Tag: complex regional pain syndrome

Sunday Blog 1-July-18

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

Sunday Blog 1 July 18

Can’t believe it is fricken July already. Like where did the year go?? 3 days I go south of Boston to see my friends. I found the bag I want to pack. It had my power cord for my laptop that needs to be repaired. On it was a dead mouse! ICK!!!! Freaked me out. I got a glove and a tissue and ewwwww got the poor thing off and in the trash. Guess that was the bad smell in my room a couple months ago. I lysol’d the shit out of the bag. Now I got to make sure it doesn’t smell and then I will pack my things in it. There was nothing else dead or alive in it. Just my fuzzy slippers and a bottle of water.

I made cornbread pancakes. They were really good. I made like 7 of them. Well, really like 5 as two fell apart. I am not a good pancake flipper. I also burned two. Not sure I will make them again. They were so filling. I probably am going to have dinner late. I plan on making the pulled pork. That seems good on a nice hot day. I’ll throw a can of soda in the fridge.

Came back to my room and wanted to read Neverwhere. I read a chapter and then had to stop. I want to read at least another two more. I have to do it in shifts because the book is weird. Typical Gaiman. But it is not scary so I am grateful for that. I don’t do scary. Weird is okay.

My infrared thermometer came. I have been playing with it. Then I found out I wasn’t doing it right. Oh well. I had to turn the AC on high as it was getting warm in my room. It is so hot out that I want to be freezing. The house is worse as it doesn’t have AC at all. I need to shower but I think I will do it after dinner. My cousin is having a BBQ but didn’t tell me about it so I won’t be going. My mother is not because she is in too much pain with her knees. I told her I was going to make the pulled pork. It is too sweet for her. It tends to be too much for me. I can make about three sandwiches out of it. I don’t mind having it for a couple of days. It is so good. I also have baby back ribs but it is too hot for the oven. If I knew how to operate the grill, I would grill them. Maybe my sister or brother in law will show me this year how to operate it.

My mother bought Italian ice. It was so good on this hot day. I told her to avoid the back stairs leading outside because my idiot brother in law has the mulch piled higher than the grass so it is like an additional step after the last step. I nearly fell. I sent my brother in law a text about it.

I participated in the BPD chat. I said a couple of things but it wasn’t that interesting today. I had a hard time identifying with the others. Topic was self-identity. I found it interesting as I did struggle through my teens and early twenties about who I was. I think getting a debilitating nerve condition helped sort things out or put things in perspective. It took a while to realize who I was and how to live my life as that person. Then when I came out as transgender, I realized all along I was a male but I just didn’t have the words for it. And it was a chief source of my suicidality and I didn’t realize it. It took me a long time to move forward with transition. Unfortunately, it is going no where because I have decided to end things.

It is getting late and I just realized I didn’t do my meds for the week. I also want to get a few more chapters of Neverwhere in before meds make me dopey. Later all.

Saturday blog 30-June-18

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

Saturday blog 30 June 18

I woke up at night after a shitty night. Pain kept me up till around 0300 or after. I had taken some Benadryl and that seemed to work. I had looked up cornbread pancakes which I had planned to make, except I fell back to sleep and didn’t get up till around 1730. I also sent a message to my Senator. What I wrote, I have no clue or if it made sense as it was late and the Benadryl was kicking in. I didn’t give my number as I didn’t want to get calls. I will probably get emails though. Fricken ass is in Congress another four years I think. I don’t think I voted for him. I just want him out because he is going after opioid manufacturers to decrease supply. That will put stress on chronic pain patients and hospitals, who already don’t have pain meds to give after surgery and things. It is a real mess thanks to the lies of the CDC.

My brother in law had called to tell me there were burgers and I had some and potato salad. I ate a lot for my first meal of the day. Sox are playing and are winning so far 6-0. I got a migraine at the start of the game so I didn’t feel like listening to it. Migraine is gone and I will be going to bed soon. I am just so tired. I hate being up all night because I feel like shit later in the day. My mother made pork fried rice but I don’t like it. It tends to be salty.

I read some of Harry Potter. I should be reading some new book instead of old but Harry is fun reading. I am almost done with the book. I might go back to Neverwhere by Neil Gaiman. I have plenty of books to read, I just don’t know what I want to read. I have bought some new books, one is something I got intrigued by when they just had an excerpt on when Waldenbooks was still around in Government Center. I used to go there almost every Saturday to buy books. One visit I had an armful of books which would have been at least $70 or more along with a tote bag. I put half of them back. I don’t remember now if I bought the tote bag or if you had to spend so much money to get it free. On Facebook, John Grisham just opened a group for his fans. I haven’t worked out the settings because it is hogging up my feed. Every new person says “thank you for the add. I love *this book* and can’t wait for the Oct new one.” I don’t fricken care! Same with my MASH group. I must have had 10 people say MASH is available on Hulu now, all 11 seasons. I don’t care, I have the DVDs, though I was warned that season 9 and 10 were the same and I would have to purchase one of those seasons separately. I haven’t gone that far yet. I just am up to season 1. I did see the last episode as I was never able to catch it on TV. Sad one. The nice thing about the DVD is no commercials or ads. I love the show and the group. They will post a quote and I will laugh or feel sad. Like Margaret has a few scenes where she shows her soft side and it just gets you. One person in the group doesn’t like BJ and I hate when he posts because he calls him bipolar. He is acting for crying out loud!! It is what made the show! Pisses me off. One guy I had to mute because he is a recovering alcoholic and all throughout the show, they all drink. If it bothers you, don’t watch it!!

I still need to pack my bag for my friend’s BBQ. I got a text saying he cleaned the pool. I am so excited. It should be a good day as long as my foot/ankle doesn’t flare up. It is also going to be a hot one. Perfect weather for the pool and BBQ. Just hope my swim trunks still fit. I bought them a few years ago. They were loose on me. They should fit me now because I gained a few pounds. I just got to find my carry on bag. If not, I will just bring a backpack. I got plenty of those!

lab work and other stuff

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

Lab work and other stuff

I was having a difficult time sleeping last night due to pain. I fell asleep sometime after 1 when I decided to sleep on my left side, where I hurt, and use the body pillow as my head pillow rather than the standard one I had been using. I slept through the night until my blasted med alarm went off. I couldn’t believe I woke up in the same position I fell asleep in. Only thing was, next time I am putting a pillow between my legs because my right buttock was hurting something awful. Tennis ball massage calmed it down.

It was hot but not blazing when I left around 0930. A guy came over talking to himself and as I rounded the corner to the bus stop, he knocked on the brick apartment building to see if the bricks were real. I sat on the bench and he told me the new condo place had fake bricks. I said I know. I told him cement was expensive. He was like really? OMG why do weirdos talk to me??? He was telling me all about the town I lived in like I cared. I agreed with him. I swore at times as the f bombs are just part of my language and that seemed to offend him. He just stopped talking. Thankfully the bus came and he said nice talking to you. I was scared he would continue talking to me all the way to the Square!

I went to Starbucks and had my breakfast and espresso. I had five shots today because it was going to be a long day. I finished but didn’t have time to write so I grabbed my espresso cup and left. Now it was hotter. I got to the train station and waited for the train. I was feeling okay. I got off my stop and started walking toward the building to have my blood drawn. I got to the second parking garage when my ankle acted up. Fuck this wasn’t good. I stopped for a bit and then carried on carefully. I went to the blood lab where my PCP’s office was but because I had urine tests also, I had to go to the lab 3 floors down. Okay, they were better phlebotomists anyway. I went and had my blood drawn. I thought I could pee. I felt like I could pee, but I couldn’t. it wouldn’t come out despite nearly drinking a liter of water. UGH. I told them I couldn’t go and that I would be in the lobby until I could go. I figured in a half hour or so, my bladder would be full. I kept drinking water. For some reason, I was really thirsty. Finally decided to try again and after a few minutes which felt like hours, I went. Urine retention sucks so bad. I cannot go on command. I have to be almost overflowing to go. Damn nerve injury.

I had about 15 minutes before I had to see my psychiatrist. I walked over to the building. I checked in and there was a little girl about 2 in the waiting room. She was so cute. She kept walking around like she owned the place. I kept saying hi, but she was shy and would go to her grandmother to hide her face. It was funny how kids are like that. My doc came and we talked about my previous lab results. She had never heard of my medication lowering my sodium after being on it for so long. I had. There was a lady on Twitter whose sodium levels were dropping and no one figured out that it was the Trileptal until she was very sick. She was in the UK. I told her about the book, which I meant to show her but totally forgot to bring it with me. I will next time.

I didn’t want to make an appt with her. She gave me a time on the day I plan on ending it and I told her I couldn’t make it. When she asked why, I lied and said I had PT. I wasn’t in the mood to bring up my suicidal thoughts and just let it be. I was more worried about my lab results.

I had sent a message to my PCP that I had the lab work done today. Around 1730, he messaged me saying that my sodium was normal. I then got a message my test results were available for viewing. I am one point above normal. I will take it. I have been eating salty foods all week. I emailed my psychiatrist about the results and that I was in a flare. I had told her I could only take one breakthrough med a day which I hope to change next week. I had to take another pill a little while ago because as I was putting my dinner dishes in the sink, my ankle exploded in pain. It was too early for my night time dose so I took the breakthrough. I am still hurting and I am not in a good mood.

I went through Twitter like I always do. One of my pain community member had posted a pic saying that the biggest risk for chronic pain patients isn’t addiction. It is suicide. OMG is this so fucking true. I had to use the bathroom so went downstairs and as is the norm, my ankle had a fit. Totally went out on me. How can I not think of ending my life? I had just taken a breakthrough med an hour or so ago. And now my ankle is having stabbing pains, the “glob” is throbbing, and my malleolus is being hammered. I just want to not be in chronic pain and that is my life sentence. I don’t want to live anymore. It just has to end, and it will soon. I can’t continue like this. I thought I could. I thought things were getting better. But like always, it was a joke. A big HAHA, fooled ya. I still haven’t taken my night meds, which means I have to get up once more. I don’t have anything to do tomorrow except find my carryon bag so I can pack for my friend’s BBQ on the 4th. It is going to be hot and I want to dip in their pool. Little things is all I have to look forward to between now and the end.

going out and paying the price

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

Going out and paying the price

So past three days I have gone out, including today. It was pouring rain off and on most of the day and humid as fuck. I woke up when my med alarm went off. Then my bladder sent me an urgent message so I went downstairs. Of course, my mother was in the bathroom. I tried to patiently wait.

I decided I might as well go to my barbers to drop off the casserole so I can have the rest of the day to rest. My psych had reschedule our appointment for tomorrow, which means I have to leave early. Yuck. It is supposed to be ridiculously hot but I guess the south is HOTTER than us so I can’t complain too much. I need to leave early so I can get my lab work done. I really didn’t want to go out as I knew I was going to get wet and I would sweat. I got my stuff together. The trouble was, finding a waterproof bag as I didn’t have one. I found a plastic type bag. I thought of taking my journals but I knew they would get wet and I hate wet books. I left them behind. I also couldn’t bring my headphones so had to get my earbuds. All these decisions before coffee.

As I was walking to the bus stop, my sister drove by and offered me a ride and I took it! She dropped me off in front of my barbers. My barber wasn’t in yet. I told the barber that was there, I was going to get some java and then I will be back. I had a donut while waiting for my espresso. I get it over “light” ice. Everyone has their own definition of “light”. The barista today just gave me enough to keep it cold. I asked for a little more and got just that. I poured my soy and the container leaked more soy all over the place than in my cup. I laughed. I went back to the barbers.

My barber came after a few minutes and he had his son with him. A very cute three year-old. He cut my hair and we chatted. Then I left for the bus but I just missed the bus and had to wait nearly an hour for the next one. I must have taken like 10 steps from the door of the shop when my ankle flared up. Fuck. I hobbled to the T to a bench. I sat for a bit. Took my hat off and then took a selfie. I posted it when the bus came. I grabbed my coffee and went to the bus that would take me close to home. It wasn’t until I was waiting for the bus home that I realized I left my hat at the bus depot. Do’h!!! It was pouring so I held my umbrella when the wind picked up. If it got worse, I was going to lose the umbrella as I hate fight it in the wind. I rather get wet. I gave directions to someone that stopped and then the bus came.

My ankle kept going in and out on me as I walked the block home. It was trash day so I put the barrels in the driveway. One had some water in it, making it heavy to move. I dumped out the water. I got home and my ankle just was not happy. My legs were feeling like cement. I want a shower. I took a breakthrough med and waited for it to kick in. My t-shirt was wet and the AC made me really cold. It was now or never in the shower. Bad move. My legs were awful after the shower. I still hadn’t had anything to eat except the donut.

I couldn’t cook. I wanted to make steak and cheese sub. It will have to be another day. I ordered Mexican food. Tacos and taquitos. OMG it was so fricken good. I couldn’t finished all of them. I saved one taco and one taquito. I then went up to my room to rest. Legs have never been this bad. I am used to my ankle being a bitch but legs, both of them, being so sore is not something I am used to. Also my left knee seems to act up while having my legs out. It was bothering me when I woke. I was in a fetal position so not sure why it hurt.

I wish I didn’t have to go out tomorrow. It is going to be yucky. I am trying to drink a lot so I am not dehydrated. I don’t want there to be difficulty finding my veins. I also need to drink a lot so that I can possibly pee so I can give a urine sample. I hate urine retention so bad.

I am trying to massage my legs to get the soreness out of them. I am supposed to go downstairs for my nephew’s birthday but I hurt too much. My sister told me about three hours before the time. Thanks, sis. I am not the uncle or anything. I am so tired of being the last to know about these things. Oh well. I texted my nephew already. I just want to stay in my bed. This going out on consecutive days sucks.