Category: Chronic pain

Rude Awakening

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

Rude awakening

I woke up in the wee hours because I had to pee. I had cathed and didn’t drink anything afterwards but that doesn’t mean my kidneys stop working. I emptied and stayed up for a little bit to check on the Sox game. We won 8-4. I wish we won more games than we lost. Seems for every game we win, we lose 2-3 games. I went back to sleep and woke up around 630 to pee again. I laid down again and my med alarm went off. I then snoozed lightly. I don’t know what time it was but my sister fucking slammed her door and scared the shit out of me. I woke up so damn startled. I was up but I tried to get back to sleep but I couldn’t. around 930 my surgeon’s nurse called me. I still have discharge. She said she will talk to the doc and get back to me either this afternoon or tomorrow morning. UGH. I also said I requested some more ibuprofen but haven’t heard back. Her response was that the surgeon was busy. No fucking shit.

I got up to have coffee. I didn’t eat anything. I wasn’t really hungry. It was hot in the kitchen. I drank my coffee and then went back to my room to cool off. My mother asked if I was going to the grocery store. I said no. I asked what does she need and she said she needs eggs. I never went to the butcher’s shop for cheese.

Today is T shot day so when I came back to my room, I gave myself the shot in my left thigh. It hurt so it flared up the nerve pain. I wasn’t in the best of moods. I got an email from my neuro saying she wrote a provider letter. I read it. It had my MRI report in it. I still have a collection of fluid in my spine but it is much less than it was. She did say that I had some disc material at the nerve roots at L3-L4 but nothing to require surgery. I was glad to hear that. I guess I am just going to have to live with this nerve pain in my thigh. I asked what can be done about it. I am waiting for a response.

My new coloring books came along with my new stamps. I collect stamps. I don’t do it actively because I don’t always have the money for them. I shaved today and then washed my face. It felt good to have some cold water on my face. I meant to brush my teeth but forgot. I will the next time I go pee.

I had some protein pancakes for lunch. I also had another cup of coffee. I was in the kitchen minding my own business when my mother came in to make herself lunch. She wanted a conversation and I wasn’t in the mood for one. I am feeling pretty grumpy and shitty. I just want to sleep. I might take an afternoon nap. I just feel so blah. Heat is not helping as it is quite muggy today. I really can’t wait for cooler temps.

Sunday Blog 12092021

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

Sunday Blog 12092021

I’ve had a lazy day today. I woke up in the middle of the night to pee and struggled getting back to sleep. I woke back up around 5 but for some reason I didn’t get up. I just turned over and went back to sleep. I got up at seven to have coffee and drain my bladder. I have been on a four hour schedule and it has been going pretty well so far. I have been drinking a lot because I want my veins to be good for tomorrow’s MRI. I have been having abdominal pain all day despite being good on emptying my bladder. I used a hot pack that the hospital gave me post op. It helped a little bit. I have been taking ibuprofen and Tylenol. I don’t want to take the BT med if I don’t have to.

My neighbor had a BBQ and my brother in law brought over some food. I had some pork and a potato that was very good. I love potatoes and this was like a double baked/grilled thing. It was so good. I had made a fluffernutter for dinner so I am glad I had some protein so I won’t be hungry later.

I am still having yellow discharge so I sent a message to my surgeon about it. I don’t know if this is normal or if I still have an infection. I just hope I don’t have to call because I never get anyone on the damn phone. I always get someone’s voicemail. So annoying. I haven’t been wearing boxers, just female underwear and a pad. I hope I don’t have to see the surgeon again after she said see you in four weeks. That will suck. But I don’t want this to turn into something bad either.

I shaved my head and face today. I trimmed the goatee to a stubble and then shaved around it. I also trimmed my mustache because the hairs were making my nose itch. I can forget about a thick mustache. It would be too itchy for me.

I set my alarm for 0700 tomorrow morning so I will be up in time to have coffee and breakfast before my MRI appointment. I am kind of nervous. I have to remember to take with me my meds so that I can lie on the table comfortably. Otherwise I get up and I can’t really move for a few minutes because my back hurts a lot. I just got to remember to bring water with me. I just put the meds in a travel pill box and put it in my bag so I don’t forget. Trick is going to be to remember the water. I always forget it when I leave the house.

I have ten dollars left on my T pass. I will have to put more money on it when I get paid next. Tomorrow should be my last travel day unless I need to go to the square for something. I do need to get cheese for my mother. I might get some burgers, too as I will be at the butchers. Oh and some steak! It will have to be Tuesday when I go because Monday I have therapy after my MRI and I don’t have time to shop. I need to catch the bus home. I think if I time it right, I might have therapy on my front porch. It will be a good day to sit outside some and have some fresh air. No one will bother me as it is pretty quiet.

I can’t believe how much pain I am in right now. I don’t know if it is my bowels or just the surgical area. I haven’t moved my bowels since Friday. I have been taking the Miralax but that isn’t always reliable. I didn’t take it today because I don’t want to be shitting tomorrow at unknown times. I used to be able to go in the morning soon after I wake up but that hasn’t been the case lately. I also don’t know if the pain is because of the discharge or not. I sent a message to my surgeon today to ask about it. I figure if they check the messages first thing in the morning my message will be right there for them to see. I messaged my psychiatrist but I haven’t heard back from him so I sent the same message again. I don’t see him till Oct, which really sucks. I am approaching eight weeks that I have been on Pristiq. I haven’t noticed any change with my mood. My pain has been less but that is usually the case after I have surgery. I think I have had only two flares during my recovery so far. Right now my ankle and foot is calm. Pain is like a 2 as it is throbbing just a little bit. But the nerve pain in my thigh has been horrendous. That is still ongoing. I am glad I got an MRI this quickly. I just hope I don’t have to see my neurosurgeon again. That will suck big time. I don’t really want another back surgery.

I took my meds a little while ago. I think taking them might help with the pain a little bit. I just took some BT meds because I am so uncomfortable. I hope the discharge is just leftover from the infection I had and not something new. I really don’t want to be on antibiotics again, especially that flagyl I was taking. It was horrible. I had to take it fast before it melted in my mouth with the bitterness. Yucko.

Red Sox got beat by the White Sox today in the ninth inning. I am so disappointed. We are tied for the wild card. It is our only chance of making it to the post season. We are playing Seattle next. These will be west coast games which means late starting times. I might just have to check the scores in the morning because I am not going to stay up till 2 am listening to the game.

it takes everything in me just to get up each day

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

it takes everything in me just to get up each day

today I am a total wreck. I am wicked emotional, riding a rollercoaster. One minute I am ok the next I am wicked sad the next I am wicked angry. I have to stay off of Twitter because it is bringing me down with the Covid cases and idiot people that won’t get a vaccine for preposterous reasons. I blame Fox news for most of the misinformation out there.

Yesterday my thigh seized up. I don’t know what I did or if it is a reaction to the testosterone shot I gave myself on Wed. I spoke to my PT about it and she thinks it is a tight quad. She told me what to do about it and I have been trying to do it but my groceries came and I aggravated it more by going up and down stairs. I am fucking hurting big time right now as the thigh is throbbing painfully. I have taken what I can to control this pain. I would love a nap but I hurt too much to lie down. I really just want to die right now because I can’t stand the fucking pain. Ankle is acting up too. Last night around 230 I woke up with my calf cramping on me. I couldn’t go back to sleep right away so I decided to color for a bit. It helped to get my mind off the pain as I waited for the meds to work. Unfortunately, I didn’t really succeed in sleeping after coloring because then I woke up to pee. I have been up since 530 as I gave up on sleep. I had my coffee around 0600. I also had a bowl of cereal. I had energy this morning but now I feel so spent. I also went to the post office and the pharmacy to pick up my meds. My BT meds won’t be ready till Monday because they are short four pills. I could have them but then I would be short. I rather wait till Monday to pick up the full order because there is no way I am going to get another script for four pills. I have enough to carry me through so I am not too worried.

The walk took out my lower back. I was hurting big time. I am hoping my PT can work her magic on my lower back to ease it up or do some dry needling to get it to stop cramping on me. I will ask her on Tuesday when I see her again. She has been the best PT I have ever had, next to the other one I had before her. She was great, too.

I had therapy yesterday. It didn’t go so well. We talked about working on my trauma issues and she has some reservation about doing it because I am not that great with doing coping skills outside of therapy sessions. I admit that I am terrible at it mostly because I don’t know what to do half the time. It is easy to say do coping skills but there are so damn many how do you choose when you are at your breaking point? I got at the frustration point today because of pain and decided to write a blog. That has been always a go to for me but I have to be careful about writing about how suicidal I am feeling because I have had police show up at my door. I don’t know if what I wrote on the blog that day is what sent the police to my door as I wrote on multiple platforms that I was suicidal, any number of which could have had someone call the police on me. So I tend to keep the strong urges off social media.

I took an Ativan with my BT med and feel much calmer than I did before. Ativan has a way of righting the ship. I use it sparingly but I guess I should use it more often when I feel perturbed. My pain levels have gone down some so that is good. Game is on in a couple of hours. They have been on a losing streak as of late. I know we will be okay once something shifts but I don’t know what that is. Our pitching has suffered greatly since the stupid sticky ban. Don’t understand why you would enforce something midseason instead of at the start of the year. SO fucking stupid.

So because I can’t use my coping skills wisely, doing trauma work is kind of off the table right now. Plus with my surgery coming up it might be difficult to do the work. I have a feeling I might have to miss a session or two because I won’t be able to sit properly. It will be a good break for me.

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.