Yesterday’s blog still has me reeling. For some reason I still feel like the world’s biggest jerk and I don’t know why. I think it just could be the depression coupled in with the voices. I keep on getting psychotic breaks despite being on medication but this week is my anniversary of my first CES diagnosis. Last night I was having flashbacks. Every time I closed my eyes, I was in a hospital bed. Being in pain last night didn’t help. I am trying to cope with this but it is just so hard to deal with all the time because CES affects everything I do. It’s like no matter what, there is a reminder. Like yesterday I was drinking fluids because my urine has been dark the last couple of days, indicating I was dehydrated. Well, I drank and drank only to leak and leak. Then I had to have a number two and almost didn’t make it to the bathroom in time. People think that I am doing fine because I am not walking around with my walker anymore but I am not. I still have nerve damage to sensitive areas, areas that are not part of the normal conversation. Sure we can talk about walking and standing and shit like that, but we hardly ever talk about bathroom stuff. Only a few friends and family members know that I have this problem. Granted it is not as severe as some one else with CES but that doesn’t mean I have CES any less.
The depression I know will fade one of these days, maybe when baseball returns next month. I just know I am stressed out over this book. I am reading it and wondering if I can truly put out the dirty laundry more so than my blog, because once it is out there, I can’t take it back. Having the flashbacks last night made me realize that I still am never going to get over this. Every year there is some reminder and today my scar is itching. I remember after surgery how nasty it felt to move the muscles around because they weren’t together anymore. I remember not feeling “whole” anymore because I had stitches in my back and pieces of disc taken out of me. You never know what that is like until you go through it. Sure people have surgery all the time to take the bad stuff out of them that is causing them disease but they hardly have to face it again and again. And I got CES twice. Lucky me. I have had four back surgeries. The first two was done thirteen years ago. The first was to remove the disc that was causing my legs not to move properly. The second was to remove the infection that happened two weeks later. I had a nice staph infection and had to be on strong antibiotics. These antibiotics almost killed my kidneys and liver. I went into kidney failure and they weren’t sure if I needed dialysis or not. It was a wait and see game. Luckily, after they stopped one of the antibiotics, my kidney function tests came down, albeit slowly. It took almost two months for me to have normal kidney function tests after I stopped the antibiotics. I also was very weak as my blood count got really low. To say that I was anemic would be an understatement. I was told I might need a transfusion if my count got any lower. I didn’t want a transfusion as I always heard stories about things that happen, like a transfusion reaction where you reject the blood you are given. I was scared. And I was alone. It took a few nurses and several family members just to get me to consent to the second surgery. I wanted the infection to kill me. But I am glad I got it because the pus pocket was close to bursting and if the stuff got on my nerves, I would really be in bad shape.
Memories such as these keep popping into my mind. I can remember stuff like this but yet I can’t remember if I had breakfast or not. The brain is a funny thing. I guess it just remembers what it wants to. I just wish it would happen during the day and not at night when I want to sleep! But the depression remembers these things. I know that if I was in a better mind set back then, I probably would have been over this a long time ago. But it’s important to tell people that those with back pain can get CES if they are not careful. All it takes is a herniated disc to rupture and boom, you will have this dreaded condition. I just hope that if this happens to you, you get the care you need within 24-48 hours after onset. Or things might be permanent. I was lucky that my CES diagnosis was caught early to reverse the nerve damage that was preventing me from walking. I can walk without a limp but I still need an AFO (ankle foot orthotic) because my foot is still weak, even after all this time. And no matter how many times I have been to physical therapy and there have been quite a lot, I still can’t regain the strength I lost. I am at 90% recovery. The bladder and bowels were after effects. And most likely caused by the second surgery/diagnosis that was at a different level. That happened five years after my first. I was a lot calmer about the second go round than I was the first. What truly helped me was finding a support group (www.caudaequina.org). Knowing that I wasn’t alone and knowing what to expect truly helped me recover and keep my spirits up.
midnightdemons7 