoping that this does not damage my kidneys) as well as the indignity of having to wear diapers, but if I could at least have less infection that drains my body continuously to where I cannot even function from the exhaustion, then that will be a bit of improvement on my life at least. Maybe just maybe if I can go a month without infection, I can at least get a bit of my energy back because right now I feel like I am dying a slow death
My pain levels lately have been horrible and seem to always be getting worse. I am now having horrible pain in my heels when I just step on them to walk and I am hoping this CES is not progressively getting worse, causing more and more damage to my already damaged nerves. I try to go for walks to help with the pain, but its very hard for me to even get up the energy for that any more. I hate this life I live and so often want to just end it, but I know that would only be painful for my family and friends and that is not fair to them. Its not fair what I have to live with, but unlike that asshole doctor, I would never put my loved ones through that. I would not even do that to my worst enemies as I do not have a black heart like some people, like the doctor who did not care what he did to me. I am sure he goes on with his life, never giving a second thought to what he has done to my life. If you are reading this, do you Mr doctor? Do you have a conscience? Do you have nightmares about me like I have of you?
I hate that I have to live my life this way, and its so hard to be happy or even have one happy day but I try. I try to hope, to hope that I will see my grand daughters grow up and have children of their own.
The Darkness I am
It used to be the light in my day to day life
I was a great mother, and a wonderful wife
But the light keeps getting darker in this life of mine
The further I go on and the longer in time
They say the body is a temple to care for
That if you do it right, it will give you more
My temple has crumbled and is falling apart
Piece by piece it has shattered my heart
It amazes me that one man had that power
To smash in to bits what once was a tower
A tower of strength that seems no one could destroy
But he smashed it apart like some small plastic toy
My days I had known were so bright and so sure
My days now are spent just looking for a cure
A cure to live for, something I can grasp and embrace
Will I find it in time, can I really win this race
This race to find happiness and make the dark go away
The brightness of love that will shine on my days?
Its hard to stay hopeful with the things that I endure
The things that make death seems so much closer for sure
I want to remind that man who destroys
Of the light that he takes and breaks just like toys
You wont forget me, I will remind you each day
How your knives made of steal made me live this way
It would not be so bad if it were only your knives
But you go around with your lies ruining lives
For you never would have touched me with your knives made of steel
Had I known of your lies, you and the devil making your deals.
I wonder what you in the end will have to pay
For your deal with the devil and the lives that you slayed
I have a general idea of my future do you?
I wonder what the devil has in store when your due
I hope it was worth it to your soul.
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