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.
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