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.

Book gone live and other Monday things

Book gone live and other Monday things

I have no idea how many hours of sleep I got. I had a rough night plagued with suicidal thoughts, deep depression, physical and emotional pain, and restlessness. I know it was probably dawn when I fell asleep and then my alarm went off. I was so rushed because I had about a half hour to get ready before the bus came. I forgot to take my morning meds. I ended up taking the Trileptal when I got home from therapy.

I didn’t have that much funds so it was just a reward drink I got. I wasn’t hungry and I forgot to bring a pop tart with me in my haste. Wed I hope to have more time as I don’t have to leave early as I won’t be going to Starbucks. I will just have coffee at home before leaving. Therapy went okay. We talked about how my bladder is stubborn, my losing weight from loss of appetite, and editing my second book and then re-publishing it. OMG what a fucking hassle that was. Createspace joined Kindle so they are the same right now. And the stupid thing format was worse than Createspace. I couldn’t add a blurb about the author. I had to redo the thing to get the damn back cover blurb changed. Then I forgot to order a proof, which I am so mad at. I had hit click too fast. Amazon at least gave you the option before the final click! Then I check the website and my book is discounted by $15! WTF. I couldn’t believe it. And only 1 is in stock, which is bullshit because they print them as they are ordered.

On the way home from therapy, I went to the grocery store to use the last of my food stamps for some steak and coffee. I really like the iced coffee. No mess, just pour and serve. Easy. My mother is sick. I have no idea where she got it from as she has been home the last few days, unless she got it from her sister, I don’t know. I just hope I don’t get it. I made myself a steak and cheese sandwich and then what my mother wanted for dinner. I then went upstairs and rested and all hell broke loose. My foot yelled at me and my back was crying. I wanted another sandwich, though. I waited for the pain meds to kick in and when they did, I went downstairs. I gave my mother some cough drops and then made the sandwich. I didn’t use as much pepper this time. I feel a little better now that I have some decent food in me. I have enough steak for 2 more sandwiches. My mother doesn’t like steak so it is all mine!

I got to order more copies of the new edit next week when I get paid. My friend in Canada wants one and I think I am going to recycle the ones I have. I will just order about 6 copies as they aren’t flying off the shelves anyway. I don’t think I have posted to Facebook yet. I got to check my page. Sometimes I post things twice because I forget I posted. Or I think I posted but it was really on Twitter.

Editing, therapy, and other bullshit

Editing, therapy, and other bullshit

I had a good therapy session. We talked about my father and the day he died as well as other stuff he loved to do to make my life miserable. We didn’t end the session on a good note so I was feeling perplexed. I walked to the station, thinking about the things we talked about and decided I was going to get a steak and cheese sub for dinner. I have to remember to bring my inhaler with me now that it is freaking cold. My lung passages doesn’t like the cold air and I have been wheezing and coughing. I came home feeling like shit. Both feet were hurting. I had to wash my jacket and I figured I might as well wash my scarf and hat, too. I don’t know when they were washed last. The jacket smelled so it has been a while.

I went up to my room and texted my middle sister. We talked for a bit. I didn’t tell her how awful I have been feeling. I kind of wanted to but held back. I told my mother I didn’t want a party and she was like what about cake. No one likes the fucking cake. It goes to fucking waste! So I told her to make cupcakes instead and then people can pick it if they wanted to. But I only want my sisters and nieces and nephew. No one else. I guess that was a compromise as I really don’t even want to. I hate my fucking birthday so much. I really wish I wasn’t born some days.

I played with my phone saying I was going to edit my book and as I reached for a long sleeved shirt because I was cold, my damn foot went berserk. Fucking great. I had just taken a breakthrough pill like 10 minutes prior. WTF. My feet were cold so I carefully put my throw on then got my heating pad and gently put that on. Foot is still hurting but heat sometimes helps so here is to crossing fingers. I got my book and my axing tools (highlighter and pencil). I read a few chapters and one chapter got me. I was like shit, I wrote this? Sometimes I am amazed at what I write and other times, I am like that is such shit. One story, I axed a paragraph. I am just barely over 32,000 words for this book. This will bring me under 32,000. Just wonderful. Short story book is short. It is only around 124 pages, which includes the copyright page and title. Maybe I can find a blog or two I can add. I have done a lot of writing since then. But I want this book out by this weekend. I don’t want it sitting around because writing is hard. I worked on this book for two years and after 6 months of not coming up with anything new, I just said fuck it, I am publishing it (after I briefly edited it).

I know I am going to flare tonight. I had to walk to my therapist’s office because I missed the bus and I didn’t feel like waiting 20-25 minutes for the next one. I could walk there faster than that. So I did. And then I walked back. My heel is killing me for some reason. I don’t think it is liking the gel thing I bought anymore. I might have to do without for a while and see how I feel. But right now my CRPS foot is yelling at me. I just stood up to get another Powerade and OMG it screamed. Actually both ankle bones and foot screamed. I was going to take my Neurontin at 9pm but I am taking them with my night meds at 8. Fuck it. I am hurting and I know it is going to be a rough night. It will be a miracle if I sleep before midnight. Just hope tonight isn’t a fucking Christmas tree lighting up night. That is when different parts of my ankle and foot hurt with different pains all over and kind of switch from one area to another and then back again. FUCKING SUCKS!!! I never know what kind of weird pain I am going to be in.

My med alarm updated. So because I have two alerts in the morning for the different meds I take, it cancels out the noise. It will go off and then shut off. I think I will have to take one of the meds off the alert as I take all three together.

An hour ago, I had an anxiety attack which was an hour and a half after I took my night meds which includes Ativan. I knew from last week, it was the beginning of a pain flare. Yup. Suicidal ankle pain has started. I just want to fucking die. I have no idea when I am going to sleep. I am not going to edit my book. I will try tomorrow if I have some clear headed time. Fuck and I wanted to bake cookies tomorrow. Fuck this sucks!!