Category: CRPS

waking up in the morning sucks

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

Waking up in the morning sucks

I woke up at 7 because I had to pee and I have been up since. I took my shot and my morning meds. I had difficulty drawing the syringe today. The plunger on the needle didn’t want to move so it was hard to draw. I hate when that happens. After taking my meds, I went downstairs to shut the fucking kettle off as my mother just let the thing whistle. I am so damn annoyed. I hate sounds and I just glared at my mother when I saw her. She had nothing to say. I got my coffee cup and made coffee. I had ordered donuts last night so I had that for breakfast. I left them in the box and they were kind of hard this morning. They were still good though.

Today I am going to try and take my recycling out of my room and put it in the bins. I also need to take my trash out. I need to shower today and I might trim my beard. Depends on my energy level. It doesn’t take too long to do but there is always a few hairs that I miss that I need to do the next day. LOL

I bought a new book called “When it is darkest” by Rory O’Connor. He is a suicide researcher that I have been following for years now. The book is about suicide and prevention. I can’t wait to start it but I already have three books that I started and none that are close to being finished. I really need to “schedule” reading time otherwise I just don’t read. I had to do this the last time I read a book and it worked out. I would make note of the time I started and read a chapter. If I finished less than an hour, I would read another chapter. I find this helps me keep track of my time and reading. I have a kindle book that I started but I don’t think I am going to finish it. There are too many words I don’t know because the book is written about the Middle East area and uses words to describe things that I just don’t understand. Thing is, I don’t know if the word is really a word or a made up one and I really don’t want to be spending time looking up words in the dictionary because it just distracts me. If a movie comes out about it, I will see the movie. The book is too hard to read.

The books I am currently reading is Dune, a baseball history book, and Sooley, John Grisham’s new book. I like the baseball history book and will read more than a chapter at a time with it. But sometimes it gets my mind going and thinking and I have to pause to reflect on it and where I want to go with it. With Dune, I am trying to remember what it is about as I have not seen it since I was a kid and kind of found it scary with the sandworms. I know Patrick Stewart played in it and I loved the movie but it has been so damn long, I forgot what it was about. I never read the book before so this should be interesting. Sooley has been interesting, like all John Grisham novels. It is about my 2nd favorite sport, basketball so I am all for it.

My allergies have been off the wall today. Started with my eyes watering like crazy. I had to use the allergy drops to calm them down. Now my nose is stuffy so I might have to take Benadryl to clear it up, which will end up putting me to sleep by the afternoon. I still need to brush my teeth. I’ll do that either before or after I shower.

3500th Blog post

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

3500 blog post

This is my 3500th blog post. I have been blogging since 2012, the year I got disabled. It was a tough year and I was depressed and suicidal most of the time. I had a lot of time on my hands and so I think writing about how I was feeling helped to get stuff out of my head. This blog has been a lifesaver for me. I don’t know what I would do without it.

Yesterday was a really challenging day. I had therapy in the morning. It was stressful. We talked about things that were hard to talk about. She is good at keeping me on point rather than going off on a tangent. I told her I would work on self-care and brushing my teeth/showering. I have been bad at doing these things. I don’t like brushing my teeth but I know it has to happen. I have been showering at least once a week but sometimes I can go 10 days without a shower. I need to work on clearing my bed for the week as I have nothing scheduled the rest of the week. It would be good to change my sheets.

After therapy, I had an hour before I had to leave to get my 2nd vaccine shot. I took public transportation to the hospital and back. I was seen really quickly at the vaccine clinic. I was in and out in twenty minutes. I then went to the square and got a caramel macchiato. I had a half hour before the bus was to come so I just sat on a bench and drank it. It was peaceful at the station. Not too many people were there. I was already feeling pretty tired. I brought a Powerade bottle with me to drink so I would stay hydrated. PT was torture. She had me do one of the machine and within a minute or two, my CRPS ankle flared up. I went as slow as I could possibly go. I didn’t care. I was exhausted and just wanted my bed. Afterwards she worked on my legs to get the knots out. She accidently put too much pressure on my nerve injured thigh and I screamed in pain. She avoided the area the rest of the session. My legs felt better but I got up too quick and got dizzy. She had me drink some water and rest. I then realized I had not eaten all day. I ordered Kung Pao chicken on the way home from PT. It was so good. I really love this dish.

Today I have been tired because I was up in the middle of the night again. I woke up at 1 to pee and had trouble getting back to sleep. It could be a side effect of the vaccine as well but I am going for my long day yesterday and being up in the middle of the night as a reason why I am so exhausted today.

I don’t know if I will listen to the entire game but I am going to listen to the first couple of innings. They are facing the Braves, which has been on a hot streak. We have been on a losing streak so will be fun to see what happens. I love baseball so much. I am keeping track of games lost/won again on Twitter. Right now their record is 29-19 and we are in first place.

I got a craving for donuts so I ordered them. Now I am happy because I haven’t had donuts in more than a year since the pandemic started. I am going to try and take my night meds around 7 but it might be earlier. I am just so damn tired but if I go to bed now, I most certainly will wake up before midnight and be up all night.

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.

Don’t call me daughter 6

by Midnight Demon, posted in blogging, chronic physical pain, CRPS, depression, gender dysphoria, grief, mental disorders, mood disorders, transgender

Don’t call me daughter 6

Yesterday I was in the kitchen with my mother and I was in a mood. I wasn’t feeling so great and just wanted to do what I needed to and go back to my room. My mother was there and asked what was wrong. She wanted me to talk to her. Fuck that. She lost that right when she refused to call me son. From now on I will correct her when she is misgendering me. But I am not going to talk to her for any reason other than what goes on in the house. I am not going to talk to her like I did before about my ailments and doctor appointments. She is getting to be the egg donor and if that is what it takes to cut off feelings from her then so be it.

I’ve been having a hard time with the cramps. I don’t know if they are uterine or bladder related but as an experiment, I cathed and felt relief at first only to have severe pain afterwards.  I don’t know what to make of it and I have cathed since. Taking a double dose of Miralax was a bad idea. I had colon blow and woke up with crap in my pants. Luckily, I didn’t get any on the bed. I had to shower and what is worse my mother had to use the bathroom so I was so embarrassed. I need to time taking it right. Thing is it is so unpredictable when it works. It could be a few hours or could be a day. There is no time table to expect when to go.

I am still have cramps and being really down about it. I called my gyn to make an appointment for the exam. It is in May. I see the uro NP this week so I am going to tell her and ask for a urine culture to be done just to be sure I don’t have an infection that could be causing this. I really am not looking forward to surgery again but there is little choice I have. Once the offending organ is gone is should be apparent what is causing what. I doubled my bladder spasms pill yesterday to see if it would help and it did a little bit. Maybe this is bladder related. I won’t know until the uterus is gone. I got my bladder on a schedule again. I didn’t want to do it but I have gone past the six hours I am supposed to go. I can’t keep holding on to my urine for so long. It could be why I have spasms as well.

I wonder if my mother is ashamed of me and that is why she doesn’t want to call me son. It would make sense. I don’t get the sense she is proud of me. I just don’t understand why she can’t accept her child. This bothers me so much. When you bring it up to her, she is dismissive. Then I think about all the abuse she put me through and it just makes me so sad and angry. She used her trust as a mother to do her evil bidding of abusing and touching me when she had no right to touch or look. I get mad at my pediatrician who documented all these things and didn’t do a damn thing about it.