Tag: cauda equina syndrome

Fast Car

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

Fast Car

This song has been covered by my favorite male country artist, Luke Comb. I started crying listening to it because it brought back such memories of the past. It made me sad that things are changed and now I will never be able to work or do much else. I am feeling discouraged because of my back pain right now. I tried going to the bathroom again and failed to cath on the first try. I thought I was going to pass out on the toilet as I couldn’t stand for the length of time to pee. It took longer because I couldn’t get it done right. Pissed me off, no pun intended.

I am having a difficult time sleeping again. I can’t seem to settle down. It has been like this all day. I got a bloody headache so made myself a sandwich, which took more spoons than I thought it would. I was already in the negative. I couldn’t have someone else make me the sandwich because there is no one else. I could have heated up some chili but I will have that tomorrow with some tortilla wraps. It is really good with the flour tortillas. I like to make a little burrito out of the chili.

My sister made a beef stew today. It was her first. It was okay. I like my mother’s better. Hers had a weird taste to it. I am not sure what it was, possibly too many bay leaves. There was nothing to the thing as the potatoes had disintegrated and there was hardly any beef. It was all stew which was good with a couple pieces of bread. I always enjoy a stew. I need to buy some chunky soup. I haven’t had them in a long while and the soup is really thick. I like soups that are hearty.

I don’t know if my blogs have been making sense. They have been just a stream of consciousness that I use because I cannot sleep. I would write but my fine motor skills have been affected by the medication Invega. I also been taking PRNs of trilafon, another culprit in the deterioration of my skills. I just feel so shaky lately because of this fatigue. I am not looking forward tomorrow. I know I will be fine but it might take me a few days to recover.

I’ve been in contact with my psych and she wants to have a zoom meeting with me. I will be seeing her face to face for the first time in 9 months. Can’t believe it has been that long. She sent me her information for our appointment and I can’t wait. I just hope there are no glitches. That would really suck. Things have been going okay with the virtual visits for therapy. I haven’t been fully present though so I find it hard to talk about stuff because I don’t know what to talk about. I am not really depressed though I am feeling devastated at times. I cannot believe that my surgeon was so good to help me get better but things will still take time. I have it in my record now that I had a tethered cord. I got to contact my neurologist and let her know about it. I know she wanted to know the outcome of the surgery. Maybe I will do that tomorrow as I don’t have anything else to tell her other than I got a numb butt and genitalia. Price of surgery I guess. I just hope in time feeling comes back. I got to ask the surgeon this. He would know or maybe he wouldn’t know for sure but I think feeling will come back in time because there is no other compression going on. He had to irritate the nerve to get it to go numb. Those nerves are sensitive and take a while to recover, if they recover at all. That is why I am worried and devastated at times. Bladder is still being the same as it has been though I have been voiding more just because I want to see if I could. I do but I don’t empty my bladder fully so that isn’t good. That can lead to infection with residual urine in the tank. I am emptied now and hope that I can sleep. It is just after midnight so I will stop here for now.

post op day 12

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

Post Op day 12

I am still not feeling up for much these days. I find that I am tired and don’t want to do anything. Occupational therapy came today and I hated the whole thing. She was late so I was waiting around for her. Normally I wouldn’t mind but I was tired and just wanted to lay down. Then she was talking about routines and shit and I am like I am still recovering. I am not that far from surgery. Slow the fuck down already. Just because you want to Netflix all day doesn’t mean I do. I actually don’t have a show I watch these days anyways. I still have been trying to get into Picard but it is hard because it brings up memories of the way things used to be. I can’t describe it more than that. I don’t have the words to.

Last night I felt devastated and I am still feeling this way. I am debating on texting my therapist but at the same time I don’t want to say it in a text what I feel because it is too long of a text to explain things. I just attempted to explain it to her but we’ll see. Maybe she has a way of telling me how to deal with this. I don’t talk to her again till next week. That is a long time to go with feeling like this. I hate that this is because of bathroom issues. I feel like things would have been okay if yesterday was a normal thing but instead it is my new normal for now and I don’t know how to deal with it. I know I might recover from this but right now it just feels like it isn’t going to happen. I talked to a friend and she said that after her surgery she was numb and has been since. I didn’t find this comforting.

I got to lay down again. This sitting up and then having to lay down really sucks. I can only seem to type for a little bit before I hit bottom. I hope this is just a temporary thing. I just wish I could speed things along but I can’t. Just got to take it day at a time, sometimes an hour at a time. Last night I found that I couldn’t do two flights of stairs in one day. I am craving a piece of rum cake from my brother in law’s party but I don’t want to tax myself. I would have to go to his apt to get the cake and that is two flights of stairs and I am not ready for that again.

Last night I also did my med box for week. It took me a little bit longer to do even if I was sitting. I am glad it is done so I don’t have to worry about missing meds. I do have a couple of refills at the pharmacy though. I hope to get them tomorrow but it might be Thurs when I might be able to go. Tomorrow is just going to kill me and I know it. I am going to be exhausted. I am exhausted just thinking about it. I just hope I can make phone calls if I need to. I do have a virtual visit with my psychopharm tomorrow. Just hope I am up for it. It is at the cusp at when I should be home again.

CES, again

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

CES, again

I have been having trouble with the bathroom since surgery. My right butt cheek is numb and so is part of my genitalia. I thought it would have recovered by now but tonight after a bowel movement, I couldn’t feel myself at all. I knew I was touching myself but the feeling of wiping was not there. Now I know I have CES (Cauda Equina Syndrome) again and I am not happy about this. It is awful because I don’t know what kind of bowel prep I will need down the road. I am being frank about this because it is my life and now I have to deal with it. It is just complications from surgery and may go away with time but I know it will be painful. It always is. I am not looking forward to the burning pains or the other kind of neuropathic pains you get from nerve injury.

I have had a rough night and I should be sleeping but my brain is awake. I thought writing for a bit might calm it down some as it always does when I am restless. I went downstairs to my sister’s apartment for dinner and birthday cake for my brother in law. Today was his birthday. He was drunk as he was so difficult to handle. He would deny being drunk though if asked. He talked about the Orange Menance being a joke. Like we didn’t know this. It is all over the fucking news every day about him being in office is a joke. I just don’t understand why he still is there and not in jail but then I don’t want the zombie VP to be president because that would be worse.

Tonight’s discussion followed the good and bad of Jesus and the devil. My niece who is a scientist tried to intervene scientifically in the realm of things but alas was not listened to. It just came down to a matter of what your perception of god and jesus and the devil was and how good/bad a person you were. Thankfully the conversation ended there. I was feeling out of it because I still am not feeling good. I feel like shit on a platter. I did too much tonight by staying in the conversation and sitting for as long as I did. I should be out but I am still up because of this nervous energy I have. Mostly concerned that I won’t gain back my feelings again, the numb parts of myself that is new.

I have not dealt with this in some time. I was hoping it wasn’t going to happen. I am 11 days post op so I am still healing. I am just dreading it because I now have to be careful with my stomach. I have to watch what I eat and drink and take for bowel control. I fear that if I should have loose stool, I might not be able to feel it should it get loose loose. I would hate having to wear diapers again because of this. I was feeling fine until all this. Now I feel anxious and timid. I am not depressed though so that is something. I know that if I do lose my control of my bowels it will be a different matter. The loss of dignity that goes there is so great and there is no recovery from it. Some have laughed it off but only after years of dealing with it. This is still new to me and I just cannot fathom laughing this off after pooping my pants. I have a hard time even when I pee my pants, which thankfully hasn’t happened in some time due to the retention. I am still having to cath myself a few times a day. The last few hours I have been able to void on my own so I am taking that as a good sign that cathing might be a thing of the past soon. But it all depends on how things go. I know there are times I still don’t get the urge to pee. I am also waking up in the middle of the night to pee because I drink too much or my bladder just decides 3 am is a good time to use the bathroom. I hate the disruption in the night because my sleep is wonky as it is without the added bladder trips. I take anticholinergic meds at bedtime so they make me thirsty which really sucks when trying to sleep through the night. I need to talk to my urologist about this. Maybe she has some suggestions. I don’t see her until the middle of May when I have to have some testing done again to see if my bladder function has improved after surgery. The uro thinks two months is a good time to gauge it. I hope she is right but I think it will be longer. These nerves take a long time to heal and a two month time frame is too short, in my opinion.

tiring day despite weather being good

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

Tiring day despite weather being good

It is beautiful out today and my energy levels are crap. I had OT/PT come this morning and that wore me out. Then I had to go to the hospital to drop off a specimen for urine culture. I hope this is just my “new” bladder sensation and I don’t have a UTI. Every time I go cath though it feels like I am popping a balloon so something isn’t right. I hope I am just fatigued due to surgery and not an infection. Everything is shut down so I can’t even get a latte at Starbucks.

I am hurting so this blog is not going to be long. I need to lay down. I again didn’t sleep through the night because I woke up and was confused. I wasn’t in horrible pain and I didn’t know if I had to pee as there was no sensation but something woke me up. Maybe it was a bad dream, I don’t know. I waited a half hour and when nothing else happened, decided to cath and sure enough my bladder was full. I had emptied twice before sleeping so I don’t know why it filled so fast. Guess my kidneys are working pretty good. After I cathed, I decided to have a bowl of cereal as I was hungry. I finished off the box of cereal with a big bowl. I was really hungry because I finished it all. I haven’t been eating so good since coming home. I have to remember to eat or I just won’t because appetite isn’t there. I try to have at least one Ensure a day to make sure my calories are over a 1000. My sister made beets last night and I had them for a late lunch. It was so good. I should have warmed them but they tasted ok cold.

While I was at the hospital I sat down on the bench a little harder than I thought and hurt my back hip. I took some pain meds when I came home as I haven’t had any all day yet. I was doing okay pain wise until that snafu. I want a burger so I might order Five Guys tonight. It has been a long time since I had one from them. I will get a vanilla shake, too. It tastes wonderful. I really love the shakes more than the burgers LOL.

I am almost done with my library book I borrowed. I think I will try and finish it tonight. There are only a few more chapters left. I think it will be the only book I have read this year. I don’t think I have a reading challenge going because my brain has been so wonky with the depression and stress of surgery. Hard to believe March is almost over with. Like where has three months gone?? I heard they are keeping schools closed until May. That really sucks. Hope the kids stay at home and are not abused or neglected because of their parents hands. I am sure it is stressful. My mother embarrassed me today and it sucked. She saw that my ear was red so she had a PT look at it but there was nothing wrong with the fucking thing. It gets red sometimes and I don’t know why. Then she used the wrong pronoun to address me which threw the PT/OT off as they couldn’t believe it. I hate it when she does this shit. Makes me so mad but there is nothing I can do about it. Yelling at her isn’t going to change her mind about anything.