Tag: cauda equina syndrome

I’m screwed

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

I’m screwed

I had the appointment with the physiatrist today. He was a good guy, with a sense of humor and everything. We spent more than hour going over what to do with my ankle. According to the diagnosis he gave me for physical therapy, nearly every tendon in my poor ankle is inflamed. I’m screwed. I am happy though that he didn’t recommend a steroid injection. He wants to give physical therapy and a new medicine a try. The new medicine has some risks for someone like me. He warned me that it could make my incontinence worse. Fun. I am really hurting after all the poking and prodding. Hopefully, physical therapy will help me walk correctly. I do still have to wear an AFO (ankle foot orthotic), but he is recommending that I get a hinged one so that my ankle moves more freely. But right now, I am to keep my ankle as immobile as possible. He wanted me in a cast but I wouldn’t have it. If I go out, I will use the walking boot that I have. I don’t like it because it causes my hip to go out on me, but if it helps my ankle, I am for it. But there is no easy fix for my ankle. The doc hopes that PT can help stabilize it but with the nerve damage, there is no telling if that can happen. In the mean time, I am just going to go through the motions and see where they lead. If physical therapy proves to be too much for me, I am not going to go ahead with it and will say something. I am just glad the doc didn’t just offer me injections and that was it. But I still feel screwed that my ankle is so messed up when I really haven’t done anything major to cause it to be fucked up.

Right now I am feeling very sad. I am glad I know what is wrong with me (not like I didn’t) but going for physical therapy is going to be hard. I never know if I am going to get a gung ho therapist that thinks that if I don’t listen to him I won’t get better. I need someone that is willing to work with me and if I don’t have that, I am walking. Tough shit. I will find someone I can work with but it takes so much out of me, both mentally and physically. I know my ankle is messed up because I have been partly using it wrong, and partly because it is weak because of cauda equina syndrome. I don’t know what the hinged AFO is going to be like. I just hope it fits in my sneaker like my current one does.

I am in agony. Ankle pain just jumped to 12. I knew it would after all the poking and prodding today, plus walking the blocks to and from the various points I had to go to get to my appointment. I just put a NSAID gel on it to knock off some points. I hope it helps.

I really wish I had someone to talk to right now but there is no one. I really would love to talk to my psychiatrist but she is not available until Monday. I have emailed her all week and have not gotten a single response from her so I don’t think she is getting email where she is. She said she was at a conference. Least now that I know that I have a good doctor, I can cancel the appointment with the surgical fellow for the ankle that I had scheduled for Friday. With any luck, I might be able to see my psychiatrist. That would be wonderful. I miss her as it has been more than three weeks since our last appointment. I had to cancel our last appointment because of pain. She understood but it has been a nightmare trying to reschedule because she is so booked up. And we have been doing this via email so it is frustrating when I don’t get a response within a day or two. I do need her to refill one of my meds. And unfortunately, it is one where I need a hard copy, she can’t fax it.

My therapy schedule is also messed up next week because my therapist needs Tuesday off. Just when I thought things were going to be back to normal, they get fucked up again. I don’t talk with my therapist until Wednesday but I am going to see if we can do a check in on Monday. Hearing her voice some how calms me and lets me know that someone cares. I also need to deal with my father next week which isn’t going to be pleasant. I really wish I didn’t have to deal with him, my blood pressure would normalize for once, though it was good today at the doctor’s office. My pulse was still high. I can never get a resting pulse to be close to normal. It is always in the 80’s or higher.

having a crappy day

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

Having a crappy day

I was up for almost 20 hours yesterday. I just could not go to sleep. Then I wake up around 0630 so I got 5.5 hours of sleep. Lovely. I had my normal bathroom movements, except this one really hurt me. Sometimes if the stool is hard it aggravates a nerve and I am in pain for hours. So to avoid that I thought I would take some nerve pain medicine and hopefully it would make me sleepy enough to go back to sleep. It did. Though I woke up with a vicious cramp in my foot. It’s raining today so I decided not to go out and asked my mother to pick up my prescription. She did so now I don’t have to worry about it for another month.

When I got up I decided to play my games. No big deal. I felt like I had gas so I let loose. BIG mistake. It was all fucking stool. I couldn’t believe it and I am still shocked and upset about it. Luckily, it didn’t go through my pants and onto my sheets because I would have been devastated. I went downstairs to the bathroom and I shit some more while I was trying to clean myself. This is the third day that I have pooped my pants and I am very upset about it. I would tell my doctors but they wouldn’t understand. I decided to shower after I cleaned myself the best I could. Then I had a decision to make about my underwear. They were full of crap and I really didn’t want to wash them but I did. My first thought was to throw them out but I was afraid that the smell might arouse suspicion and I didn’t want to get caught with literally dirty underwear. Oh the joys of CES. I took a shower after washing my clothes in the sink. Shower felt nice and I was able to fully wash everything and get the shit off me.

For the rest of the day, I have been terrified of farting. I get gas regularly and the pain that builds up if I don’t let loose kills me. I don’t know what I am going to do going forward. I wrote to my group about it and there is a guy that uses protection so I am going to find out what that is so I can use it too. I can’t be too careful when it comes to the bowels. I have gotten used to leaking but I still have not gotten used to crapping myself. It takes a little bit of my self esteem every time I have an accident.

My day was shot after this as I didn’t want to risk losing my bowels in public. Part of the reason I was still home was because my foot cramped up just prior to my waking up around 11. I so wanted to go to Starbucks today. But it just wasn’t in the works after my pooping incident. Thankfully, my therapist called me within a half hour of this happening or who knows what I would have done to myself. I really was contemplating drinking gin until I passed out. Turns out I didn’t need the gin after all as I was able to go back to sleep around 2. I needed the rest as the whole experience just wiped me out. I am so glad my mother wasn’t home. It would have been horrible for her to see me like this.

I made a lot of online purchases today and paid my bills. Now I am broke until my next monthly paycheck. But the stuff I purchased online was stuff that I needed, like diapers and batteries, and my cereal. You can’t go wrong with less than 4 dollars for a box of shredded wheat. I know that the grocery story sells it for at least 5 bucks or more for the big box. I also got a couple of new books. Those will be my writing rewards for when I actually write for my book again.

My father canceled his cardiology appointment for tomorrow. I have to be the asshole to actually call the office and tell them he won’t be coming in. So all the stressing over my therapist’s time was for nothing. I texted her asking her if the time was still available to call me. 10 bucks says she no longer has it available.

books and pressures

by Midnight Demon, posted in blogging, chronic physical pain, depression, mood disorders

Had a hectic day today. I walked 0.8 miles and I feel pretty good about it, though my ankle disagrees. I have been up since 5. I made breakfast, showered, and had coffee all before 8 am. Which left me an hour and half to play my game and decide what to wear. It was cold and rainy today so I wanted to be warm but not too warm because I knew I would be walking. I hate sweating. Luckily for me it stayed cool and I didn’t overheat.

I think one of my upcoming blogs I am going to do a book review on “Managing Suicidal Risk” by David Jobes. It has been a while since I last read it and by chance I found it today while looking for something else. It is my autographed copy of the book. I will send the link to the author as well as post it on Amazon. It won’t be too long of a blog but will describe the essence of what it is to manage suicidality.

I will be ordering two books tomorrow when I get paid. They are books I normally wouldn’t purchase but I need a change of what I am reading. I still haven’t gotten through the book on the civil war or Andrew Solomon’s book, “Far From The Tree” (FFTT). Both books are lengthy, over 500 pages. In fact, I have a little over 500 pages to read for the civil war book. He just keeps dragging out the year 1861. And I am not the type to skip pages so I am plugging along as much as I can without getting annoyed. It took me 276 pages to get to the civil war alone!! If you want to read this book that discusses the economic ways of the war, Battle Cry for Freedom is for you.

FFTT I haven’t touched in almost two months, since I left the hospital. It made for good reading for nights when I couldn’t sleep and because I had a single, I could keep the light on until my meds kicked in or I got sleepy enough to go to bed. It is a very interesting book about disabilities in children and how their parents deal with it. Mostly I am reading about the families that are well off enough to have their child go through expensive treatments. He doesn’t seem to talk about those families that are no so well off and struggle to make ends meet. However he does talk about the organizations for the different disabilities he discusses.

Overall, today has been a productive day for me. I hope that tomorrow I am not too sore because I really want to go to Starbucks and work on my coauthored book. I think if I get out of the house a little bit every day, even if I don’t want to, it will help me in the long run. Trick is ACTUALLY getting out of the house because it is so easy for me to roll over and go back to sleep. But I have a few errands tomorrow so I’d like to leave the house and do it rather than stay at home with the laptop.

For two days straight now, I have crapped my pants. I am so disgusted because I thought I got everything after my BM today. But nope. I must have passed gas or something to make the stool come out. I am purchasing diapers online so I don’t have to worry about the funny looks in the store. Turns out that if I buy them online and spend $25, I get free shipping. So I am throwing in some batteries too. We need “real” batteries, like Duracell, for our carbon monoxide detector. My mother refuses to buy the good kind and so buys the cheap brand. We have had to replace the batteries twice so far this year, over the course of 6 months! It is annoying!! I am hoping on days that I am out of the house for more than four hours, I can have protection and save my underwear. Luckily, I didn’t leak today or I would really be hitting the gin.

I came home and thought I was “relaxed” as I haven’t done anything strenuous in the first hour I was home so I took my blood pressure to see what it was. Not a good reading, 145/100. I am upset with myself. I will be monitoring it from now on because yesterday at my doctor’s appointment it was high. I thought I had my blood pressure under control but I guess I don’t. Fucking pisses me off that I have another thing to worry about because it’s not like my body is going to tell me I am running high. I have to use a machine to do that. Now I really have to try and lose weight so I can bring my pressure down some. I wish I could decrease my stress levels but dealing with my father is not going to do it, especially if he is going to have surgery in the upcoming weeks. So I have to monitor my pressure to keep myself in check. If it gets any higher, I will have to inform my PCP. I can’t be letting it skyrocket.

Saturday Blog 12

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

Saturday Blog 12

There were a couple of blow out games in college football today. One was the embarrassing Texas A&M vs. Bama, 59-0. Second game was with Ohio State 53-17. I am more of an Ohio State fan than I am of Bama. But I couldn’t believe these teams going in there scoring and just beating the crap out of the other team. I would have loved to have watched it but I like watching the scores on Twitter. Nebraska will be starting shortly, but they are on the BTN tv and I don’t have that channel. So back to Twitter again. I hope Ameer Abdullah gets his 122 yards to make 1,000 yards rushing. This guy is a beast!!

Today has been another exhausting pain day. I woke up around 7ish and then was able to go back to sleep a few hours later and that sucked whatever energy I had out the window. I only took one pain pill today because although I have been in pain, I knew this pain wasn’t going to be helped by opioids. It sucks and the only thing that would help would probably be gabapentin but that would seriously knock me on my ass.

I hate it when there is nothing that I can take for my pain. I am going to take the gabapentin and hope that I don’t wake up at 3 in the morning. I will be taking my night time meds soon. I just wish I knew what was causing this pain. I have literally been in bed for most of the day because I have been sleeping so I don’t understand why I am in pain. Throw the whole tendonitis theory out the window. Laying down doesn’t seem to help it and neither does standing on it so I don’t know what to do. The pain is quite intense throbbing starting from the middle of the side of my leg down into my foot. It is annoying as all hell.

I really wanted to go to the store today to get half and half so I could make coffee. I miss having it at home. But I can’t drink the coffee black and I can’t drink it with milk. I will just be wasting it. And it is not like I am buying cheap coffee to be thrown down the drain.

The side effects of the pink pill are in effect. I can feel the spasticity in my forearms again. So I just took a pill to counteract it. I hate that these side effects are happening more frequently than they have before. I want to talk to my psychiatrist about this but scheduling an appointment has been difficult. We are trying to shoot for Halloween but I haven’t heard back from her. The thing about the spasticity is that every time it happens, I think it is a MS flare up or something. I know I don’t have MS but people with CES can mimic MS symptoms. I don’t have any weakness though, least not that I know of, other than in my damn foot. It’s just something I like to discuss with her to calm my fears about MS.

It’s difficult being on this medication but I need to be on it to keep the voices at bay and the paranoia and delusional thinking that can happen. I have been taking it every other day to try to keep away the side effects but that doesn’t seem to be helping. And when I get stressed for some reason, the psychosis is worse. I am not stressed at the moment or I think I would be drinking more. The gabapentin that I took really zoned me out for a few hours and now it is hitting me again with dizziness and fatigue. I need to lay down so I will stop here.