So I finally got my results back from my culture that I had done on my urine sample from last Wed., and again I have the infection. Its back with a vengance again. Now I am on 10 days strong antibiotics, and 180 days of lower dosage, which will again probably be renewed to another 180 days. My urologist has told me that it just seems no matter how sterile I am with Cathing, its just a lose lose situation. There is no way to avoid infection. He says that its now looking like I most likely will be permanently on antibiotics, as each time I come off of them, the infection comes right back.
I did want to restate a few things that I think are really important for people that see Tarlov cysts on their MRI's.
If and when you see a neuro about it, #1 make sure he is board certifieid and honest.
#2 and I cannot stress this enough, Make sure to request and see ANY and ALL Paper copies of tests that are performed to determine if it is a problem. I trusted the doctor, and believed what he told me. It was not until much later, that I figured out I had been given inaccurate test results, and well we can all see where that has gotten me. Never trust what any doctor tells you, Look for yourself. I wish I would have as I would never be writing this blog.
Ok back to blogging now, but I really wanted to reiterate those points as they could literally change your life.
Today has been a really bad day for me. I have been having severe nerve pain and cannot move around much. I am still amazed how I can be so numb with no other feeling then those nerve jolts that make you scream and sound like you have tourettes syndrome. Those others with CES that read this blog know exactly what I am talking about.
I have also been having hot sweats and cold chills all day due to the infection, along with the Nausea. I wish it would go away and leave me alone. Ah if only wishes could come true, there are a few things I would wish for :) Since I am feeling so bad to day I thought I would work on a new poem, as writing anything that might slightly seem coherent would take more thought, while writing poetry opens and empties my mind. Empties it of all that bad stuff that gets stuck, and I do feel the need to empty my soul.
Why Did You Take My Soul From Me?
Where did you take me I ask myself
Could you have not at least left me my soul?
Did you have to take everything of who I was?
Do you ever have the urge to let me know?
At first I wondered if you had the chance
Would you have left me intact?
But then I learned you had a second chance
And again you chose to repeat this act.
How many times since you left me gone
Have you repeated this same exact thing
Taking the souls of from those loving hearts
Those souls that can no longer sing
If they are anything like you have left me
Their souls can only scream and cry
Scream from the pain and misery
Screaming and asking why
Why would you lie and destroy my heart
And still away the person I used to be
Is money really worth so much to you
Was it really worth more than me?
I hope one day you change your life
Or maybe it might happen to you
I actually think that is the only way
You will understand what you do
To put a price on a soul and life
Is the worst kind of person to be
Cutting emotions with your steely knife
No matter the damage you leave.
I hope one day you will see.
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