Tag: cauda equina syndrome

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.

Cauda Equina Syndrome Thirteen years later

by Midnight Demon, posted in cauda equina syndrome

On this day in 2001, I was showing symptoms of Cauda Equina Syndrome and didn’t know it. I just knew I was in a lot of pain and couldn’t walk or feel my toes. As time progressed this would happen to my right foot and then I knew I was in trouble. I called my psychiatrist a couple days later because I had an appointment to see her. I told her what was going on and she said to call an ambulance right now. I never heard her be so stern before. And couldn’t figure out why she was freaking out. I was in another world of pain and misery that I really didn’t care. But I know that I needed help and I got it later that night. I was in the ER for hours before they finally figured out I have this “Cauda Equina’ syndrome, what ever that was. No one bothered to explain it to me. I was left on my own in figuring it out but I know that I couldn’t walk. I was twenty-five years old and I was in a wheelchair. The residents were telling me I had to have emergency surgery. I felt like I was in a daze, that this wasn’t happening to me. So I asked if this surgeon was a board certified surgeon. She wasn’t but she was “eligible” whatever that meant. I said no, I wanted a board certified surgeon or there was not going to be any surgery. So at five in the morning I got my surgeon and he said I was going to the OR in an hour or so. I bawled. I didn’t know what to do after this. I still kept thinking all I needed was physical therapy and pain meds and maybe a walking device and I would be ok. No, I had to have surgery to preserve what I was losing. Luckily my bladder wasn’t too much effected by all this and I had a good surgeon whose only mistake was putting me on the wrong antibiotic, which later caused a staph infection two weeks later. I still feel like if I was place on the right antibiotic, I wouldn’t have needed a second surgery to clean out the gunk in my surgical bed. I am just grateful they got it in time or I would have been in worse shape.

This happened over thirteen years ago and I still remember it like it was yesterday. I guess you never really forget something like this happening to you. The most humiliating thing was that I couldn’t go to the bathroom on my own. It took several nurses to hold me up and another to wipe me off. You don’t forget something like that easily. You also don’t forget relearning how to walk again, this time with something called AFOs because your feet are still doing flip flops by themselves. You have no control over your feet. You have no idea where they are. Your balance if off and this is a terrifying time. Because it’s been more than three days and you still can’t feel your toes. Doctor said it would be three days and I would be up and walking. What a lie. He didn’t know the damage I suffered. He didn’t care that I was going to be in rehab for quite a while. His job was done. He did the surgery and that was what he was supposed to do. The rest was my job, though no one told me what it was. I had to figure it out all on my own. And I did figure it out months later when I was walking with a cane and visiting a support group for those suffering my condition. Some had it worse than I did. Some had it the same but had bowel and bladder problems. I guess I was one of the lucky ones that just had the foot drop and weird walking moves. I learned everything I could about the nerves and dermatomes. That helped me to understand where my pain was coming from.

Today I still have the AFO. It might not be the same one I had thirteen years ago but it works. It helps me walk without pain. And that is all that I care about at this point in the game.

doubts and fears about my book

by Midnight Demon, posted in depression, suicidality, suicide attempt survivor

I don’t know what kind of day I have been having. It started very early, like 0430 early. I got some writing done. Had breakfast but that was the only thing I have eaten today. I am too tired to make something to eat. The leftover Chinese wasn’t enough to fill me up. I just had a banana. Hopefully that ties me over until tomorrow. Missing two meals is a big deal but there is nothing I can do about it now.

I saw my PCP today and he is trying to reassure me that I don’t have CES again with my foot problem. Meanwhile I am trying to convince him that I still have nerve damage in my foot. He wants me to see yet another flipping doctor. UGH. I will but I am going to keep my tongue in check when he says there is nothing wrong with me or that I just have a case of chronic tendonitis. If he decides to put me in a damn boot he has another thing coming to him. I am not wearing a boot. I wore one for almost three months and it didn’t do shit. Well it did do something, took out my hip flexor muscle. That felt so good (insert sarcasm here) NOT!

I had a chat with my therapist today. We talked about my doubts about my book. We also talked about my fears that I have. And the more we talked, the more I didn’t want to publish. Then my editor says she is changing her policy and I freak out so I IM’d her to find out if this includes me. I sent her two chapters of my book so she can get an idea of what my writing style is. I am hoping she will be ok with it. I really want to work with her and I think she wants to work with me. I just have one more payment for her and then it still is a waiting game on when she can fit me in. But all this waiting is driving me nuts. I have decided to print off the copy of the book and there are like six blank pages. I am printing blank pages that are costing me money! DOH! I figure I can read the book again and see of something pops out at me that I should change or add to. And what is really killing me is that I emailed my book to some people and they backed out of reading it. Didn’t have the courtesy of letting me know, for a MONTH now. I am kind of pissed but I understand that life gets in the way. But they should have let me know sooner rather than later!

So my therapist wants me to get someone to read it to give me some feedback on the book before it is published. Problem is, I don’t have many “real” people to do this. I don’t have a best friend that I can talk to about this and give him or her my book and let them tell me how it is. I might have to ask someone on Facebook to help me. I don’t know who else to ask. Course most of my status posts go ignored. Course I am at the point where I think publishing is going to open a can of worms I might not be ready for. This book is very personal, like my blog. But I don’t think my family reads my blog and knows how suicidal I have been over the years or that I poop and pee my pants every now and then or that I am even transgendered. They know that I suffered from a nerve injury. They know that I am gay. They know I suffer from depression. They know I have been hospitalized numerous times but they never knew why. This book is the why. Just thinking about it is making me nervous. Part of me just wants to say the hell with the editor and hit send to publish it and another part of me wants to just delete the book. Do all writers feel like this when their baby is finished? Or is it just me because I am a suicide attempt survivor? I don’t know. I never have written a book before now. If anyone reading this can provide some input in the comments, I would be most appreciative.

My therapist thinks it’s a wonderful thing that I have written a book because no one has before. I find that hard to believe. Granted my book deals with a lot of issues and illnesses. I just hope that I can make it coherent enough to explain the different sides that all contributed to my suicidality. My therapist thinks that I should write an Epilogue to say all this stuff. But I think the intro will do that just fine. My only fear right now is that it will be too much for my editor. I don’t think she has dealt with this kind of stuff before. And I am worried that it will overwhelm her and she pulls out an all stop.

still in a foul mood

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

Still in a foul mood

Woke up early again today. Seems my bladder likes to be relieved before seven these days. Then I am up for most of the day. I am not happy about this new arrangement but if it means not wetting myself, then I will do it. Lord knows how many times I have had dreams about going to the bathroom and actually peeing. How I have not wet the bed so far is a complete miracle that I am guessing I am blessed with CES for the retention it gives me. I guess that is the only blessing CES has given me.

I went to my “happy place” (aka Starbucks) and it didn’t make me happy. I had a good new latte called Caramel Flan. It is not too sweet but very caramelly. If you love caramel, I highly recommend it. I then started my journaling but kept on getting distracted because my earbud on my right ear kept popping out. Every few minutes I had to push it back in. So annoying. It made it hard to write anything. So I just went on Facebook and Twitter. When I finished that I left. I was going to go to the grocery store to pick up some more powerade but I missed the bus and had to wait for half hour for the next one. I just decided to wait for the bus to take me home instead. I really need to call Sallie Mae to get my loan payment reduced or deferred. So I am going to call them after I blog this. I have been putting it off because of the holidays but now I can no longer do that.

My mood is terrible and I might start an argument with the person. I don’t care. I don’t have any extra money to pay them right now. I can barely get by on my income as it is. I am on a strict budget with paying the editor and not being able to eat out is killing me. It is a necessity right now that I eat at home but I do enjoy not cooking and just placing an order for delivery. I think most people enjoy that but I no longer have that luxury, least for now.

I know yesterday I had thoughts of death in my last blog. I woke up with them again today. Seems no matter how much I try to keep them out, they creep back in. It doesn’t mean that I am suicidal. I am not planning my death, though if the higher power wants to take me now, I wouldn’t mind it. My family might but I wouldn’t. Seems my family is becoming more dependent on me being home than ever. I being asked to babysit more and to take my father to his doctors appointments. I don’t mind doing it but I also like to stay in my room and be shut out from the world. Since not being able to work, I have not gone to Boston.com for news. The only news I get is from Facebook/Twitter. So it no one posts a big story, I am not likely to get it or know about it. I do get YahooNews on my twitter account but I have not read a paper in years. I used to like reading the Sunday paper at work. It was a good way for me to keep up on things and check out the new books that come out. Now unless I see a book on a show or promoted through twitter, I am not going to know about it. Or through my favorite authors. I think that is the best way to promote is by social media.

I cannot wait for March. I can finally get my tablet off my phone bill and will be saving fifty dollars a month. My phone bill will finally be affordable on my new income. I still will be able to use the tablet, least I think I will. As long as I have Wi-Fi connection, I should be ok. As it is, I don’t use it much. And it is considered a dinosaur now so I doubt anyone would want it except for recycling or something. I might still keep it as I have Kindle books on there.

I don’t know why I am in such a sour mood. I know sleep has something to do with it. I can’t stand it. I hate being down because I know there is nothing that can be done about it. But at least it isn’t sucking the energy from me. But I think it is only a matter of time before it sucks my motivation. I still have to write my few pages for the new book today. I still have no idea what I am going to write. If nothing comes to me, I will just edit what I have.

One thing that pisses me off about my mood being low is that there is no reason why I should be depressed, unless I am still grieving for my friend but I don’t really think that is it. Whatever it is, I hope that it goes away soon and I go back to my midlevel depression. Because this foul mood sucks.