CAMS preview

Jobes

For those wondering, here is what a future blog post of CAMS is about. I will be writing more about this and the SSF in greater detail.

horrible feeling

I was supposed to type up a blog tonight about things but never got to so I will post it another time.

I got a little crazy last night, actually, more impatient because I wasn’t falling asleep fast enough. I was really tired and took my meds but my damn brain just wouldn’t shut off. Then I got really paranoid. I still believe a fellow blogger is after me though I know that is highly unlikely. I just can’t help feel that this person is out to get me, and is watching what I say I do through the web. I know part of this is because I missed taking my meds the beginning of the week. Not taking the pink pill really does a number on me when I don’t take it. My therapist wants me in the hospital. Pisses me off because other than babysitting me, what the hell are they going to do?? I have to give the meds time to work. Sure they can drug me up good like the last time I was there but I don’t want that. They had me on almost 12 mg of trilafon at one point because I was paranoid WHILE in the hospital. I thought the staff was going to harm me and wanted to barricade myself in my room. But I thought if I did that, how would my roommates get to their stuff and bed so I didn’t. I told the contact person, who made me get some PRNs and I got drugged up some more. I hated it. The regular voices that I had went bye-bye and I was all alone. I hated it.

I told myself that if I became psychotic again, I wouldn’t let my therapist or psychiatrist talk me into going in the hospital. I will do whatever it takes to avoid another hospitalization. Right now, I am trying not to obsess about my stats too much. I don’t know why I have to be such a nerd. I check my blog stats, I check my sales stats, it’s always stats. And I did poorly in the class that I took. I never understood, and still don’t, know what the numbers really mean. It took me hours to get it. Now, I understand a little more but I really just look at sample size and the P value of things rather than percentages and graphs. I hate graphs. I always had a hard time making them in college. I could never get the Y and X values right. I always mixed them up so my graph looked stupid.

I had therapy today. My therapist is worried about me. A few bloggers are too. I just hate feeling this way. I just want to end it and I don’t have a real good explanation on why I want to die. Is that terrible? I just published my book and now I want to die. What does that say? No one knows how I feel. I just feel fucking crazy right now. The voices keep telling me I am being watched. It’s a horrible feeling. Hope that it only takes a few PRNs to make them go away.

flashbacks and memory lane

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.

really vulnerable right now

Had a painful day today. I am very sore from my fall that I took yesterday. Walking is more difficult now because my knee and thigh are involved in giving me pain.

I feel lousy because I still have this cold. I don’t know if it is getting better or worse, but it definitely isn’t going away. I have been taking vitamin D supplements to try and boost my immune system. And no that is not a typo, I meant D. I participated in a trial of vitamin D to help boost immune function and it does work. Since I have been taking it, I have not had bronchitis or pneumonia. It does lessen the effect of the cold but I have been lax in taking it every day.

Voices are still around taunting me. I am trying not to listen to them but it is so tiring to do so. My defenses are already down because of this cold that I got and my pain threshold has been increased. I am just really vulnerable right now.

I emailed my PCP’s office the other night and got a response. I had to laugh and ask myself, did they even read the message?? I told them the nerve block didn’t work and I was not going to see another specialist ever again for my ankle problem. Or have another test done. The nurse writes back “oh I see you have further tests to be done and see a neurologist”. I am like WTF are you kidding me lady!! Did I have to SPELL it out that I am DONE with anything anyone else can think of that is causing me this pain and not help me with it??? My pain meds are working and that is all I fucking care about. Just as long as my doc continues to prescribe them, there isn’t going to be any problems.

I got an email from my pharmacy saying that my medicine, which I just put in a refill on, is out of stock. So today I call to see if it has come in and find out the manufacturer is having problems making it. I am like what??? I heard about this shit happening but not to my medication!! I have enough to cover me and hopefully it comes in tomorrow but if not I don’t know what I am going to do. I need my Ativan! I hate having to ration it and just take it if I really need it. I might have to use more Neurontin to cover my issues as lately it has been helping me with sleep.

Been up since six this morning. I hate waking up this early and I didn’t take a nap today. I am really cranky. I made myself breakfast, like I always do. I might have breakfast for dinner. I am too lazy to make something else. My specialty is fried egg sandwich. Used to be scrambled egg but now it’s fried egg, once I learned how to turn the egg over, LOL. It is not an easy thing to do without breaking the yolk! And I love the yolk. Probably why my cholesterol is high but I don’t care. I just read something today that said that having chronic depressive episodes is “causally linked” to heart disease. So if I am going to have a heart attack that kills me before I kill myself, I am for it! But I wonder if the reverse might be true, that heart disease causes depression?? HMM there is something to ponder! But then you have the health junkies that die of a heart attack so I don’t get it.

Tonight, which is soon, all I am going to do is watch the TV show MASH and laugh. I love that show.

Oh and I forgot…today is my thirteen anniversary of CES, Cauda Equina Syndrome. 13 years ago today I lost my ability to walk and within a month got it back but I had to have back surgery to have that happen.