Tag: complex regional pain syndrome

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.

Chronic pain and worth

by Midnight Demon, posted in Chronic pain, chronic physical pain, CRPS

up early

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

Up early

My day started around 530 because I had to use the bathroom. Little did I know it would turn out to be colon blow day. I must have gone to the bathroom three times already. I think I am done as usually three is the magic number of finishing emptying my bowels. I had coffee afterwards. I still have to brush my teeth. I didn’t do this yesterday. I meant to but never got around to it. I should shower today.

I am planning on going to the square as I have a few errands that need to be done. I want to get my lemonade flavor Gatorade at the store there. It seems to be the only place that sells it. I will also get some meat and chicken. My mother wants chicken wings so I will get a package as long as it isn’t too expensive. Last time it was like 15 bucks for a package. Ridiculous.

I went to BJ’s for food shopping. I used the rest of my food stamps for all the stuff I bought. My sister had to put in $25 more. I bought chicken wings, breast, fish, tuna fish, steak, and then little stuff for quick meals. I also bought my favorite ice cream. We didn’t go to the square so I did when we dropped the stuff off at the house. I took the bus and then I got a macchiato at Starbucks as well as a sandwich.

I am so tired. My back hurts. I just took a BT med and some Tylenol. My calf started cramping up when I was going up the hill to my house. I had just gone to the pharmacy to get my meds and the hill was too much. I was only three houses away from my house, too. Seems I did too much as my leg/ankle/foot just flared up on me. I am in so much pain. I spent $127 on food and I just want to eat ice cream for dinner. I think my mother is making supper. If not I am not eating. I am in too much pain to make something.

I haven’t heard back from my uro. I sent a message the day I got results of my urine culture. It still hurts when I pee. Today I had colon blow. My bowels just erupted. Luckily I had no accidents. I haven’t cathed today. I have been having good urges so been voiding on my own.

My sister made the fish I bought. It was good. I am going to have ice cream later once my pain is lower. It really flared up when I went downstairs and sat in a chair. I had to take an Ativan because my right calf and left foot cramped up at the same time. OMG was it painful! I am depressed that I am in so much pain. I am having suicidal thoughts but that is all that I am having. I sent my therapist a message that hopefully she will read before our appointment. I asked her if there was something that could alter the path of SI àplanning date as my thoughts sometimes have been going that way the last few times my pain has been bad. I just got a workbook by Kathryn Gordon PhD on suicidal thoughts workbook. It will take me a week to work through it to see if it will help me. I really, really need to make the time to go to Starbucks with my bag and journal and this book to read it until closing time. I will write a review blog when I finish it.

when morning pain is too much

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

When morning pain is too much

Early this morning I got a wicked bad cramp in my CRPS foot. I couldn’t do nothing but bear it. I couldn’t move it or anything. I knew it wasn’t because I was dehydrated because I was drinking fluids when I was up at 1 am. I drank half a bottle of Gatorade. My foot is still severely sore so I had to take a couple of BT meds. I wanted to go grocery shopping today but that isn’t happening.

I ended up going to PT last night. She worked on my calf muscle which she said had a A+ knot in it. I am to roll a tennis ball underneath it to try and work it out. She said I might need dry needling to get it out but I would be limping out of the office as it is painful. She was just working on it with her hands and it was fucking hurting so bad so I know the needling would be worse. She told me that I could use a book on the bed and roll it. That is an awesome idea because I have a foam topper and the ball would just sink in and not move. My calf is still sore from the massaging she did. I walked up the hill to my house and it hurt so bad last night coming home. My breathing is going to take time to get better, she said. It is the last thing to get better. But I should continue to walk up the hill. I won’t be walking today because of my foot.

I made an appointment with my therapist for the end of the month. I figured if I have an appointment, I wouldn’t stray too much away from therapy. I see my pcp next week, in person. I am going to see if he can order fasting labs for me as it has been a while since I have had them done. I just sent them a message to find out if I should contact uro because I am still experiencing pain in my urethra despite not cathing. I don’t want to take the pyridium tabs because they cause me to retain more as I don’t get the urge to go. Today is the last day I am on antibiotics for this UTI. I haven’t cathed the whole time I was on because the urge was there for me to go. I also haven’t been on a schedule because I seem to be able to go every 3-4 hours on my own.

I am listening to Taylor Swift’s Speak Now album. I love this album so much. I wanted to listen to Fearless and I might later. Or maybe I will mix the albums and create a playlist. I don’t know. I just need to hear good music that puts me in a good mood without causing me to think about things.

I am getting tired. I was up in the middle of the night again and didn’t go back to sleep until around 4am. I woke up around 0730 to pee and I have been up since. I might need a second cup of coffee soon. I want to work on my 2nd memoir today. If I can write at least 300 words that would be good. I don’t really know where this book is going. I have written only around 500 words so far. It has been a slow start because it is so personal.

My legs are killing me so I really think despite taking BT meds, it isn’t enough for me to go grocery shopping by bus. It will be too much for me and I don’t want to hurt more than I already do. Today would be a perfect day for it because the weather is perfect. It has cooled off considerably and is a nice sunny day. The wind makes it cool but other than that it is a really beautiful day.