Tag: complex regional pain syndrome

can’t sleep so I have been up since 0530

by Midnight Demon, posted in blogging, cauda equina syndrome, CES, chronic physical pain, CRPS, depression, disability

Can’t sleep so I am up at 0530

I feel like I have been up every fricken hour after having weird dreams. I gave up at 530 and at 6 had some coffee and a banana bread biscuit from Belvita. Nothing is going on on Twitter so I decided to write.

I honestly think the Flomax I was taking was causing urges to be strong. Since discontinuing it, my urges have been way less than they are and that makes cathing a whole lot easier. I haven’t experienced any bladder spasms so taking the tolterodine was kind of useless.

Yesterday afternoon I had a bowel explosion. Shit was everywhere and I got it on my hands while wiping. It was very soft shit so I couldn’t hold it in. After I cleaned my underwear and the toilet, I took a shower to clean myself to make sure I was clean. I felt so awful after this happened. I hate when it happens. I have no control of my stool once it reaches the rectum and enters my anal canal. I just don’t have the function of holding it in. I have nerve damage to that area. I have been trying to be gentle with myself. I colored a difficult piece of art yesterday after the accident. It took me a couple of hours to sort the colors out. And then it took me a couple of hours to color. It took my mind off my troubles as I was thinking about what color to use next. My finger got pencil coloring on it and I felt like a painter doing work.

Today is supposed to be sunny and hot. I plan on going to the mailbox early to mail my ballot. Every time I get the mail in ballot I have to do it like three times before it is accepted. The first time I didn’t receive the ballot, just the envelope that had to be signed. The second time I received the white envelope and the ballot nothing more. Third time I received the yellow envelope and white envelope with a note saying that my ballot had to be in the yellow envelope and signed. Hopefully this will be the last of it as the election is coming up soon.

I need to shave my head and face today. I have stubble that is turning into a beard. I have finally mastered the goatee so I need to shave around it. I want to use the electric shaver but I need the mirror and I don’t know where it is at the moment. I like that I can shave in my bed. I can’t do my head with the shaver because it has hair dust that stays and I will have to wash my head afterwards. Besides, I get a closer shave with a razor than the shaver. I might use my five blade razor today. Just hope I don’t nick myself with it like I have in the past.

I bought some new books that I want to read about medicine history and the enslaved people it experimented on. The book got delivered but I don’t remember where I put it. I think it is in the unopened Amazon box. Maybe I will read today rather than doom scroll on Twitter. It has been a while since I read a book. I am still working on the MLB book. It is a big book with over 500 pages. I have learned a lot but I don’t think I can write the book I want to using this book as a guide. It doesn’t give me the right information I am looking for. I don’t know where I can find it. Seems teams names changed every year before 1901 as owners changed hands. Some teams were dropped off because they didn’t collect enough tickets to be worthy of playing so their players were switched to other teams that did collect enough tickets. It was kind of confusing at first but I think I got it after I read a little more. I have a reading challenge going on like I do every year. My goal for this year is to read at least 12 books. I tried to do the 20 books but always came up short. I figured 12 would be one book a month but I haven’t finished any book since Trauma and Recovery by Judith Herman. I have read 6 books so far so I only have 6 books left. Should be easy if I get off Twitter enough. I am a quarter way through the MLB book. I also bought Jim Acosta’s book, Enemy of the People. I can’t wait to start that one.

I wrote to my psychiatrist to tell him how awful I feel about my bowel and bladder issues and how I don’t think my therapist is going to be validating me on them. I feel so alone about it. Since stopping the medication, I have to keep myself on a schedule or otherwise I will forget to pee because I don’t have the urge. Also right now having a full bladder causes me abdominal pain because of the hysterectomy. I still have the stitches in me. I tried taking it off but it wouldn’t come off so I just left it. I am entering my third week post op. I don’t know when the stitches will fall off. I need to ask the nurse that when I talk to her hopefully tomorrow.

I bought some marigold seeds that I want to plant. I had bought some soil and terracotta pots for a seedling my cousin gave me but my sister was able to plant it in her pot so my pots have been sitting on the porch all this time. I might give it a go sometime this week. Marigolds are my favorite type of flower.

Sunday Blog 05092021

by Midnight Demon, posted in baseball, blogging, chronic physical pain, CRPS, depression

Sunday blog 05092021

I woke up in the middle of the night. I had to pee and I was hungry. There were no delivery places with delivery people so I couldn’t order McDs on UberEats. I had a bowl of cereal instead. My mother was in the bathroom when I went to the kitchen. She said she knew I was going to come down. I usually do at 2 in the morning. I slept till my med alarm went off. I shut it and then went back to sleep to dream about writing a paper and having it perfect for the professor. In the mean time I was painting with a machine in people’s houses for $20. So fucking weird.

Everyone missed me at the wedding. I missed them too. I wish I had the confidence to cath in public but with me still having a chest and facial hair, I feel awkward using either a male or female bathroom. I just don’t feel like I fit. And I have to be in a stall so I can take my pants down to cath. It was kind of good I didn’t go because I was in a lot of pain last night. It was hard to get comfortable. I tried laying down and being on the computer but that meant I either had to type with one hand or not at all.

I had my coffee when I got up around 1. I had some mandarin oranges and the combination has upset my stomach. After I had my coffee, I took a walk to the pharmacy to pick up my meds. My mother wanted sweet n low but they no longer sell it. I bought her a case of it but it is not the packets, just a box of the sugar. I told her to get a bowl. I don’t understand why she can’t do that. It is better for the environment. I came home exhausted. I checked the score of the game and the Sox are down by 3 runs. It is a bullpen game as the starting pitcher was placed on the Covid IL list today. I am not sure if he tested positive or if he was ill. That makes nine players on the Covid IL. I am not too worried about the game as there is plenty of baseball left to play and they have comeback from behind before. Long as the bullpen doesn’t totally collapse we should be ok.

Only appointment I need to go out for this week is for dermatology. I got some moles that need looking at. I haven’t decided if I am going to go by T or not. I would have to take the shuttle to the building because it is kind of a walk from the station. In my younger days I could handle it but not these days. I just can’t walk that far anymore. Sucks.

I need to take some Miralax soon. It has been a few days since I last pooped. I hate getting backed up because it causes me to strain and it hurts right now with me recovering from surgery. I won’t be in the clear for another 4-6 weeks. It is another thing I need to keep track of. I am so tired of keeping track of my bodily functions. There is no rest from it. I get no break. And it is all because of nerve damage due to a tethered cord and compressed nerves from discs. Makes me depressed when I think about it. I will talk about it with my therapist when I see her Tues. Hard part is she doesn’t understand most of what I go through. My former therapist at least had some empathy for me for it. I don’t get validated from her like I did the other therapist on this stuff.

decisions made

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

Decisions made

I have decided not to go to my cousin’s wedding tomorrow. I feel like it will just be stressful and if I am in pain then I will be a grump. I am two weeks post op from a hysterectomy. I think it is too soon to be going. I also am stressed about the whole cathing situation. I have to go every three hours or so and I would rather do it in my own bathroom rather than a public restroom. I also worry about Covid because chances are we won’t be wearing masks and there will be 20 year olds and 30 year olds at the wedding. I don’t know how many people there are but there is at least 50 people minimum.

I had a difficult night sleeping. I was up every few hours. I finally gave up around 0630. I thought I would have the kitchen to myself but my mother woke up and she made her breakfast. I just had my coffee with biscuits. I wanted to make the quiche but I didn’t feel up to it. I might have it later this morning when I have my second cup of coffee.

I am feeling really tired. I want to lie down and nap but my surgeon’s nurse is supposed to call me sometime in the morning so I need to be up. I want to ask her if any nerves were cut during surgery. That is important for me to know. And also when the stitches will fall off. I still have them and they seem stuck in place. I tried pulling them out and they wouldn’t give. I have a stitch in my belly button that is annoying because it is pointy. It like pricks my finger when I try and clean it out. I still have discharge so I won’t be changing to boxers like I hoped to do. I might wear them during the day and then change to women’s underwear for the evening so I can wear a pad. Only think is, the discharge is unpredictable so I might get the stuff on my boxers. That will suck. I am going to wait another few days before changing things up.

I bought a graduated water bottle so I would know how much I drink during the day. I still have no used it yet. I plan to wash it today and fill it with either water or Gatorade. I haven’t decided which I am going to use. I want to track how much I drink so I know when I cath if the output is the same. Right now drinking Gatorade I am just estimating how much I drink.

I have a feeling when I talk to the uro NP she is going to have me measure my urine when I go to see how much I am outputting. That isn’t going to be fun. I understand the reasoning behind it but it is just a pain in the ass. I might have to go in to get a bladder scan after I cath to see if there is anything left. It is the only way of knowing if I am truly empty. I hate my life right now as it just seems to revolve around bladder issues. It is always in the forefront of my mind.

resting today

by Midnight Demon, posted in blogging, CRPS, depression

Resting today

I woke up around 330 this morning to pee and it took a while to get back to sleep. My med alarm went off and I had to pee again. I took my meds after and then went back to sleep. The surgeon’s nurse called to check in with me around noon time and I got up for coffee after we spoke. It was raining so I decided to stay in. I was going to go out to get some half and half but decided to get it delivered with some other stuff.

I just plan on resting today. I had to give myself the T shot today. My left leg was being cranky so I opted to give my right another shot. I also plan on brushing my teeth and shaving my head again. I also need to shower. It will be later this afternoon when I am up for it. I am too tired to do it right now. I just want to sleep.

Pain is a little less today. I was having some mega pain earlier but I think it was because my bladder was full and I had to have a BM. I felt better afterwards. I didn’t cath after I voided. I was going to drink coffee so I know I am going to go again soon. I will cath then. The discharge is becoming less. I probably will be back to boxers by the weekend. Saturday I have a wedding to go to. I am kind of nervous about it. I have to go in my closet and find a dress shirt. The one I ordered is too tight for my liking. I might wear short sleeves. I really want to wear my burgundy red shirt with the tie I bought and black pants.

I haven’t eaten anything today. The restaurant where I normally buy Kung Pao doesn’t sell it anymore. I ordered it from some place else and it was horrible. I will never buy food there again. Even their wontons sucked. Just for kicks I took my weight and found that it was still below 200. I guess the swelling and soreness from surgery has brought my weight back to where it should be. I was over 200 when I was at the surgeon’s office last week. I didn’t get weighed this week when I saw her because I couldn’t bear to see what it was.