Well again its been a while since I have blogged. I have been just trying to hang on by a string, and each day is harder then the last. I thought that I would adjust by now, but its so so hard.
I was off of antibiotics for 17 days, and now another infection has set in. I think this is the worst one yet, as its the first one that has made my kidneys hurt. I never knew how bad pain could be in your kidneys as I have never had an infection in them before. They have always been in my bladder and urinary tract. I am also sooo tired all the time and find it hard to wake up before noon each day. Its literally ruling my life, this CES, and even though its been almost two years now, each day is like it just happened and I am not doing so great mentally with it. In fact not only is each day like the first learning to live with it, but it seems that I just keep getting worse.
The infectious disease docs do not understand why I have so many infections, and its very scary because they seem to get worse each time I get one. I have an appt. tomorrow with my urologist, but I went in to the infectious disease doctor yesterday because I was in sooo much pain from my kidneys and am finding it hard to function at all. They put me on Avolox again, but that is only while they are doing a culture to see if this will treat it. The fear I have is that it wont. I am afraid because not only would it mean ending up in the hospital for treatment with iv meds, but I would also spend Christmas in the hospital away from my family.
There has got to be some solution to all of these infections from cathing. I don't know what it is, but I fear if it is not figured out soon, eventually there will be no treatments left for me and then what? Does it just kill me because it cannot be treated? These are the thoughts and fears I live with every day. I start to get optimistic when I go a week or so without infection, and then that just gets blown out the window as soon as that next infection hits. I am just so afraid all the time. When I get feeling this way I just go inside myself and find it hard to have the will to keep trying. I have been taking so many vitamins and herbs to try to boost my system but nothing seems to work and it makes me just feel like giving up and giving in to it.
I also have to schedule a scan of my bladder and kidneys to make sure there are no kidney stones in there, as that is also a common thing that can happen when your bladder does not work. I have never even thought of this, but my doc yesterday told me this is very important and could possibly be the cause of the pain in my kidneys as well. I will find out from my urologist tomorrow and see what he says.
My husband is driving me crazy, he keeps making me take my temperature, blood pressure and pulse ox like every hour because he is also so very worried. Its so stressful and exhausting. I know he is doing it because he is also scared. Hes scared of losing his wife because of this damage that was done to me from the surgery that caused this back in January of 2009. I don't know how long I can keep doing all of this, but I know I wont give up, it just completely pisses me off that surgeon thought he could destroy my life, without any warning of what could happen to me. I sometimes wish the same thing for him, but I know that the wrong state of mind to be in. Its just very hard that not only did it ruin my life, but it has made if very difficult to watch my family in pain watching what it has done to me.
I am hoping that I will not be in the hospital for Christmas and that at least I will get to spend it with my daughter and grand daughters. I will find out Thursday what the cultures show, and am praying that my kidneys are not now being effected by all of this crap. I am just really really tired of it all. I try to get in a better mood but its so hard because there is nothing to be happy about for me right now. I thank god I have my husband, daughter and grand daughters to brighten my days every now and then. Its like the other day I told my husband that I could not imagine going through this alone with out having them in my life. If I did not have them, I can honestly say I may not be here right now. This stuff is so hard to live with, that at times its almost to hard to find something that is worth living for. Its a very shaky balance of good and bad, the good being my family and the bad being the surgeon that ruined my life and made me live my life this way.
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