Category: cauda equina syndrome

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.

a day of business calls

by Midnight Demon, posted in baseball, blogging, cauda equina syndrome, chronic physical pain, COVID19, CRPS, depression, mood disorders, recurrent major depressive disorder

A day of business calls

I didn’t sleep well last night. I kept waking up every fricken hour from 1a on. I finally gave up sleeping at 7. I took my meds and then paid my bills. I had enough left over to put some funds in Starbucks and buy a book. I then put my alarm on for 930 so I could see if I could sleep for an hour before I had to get up and ready for getting my haircut. I didn’t sleep. I kept on getting notifications that kept me up. I should have turned off my phone or put the no disturb on so just my alarm would go off. I will have to remember that for next time.

I had my coffee and biscuits. My sister came up for a short time to tell me about my sister in law. She was diagnosed with liver cancer in March and now it has metastasized to her abdomen. She is now in hospice care. Her family is in denial that she is sick which isn’t helping her. Apparently she is so depressed over the news she just isn’t doing much to take care of herself and is in the ICU because she is dehydrated. I feel bad for her. My brother in law is also in denial about her sister’s health. I just feel bad for her son. He is going through so much.

After I had coffee I got dressed and ready for the bus. I had planned on going to Starbucks after the haircut but forgot my bag so I just went to get a drink for me and my barber. On the way back to the barber shop I became short of breath again. I don’t know why as it is all level ground, no inclines or hills. I know this is because of Covid and being deconditioned. My PT said my breathing would be the last to be better. I want to be better now! Dammit.

After I got my haircut, I was again out of breath when I got home. I had to sit in the kitchen for a bit to relax before going up to my room. I had some water and then went up to my room. I changed into my PJs, turned on the AC, checked my phone for more messages and then rested for a couple of hours. I didn’t sleep but the rest did me good. I was finally able to call my insurance and find out why the copays were so high. Turns out my PT place is billing several dates of service under one date so it looks like one visit is costing me $30, $50, or $60 dollars depending on how many visits is processed.  I emailed the billing and asked why wasn’t this reflected in my statement so it doesn’t look like one visit is costing me more than my $15 copay. I am waiting for a response.

I also called uro because I need catheters. I have one box left. The nurse I left a message to called the supply company and they said they would rush the order. I still have to have my provider change the daily catheter number so I can get more catheters to hold me through the month. I sent a message 5 days ago and haven’t heard back so I sent another message asking what the status is.

All this calling made me tired and seeing as I didn’t eat anything, I was also nervous/anxious. I took an Ativan and ordered Chinese food, my favorite dish, Kung Pao chicken. It was so good. They didn’t have the double order like before. I guess you can only order a bowl now, which is sad. I might have to change to another Chinese restaurant to get more Kung Pao rather than more rice. I just didn’t want to place a big order.

I got a response to the message I sent to my therapist the other day. She isn’t happy with me because I sent her “provocative” text messages. I was having a bad pain day yesterday and was texting her about what I was taking. I guess she took it as “provocative” messages. She also said repeatedly that she knows my knowledge of things is great and she said this throughout the session. Funny, I don’t remember her saying that at all. I guess when she said I didn’t go to med school, it threw out whatever else she was saying. I am trying to do what she has asked of me by doing the work outside of therapy like doing the work in the suicidal thoughts workbook. I have been meaning to do it but I am just too tired because I haven’t slept good the past few nights and been in a lot of pain.

I don’t know if I am going to listen to the game tonight. I am feeling awfully tired and I don’t know if the game will cause me to get agitated if there are bad plays. I get involved in my games when I am listening or watching it. I am going to take my night meds early because I want to make sure I go to bed at a decent hour. Last night I was late in taking my meds and it disrupted my sleep. I also bought 3mg of melatonin to take at the suggestion of my psychiatrist. I told him the 5 mg was giving me a hangover the next day. We’ll see if the 3 mg is better.

Letting go of a blankie

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, gender dysphoria, mood disorders, physical pain, psychache, PTSD, recurrent major depressive disorder, suicidality

In keeping with what I wrote yesterday about suicide and future planning, I tweeted this gem “As someone with lived experience, it is hard to let go of the familiar pain. It can be comforting sometimes because it is all we know. Changing or letting go of the pain can be painful in itself. It’s like letting go of a blankie. Hope this makes sense.”

I’ve had horrible insomnia today. I woke up at 1 am and could not go back to sleep. I was able to rest for about an hour. I’ve been keeping my bladder on a 3 hour schedule so I am not overfull and the urge to go isn’t horrible. It has made cathing easier. Because I was up so early, I decided to get my blood drawn for my Testosterone level. It just came back as 294 so I think my doc will be pleased. I have to tell her to give me two vials at a time because one vial just doesn’t work for the dose I need. I used my last refill today.

I made more appts with my PT today. She doesn’t have time next week to see me so I am off a week. I hope she dry needles me tomorrow in my back because today they were flaring big time. I was so miserable as my ankle has been in a flare for more than 24 hours now. I’ve been taking zanaflex around the clock to try and keep the spasms at bay but it might as well be a sugar pill I am taking for all the good it is doing.

I’ve been wicked thirsty today. It is hot and muggy. I had my Starbucks 4 shots espresso with soy milk. It was so good. That has been the only caffeine I have had today. I need to shower but I have no energy. I also need to brush my teeth. I meant to call the dentist today but I never did. Need to find out why I am having jaw pain.

I see a new neurologist tomorrow. I am kind of nervous. Hope she can help figure out the shin pain I’ve been having. Hope it isn’t a CRPS spread. That is what I am worried about as the area is swollen. Just hope she doesn’t want to change pain meds on me. I will be taking an Uber there as I don’t want to expend my energy too much as I have PT in the afternoon. Around noon I am getting my haircut. Got to keep the side and back buzzed at all times.

Love Story vs Don’t You

by Midnight Demon, posted in blogging, cauda equina syndrome, CES, chronic physical pain, COVID19, CRPS, depression, mood disorders, painsomnia

Love story vs don’t you

As you may know by now, I am a huge Taylor Swift fan. Her latest album, Fearless (Taylor’s version) has been playing since I have been able to download it to my phone. There are two songs I absolutely love. One is Love Story and the other is Don’t You. I am having a hard time deciding which to put on repeat because I want them both on my top 25 playlist. Right now the numbers are below 50 for Love Story and over 50 for Don’t You. (The numbers are how many times it has been played as recorded by my MP3 app.) I have been thinking of making a playlist with just those two songs so that I can listen to them back to back. I might just do that. Don’t You has been really talking to me, but not in a psychotic way. I just can really relate to this song so much. Taylor’s new music has been really good and there have been songs I can finally relate to. I feel like that her new music has been grown up as she is older now. My other dilemma with her music is that I follow her lyric bots for the album folklore and when a lyric plays and I don’t know the song, I want to listen to the album to know what the song is. It is driving me crazy not knowing.

It is almost 2am. I woke up an hour ago because of pain. And I had to pee as it has been six hours. I was able to void without cathing so I am happy about that. I am not happy I have a uti. My culture came back positive for bacteria. I haven’t heard from the NP yet if she is going to treat it or not. I have been feeling yucky the past two weeks since the cramping started. I have had busy back to back days and am really tired but cannot seem to sleep. I want to change my sheets but it will be a hassle as I have stuff on my bed again. I got Amazon packages surrounding my bed. I just have to take two downstairs to put on my porch. It is my new coffee that I love from Starbucks called Spring Day. It is limited so I bought a bunch while I had the money.

I was able to wake up early this morning to get my first vaccine shot. It took less than twenty minutes and I was early. I had to stay a little longer than the usual 15 minute observation period because I had an anaphylaxis reaction to ginger. Ginger is not in the vaccine but they wanted to be cautious because I had this reaction. The only reaction I am having right now is a sore arm and a headache which Tylenol helped very much. I had to ask my doctor if taking Tylenol on a daily basis is good. He said as long as I don’t go over the 2000 mg dose a day I am ok.