Category: cauda equina syndrome

depression and delusions

by Midnight Demon, posted in Bipolar Disorder, blogging, cauda equina syndrome, chronic physical pain, depression, mood disorders

Been reading my blogs from a year ago and found that I was very depressed. I didn’t want to be in treatment. I didn’t want to take my medication anymore. I just wanted to be left alone. I felt like I was a bother to my psychiatrist and my therapist. Then things got more serious. I was in pain and that just sent me over the edge. I became suicidal. Now there was no way I couldn’t see my pdoc or therapist. They wanted to see me despite me telling me them it was a waste of their time. I must have read at least three blogs that said this.

It was after my book was published and I sunk into a deep depression. I don’t remember it now. I just have the blogs to monitor these things. I am glad I have this record because I don’t remember half of what I write. Some blogs were written in the evening. Some were after midnight. The ones written after midnight were more depressing than those written at an earlier time. But then, my moods always get worse after midnight, especially if I can’t sleep. I talk about Hyde in a few of the blogs but not all the time. Hyde is my suicidal alter that comes out when there is a perfect storm: I am in severe pain, deeply depressed, and want to end my life. He likes to write the most morose things. He will write suicide notes. He hasn’t been around much since July. I hope that he stays away.

There was another blog that I read that was “private” I had to throw it away because it was a description of me trying to end my life. I couldn’t justify keeping it so I “threw” it away.

I am in a lot of pain right now and I just realized I forgot to refill my bottle of pain meds that I keep by the bed side. I will have to get up and do so. My ankle is not going to like it but it needs to be done. Because if the pain gets worse and I have to walk the three feet to the bureau, that will be worse. I hate being in pain at night. It is awful. But hopefully my meds will kick in soon and I will fall asleep. I doubt that it will be soon. Foot is also acting up along with my ankle. It’s the trouble twos. I usually can’t rest when both my foot and ankle are flared up. I didn’t do anything. I think it is nerve pain because my toes are throbbing big time.

I read a lot of my blogs tonight. I didn’t notice any patterns or anything in my mood for the months I was depressed. And when I was depressed, the world stopped spinning. It was horrible to read the pain I was in and I don’t mean the physical pain. The mental pain of depression was awful. I don’t know how I got through those episodes without trying to kill myself. According to the blogs, I had extra sessions with my therapist. That must have been what got me through. I wrote that I fired her a few times in addition to cancelling my sessions that she refused to do. In one blog, I wrote that I had pain and she un-cancelled the session. I had to see her. All because my ankle was hurting me. She is a weirdo, but she is my weirdo.

I feel depressed right now because of my pain and that I can’t sleep. It’s after midnight. I feel like I should write. Writing tends to make me sleepy so I can actually sleep, even if it’s for a few hours. I am sure to wake up anywhere between 0400 and 0700 today.

As I have been writing about my second diagnosis of Cauda Equina Syndrome, I have another story to regale. One night the nurse practitioner decided to give me a high dose of Neurontin with my other meds that I was taking. Mind you, I was still recovering from surgery so I still had some anesthesia in my system and I was on some powerful pain meds at the time. She gave me the Neurontin to try and ease the “nerve” pain I was having in my thigh that was weak. I have been on Neurontin before so didn’t think nothing of it. Until I started having delusions. I imagined I was in my bed at home and when the tubes fell into the nursing stations, I thought my mother had fallen out of bed. I couldn’t get up to see her but when I woke up from the noise, I realized I was in the hospital and went back to sleep. Soon after the nurse came in to wake me up as I had to go for an MRI to find out what was causing the weakness in my leg. She was to give me valium so I could be relaxed during the MRI and a pain med so I would be comfortable on my back for the hour. She didn’t know my mental status was impaired until I told her I had to call my mother and find out if she was okay. At 0230 in the morning, I called home to see if my mother was indeed ok. She was and told me to worry about myself. I realized I was dreaming and the nurses went on their way but I still wasn’t myself. The orderly wheeled me to the emergency department imaging center and I had a flashback of when I was first diagnosed with CES. I was stuck in this time. I had no idea what was going on. But I was too drugged to do anything about it. By the time they had me on the table for the MRI, I passed out. When I came to, two nurses were trying to catheterize me because I hadn’t gone to the bathroom in hours and my bladder was very full. They asked me if I knew where I was and I told them I was in the ER (I was actually back up in my room but it was still the middle of the night) and that I had CES again. I then passed out but not before hearing them say something like “he’s gone”. When I finally came to the next day, the nurse practitioner came into my room to talk to me. She said that I had a bad reaction to the Neurontin. I just looked at her and said, that wasn’t a dream? She told me no. I was floored. She was going to put me on another medication and that is when I stopped her. I told her to run it by my psychiatrist first before putting me on any more meds. My psychiatrist must have scolded her because she came back and said she wasn’t going to put me on anything else but to make me comfortable. Results of the MRI showed that I had a fragment on my L3 nerve root and would need surgery again. Oh fun! It would be my second in three days time.

OSU hat and other things

by Midnight Demon, posted in Bipolar Disorder, blogging, cauda equina syndrome, chronic physical pain, depression, mood disorders

wpid-img_20151001_165524.jpg

OSU hat and other things

I finally got my official OSU (Ohio State) hat today. In the box it was sent it, I also got a bunch of snacks. There were sample packs of gum, Combos pretzels, and other stuff. I thought it was really cool to get these things. I never got more than what I paid for before.

I saw my pdoc today. We discussed the pain I have been having and the corresponding depression that I am in because of it. She thinks it might be the nerve connections growing back. It’s a painful process but it could mean that I could get sensation back in my foot where it is numb and weak. That would be good because finding out that I stepped on something and it’s embedded in my foot is not a good thing. I had a tiny piece of stone in my foot a few months ago. I have no idea how long it had been in there as skin was almost covering it up. I couldn’t believe it. But a piece of stone is better than a piece of glass. I will never forget the time my mother broke a glass in the bathroom and a fragment was left behind. I stepped on it as I walk barefoot. I thought it was a piece of rock and it was this piece of glass. Had no feeling in my foot whatsoever as I didn’t feel it puncture my skin at all. All thanks to having cauda equina syndrome.

I am extremely tired. I have been up since 0630. Before my pdoc’s appointment, I had to go to my father’s. As I was approaching my father’s apartment, his doctor called to tell me his INR (Coumadin level) was low. I said I would investigate and call her back. Turns out the ass hasn’t been taking his night meds. He must have missed a few nights for his level to be low. I wanted to strangle him. He is at risk of stroke not only because of his age but because he has an irregular heart rhythm. So he has to take this medicine to keep his blood thin to prevent a clot. I regaled the story to my sister and she tells me he starts his meds on Monday. WTF. He has to take them every fucking day and night. I am so frustrated because I am the one the docs go to when there is a problem with his blood work. He doesn’t understand or care, I don’t know which. I am too tired to figure it out. I don’t live with him so I am not there when he takes his meds. And I will be damned if I have to make a special trip every night to his house to make sure he is compliant.

I should have ordered Thai food for dinner but I wasn’t hungry when I left my pdoc’s office. I really would love King and I’s Pad Thai. I haven’t had a decent Pad Thai since I left work three years ago. There is a place in my town that makes it that is comparable but it’s not the same as King and I’s.

The one thing I did forget to talk about with my pdoc is the PTSD symptoms I have been having with my anniversary coming up. I think the stress of being in pain while I was seeing her made me forget. I really didn’t want to see her. I just wanted to go home and put my foot up. I might shoot her an email. I really just want to get through next week without it bothering me but I doubt that will happen. It’s really hard to forget something like having to go through two surgeries for the same problem. And then to find out that your second surgery had to be done because a disc fragment was embedded in the L3 nerve root. You never get over the anger of dealing with something like this. I have tried letting it go but it is very hard to do when you are in pain every day because of this injury. And now to suffer the consequences of surgery and scar tissue, it’s just too much.

Hurricane Joaquin

by Midnight Demon, posted in Bipolar Disorder, blogging, cauda equina syndrome, chronic physical pain, depression, mood disorders, suicide

Hurricane Joaquin

Today has been heavy rain and flash floods every where. I am glad I didn’t venture out as I would have gotten soaked. It’s windy but not too much. During one of the breaks in the rain, my mother decided to open the back porch door. Then the heavy rain fell. Luckily, I got to the kitchen in time before it flooded. It is really humid and the house is very muggy as most of the windows are closed. I am ok in my room, but then I have the AC. I hope the rain clears up by tomorrow as I really don’t want to be traveling in the rain. I don’t mind getting wet if I am just walking in the rain (I love it!) but if I have to go somewhere, I hate being in wet clothes. I don’t usually carry an umbrella in stormy weather because all you are doing is fighting with the damn thing and going to get soaked either way. I will carry it if there is no wind, which is what I hope the case will be tomorrow.

I’m glad I didn’t have to go into town today. There was a fire inside one of the stations and flooding at another one. Good going MBTA! The line was down for a good couple of hours. It is now just getting close to being on time. If the stations can’t handle heavy rain, I don’t know how they are going to handle the winter. This past winter there were major delays all over the place. Commuter rail going to the suburbs were affected as well. It was a disaster. I hope this winter won’t be as horrid, but you never know until January.

I had therapy though we didn’t talk about therapy things. Our connection wasn’t great today, probably because of the weather but I think my therapist needs a new phone and she is in great denial about it. So we talked about tech stuff. She was amazed that she went on the internet when I send her links to my blog. She had no idea. Talk about being clueless. She also doesn’t want to lose my text messages, which I can understand. She did that before and doesn’t know how she did it and boy, was she in a panic. I tried explaining to her that getting a new phone will suck for a little while but she wouldn’t listen at all. This is what I am getting from therapy. Counseling my therapist on cell phones and how the internet works. LOL. I found it funny and made a comment about it. She just laughed. She did read the yesterday’s blog that I sent her. She said that it was good that I sent it to her because she doesn’t know when her anxiety about my pain is interfering with things.

We then talked about my writing, or rather the lack of it. Today has been a long day because I woke up so damn early. She said to print out the things that I have written and read it over. Maybe that will spark something. I haven’t done that yet. I was describing the difficulty of writing when she asked if I had any journals about psychosis or something to that effect. I told her I just have suicide or self harm journal articles. I suppose I could Google something but that sounds like a lot of work for something that is supposed to be fiction. I don’t really want my short story to become a clinical paper. She really wanted me to write about my early experiences with my fantasy world but it would be too triggering for me and then with the weekend coming, her not being available, it would be tough to sit through all that stuff. So it stays in my head where it belongs. I’m already having enough anxiety over the anniversary coming up next week. What keeps going through my mind is when I got the phone call from my PCP while I was driving to my therapist’s appointment (I had a car then). I remember having to pull over because I wanted to listen carefully to what he was telling me and not crash into something. After the phone call, I was numb. I had CES again and I was to report to the hospital the following day for surgery. I am glad I had therapy that night because I was close to losing my shit, but it was a weird calm. I knew what to expect this go round because I had been through it before and I had the support of my group. I didn’t know when I would be able to see my therapist again. I was walking when I went to the hospital but wasn’t when I left, not unassisted anyway. I was walking with a walker or a cane. I can’t remember. I just know my left leg was weaker than it was before the surgery. It is what lead to my disability. I know that if I didn’t hurt my back the second go round with this horrid condition, I probably would still be working now. I lost so much after this but I was determined to make as full a recovery as possible. I had to fight to keep my PT appointments, even though they were just telling me to join a gym. A gym wouldn’t help me. I would have to figure things out on my own and fuck that. I wanted someone to show me what I should be doing and how to do it. That is how I learn. I think during my recovery time my therapist started with the phone sessions and it just continued even after I recovered. If I couldn’t make it to where she was, I would have a phone session. It didn’t become a regular thing until I no longer had access to a car to get to her office thirty miles away from me. Both my cars died on me. They were used when I got them and I just didn’t want to put more money into old cars. I do miss the Camaro. That car was sweet. I got my first speeding ticket with that car. I think I still have the violation somewhere in my files. It is paid, of course, but I just wanted to keep it.

There’s a lot of things I wish I knew when I got the second diagnosis of Cauda Equina Syndrome. Like how my bowels and bladder were going to be. They still don’t work the way they did before. I had retention and leakage with my bladder before the second surgery but it got worse after. If I had checked out the AFO before I got CRPS in my ankle, maybe, just maybe I wouldn’t have it today. These are the things that go through my mind. But mostly it was getting that phone call saying that I had CES x 2 that kills me to this day. It’s going to be a rough week.

A letter to bozo

by Midnight Demon, posted in bipolar, Bipolar Disorder, blogging, cauda equina syndrome, CES, Chronic pain, chronic physical pain, depression, mental illness, mood disorders, physical pain

Dear Bozo,

It’s after midnight. I am really tired but I am in a lot of pain. I am feeling depressed because a fellow blogger wants to end her life. I have become good friends with her and it makes me sad that there is nothing I can do for her except be there. I hope she doesn’t hurt herself tonight.

Sox are back in last place. I feel like I am, too. I feel like I am at the bottom of the barrel and I can’t get out. The shit just keeps piling on and I can’t get out from under.  Foot is absolutely killing me despite taking pain meds. I just took some ativan because I got a cramp in my other foot. That is all I need, both feet to be against me. I am such a shit.

I’m supposed to go out tonight with some friends. I always have a good time even though it wears me out. My friends don’t know this.  I have never told them. They are the only friends that I have kept in touch with since my disability and loss of work. I would hate to lose them or be left out of having dinner with them once in a while. It really is the only time I socialize.

I just don’t know what has brought on these feelings of worthlessness and insecurity.  Someone liked my commonalities of suicide and placed it on Reddit. Whatever that is. I have heard about it but don’t know more than that.  I just know I feel like the biggest asshole on the planet right now. If I was suicidal, I’d probably plan something. It gives me comfort knowing I am going to try and end my life. I don’t know why that is.  Maybe because it gives me an option and a way out of this darkness. I am so tired of fighting it. Why do I have to continue to live when I don’t want to?  It’s your fault I’m still here. And I hate you for it right now. I hate this guilt trip you have me bonded into. I don’t want to hurt you, yet you say that I will if I kill myself. I just want the pain to stop. If the pain stopped, both physically and mentally I wouldn’t be thinking of ending my life. I am just a scumbag that doesn’t deserve your care.

I didn’t bring the depression on. Unless the pain meds did, which they could have. Course, I am very tired right now and fear that if I don’t go to sleep soon, Hyde might come out. So I’ll stop here for now.

But before I do, my CES anniversary  is coming up in two weeks. I am feeling anxious about it for some reason.  I keep having the memory of when I was told and having to pull over because I was driving to see you at the time. How I managed to drive without injuring myself I have no clue. My back was pretty bad. I still think if i didn’t get it the 2nd time, I wouldn’t be disabled like I am today. I have huge anger that I don’t know what to do with. The stages of grief I guess. But I refuse to accept this. This should not have happened. Someone should have noticed me walking improperly after all those PT sessions I had. Maybe I should have been in an AFO then. I don’t know.  It’s all hindsight now. And it makes me very angry.

I know I’ll never be normal again, that I think I can live with. But being in pain is not part of the deal. Especially when they are making it harder to get pain meds. If I dont ever get my meds, it will be my death sentence.