Tag: cauda equina syndrome

increased pain levels, YAY…NOT

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

I had a long day today. I didn’t sleep good. I hope that I sleep good tonight because I have a big day tomorrow. I am not looking forward to it. It’s another day with my father and I know it is going to stress me out like it normally does. And the docs wonder why I have high blood pressure! Speaking of those idiots, they haven’t gotten back to me about whether I should be on three medications for it or not. I haven’t gotten the 3rd filled because my pharmacy doesn’t list it as ready. I rather not take it.

I had a stressful therapy session. It was complete with Jekyll coming in and out. I think he is a little guy as he was scared to come out, though he was really angry. Or maybe he is just a part of me that is angry and I won’t let it out. Either way, my anger never was expressed. A lot of memories got stirred. I wrote about it in a password protected blog. It is for my therapist only. I hate having to keep writing stuff in blog format and having her read it that way. If she had email, it would be so much simpler. But no. She refuses so I have to blog things to have her read it. Only other alternative is the old paper and pen letter via snail mail. I have done this and continue to do it. Though, I don’t know who benefits from it, me or her.

My mood was all over the place today. I still am exhausted from not sleeping good. I will be going to bed shortly when I finish this blog and I hope that I do sleep. I have been playing my game on and off since 6 am. I am going to have something to eat and then I am going to bed. I don’t know why I get hungry when I take my night meds. If I don’t eat, I am thinking or dreaming about food. I think I will have a bowl of cinnamon toast crunch cereal. I haven’t had that in a while.

I had my coffee today. I took a shower. I even brushed my teeth. Not in that order, but it happened. I hope that I can wake up early tomorrow and eat something good as I know last time I didn’t eat for my father’s appointment, I got cranky and wicked irritable. Then I felt dizzy when I got home. Not good! If I have time tomorrow, I will try and get to Walgreens and buy some pop tarts to take with me should hunger strikes. I will need it. I also have to remember to take my BP meds because I forgot to take them today. I hate taking morning meds for that reason. It was easier in the hospital because they nag you until you take them but when you are home, you don’t have that nag. I should take it when I remember to, but this morning my ankle was hurting me and I really didn’t feel like getting out of bed.

For three days now, I have been experiencing the same pain in my ankle. I think I might have done something to it, but what I am not sure. It is annoying because I can’t bear weight on it. Taking a shower tonight really aggravated it. Last night I had to take extra duty pain meds to quiet it down. But now the pain has shot up again. It is driving me insane. I don’t see my doc until next week. I am going to have him change the order to taking two pills twice a day. That should give me enough coverage that I need, because one pill isn’t doing squat!

I just don’t know anymore

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

I just don’t know anymore

I have been in pain for more than 24 hrs now so if this is a little squirrely, that is why. I just cannot take the pain anymore. It is driving me absolutely insane. I spent the last hour or so writing in my journal things that shouldn’t be mentioned in the blog (stuff my therapist wanted me to write). I felt so ashamed afterwards. I was stuck with images in my head of the events that happened to me. I just want to be dead again. I know it has been at least a month since I last felt this way. Certainly was around the time of Robin Williams’s death. I felt like it was my turn. Well, dammit, why the hell not? I am so sick of being in pain.

I have tried to control my pain but my meds seem to be ineffective. I think I might have to take the stronger meds to break the cycle. But I don’t want to because the last time I took that drug, Jekyll appeared. I am wicked tired and all I want to do is sleep and I know that if I take this drug, chances are that Jekyll will come out. And god only knows what he will write. I find it odd that I have two “alters” and they are both male.

I didn’t take a shower today. I got a migraine and then things kind of went downhill after that. My pain worsened to what it is now. It is throbbing like a SOB and stabbing at the same time. It hurts right at the joint where my foot and ankle bone meet. That area is the most painful right now. I just want relief. I have contemplated taking the handful of pain pills that I have left. It will really suck if I take them because then I will have NOTHING. I know I am going to run out of my meds before the 28th of this month. My doc is supposed to write a 28 day supply but he wrote it for 30 days. Big help, not! I don’t know why I told him I needed less pills. But then, things were going well and I wasn’t in pain as much. The past few months have been awful and I keep meaning to tell him I need more pills because it just isn’t enough but I keep forgetting. Plus I am scared that he will say no. I doubt it, but you never know. I bet if my pain were under control, my blood pressure would be too.

I keep fighting sleep. I know that if I go to bed now, chances are good that I will wake up around midnight or 1 or 2 in the morning. I took my meds so I don’t have to get up again but I might have to go to the bathroom. I drank a lot of water at dinner because I am dehydrated. I didn’t eat too much, just had breaded cauliflower for dinner. I wasn’t that hungry. Which is good because I feel bloated.

My mother just struggled to get up the stairs. Her life would be so much better if she would take something consistently for her pain. But nope. Won’t even take a damn aspirin. Pisses me off because she always complains she is in pain. I refuse to give her sympathy because I know there are meds out there she can take but she won’t so there.

I have the ceiling fan on despite it being cool outside. I have been having hot flashes for most of the day. It is only about 70 degrees in my room so I don’t know why I have to put the fan on but I am hot and I hate being hot. I think it is because of the damn pain I am in. 24 hours. I didn’t even do too much yesterday so I don’t know why I am in so much damn pain. But I guess walking is my downfall. And my sister thinks I will be able to walk a dog. Please. I can barely get to where I need to go without hurting myself and you want me to take care of an animal?? NO. Not happening. Get a cat. I will clean the litter box twice a day. That I can do!

I don’t know why I am in so much damn pain. It’s not like I did anything today. I didn’t go up and down the stairs too much, but maybe I did. I never know what is minimal and what is a lot. My body doesn’t bother to tell me until it has surpassed its limit and then tells me the next day or later that night when I want to fucking sleep. It is terrible. Normal ankle movement should not bring you such pain!!!

The only thing keeping me sane right now is listening to music. I need that muse in my head because without it, I think I might do something drastic.

cup of coffee

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

Cup of coffee

I was up for at least 20 hours yesterday. Pain was the chief factor in keeping me up. Other than the ghosts in my head. Talking about stuff stirred things up. My goofy therapist thinks that I should write about it but there is really nothing to write about. What happened, happened and writing about it is not going to change the facts of the matter. I don’t think I will ever get closure to what I am feeling but oh well. Such is life.

I made breakfast this morning, pancakes. I didn’t think it was going to exhaust me but it did. It also flared up my sciatica. The temp is dropping so of course my back is acting up. But I really wanted a cup of coffee but I couldn’t make it. I was in too much pain. I waited till after therapy to make it. I used my last K-cup of Starbucks coffee. I just hope I will have at least 10 extra bucks next week to get another pack. Coffee is very good made on the Kuerig, though it is stronger than the coffee at Starbucks. It just is brewed that way.

Been listening to Pandora more than my MP3 player. The nice part of listening to Pandora is you don’t have to buy the songs you are hearing, unless you want it really bad. But it’s a nice alternative to my 200 songs that I have been hearing since last year. Those songs are about 15 hours of play time, though the shuffle doesn’t work right. And today the player just stopped working so I decided to listen to Pandora instead of turning the app back on. It is so aggravating that it will stop playing in the middle of a song.

I am not planning on going anywhere today. I am feeling really down since my therapy appointment. I need to shower and I really don’t feel like it. Thursday when I have my appointment with my father, I have decided to wear a diaper and I am not looking forward to it. The only bright side of it is that I will be dry. Thing is, I showered yesterday so I don’t feel like I should shower today. It is going to take every ounce of my being to do this task. I just am not looking forward to it. And I know it will suck all the energy from me. I really don’t remember the last time I took a shower that woke me up rather than tired me out. Obviously before I was in chronic pain. I could just cry right now for some odd reason. I just am so tired of being tired and in pain all the fricken time. But the coffee I had did its job and I feel a little more awake than I was before.

My psychiatrist has nicknamed the new part, Jekyll. I think it came out while I was in therapy today. I almost blurted out “I hate you” while I was on the phone with my therapist. It just came out of no where. I just got really angry but I didn’t show my anger. I kind of stepped back and talked really low. It was weird. Last night I finished reading the book of Jekyll and Hyde. It was very strange but enlightening. I loved the author’s use of language. It was a very good book. I don’t know that it has anything to do with dissociation, but the fact that evil could exist between one man and two parts is incredible. Hyde is like my evil part. He holds the suicidality that I hold close to my chest. Jekyll is the part I am clueless about. Though the part in the book is that Jekyll is benevolent and charitable, my part is angry, far from being kind. He holds hatred and disdain.

I do wonder if this part is what has been stirring up the memories I have been experiencing. It just is making feel really uneasy and I don’t want to deal with them. I rather they just stay where ever they were before I remembered them. They are not flashbacks, thank goodness. But the images I am seeing might as well be intrusive thoughts and I don’t like what I am seeing. And all of this started because I drank a cup of coffee that woke up my consciousness instead just taking a nap.

Don’t dream it’s over

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

Don’t dream it’s over

I heard this song today and am reminded that despite a long road to recovery, I am still stuck with the condition known as Cauda Equina Syndrome (CES). Today I talked a lot about it in my interview with the 1st years of medical school. There were like 5 or 6 students and three physicians in the room, one of whom was the person that interviewed me. He knew nothing about CES as he didn’t ask me one red flag symptom. He was an older gentleman so I am sure that he never heard of such a syndrome before. My psychiatrist was grateful I brought it to the students. She said she owes me one. But I don’t really know what that means. I just laughed because it was fun doing the interview.

My therapist read the last blog post that I sent her. She said that I summed up my traumatic experiences all in one paragraph. This left me feeling like “what is she talking about” so I had to read it. I always feel like my writing is cathartic so once the words are in a word doc or a piece of paper, they quickly lose their power in my memory banks. The paragraph was powerful and I couldn’t believe I wrote what I did. It made me wonder if I am ready to face the trauma I have endured over my lifetime, just one piece of it anyways. It is something that I have not discussed in great detail, not even with my therapist. But there is a song that keeps reminding me of what I went through and so it is on my mind a little more these days.

I have a beef with my doctor’s office. I saw my PCP’s Nurse Practitioner (NP) for a blood pressure check. My blood pressure is still in prehypertensive range. Not good. So instead of playing with the new blood pressure med I am on, she decides to add another medication. WTF. She was almost a half hour late so I couldn’t argue as I had to meet with my psychiatrist, and even my psych was like why am I being put on a third medication for the same condition?? I emailed my doc’s office to sort this out. I am not going to take it because it also acts as a diuretic, something I don’t need to be on. I already have issues with my bladder leaking and me being on something that is supposed to make the kidneys work better just isn’t going to fly with me. I also said that in the email, about the leaking piece, not about it not flying with me. I have enough problems and don’t really want to start wearing pads or diapers. So far I have been lucky to avoid them, but I think on days that I am going to be out more than a few hours, I might have to consider wearing them. I would use pads but they just don’t fit in boxers. I really feel bad for men who have to use tighty whities for pads. Least that is what I think they would have to wear. But I hate them as much as some men do.

I was talking to a friend today about a CES issue. She didn’t reassure me and said that I should talk to my neurologist about it. I haven’t seen her in over a year. And this issue I rather not be apart of my medical record. So now I am conflicted on what to do. I don’t even know if going to my neuro will help me with the issue. Course the easy thing is to stop doing what I am doing to cause the issue and problem solved! But I don’t know if I am having more nerve damage or not by ignoring the issue. What worries me is that I have a disc that is touching the nerve root of my issue. It isn’t compressing the nerve root so no one thinks I should have surgery. Although I am not advocating for more surgery as I most likely will need a fusion, I think that might be why I am having my issue. Either that or my nerves have suddenly have become awakened and now I just got to deal with them. Either way, it doesn’t look promising to me and it is an especially embarrassing topic for me. If I do see my neuro, at least I won’t have to mail her my book. I could just hand it to her!

The thing about my neuro is that she is great and all but her office staff sucks like yesterday’s garbage. Making an appointment is always a hassle, getting through to the office is always a hassle and then if I don’t have the copay, they cancel my appointment. Last time, they told me the wrong day of my appointment and I got charged for it. I have not paid it because they screwed up, not me. If they didn’t change the original appointment to begin with, none of this would have happened.
It has been a month now that I have been on an antidepressant. Since that time, my suicidality has decreased dramatically. I might not be euphoric, but I am doing okay. I don’t have mood swings like I used to. My sleep is still wonky but it’s better than it has been. The only sucky thing is that no matter what time I go to bed, I am always up before six. And on days like today where I had to be all over the hospital between my two appointments, it sucks. Even though I worked there for fourteen years, I goofed and made a wrong turn, thinking it would take me to the building I needed to go. NOPE. No access from the 2nd floor. It sucked because I then had to walk back to where I came from to go outside to get to the building I needed to be in. Lot of walking today. And my ankle is thanking me, oh so kindly. NOT.