FB post over last few days

Here are my posts from social media past few days. Still not feeling well to give a new version yet…

Nothing is worse than waking up with reflux and feeling there is something stuck in your esophagus. Tried everything I can think of to bring it down or up and nothing is working. Body a gazillion, me 0. Managed 3 hours sleep until fricken bladder woke me up. Took some melatonin. Don’t care if I sleep all day. Today is T shot so if I am up to it will post pics of transition provided I don’t look like shit.

Just when I thought my 24+ hours of being awake were over, foot started vibrating. Never fails. 20 mins after I lay down foot or ankle decide to act up. To say I am exhausted is an understatement. Got a theory…my brain must be so fried from the horrible heel pain (which is worse than the CRPS pain and NOTHING works to bring it down to bearable levels) it can’t relax. Every noise is magnified x100 so I jump, thus keeping me up. My radiator is the chief cause when it kicks on as it makes different fricken noises. And late at night when the house is quiet as I don’t have the noise from my Mother’s TV watching. Melatonin arrived today so will be trying it tomorrow. Haven’t gone downstairs for the mail yet. Hope it works or I’m gonna go insane

Been up for 40+ hours. Going back to bed now. Even though it is currently 145pm EST. Sorry I haven’t been writing. Thanks to all who have been reading despite my absence.

Insomnia strikes again

Insomnia strikes again

I had about a 4 hour sleep and had to go to the pharmacy to see if I could get my pain meds filled today so I didn’t have to go tomorrow. My mother needed her meds picked up so I went. I looked in the shaving section to see if they had any good after shave. They had a Nivea one that was on sale so I got that. I should have the one I bought on Amazon delivered today but want to try different ones and see what I like.

I left my BFF a video clip, like I do daily. And then she sent me some voice clips and I just love hearing her voice because of her Canadian accent. It is funny that we both like the way we talk. She was telling me she likes how my face has these expressions while I talk. HAHA just me. I sort of notice them while I am speaking but never thought much of them.

I am in a lot of pain today. The barometric pressure went up 0.22 points. And while I was walking home from the pharmacy, my ankle gave out on me. So it was the longest walk home in a while. The street that leads to my house always seems like a mile long but because my ankle was being a fuck, it just seemed like a thousand miles. I didn’t bring my cane because I am not that used to carrying it all the time. It was a short walk so didn’t think to bring it. I think if I was going to the Square or to an appointment, I probably would have remembered to bring it. I regretted it anyways. My aunt was visiting and OMG she an my mother ganged up on me on am I seeing the right doc and seeing this person or what can be done for you talk. I need my meds and need to rest in bed. That is what I need. Maybe my dose of my pain meds needs to be increased but I am too doubtful this will happen so don’t bring it up when I see the doctors anyways. And they NEVER ask if the meds ARE helping the pain. Because if I tell them there is a problem, it becomes a big deal and more work and I just feel like why bother. Even though that IS THE REASON I HAVE THESE APPOINTMENTS!!! It just gets so tiring to go and not be heard or be told I need to see another doctor because my chickenshit PCP is too scared to think outside the box and treat something that shouldn’t be so fucking difficult. He has the same damn license as the other doctor so I don’t understand the problem. If he is prescribing me my pain meds I don’t understand why he can’t increase the dose to see if that helps my flares but I always get talked down about it. Damn crisis and CDC guidelines. Fucking ruining chronic pain patients. This is why I want to end things this year. I have a semi plan building. I have a date but have yet to put any of it in action yet. I wanted to see if my psychiatrist was going to back me up and she isn’t so I really have no other choice. I can’t live like this. It has been a year. I tried, it failed, so why go on???

I just got my new baking cooling racks and my mother yelled “I got a lot of them”. I said yea and they are small! These are bigger! The new after shave balm I bought has a nice scent to it. So now I get to choose, Nivea or American. Going to trash the Gillette one. It burns when I use it, probably because it has alcohol in it. Going downstairs to retrieve the box has really flared up my ankles. So I am going to pop some gabapentin and hope to go back to sleep. My mother is making vegetables, which she will probably have for supper. I don’t like rabe so will have either chicken pattie or cold cuts. Whenever the pain goes down, I plan on making breakfast burritos and freezing them. They will be a nice thing to have and easy to reheat on days I hurt too much to want to cook.

Night of horrible, excruciating, pain #CRPS

These are my posts I have made on social media tonight describing the infuriating pain of complex regional pain syndrome or CRPS (formerly known as RSD). One of the paragraphs is to my wonderful, understanding psychiatrist which explains the vein popping of a flare. I don’t get the normal discoloration of CRPS. I get the swelling and pain and allodynia. This is my 2nd night of not sleeping. I’ve maxed out on meds except one, ativan which I shall take shortly. Hopefully it relaxes me enough that I can lay down and sleep. I really hate nights like this but a storm is coming so will be hurting all weekend. Barometric pressure has been so up and down, I can’t keep track of it anymore. It is painful when it like this. Not only do I flare but my joints stiffen and spine aches from arthritis. No one understands the battle so I try and be as descriptive as possible so some understanding can be understood.

Was just sitting in my bed leaning back on my headboard as ankle bone pain course through every bone in my ankle. Then all of a sudden went down through all my foot bones and I started laughing. This has never happened before. One or the other but never both and I am so deliriously tired I don’t care and so I am laughing because of the pain. I’ve used more pain med this month so I got to ration what I have left. Hahahaha oh lordy. Gonna be a fun night and a storm is coming. Wonder what levels of pain that will bring??

Fucking pain. Right where it feels like a knife gutting me up my foot, veins are popping up in a group. Foot still being crushed by unknown entity. Bones hurting severely. & it is midnight. 1200 mg gaba taken. Another hour maybe a BT med. After that, who knows…

haha CRPS is driving me crazy tonight. Every bone hurt in ankle and foot. Then I have a stabbing, gutting feeling where my veins are all grouped together popping like crazy. All blue from being together. Fun fucking syndrome nothing is working. Just taking the rest of the bottle of gaba and call it a night.

Losing the battle with pain. Feel like I want to pass out and pain laughs, and goes up more or hits another area of foot or ankle or both. Nuts. Suicidal ankle pain has started. Fuck. No sleep tonight after no sleep last night. Fuck.
Pain is off its kilter tonight. 2nd night in a row. Nothing is working. Haven’t taken 2nd dose of ativan yet only because I’ve taken high doses of gabapentin. Foot is being crushed. Malleolus is being hammered. And the suicidal ankle pain has started. Veins have converged so I now have a blue tint to my skin because they are popping up. You can see every vein in my foot as to how flared it is. Haha next time i need blood drawn they can use my foot. Haha ouch.

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?