Tag: chronic illness

nice day for doing nothing

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

Nice day for doing nothing

Yesterday I had all sorts of pain. I really overdid it. I came home from therapy and was really tired. I tried to lay down to nap and my foot/ankle were shaking from fatigue. It was the weirdest sensation. It was like it was trying to hold itself up and couldn’t from the effort. I didn’t know if I was going to be able to go to PT today. I woke up this morning and was still in pain so when the med alarm went off and the top of my foot hurt, I called and cancelled my appointment. Then I went back to sleep until like 3pm. I was really tired and I guess my body needed the rest.

Yesterday’s therapy session was a joke. I told him all that went on with the shot and how difficult it was to draw the syringe. It didn’t phase him. The whole session he was playing with his fingernails. It was so pissing me off. Then I told him I have been having some intrusive memories come at me because of the whole SCOTUS nominee thing. I asked him what to do about it and he had no idea. He told me he was “trained extensively in trauma”. Really? Now I don’t believe him because a trauma person would know what the fuck to say or do. I am so pissed off. It was good that I was tired and didn’t put things together until now. I am going to cancel next week’s appointment. I just can’t deal with him. On the one hand I like that I have someone to talk to, but on the other, I would like someone to HELP ME WITH MY PROBLEMS!!! Isn’t that the fucking point of therapy??? The idea of trying to find someone new doesn’t exactly fill me with joy. I have no idea where to start, again. My chickenshit PCP wouldn’t know where to help me. And my psychiatrist has tried to find me a therapist and wasn’t successful. Over a thousand therapists in the Boston area and no one is taking new clients or wants to deal with suicidal clients. I am just tired of it all. So very tired.

As this is day 2, no changes. I am not in as much pain as I was in yesterday though my left thigh is still kind of sore but not as much. I had a hard time sleeping because of pain. After I had taken my extended release and immediate release med, I got a new fucking pain that I never felt before. I was like WTF. I didn’t know what to do or take so I decided Neurontin was the answer. Within an hour or two, I was knocked out I think I woke up around 4 am in pain so had to take another pain med, but other than that, I slept through. I was so foggy when I canceled PT. My foot was still hurting me so there was no way I was going to go. And for some reason both my heels were hurting me.

I took a shower but didn’t shave. I didn’t feel like it as I can’t afford a haircut this month. I thought I would be able to but I messed up my finances, again. All because of my damn T-pass. I finally got a monthly pass so I am not paying for fares left and right. I just checked my junk mail and LinkedIn seems to have been compromised or spoofed. I must have had like 20 emails saying this or that happened with my profile but when I hovered over the email, it wasn’t a LinkedIn email. I have been blocking but I just seem to be getting more emails. Then a sex site has my own email address spoofed. It would say like Sexy something and when I block it, it says I can’t block my email. WTF. I just hope that whoever has my email isn’t getting emails that are from that address. I got hacked the beginning of this year and had to change my password and alias to something else. I’ve had this email since I got internet services. I have no idea how to stop it.

In my junk mail was an email from the pain clinic. For some reason, my phone is rejecting their phone calls. I don’t know why this is happening. She left me an email to call her to set up appointments. I am kind of nervous now with how I will manage therapy, PT, and now the pain management stuff. I really feel stressed about it as my calendar is suddenly going to fill up. I hope I don’t have another day like yesterday as I will be too tired to do much the next day. I have the pain clinic tomorrow and I also see my psychiatrist. Luckily, both appointments are at the same place so I am not going all over the place. It is an early morning appointment so I need to try and go to bed early. Not that it will do anything as if I go to bed too early, I will wake up in the middle of the night. I just set my alarm so I wake up early.

So I posted this morning that I was feeling like crap, having a bad day, was in a lot of pain, etc. in the group that I run for cauda equina syndrome. I get this righteous “positive thinking” person tell ME that I sure have had a good hour or good day. Um, sorry. It has been so long and with pain 24/7, I don’t remember when that was. I say so and she responds with some assumption and I tell her that she doesn’t know me so don’t assume anything about me and I will do the same. She gets bent out of shape saying she is going to tell other groups about this “1 man band” self-pity. I tell her the door is open and sorry I am not a positive person. I left it at that. But I am so fucking mad. I mean I get that some people like to think positive, etc. but don’t be telling me I should be doing it because it helps you. You like to think that way, fine. But it isn’t my cup of tea! I haven’t started in 42 years and doubt I ever will. I am a pessimist and you don’t like it, leave. Plain and simple. I don’t have time to deal with your positive shit that I don’t believe in.

I am glad I am seeing my psychiatrist tomorrow. It has been a month since I saw her. I kind of like that I am not seeing her every two weeks but I miss her. I email her but she doesn’t always respond. I hate when that happens. I just cancel therapy for next week. I just can’t deal with him next week. I have been going every week. He is out Monday because of the holiday (Columbus/Indigenous people day). I don’t know why they are calling it Indigenous People day as the Europeans nearly killed all of them and forced them off their land. This is still going on today in South Dakota I think. The government is allowing an oil company to drill and they protested. The government went against them forced them in jail and other horrible stuff. The company spilled oil, ruining the drinking water in the area, something the Indigenous people were protecting. Assholes they are. I still don’t think they have cleaned it up. Makes me so mad.

baking on a cold, rainy day

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

Baking on a cold, rainy day

I had a difficult sleep. My alarm went off and I was disoriented as I didn’t know what the noise was. I shut it off and waited a few minutes before getting up to take my meds. Then I went back to sleep, which was oblivion for me. I woke up and because it was dark and cloudy, I had no idea of the time. I hoped it wasn’t after 2pm and when I reached for my phone, it wasn’t. It was around 1230. Perfect. I went downstairs. Brushed my teeth and used the bathroom. Then I made a fried egg. I wanted to make the lemon loaf today. I took my time before committing to it. I was still tired and wanted coffee. I had bought the premade Starbucks iced coffee. I made that. One of my creamers was knocked down and leaked. There was nothing left in the container. There was only a little bit in it anyway so not a huge leak. I grabbed my half and half. I thought it was the opened one and it wasn’t. WTF. I grabbed the opened one and used it all. I opened the one that was new and put it back in the fridge. Least I wouldn’t have to struggle with the damn top to open it when I used it next.

After I had my coffee and food, I decided to make it. I got all the ingredients ready. I had no idea 8 oz of sour cream equaled a cup. I had opened one and I am glad I bought another one, which is sweet because I like having sour cream with my chimichangas. I mixed everything together and then I put the batter in the loaf pan with the parchment paper. As I was pouring the batter, one side of the parchment paper got jealous of not having batter so got in the way. Yea, so I had to scrap that off and then pour again. I didn’t flatten out the sides too well as the paper was indented in the batter. I didn’t really care. Popped it in the oven and waited for it to cook. When it was done, I let it cool and then put it on a rack. I took off the paper and one end had a huge indent. Looked like the butt of a chicken (as you will see in the photo). I made the glaze and it didn’t taste right. I asked my mother if this was thick enough and she said no. I added regular sugar rather than powdered as it tasted chalky. I made it a little thicker. The loaf had cooled off and then I put the glaze on. It didn’t stay on top! It all fell to the bottom of the cake holder. I suck at this. I didn’t eat it (though I wanted to) because my mother was making dinner and would be upset if I got full off the loaf and not her pork chops.

I went upstairs to relax. It was cold in my room. I played on my phone for a while. I mostly been on Facebook all day. I have decided to take a Twitter break right now. Last night I got really upset because of all the shit of the hearing and everyone had an opinion on the lying assaulting bastard. I hated that the fucking gov’t was interfering with the FBI, telling the FBI who it can and can’t contact. There were conflicting reports on this. One said it could contact people and then another saying it couldn’t. Both tweets were “BREAKING” and not by a news source so I don’t believe either. People seem to want to add “breaking” to their tweet just to get RT and likes. Pathetic!!! I do know the FBI was limited. I don’t know if that has been lifted or changed. And I heard that the Dotard is somehow involved in who and who can’t be talked to so I don’t know what to fucking believe. It is a damn circus. I find it upsetting because as a survivor of abuse, this is just triggering. This is why I didn’t report my abuse. And I will never come forward with my ex who raped me because it will be a she said kind of thing. It has been going on for more than a week now and I am sick of it. The Senate will vote anyway so shows how much they fucking care about the integrity of the man they are putting in for a lifetime commitment. But the Senate is so corrupted anyways it isn’t even funny.

I have no distractions until Friday, when baseball will be played. We have no idea who we are playing until the results of tomorrow night’s game. I don’t know who I want to win. Oakland has been tough all year with us. The snakes are the snakes but might be easier to beat as I don’t think most players have been in the postseason before. I am just worried about game 2 as OverPrice is pitching. He might wake up with an ass ache and decide he isn’t going to pitch or goes ahead and pitch poorly. I hope he opts out this year. I don’t want to see his face on my team anymore. He has been nothing but drama the day he signed the contract.

Sunday Blog 30 Sept 18

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

Sunday Blog 30 Sept 18

I am really upset, at this damn condition and my mother. I attempted to make this blasted lemon loaf. It is getting to be a huge pain in the ass. What I zested at the beginning of Sept was not enough. I bought more lemons as I needed the juice. I’m glad I did. I bought 4 and had 1 left over from my last grocery order. I juiced by standing as it was then only way to get the leverage. Then zested 3 lemons to get the 1 tablespoon I needed. Was tired and my foot started buzzing. I decided to not go through with baking. I told my mother and she laughed at me, basically saying I am a wimp. Sorry ma. I am not like you where resting for a bit helps to calm down down pain. I sat the whole time I zested all 5 lemons. Then I made supper (just heated up a burrito) and watched the ball game. My foot said FU not even an inning of watching the game and eating. I just want to cry. I feel defeated and ashamed because my mother made me feel bad. She suffers from chronic pain and doesn’t get it. Taking my breakthrough med.

I posted this to my support group. I then watched some funny videos and that helped to cheer me up some. I hate that my mother is not a supportive person. I don’t get how you can do this to your kid. She doesn’t support or accept me for being transgendered. I haven’t told her I am going on T. I want to see if she notices changes and then maybe as I become more masculine, maybe she will get a fucking clue that this is who I am not the picture in her head of me. I hate her for this. Yes, I will continue to be her caregiver and help her financially every month as long as I am living here. I just seriously need to find a place to accommodate my disability. A friend told me to look at the elderly services thing as that usually is where disabled people get help as well. She also said there will be a waiting list. I knew there would be, which sucks.

A weird thing happened when I woke up. I don’t know what time it was because I couldn’t move. I just laid there trying to move my legs or arms and they stayed where they were. I could open my eyes and look around but that was it. It took a while before whatever it was wore off and I could get up to pee. I am lucky I didn’t wet the bed as it was a while before I was able to move again. It was 1244 when I looked at the clock on my phone. This never happened to me before. Usually I wake up and don’t want to move but I am able. This was the first time I wasn’t able. I don’t know if it was sleep paralysis or what. I see my psychiatrist Friday and will tell her about it. I just hope it doesn’t happen again. It was really awful to just lay there not being able to move. I have heard of this happening to people. I don’t know if it happens during the night or when they wake up or what. It might have been that I was too tired. I know I had a pillow between my legs while I slept. When I did get up, I found the pillow on top of my bed. I have no recollection of moving it. I know around 8 I woke up and took my morning meds. That is the last thing I remember before waking up again and not moving. So weird.

Painful Saturday Blog 29 Sept 18

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

Painful Saturday blog 29 Sept 18

I woke up before 8 as bladder said so. I went and when I came back to my room and in my bed, my foot exploded. I took my morning pain meds. I waited a half hour and the pain didn’t calm down, I took a breakthrough med. There wasn’t a hell of a lot that I needed to do today but having pain that early in the morning was not good. The pharmacy wasn’t going to be open till 10. That gave it some time to settle down.

I made breakfast. I was going to make scrambled eggs and make it into a burrito. However, soon as I put the butter in the pan to melt, I forgot the scrambled part so had country style eggs. I put cheese in it and on the burrito tortilla. I barely finished it. It always makes me so full. I decided to make coffee. I ended up spilling it on myself. I went to take a sip and I tipped my cup before it reached my lips. Oops! So after I finished the coffee, I decided to shave and shower. My back didn’t like it. By the time I was finished shaving, I had to sit down. Whatever my brother in law did to the water control changed the hot/cold settings. I had it on half way and the water was warm so I moved it over a little bit more to get hotter water. I hate when it touches things because he always fucks things up.

Showering was fun as I had to sit down every 3 minutes or so. It wasn’t just my lower back that was hurting, my upper back was also cramping. I have no idea why this is happening. I hope when I go to the pain program they can figure out why this happens. I went upstairs and got dressed. I didn’t put my PJs on as it was after 10 and I needed to go to the pharmacy. I rested for a bit. Then I didn’t know what to wear, jeans or shorts. It was 65 degrees out so I opted for shorts. I was glad because I was halfway down the block before I realized I forgot my scripts at home. Do’h! I was sweating by the time I walked back to the pharmacy. I have no idea why I was sweating so much. It wasn’t really hot out or hot in the store. I guess the exertion of walking just makes me sweat, I don’t know. I had my cane with me because I didn’t want to wear my air cast for my sprain.

I came home and thought I would need another shower. I took off my shirt and it was soaked. I dried off and just rested. I wasn’t in too much pain. The pain meds were working. Around 1230, I got hungry again so made some bacon. I always use at least a quarter pound when I make my sandwich. I love bacon. And this time I didn’t get a pound of fat like I did last delivery. This was decent cut.

I came back to my room and my foot again flared up. It was about 4 hours after I took my meds. I waited to see if rest would calm it down. Twenty minutes later I was still hurting so I took another BT med. While I was waiting for it to work, I was reading Twitter. The game was on but it was on Fox and I hate that network. I didn’t feel like listening so just read Twitter. I read a thread about how an author who wrote about a princess hero keeps getting asked by educators, librarians, and parents when she will write a book about a boy hero. Her response is that there shouldn’t be a gender associated with a book and there are boys that like this book. But in the adult world, they hate to see that so make the assumption a boy hero is needed. It got me thinking about my books and why they are not selling well, if at all. I came up with this thread (a thread is a string of tweets that relate to what the Twitter writer strings together):

I was reading a thread about an author who wrote a princess hero and teachers/librarians/booksellers kept asking questions about when the author would write something for boys. The author said that the book was a book not a gender type thing. It got me thinking of my books. They haven’t been best sellers and I know part of it is that I need to promote them more. But family members have asked me to write happier books. I am not a happy person. I write the darkness that is inside of me. Some people can relate but most judge a book by its cover. It deals with #mentalillness, forget not touching it. It deals w #suicide not touching it. Why are things so scary for people to read? I share my pain so others can possibly understand and know they aren’t alone. I let the darkness out so it doesn’t stay inside to eat me up. Yes what I write can be scary to others. I guess I can relate to the author but on a different level.