Category: cauda equina syndrome

total incapacitation

by Midnight Demon, posted in cauda equina syndrome, chronic physical pain, depression

I have been sleeping most of the day. My ankle has been hurting really bad and the only time I left my room was to have something to eat or go to the bathroom. I know I am super dehydrated because I haven’t really had anything to drink most of the day. I had a glass of juice with my supper and that is all I can really recall drinking. It’s late now so I don’t want to drink anything because I will be up all night peeing.

Today was my brother in law’s birthday. I didn’t go to it because I just couldn’t make the stairs. When my mother called to see where I was, she was shocked to know I was in pain because “it didn’t look like it when I got up this morning”. Pain can flare at any time. I don’t have to justify it to anyone. I swear they don’t believe me sometimes, but that is their problem not mine. And even though I spent the day in bed, I am still hurting.

I have not heard anything from the author yet. It’s been almost 24 hrs. I hope I hear from her tomorrow. I better hear from her tomorrow! I have a busy week. Tomorrow I have my pcp appointment, Tuesday I have my father’s appointment and Wed/Thursday is my therapy appointment. I really don’t want to see my PCP tomorrow. I gained some weight back because I wasn’t careful. Plus my mother made cookies, my kryptonite. I have been eating them almost all day even though it killed me to go down the stairs.

I am not taking my meds tonight. Only pill I will take is my birth control. I forgot to count out my meds for the week but that is kind of hard to do when you can’t stand for longer than ten minutes. I should have done it last night when I couldn’t sleep but I didn’t think of it. I usually do it on Sunday mornings when I wake up but today was an off day for me. I woke up late and was in pain and the day kind of got away from me. I read my Lawrence Block books that I bought yesterday and then slept most of the day. Not like it did any good for me. I know it has to do with the weather changes. It’s no longer twenty degrees out so my pain has to increase with the temp increase. I was never like this before my back surgery. Sure, rain hurt my knee whenever it rained but nothing like this. This is total incapacitation. I hate it because there is nothing I can do but rest. If I try to do something, I am rewarded with pain. So I just lay low until the weather equalizes and stays the same for a few days. Tomorrow is going to be interesting.

There’s nothing magical about writing…

by Midnight Demon, posted in cauda equina syndrome, chronic physical pain, depression

“There’s nothing magic about writing; it’s a learned skill”.—Tom Young

I got this quote from a writer’s tip twitter follower. I thought it was poignant as my therapist thinks that I have these skills as writer. She is in awe of my writing. Some times, I have to admit, that I am in awe myself. But writing, I guess, has always come naturally to me. In recent months, all I needed was a phrase to go on. For example, my writing buddy gave me the phrase, “write the pain” and I went off with it and it was a nice piece of writing. I am thinking of collecting these blogs and publishing them into a book. I think they would be a nice short story collection for my next book. But first I need to publish my first book before I start thinking about my second one.

I got a message from my editor that today she will be off as she will be spending time with her family. I just hope when she starts work tomorrow, I am on the list. I am so sick of waiting for her services to start. I know I should start looking for another editor but I don’t have the greenbacks nor would I know where to look. Definitely, not on FB again. And the editors in my area are pretty pricey, like thousands of dollars as they go by word. It would cost me like $50,000 to see my book edited. I don’t have that kind of money, nor should I think that I should pay per word. I think I am just stuck waiting for this editor because I don’t have the back bone to go to her and tell her I need my book edited NOW or I want my money back. I even had a dream where I did this but unfortunately, I woke up before I could see the response. LOL. I am paid in full for services so I don’t know why she is taking so friggin long. I just am so frustrated waiting. It’s like half my life is spent just waiting for people. I have to have gotten my patience back because otherwise I think I would have said something by now. All I do know is that she better be damn good for me to wait this long.

I know for the past few weeks all I have been writing about is my book, but it’s such a big part of what is going on with me right now and it has produced stress for me. And writing about it has helped with my anxiety level.

Today I got a haircut, after two months of not seeing barber. I also dropped off my prescription, only to be told that the doctor needs to change it because they no longer carry the 1 mg pills. I am so annoyed by this. I am glad I am not completely out of my meds but I will if this doesn’t get resolved. I have a few days at best. My doctor is usually good at filling my prescription fast so I am not worried. After this, I decided to go back out and get a mocha. I did some writing at Starbucks. I wrote a letter to my therapist and journaled a little bit. Then it was time to head back home. I got my mother a couple dozen eggs and got myself turkey bacon. I have been craving turkey bacon for a while. I was going to have it tonight for supper but my mother made a type of broccoli soup so I had that instead. I don’t think I could have made the bacon anyways as my ankle has been taxed enough for today. It already became stiff when I started going down the stairs to check for mail. Every time I think I can rejoin the workforce, I have a setback. Tomorrow I have to see my neurologist. That appointment is going to be a waste of time. My neuro has gone holistic on me so is not medically based. But I like her and will humor her as she explains the benefits of chair yoga and the like. She should be a life coach as she tries to incorporate healthy living skills during our appointments. Only doctor I know that does this. But then my doctors are a funny bunch. I have to tell her about the thigh pain that I have been having. I think one of my discs have shifted right as I am getting pain down my right thigh. Usually, all my pain is on my left side, so it is quite unusual to have it on my right. I hope it’s nothing too serious. Because if I get CES again, I will kill myself. I am not going to go through surgery again. I will never be able to work again as I will need a fusion. And so far everyone that I know that has had one, never was able to work again in the capacity they had before surgery. It scares me to think that I might have to have surgery again because my whole lumbar spine is fucked up. I have my L2/L3 verterbraes overlapping one another instead of being in a line and the other discs are all herniated. My L5/S1 is herniated so much it touches my nerve root. But they don’t want to do anything about it. I guess as long as it is not compressing the nerve, I am okay and I am okay with that. I haven’t noticed any weakness in my leg, just radiating pain on occasion, nothing constant. That is a good sign but it is worth mentioning just the same. It has been a while since my last MRI. I don’t even remember when I had it done last. Probably in 2010 or 2009 when my ankle was flaring up big time and we were thinking it was coming from the back. The only thing that sucks is that there was no contrast injected because I am a hard stick. I tried to stay hydrated enough so I could get stuck but the technician couldn’t find a vein good enough for the IV contrast. It sucks having to get stuck but it’s important because the contrast shows the difference between new stuff and old stuff.

bad day: stuff you don’t talk about

by Midnight Demon, posted in cauda equina syndrome, depression

I have been in a rotten mood all day. Started when my bowels woke me up and I wasn’t happy about that. I don’t know if I caught a virus or something was upsetting my stomach but man I just made it. And having CES I was lucky to make it. Usually I am safe when I have hard stools, which they were. I did go an hour later again and it was softer stool. Luckily I was already in the bathroom because I had to pee. So my day started at four in the morning because of this. I have been trying to get back to sleep but either the phone kept ringing or I was getting text messages. I am very tired and though I have shut off the phone and laid down for an hour or so, I didn’t sleep. I talk about this stuff not because I want the world to know my bathroom issues but because no one talks about life after CES. People think that you are normal because you “look” normal and that is just not the case. Sure I was lucky that I didn’t poop my pants today but I could have and it would have really sucked. Normal people don’t think about these things. Sure they might be constipated or have irritable bowel but with CES the nerves that tell you to go are affected. I was lucky I had some warning with bowel cramps (which is what woke me up). But I didn’t expect that to happen at four in the morning. Even if it was four in the evening, I still would have trouble deciding if I was going to go now or later. With CES, you never know when you are going to go. And it’s tough living this way. And because my bowels were unpredictable, it meant I couldn’t leave the house like I wanted to do today. So I figured why bother taking a shower as I wasn’t going out. I will just stay stinky. The depression surrounding this is great. I don’t talk about it much on my blog but I am today because it makes me sad that I can’t do the stuff I normally can. No I didn’t have an accident but I could have. And that scares me. I try very hard to keep myself regular but it’s not always easy.

I think the reason for me not sleeping, other than my ankle deciding to act up, is because I am itching to install the Dragon Naturally Speaking software. Only problem is I am not motivated to actually do it. I have no motivation at all today, not even taking a shower. And I need one really bad as the last time I showered was Friday. I might do it tonight before going to bed. My therapist said that is my goal for the day. I kind of want but don’t want a session tomorrow but my stress levels have been enormous since dealing with my father. Then my mother calls and wants me to go to Walgreens to pick up their paper and check the price of their eggs. Screw that. I am not going out today because my bowels are unpredictable. But I can’t tell her that. I really don’t feel well so I will go with that.

I sent an email to my support group about the “lovely” day I have been having and someone wants me to take fiber. Sorry I already do. I just got a score of fiber pills on Amazon. Normally these pills run like 11-15 bucks for one bottle. I got two for the price of 11 bucks. SCORE. I really need help with regulating my bowels. I will be the first to admit it because I don’t eat right and unfortunately I don’t cook. Even if I were to buy vegetables my mother would boil the crap out of them rather than steam them so they are healthier. I swear my mother got some Irish in her because she boils just about anything or fries it. She once boiled Roman lettuce. She said it was good. I took her word for it. But I don’t eat a lot of veggies. I mostly like pizza and burgers and the occasional Thai food that I buy. I also eat a lot of cereal. I find that it helps my appetite and keeps my weight down, which is good because I need to lose weight. I lost six pounds this month and I think it is because I have been eating cereal. I will occasionally make pancakes or fry an egg but I will have cereal mostly. That is the gist of my cooking skills. I tried to make Hawaiian chicken in the crock pot last week and it came out ok but the chicken was dry. I think I overcooked it.

So I have done nothing today. I haven’t looked at my book or any books today. I haven’t written in my journal. Just did nothing but stay in bed, when I wasn’t running to the bathroom.

flashbacks and memory lane

by Midnight Demon, posted in cauda equina syndrome, CES, depression, medical, psychosis

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.