Tag: CES

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.

anxiety is building

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

Anxiety is building

There are just four days until I have surgery. I have made lists of things and plan on filling my med box before I go in as I want to have them filled when I come home as I don’t know what state I will be in. still planning on locking away meds as needed. I just got to find or remember where I put the med box. I still don’t know if I will be seeing my therapist this week. Everything seems to be on hold. I don’t know if I will see my psychopharm either. I haven’t heard anything from her office but I am guessing it is the same. If I have a virtual appointment with one, I am going to cancel the other. I don’t want to expose myself while traveling into Boston.

I just lounged around my room today. I showered and then did my meds so I could take them. I made something to eat, boiled eggs and that was all I had to eat today. I just am not very hungry. I got a phone call from the ride saying they will pick me up around noon so I will have to be ready by then. I have no papers to bring with me. I just have my PCP’s card and I think that is all I will need. I tried getting the fax number from my therapist but she might not be in the office. I just have the cell phone number and hope it will be enough if they need to speak to her. I probably will need to fill out a consent form when I am back in the office.

I got word from my urologist that I don’t have an infection and she wants to have an e-visit with me. I never had one so I told her to tell me what to do. I was expecting to hear back today but doesn’t look like it now. Maybe tomorrow.

Saturday Blog 14032020

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

Saturday Blog 14032020

I did a lot this morning when I woke up. I finally made the breakfast burritos and then because I still had energy and wasn’t hurting too much, I baked cookies. I paid for it afterwards though. I couldn’t finish washing the dishes. I did what was there and then I had to stop. My foot was a blaze in pain. I had some giambotta my mother made. It had all vegetables in it, carrots, zucchini, onion, and potatoes. Giambotta is basically a mesh of stuff put together. It was good but she put crushed red pepper in it and for some reason that triggers a migraine for me. It is the second time this has happened. I went up to my room after all the cookies were stored, with a note that said warning eating more than 3 will give you the shits. The cookies have a lot of fiber in them which makes you go to the bathroom. Why I made them. I am trying to have them stay a little longer as I know my sister and nephew like to eat my food. My nephew has been eating my tortilla wraps when I asked him not to. I was only able to make 8 burritos when I wanted to make 12. That is because a package of tortillas only has 8 in it. I don’t know what he uses them for but fuck. I pay for them not him.

I sent my therapist a pic of the burritos. I was going to send one of the cookies but decided not to. I won’t be able to share with her anyways because I may not see her. I still have no word on anything. My uro hasn’t been in touch with me over my results of the urine culture so not sure if she is going to treat it or not. I just sent her a message so maybe I will hear from her by Monday. I feel like I do have a UTI so I hope she does treat it. Would hate to have bugs in my urine pre-op. but time is getting close to how long I should be treated for. At this rate, just three days is what I can expect.

I think I packed everything I need. I just need to find a micro USB cord. I thought I had it in my bag but it was just another Type C wire. The micro USB that I have been using is 10 feet. I hate to bring that in the hospital but will if need be. I got a 6 ft wire for Type C, which is for my phone. I will bring both and see what happens.

I slept most of the afternoon to take away the migraine and the exhaustion of cooking and baking. My foot acted up a little bit but not overpoweringly. Sleep definitely helped. Now I am wondering if I will be up all night. I was late in taking my night meds. Took them an hour and half late because I was sleeping. I shut the alarm off and went back to sleep. Bladder woke me up. I don’t remember the last time I peed so it had to be a while. I hate that I have to keep track of this now. Bowels I always kept track of now the bladder too. It is just too much. I have to cath at least 5 times a day. Today every time I went, I cathed. I think I just voided once on my own, only because the urge was strong but it took a while to get going. I hate that. I hate that I am still retaining despite being on medication for retention. But I guess if I wasn’t on the meds, I probably wouldn’t be going period. I found that out when I was in the hospital and they didn’t have my medicine I take. I plan on taking the meds with me. Speaking of which, I might as well put them in my bag after I do my meds for the week. I will make them full so when I am home, I don’t have to make them up again. I can just bring them downstairs. I do have to lock away my meds so no one gets into it. I just rather put them locked away than be sorry.