bad night of sleeping

Bad night of sleeping

Last night I could not sleep at all. I didn’t go to sleep till around 7 am. It was too hot and I was trying to get it to be cold but every time I laid down, my brain was racing with a million thoughts or thought about things in the past. I tried to calm down but nothing was working until I turned on the whisperer machine and took a bunch of Neurontin. I then used my shoulder as my pillow while I slept and must have cut off a nerve as my arm was very painful when I woke up. The pain in my shoulder went from front through the back, though if you pressed on the back it sent shockwaves down my arm. I didn’t have use of my right hand for a bit. Now things are slowly getting back to normal. I shaved my head and washed my face. I should have taken my shirt off but I didn’t so it got all wet. I had to change.

Friday I gave my barber the post cards for my books. It was slow so we chatted for a bit. He is really a great guy. I told him I was keeping my sides shaved and he said he knew. I said I fucked up the back and he said it will grow out in two weeks. I said three days and laughed. He did too. The T is making my hair grow faster though the facial hair is still slow to come in.

I might make cookies today if my arm goes back to 100%. I really feel for the people that don’t have use of their arms. It is terrible. Just trying to make a cup of iced coffee was a bitch. I didn’t know how to sit because pain was going down my arm into my numb fingers. Man I hope that doesn’t happen again. I looked at my pillow when I came back to my room and it was smooshed against the headboard. No wonder I had slept on my shoulder, no pillow! I think I need to dust off the body pillow and use that again. I slept really well with it but it takes up so much bed space and really splits the bed in half.

Things are ok between my mother and I, for now. I really want a cat and she said no so i am really sad. She still doesn’t think i am a guy so purposely uses she pronouns and then says well been calling you that for 40 years bullshit. She doesn’t try. Over Christmas after I corrected my brother in law’s mother on what my name is, my mother told her this. I was feeling lousy and didn’t have a voice so just ignored it, not wanting to ruin things. It really upsets me that I don’t have a supportive mother. I see things on FB all the time about your mom always having your back and being a friend, etc. I hate the woman. She has never accepted me because I am not what she imagines I am or should be. Very tough to live with her but i don’t have $$ to move out so. We each respect our own space. Because I have not been sleeping well, we have different eating schedules so we don’t have meals together anymore. I think that bothers her but I usually eat in the late afternoon and then she eats two hours or so later. I am not hungry then. Then I just make whatever if she doesn’t cook anything.

I have my shot this week. Still no major changes though I have notice my voice is changing however slowly. No one is noticing though!! My face shape is more linear than when I first started. It looks like I have lost weight. I have lost 10 pounds but not sure if I lost more. I have been living on protein bars the last 24 hours. I want to make an egg and toast but with my arm being funny, I will wait. Nothing fancy just sunny side up. Really easy but I need use of both my arms. I think in an hour I will be okay, I hope. Or I might have my mother make it for me telling her not to put any salt or pepper on it. She uses too much to my liking!

As I am up, I am going to try and stay up but cookie making is out. I want to try and read my book on being a white racist. The book is called White Fragility. It really challenges your thinking. I was hoping to read at least two chapters but in the middle of the first chapter I read, holy hell. I never knew how much I was following the culture and being a racist without knowing it! Sure I have white privilege. I wish I could change that. I just got to be aware of how I am around people and what I say. This book is really helping to open my eyes. I wrote some quotes on my social media (Twitter (@midnightdemon2) and Facebook), if you want to check them out. You might have to scroll a bit as I was complaining about not sleeping. I use Twitter as my complaining board because I have no one else to talk to. I sometimes get a response, sometimes I don’t. But then it is in the middle of the night so people are sleeping while I am awake!

My lunatic aunt gave me a Christmas gift. My mother wants me to call her. I prefer to send her a thank you note to avoid speaking to her. It was a Starbucks cup with some coffee and something else. It was thoughtful. She knows I like Starbucks. I don’t like the coffee in the package thing but that is alright. It was the thought that counts, right?

Weird few days

Weird few days

Met with my psych today. I told her I think I’ve been hypomanic as I’ve been spending like crazy and have become really impulsive. I crash at night per usual or the next day. It would explain why my sleep cycle has been so off the past 2 weeks since lowering my dose of trileptal. So I am going to take another mood stabilizer, lamictal, and hope it does something. I have been having more flare ups which I feared might happen as before my 2nd CES, I was only on the trileptal. I was barely taking pain meds and nerve pain was controlled so I didn’t need gaba..that all went to hell when ces hit me again and my ankle became CRPS. But since the pain med change I was fine. Now that I have had to lower the trileptal. Omg holy hell. Flares hurt more. Like 7 days. They are getting harder to control. I am having to do whatever it takes to stop hurting. I know it will bite me in the ass but until the mood thing straightens out, I don’t think anything else will be helpful. I didn’t want to play too much with Gaba during the day because I could literally walk into walls or worse fall down stairs. I have to be careful at night with dosing and how much I drink because if I have to pee, well I am dozy. I’ve also become suicidal again. I haven’t told my therapist yet. But my psych gets it. I was in a bad flare and if I could move, I wouldn’t be here. Luckily, I am not planning again during times I am not in pain so that is good, least for now.

My insurance for mental health benefits suck. My therapist says it is the worst ones out there and he will be leaving the provider network sometime this year. So it will just be Medicare I will be billed. I had this whole idea just to use this insurance but now doesn’t look like it.

I am fucked because like I said I spent money I shouldn’t have. I have some cash but had to mail some stuff out so that has dwindled. I don’t know what the cost is going to be for lamictal or pain meds yet. It will be Monday. And I hope the starter pack is covered. I just have to watch out for rash. Great. I think I was on it before but the doctor was increasing it monthly and wanted me up to 300 mg. After 2 months I said fuck it. It would take 6 months to get up to 300 and I was on at 75 mg at 2 months. It didn’t help my pain at all, but then dose was so low. The most expensive meds are my psych meds. Monday I find out what my pain med is going to cost. Pharmacy can’t run it through until processing it. So dumb.

I see my pcp this month. I got to ask him what to do about this heel pain. I don’t know if it is plantar fasciitis or not. The stretches haven’t been helpful but I am going to try them using a belt. It is really inflamed and when I was using a gel insert I felt my foot turn causing the side where I have torn tendons to hurt. Needless to say, I am hurting. I came home and my mother was in the living room. We were talking and I turned around, nearly lost my balance. So now I am using the walker until things calm down. I am in my room and going to blog soon. Was supposed to go to my niece’s party but I can’t do stairs. Plus I don’t want to be around anyone as I am really irritable with the pain and hypomania. I don’t want a fight. Almost happened NYE as my know it all cousin tries telling me diabetes doesn’t run in our family. Her uncle and my mother, her aunt have it, my other uncle was diagnosed, though I think he has type 2 not 1 that my mother has and a lot of cousins with it. But it doesn’t run in our family. I had to walk away. She is so dumb and believes “drugs” causes schizophrenia as well as the naval service. So infuriates me. I feel bad for her brothers as one does have schizophrenia and the other bipolar disorder. No support at all. I’ve decided after NYE, I am done with them. The whole time I was surrounded by my cousins, I felt like an outsider. It was so toxic to be around them so washing my hands of them. My sister wants the nuts at her house, fine. I won’t attend. I don’t care. I had the worse flare NYE after cooking and partying. I was in agony because my foot was so swollen (also manic but whatever). I couldn’t move my big toe. It was so big. Just not worth the aggravation.

So that is what is going on. Hopefully I don’t have to change therapists because I don’t know if I can afford him once he is off the insurance. 20% is a lot when you are broke. I just have to uninstall Amazon lol fucking thing makes buying shit so easy. Lol

Blog of the day 2 Jan 19

Pain is gonzo, like totally out of control. Since lowering my mood stabilizer, pain flares have been increasing and harder to control. They also last longer. Had enough of this shit. Fuck. Now question is who the fuck do I tell and beg them to kill me or treat me? Not looking for more pain meds (though wouldn’t mind an increase) but mood needs to be controlled before I have to go back to hosp. Not sleeping, feeling depressed then wired so I am up 20 hours. If I sleep during the day it is my crash. Nerve pain right now is nuts. Bones are killing me, all of them in my ankle and foot. I am scared this is will be it. See psych on Friday and tell her I want to try one anticonvulsant again. Not ideal but shit something needs to be tried. The mood stabilizer I am on was the last of the last. I am fucked if I have to play trial and error again. But pain feeds mood and mood feeds pain so…hoping psych can be my gatekeeper (she is better at it than my chickenshit pcp).

Saw therapist today. Found out my private insurance mh benefits suck so will be staying on Medicare as he is planning on not being a provider of the private insurance. I will be billed $10 then when he leaves them, probably whatever the 20% Medicare doesn’t pay. I am glad this sort of worked out. I just got to change insurance with my psych since it is a new plan. Fun new year shit to go through. Lease my prescription coverage is the same for now. I goofed on the T. I could have had it refilled before the new year but because my sleep cycle has been awful. I never checked it or made note of it. If I made a mental note, haha it went out to pasture. I am glad I got a planner because I am writing it on paper. Helps to see it more. I use my phone calendar a lot but it connects to Big Brother so I rather have paper. I tried to see how much my pain meds would cost but the pharmacy won’t know unless they run it through. So got to wait till next week.

I wanted to write this earlier but brain was mush and pain was just starting to get ugly. I am so tired and hope I sleep tonight. Supposed to snow tomorrow. Just a coating so not bad. My mother wanted me to do an errand for her but it can wait till Friday when I am out again. Be easier for me.

I have been sending my BFF in Canada vids of me being a goof. She loves it. Then her hubby asks why she is laughing. Man it is gonna be weird seeing her in person one day. She loves my accent. I honestly didn’t think I had one. But I played what I recorded today and oh my god. Too funny. I’m glad I can laugh at myself.

Today is transition day 92. Voice is changing. Face is not as smooth as it was so maybe hair is coming (fingers crossed). I shaved my moustache a couple weeks ago and it is just coming in. Don’t know why the sides are thicker than the middle. Weird. I also noticed my sweat is smelly. Got to remember to wear deodorant. I don’t use it much because I am in the house but lately with stupid heat system, I am either too hot or cold. I woke up a couple times so hot I thought I was on fire. Hate winter. Think I got to open the window. Maybe that will even things out. I need a cold room to sleep. Here is a pic of two kittens. One is ginger and the other is black. The ginger has its paws around the black kitten’s head, like it is hugging. The black kitten face is like I know now let me go. Perfect depiction of my BFF and i. I love that pic. One day when we see each other we will make it. Haha

Happy New Year and all that jazz

Happy New Year and all that jazz

I wish my readers a Happy New year. I hope this year is better than last year.

As I said in my last blog, I don’t do resolutions and shit. I don’t plan goals or anything. I just go with the flow. I see a lot of people reflecting on this “good” things that have happened to them last year. All I can think about is how I spent most of the year in severe pain, not being listened to by doctors, being a ping pong ball between doctors, just to get a change in pain meds and then planning my death because I had enough. July I was going to end it and that was it. Well, my date came and I didn’t go through with it because I was too afraid I would be found and saved. It was kind of doubtful, but possible. I don’t think I went in the hospital last year or if I did, I don’t remember it as I am not going back, ever again.

I am still feeling kind of crappy and I have therapy tomorrow. I did sleep, finally, but it was at like 5 am or so. My med alarm went off but I didn’t take my meds. I took my mood stabilizer. I kind of been taking them twice a day but if I don’t take the morning dose, I just take the morning dose at night so I have it. I can’t risk becoming hypomania though I thought last night I was going to as I just was so overtired I was hyper. I was wired and not tired. Then I decided to go lay down and try to sleep and my leg jerks causing tremendous pain. There went sleeping. I think I was up at least 38 hours. I slept till around 4. I had something to eat. I made pizza but I only ate half. I am not that hungry. I downed a 16 oz Pepsi. I also had a cup of tea so I am sure I will be peeing a lot. I wanted to get some fluids in me.

I shaved my head again. I am addicted to the bald feel. I can’t help it. Except tonight I used a new razor and got razor burn. My head hurts lol. I didn’t shave my sideburns though. Least I don’t think I did or at least one side. I wanted to see how the bald with sideburns looks. I am experimenting. LOL

I was talking to my sister about my insurance situation. I thought it was going to be a quick, yes you can get rid of Medicare and have them as a secondary. Nope doesn’t work like that. Fuck. I just have noticed a big change in attitude with the docs since being on medicare. Seems I am not getting care I should and then PT has these “requirements” in order to cover a visit because I am on this insurance. I hate being treated like this. I don’t think it is fair that I have to do this extra bullshit because I have chronic pain in my ankle. Then I flare and who takes care of me then? Last night was the same thing after my leg jerked. I have decided to do whatever to lower my pain levels because I get no help from a doctor about it when I tell them repeatedly how things are going. Just because I am fine when I see them then, doesn’t mean later that night I will be or the next day. I am so tired of flares. Maybe that is why the suicidality has come back. I don’t see any other reason. Each flare seems to last for days before I am okay and then I do something like make breakfast and I am in pain the rest of the day. Or I barely move my damn foot/ankle and boom. Pain goes up and I can’t control it. The docs have NOT listened when I tell them moving my ankle causes pain. They don’t know what to do. I can’t walk. I am almost getting to the point where I can’t stand. I feel bad for the people in the UK who has to wait for months, maybe a year, for a doctor appointment just to be told there is nothing they can do. I would be jumping off the nearest bridge. Because by the time they get a doc that gets it, treatment is too late, like it was for me.

I am really depressed. I think that would explain the low appetite, mood being messed up, sleep issues, etc. I just happened to be in it. It came without a warning. But then it always does. Then when I finally realize what the fuck is happening, I am stuck in it and I don’t know how long it is going to stick around. Seems each episode has it’s own length period. I am never clued in as to what that is.

I accessorized my laptop. It was too plain for me. My laptop that needs to be fixed has a bunch of stickers on the lid.

I don’t know when I am going to get it fixed. I am going to try and get it down this year somehow. I am going to try to have this laptop out of my room and at a Starbucks table so I can possible write. Or maybe just get a notebook and write. I don’t know what I will write about. It all depends if this mood/sleep thing eases out. I have been so damn tired and just sleep the day away. I got to get up tomorrow to make some calls to my insurance. I am not sure if I have to call to have the insurance as a secondary or have it as a primary like I want. All because I am disabled this headache is there. I didn’t want to be on Medicare. It is just a thing SSD puts you on but it doesn’t cover prescriptions so what is the point of it, I don’t know. You can see your providers and stuff but you need a secondary insurance to pay the visit completely or have a copay that is smaller than 20% of the visit. I really don’t see that many doctors like I used to. Just my PCP or his colleagues, my psych, and therapist. I see my neuro once a year, unless there is a problem that can’t be solved using email. LOL I also see my repro endo doc which I guess I should call her my TG doc now. So 5 docs. I don’t know when I see her if it will be at the new clinic or if it will be at the same office. My PCP will be at a new office. I will be asking him for a new scripts a week early for my pain meds because I don’t want to come a week later for them. I don’t think that is a big deal but we will see. Bet he says no because he is an asshole.