Tag: chronic illness

Lots of things and crashing after

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

Lots of things and crashing after

I woke up around 5 for some reason that I don’t remember now. I think I was in pain as I remember taking a pain med. I was hoping this was not going to cause me to be in bed all day as I really wanted to change my sheets. I fell back to sleep and hoped for the best.

I woke up with my med alarm blaring. I felt okay. I definitely needed coffee. I was hungry. That was the first time in three weeks I woke feeling hungry. Maybe my sodium was back up. I still feel better but kind of sluggish. I went downstairs after stripping the bed and then used the bathroom. I made breakfast and coffee. My mother wanted a cup so I made her one as well. I found this transgender article and was totally confused by it because it is not how I felt. But I decided to leave it where it was so I could read it later. After I ate, I put the throw in the dryer and then the blanket in the washer. I just had the sheets to do.

I went back upstairs to find my sheets. Before I put them on, I duct taped the corners of the top of my mattress so the damn foam topper wouldn’t go anywhere. I hoped anyway. My back was giving me grief. I had taken a shower before I got upstairs. I had shaved, too. I was sweating by the time I wrestled with the sheets. I was trying to even out the top sheet I didn’t bother to tuck it in. Then I got the comforter and the pillowcase. I put the comforter on and the pillowcase on the pillow. I couldn’t find the extra pillow case for the pillow that goes between my knees. I said fuck it. My back was killing me, I was wiped out, I felt like I was going to pass out and I did. I slept for three fricken hours. I guess the sodium isn’t as high as it should be. I know it is getting there as I am kind of feeling better. The big test is that I am getting my groceries tomorrow. If I survive that without sleeping for the day, I guess I am doing better. If I sleep all day, then I am still fatigued from the low sodium.

I read this article https://www.nytimes.com/2018/11/24/opinion/sunday/vaginoplasty-transgender-medicine.html. And it was a MTF. I honestly have not come across too many trans that feel this way. I certainly have never felt this way but I am not going to have phalloplasty. It is a complex surgery and I just do not want to go through with it. I just want to be flat chested and grow a beard. The things raised in this article scare me because I don’t ever want my hormones to be in jeopardy. I know that losing my breasts has to be dealt with. I have thought about it so many times. I mean, I am sort of attached to them. I wish they never were formed so I didn’t feel that way but now that they are sort of shrinking slowly, I am glad. It was a huge part of my dysphoria to have breasts when I didn’t want them. I know eventually, I will have to have top surgery and getting a good surgeon is key because I have heard horror surgeries where the surgeon doesn’t care and just does a bad job. Granted this was just in the UK, but I am hoping to find one in the Boston area that is considerate and doesn’t cause nerve damage or anything. That is further down the road as I am not there yet. I don’t know if I can talk about this with my therapist or not. He doesn’t seem to know a lot about transgender and I am kind of pissed because on the website I found him at, said that he did. I am not sure if I will have to find another therapist to deal with the dysphoria or not.

This female is having doubts about getting surgery to have a vagina implanted. I don’t understand why she would go through something like that if it is going to cause her more emotional pain than what she is already in. And I still cannot believe a surgeon would do it when there are doubts. I am not saying my transition has made me bone fide happy, but it has relieved a lot of the tension I was feeling not going through the transition and having to wait so much from the LGBT clinic and then I met my doctor and she is all like when do you want to start. Like seriously, in one visit, I am on hormones. I understand the LGBT taking things slow and working things out but I have known the last ten fricken years, maybe more than that, that I am NOT a fucking female. I am a fucking male. I hate getting misgendered! It really drives me crazy and Microsoft doesn’t recognize misgendered. How fucking lovely.

I have my shot this week. I am excited because I get to do the selfies and post a little bit about changes. Honestly, other than thicker leg hair, there hasn’t been much since last week. I keep getting complimented on the facial changes but I don’t see them week to week. Sure from day 1 to now I do but I think if I lose weight, it will be more prominent. I think I have lost some weight since I haven’t been eating regularly with the whole sodium thing. I really have just been sleeping a heck of a lot.

I see my psychiatrist this week. I am glad because I miss seeing her. I hate these monthly meetings but she is always a page or email away if I really need her. I don’t know what they are going to do about my mood stabilizer. I see my pcp Wed to get my blood redrawn to check levels. Then go from there. I really hate that I have to taper my drug but I don’t know if it is just to taper to a lower dose or off the medication entirely. And I am starting to feel that woozy feeling again, which means I am going to crash soon. I am over a 1,000 words. So I guess that is good for the day. God I can’t wait till this is resolved!

A day of reading

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

A day of reading

I wanted to finish Camino Island by John Grisham today and I did it. I had problems with my Kindle since last week as they did an update and they messed up my SD card, well, not really. The update made it so the Kindle didn’t recognize the SD card so my books were just not there. They fix it but when I tried to open the book yesterday for distraction due to pain, it said that I had to remove it and then download it again. I had no idea how to do that but it brought me to the store page. I already bought the damn book so I didn’t want to buy it again. I was so frustrated, I read a non-technological book. I read Trail of Tears for about three chapters. So today I was determined to read and finish Camino Island so I didn’t have to deal with the Kindle anymore! Least for a while.

I finished it and because I couldn’t put it down, I took my night meds late. It just kept me interested. John Grisham will do that. He hypes up the book in the last few chapters. I can’t wait to read is new book, the Reckoning. He says it is different than his other books. Well, hell, Camino Island was different too! No lawyers and their real cases that involve espionage and crap like the Firm. I really loved this book. But I have four other books I have started reading and would like to finish them by the end of the year. November is half way gone and I have finished just one book. I lowered my challenge to 22 books to read this year as last year I read 20 I think. I just tried to find my challenge from last year but couldn’t. It did say I read 14 books last year so I am tied. I want to read a few more. I don’t know if I will be able to read 22 but I will try. I didn’t think I was going to be alive so I held off on reading. I really wanted to give up. But my psychiatrist didn’t allow that to happen and got my pain meds changed so that I wouldn’t give up. I am not at a dose I like but my pain is better than it was. I wish it was lower than it is right now but fuck. Until the fucking stupid CDC guidelines are removed, no pain patient can be treated humanely. I get my pain meds increased, I am above the 90 milligrams morphine equivalent and that means paperwork for the doc, who doesn’t want to do that bullshit. In a way I don’t blame him but come on, fight back. It is the only way to help patients and prevent suicide. But that is just my opinion.

I did not stay on the regimen of fluid restriction today. I had two cups of coffee and I am still kind of going. I got a shit load of energy and my mind is like going in a million directions. I feel so much better than I have in the last three fricken weeks. Maybe my salt level is back up. But that will mean my Trileptal will be decreased so this doesn’t happen again. My psychiatrist who I emailed at like 2 am with my worries (thank you painsomnia for keeping me up till 330 am!) said that she and my pcp will discuss what to do. But I think I will be lowering my mood stabilizer that I have been on for 10+ years. I hope my mood doesn’t go like a roller coaster because that just sucks. I was in and out of hospitals every 6 months. I had to. My depression was awful and my hypomania crashed me so hard. I literally wanted to die so damn bad, like worst than any pain episode I ever had. I made attempts, nothing harmful but was I remember overdosing to get rid of the pain, the psychache was unbearable. If I have to deal with that AND the physical pain, I think it will kill me. I don’t think I can bear it. Psychache is awful. The worst pain imaginable. Not even morphine can touch it. Hell, if the pain meds I was taking at the time didn’t help lower it, I doubt what I am taking now will. It is on another level. I don’t ever want to feel that shit again. Just thinking about it makes me want to die so fucking bad. There is no other med for me to try for a mood stabilizer. I tried them all. Only this one worked for me. I HATE that it is messing me up physiologically that my meds have to be played with and I will probably have to have regular blood work to monitor my sodium levels. I hate getting stuck but it is what it is, I guess.

Only thing that sucks about today is that I didn’t eat any protein, just carbs. I couldn’t help it. I was in a fuck it mood and didn’t care how much I drank or what I ate. I have some burgers in the fridge I could eat. But I would have to go downstairs and today has not been a good stair day. Better than yesterday in that my legs don’t feel weak but the up and down movement hurts my foot/ankle. And the top of my foot right now is so damn sensitive that I know the slipper is going to be painful. I kind of just want to sleep but sort of know I won’t be able to unless I eat something. I ate carbs but it was small amounts. A table talk pie, then an hour later 5 cookies. Then I tried some soup that was disgusting and only had some bread with it. Had to throw the soup away. Then a small serving of pasta with one small meatball. That has been it. My food diary for today. I drank least a half a bottle of soda and a cup of tea. Probably 40 oz of fluid, 7 oz (210 mL) more than I should have. I didn’t pee buckets today.

I cannot remember if I took 600 mg of gaba when I got settled in bed. I hate when I can’t remember if I took meds or not. I really need to have like a PRN week med box or something. My throat has been sore off and on. I hope it is because of voice changes. Throat drops have been helping it. Also have been helping the nasal congestion, which could also be causing the throat irritation. My sister said she didn’t notice any change in my voice when we talked this morning, the first time in a while. She has just been so busy with stuff. I really missed our talks. I hardly talk to my middle sister and when I do it is always with her complaining about her job or her kids. That hurts me when she talks about her kids because I know they can be a pain in the ass and I know they are adults now but sorry, you raised them because you never cared for them. You expected things from them that they didn’t learn from you or anyone else and they should have.

The one thing that I really liked about Camino Island is that the author gave some tips about writing. I will try and use them if I ever go back to writing that story I want to write. Maybe when the pain is better and this fatigue is gone and my concentration is better. I have the time. I just need to go to Starbucks and try and write. Sounds easy but it is hard. I also think I need to face the wall of the store rather than the windows because it is so damn easy to people watch and as well as see the cars go by. I get distracted by watching the cars parallel park. It is funny how many times a person will go back and forth, pull out, back in and still not get it right. I see this every time and it is my distraction from writing! I write my blog in my room but it is when I can have the brain power after a long day and can form sentences without sounding like a 2 year old.

I wish I could have more days like I did today, with energy and brain concentration to finish a book because I had the time. I usually have the time but not the energy and brain concentration because of pain and a bad night of sleeping. I had 5.5 hours with 1200 mg of Neurontin. I have no idea how this day came about. I am grateful for it as it is rare. I probably should have made my cranberry cake but I think I will Tuesday. It will be in memory of my therapist friend that gave me the recipe and who died in Sept.

Sunday Blog 11 11 2018

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

Sunday Blog 11 Nov 2018

To the Veterans, Thank You for serving and your sacrifice!

Today is my Godmother’s birthday. I sent scheduled messages to my cousins, her caretakers, at 11:11 am. I was up till 0430 as my pain was really bad. Started at 8 PM and just continued throughout the night and early morning. I pretty much slept all day. It was kind of hurting me when I woke up and stood up to use the bathroom but wasn’t really bad. I decided to take a shower after I brushed my teeth. I had to go back upstairs as I forgot PJs. I was damn near finished when the pain got worse. I got a pop tart from the back porch and cookies. My mother wanted me to bring some bleach to the kitchen so I did that as well. I made my coffee and ate what I brought out. I love the Starbucks iced coffee I bought. I sent a message to PeaPod asking them why their price was higher than the store price. It is ridiculous that I have to pay fifty cents more for it so it could be delivered.

Last night I was going through my pics as I wanted a pic of my Godmother and I to post on FB. While doing so, I found some pics of some baking photos of a cake I was making. I remembered I got the recipe from my friend that recently passed away. I plan on getting some cranberries so I can make the dish. Oh shit, I actually can’t make it as I need the baking dish that my barber has. I will text him tomorrow so I can get the dish Tuesday. Buses are running regular schedule tomorrow. I have my appointment with my therapist so will leave at 1030 am so I can try and write a bit before leaving for his office. I haven’t been too successful catching the 1137 bus so maybe an earlier bus might do it.

It’s cold in my room so I checked the temp. It is 40 degrees F. Barometric pressure is 30.23, which is up from last night of 29.98. No wonder I am in pain. I know there is a storm on its way. Something is going to hit Tuesday. Weather is going to be bad and we might get snow, but I think they said it would be up in the mountains. We’ll see. I have been trying to keep track of the barometric pressure but it has been difficult. I have a page in my notebook for it but I sometimes forget to write it down. I am a bad record keeper.

what a week

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

What a week!

I am sorry I haven’t been writing as frequently as I have. I have just been so exhausted by the end of the day that I can’t think and all I want to do is sleep. I am not sure what is going on, if I am having another depressive episode or if the testosterone is plummeting my energy. I haven’t been eating, and if I do, it is only one meal a day. If I remember to eat, it maybe two. I just have no appetite but have not seen any weight loss. I usually don’t have significant weight loss during these low appetite days anyways.

I have been going to my appointments. Wednesday was therapy and it went okay. We didn’t talk much about anything. I just talked about anything I could think of to pass the time. It is hard when he doesn’t ask questions about how I am doing so I just pass things off like I am okay. I had to skip two appointments with him because of pain. My heel pain is plantar fasciitis. I saw a podiatrist on Monday as I couldn’t stand the pain anymore. He wanted to give me a cortisone shot and I said no. Everything is cortisone, but I don’t believe in them. There hasn’t been good data on them helping so I don’t even know why they are still offered.

Thursday I had the pain program. OT wants me to work on using the Recognise app. It is to help train my brain to know my foot is there or something along those lines. I am just to do the basic and to do it a few times a day. I haven’t done it at all today because I was so busy. PT wore me out. She had me walk for six minutes and then I had to do squats with a chair for 20 seconds. My legs were killing me. Then she had me do some stretching exercises for my calf. That set off a flare last night. I was not happy. I didn’t do that shit today either. I thought I might be able to while baking (see below) but I didn’t have a chance as I was in so much pain with my heel. I think I might have to wear sneakers around the house rather than slippers.

Today my mother wanted me to do an errand for her. Then I had to go to the post office to mail something for a friend. The half and half that I just bought curdled in my coffee so I had to go to Stop and Shop to exchange it. While I was there, I bought a few things. I wanted pulled pork so I got that and my probiotic orange, pineapple, mango juice. It is so good! Expensive, but good. Also got my coffee and some more honey, which was on sale. I had just missed the bus so I had to wait.

I came home and then started baking. I wanted to make pumpkin cheesecake bars. Thing was a bitch. I honestly don’t know if they came out okay. The mixtures tasted good, so they probably did. I was just annoyed because it said to chill or freeze but didn’t give a time as to how fricken long it was supposed to do that. The directions were poorly written. I complained to Tasty as I got the recipe from them but haven’t gotten a response. Then the topping was a bitch. You had flour, brown sugar, and butter. And in the video, you just whipped it up. Yea okay. It wasn’t easy doing as it was in the video. I tried using the mixer and flour went all over the place. I was getting so annoyed. My pain levels were astronomical. I just wanted to get this thing done so I could nap. I melted the damn butter and then mixed it. Then I sort of separated it into smaller pieces but not small enough to cover the pan. I didn’t care. I thought it would melt. It didn’t. I took it out of the oven and then let it cool. Instructions said to let it refrigerate overnight so I will have it tomorrow. I hope it is good otherwise, it is going in the trash. I took a nap for about 4 hours. I was completely wiped out to the point of passing out. The TV downstairs was annoying the fuck out of me. I was in mega pain. I put the whisperer thing on and fell asleep within 15 minutes. I hear my mother was on the phone with my cousin so I put my phone on silent in case he called me after. He sometimes does this and it annoys the fuck out of me. He will call me to see how she is and then call her to see how I am, fucker. I really haven’t talked to him in over a month.

Monday I am going to leave a message for the repro endo doc about my energy levels because they suck. Every little thing I do just exhausts me and that is unlike me. If I was working, I would be toast the first 4 hours. I just can’t seem to do things like I used to and I am not sure if it is the testosterone or the depression. But then, the testosterone could be affecting my mood so, I don’t know. I thought it would give me some energy, not take it away.

My CRPS ankle is killing me right now. I guess the events of the day have finally caught up with it. It was hurting while I was baking but now the pain is worse. I wish there was something I could take for the heel pain. Nothing seems to help that. I have been taking ibuprofen and it helps a little bit. I watched a video last night about how to “cure” plantar fasciitis and it said to use a tennis ball, take magnesium supplements, and something else that I don’t remember but wasn’t going to do anyway. He was a naturalistic doc so was saying to eat better and shit. Okay. Every ailment has that prescription. I have the magnesium as I take that for my spasms. I will try anything to lessen the pain. I used the tennis ball today, it hurt but it did decrease the pain. I can’t use it in the kitchen as the crevices in the floor make the ball go all over the place. I had to use it in the living room while my mother watched TV on full blast. UGH. I hated that but it was the only room I could do it.

For the first time all week, I woke up from my nap rested. I haven’t been sleeping great at night. Seems every two hours I am awake. I don’t know why. I feel like I am sleeping like a baby waking up every few hours. I haven’t been taking my extra dose of Ativan so maybe that is why. I have been taking Neurontin and that causes me to feel sleepy within an hour. I posted the pic of what I baked today. Will let you know tomorrow how it came out.