Tag: complex regional pain syndrome

Catch up and a little today stuff, too haha

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

Catch up and a little today stuff too haha

So yesterday I didn’t write a blog because after my two appointments in Boston, I was tired so took a nap that lasted longer than I wanted it. Then it was game time and after I took my night meds, I was struggling to stay up till the 9th inning. I thought about posting a blog on my phone but I hate doing that because autocorrect sometimes either guesses a word wrong or substitutes words that are spelled right but think it is wrong. Then I feel bad when I read it because it makes no fucking sense. If you ever read a blog that has errors, know that I probably wrote it on my phone and please tell me so I can fix it.

I got pain after the game. Just getting into a comfy position upset my ankle. We won game 1, 5-4. I was freaking out because we were leading 5-0 and the snakes were clawing their way back. I watched one inning on TV and hated the announcers. I figured the Sox half they would talk about the Sox, nope. All Snakes. Fucking hate network analysts. So damn biased. I posted a pic saying I was worried after the score was 5-3 and people were freaking out. Um, hello, did you NOT see my post about baseball posts ahead, you’ve been warned?? God I hate when people do that, because when I respond baseball, they get all pissed off. Ya, well you pissed me off too by not paying attention. I mean, I was wearing my Sox shirt and hat and watching/listening to the game. Geez!

Yesterday’s appointment with the pain doc was useful and useless. Apparently, I am “using my meds appropriately” yet there will be no changes to how I use it or whatnot. But if I need adjustments, come back and they will make it. I have been seeing him for the past 3 fucking months for an adjustment and did not fucking get it so what the fuck!!!??? I asked him if my PCP can take over. He said ya, I thought that was the agreement and then he went on and on how we don’t do this because the practice is small and there isn’t enough rooms available for a large thing yada yada. What the fuck do you accept new patients for then??? So instead of HIM contacting my PCP, I will be asking when I see him this coming Friday.

I am 100% convinced this guy has no clue about CRPS or chronic pain because the stories he tells me I am just like he has no clue. He was telling me that he sees degenerative pain patients and they really can’t help but to try and control their pain. It “wasn’t my case” as even he has back pain while doing dishes after 5-10 minutes (the guy is more than 60 I say). No shit. I am no where close to his age and yet my back hurts after the same amount of time doing dishes. I have degenerative disc disease as well as cauda equina syndrome and four fucking back surgeries. If he read my record, he might know this. Asshole. I really hope I don’t have to see him again or find another doctor that is more compassionate.
After his appointment, I saw my psychiatrist. Told her what went on and she said that I was probably right as most doctors have no clue about chronic pain unless they experience it themselves or at least can empathize with their patients. We talked about the T shot and how my left thigh is still giving me grief. I didn’t put a lido patch on last night but I was close to doing it. She then asked if I had any mood changes. I said not yet but you will be the first to know. I told her how I need a new therapist, again. He just isn’t helping me. I asked if I had the wrong perception of a therapist and she didn’t answer. So now I don’t know where to go. The thought I searching for a new one is just too overwhelming for me right now. I want to stay within my radius as I don’t have a car. I thought about calling the LGBT clinic but that will be a pain weekly for me as the pain program is starting. It will take so much energy because it is such a walk to the clinic from the train station. Maybe after the program I can go there or somewhere close to there. But the thought that I have to do this again fills me with doubt that there is a good therapist out there that WILL help me deal with my problems and not just say will work on this and never do. I mean, it is one thing if I defer, as it is my right. Not so much for the therapist. They should want to actually help you with your problems not say yes we will and then drop the fucking ball.

I am reading a book called “Helping the Suicidal Person”. It is a very useful book and already I have a few books and articles to look up. Some I already have but she quoted new research and I am not on top as I once was. It also gives me insight into the therapist’s hesitations on suicide a little better. I wish I could say that for my therapist but he is always willing to listen to me but does NOT do an assessment or even safety plan. I mean I know what to do if I am going to act but am at the point where I just want to act rather than seek help because help hasn’t worked out!! It sometimes gets me more frustrated than be helpful to me. And unless I attempt, I am not going back to the hospital, least not the one I went to. Totally useless and very frustrating.

I have had any changes yet. I am on a low dose so it might take a while before I see them. Maybe after my second shot. I don’t know what to look for. I should probably look for blogs or something to help as a sort of guide but fricken WordPress changed their search so it takes a long time to look for blogs on a tag or a general word (don’t recommend that at all, it will take hours!) I know there must be an FTM group or something somewhere but I have yet to find one publicly. I know there is a lot of harassment and even death threats and abuse out there. I’ve been fortunate, so far, not to encounter it. I think it might send me over the edge if some stranger goes off on me for being transgender.

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.

Guess who…

by Midnight Demon, posted in Bipolar Disorder, Chronic pain, chronic physical pain, CRPS, mental illness, mood disorders, painsomnia, physical pain, transgender

I was able to shave and shower this morning. I had a ton of time before I had to leave. I took my time getting ready. I guess the bus I needed to take to the Square was delayed as the other bus came. I decided to take it rather than wait. I figured in doing so, I would have time to write when I got to Starbucks. I had to stop at the post office and it was busy. Goodbye writing time. The postal clerk didn’t even look where I was sending the cards to, just said I had enough postage and I went on my way. If they come back to me. I am gonna be pissed.

I got to Starbucks and ordered a sandwich, espresso, and lemon loaf. The sandwich had sausage but it didn’t taste right. I ate half and then dived into the lemon loaf. It was very lemony. I loved it. I just hope when I try to make it tomorrow, I can get the right consistency for the frosting.

After I ate and played on my phone. It was time for the train. I put another 5 bucks on my temporary ticket as my pass didn’t come over the weekend. When I got to my stop, the bus wasn’t coming for another 20 minutes or so. I decided to walk. My mother needed something at Walgreens so I went in to get it. There was a line for checkout. I waited and then left to walk to my therapist’s office. I got halfway there and needed to rest. I checked the time and had 10 minutes before my appt. I rested another minute and then went.

I showed my therapist what I wrote for the pain doc. He said it was perfect. I just hope the fellow and attending see the damn paper and read it. Then we talked about my anxieties that is going on for the week. Told him about how upset my mother made me yesterday. How she can’t accept me other than what she holds in her mind of me. Told him how my family has a pedophile they refuse to acknowledge as one. Then time was up.

I walked back to the station. I had less than 5 bucks on the card. When I got back to the Square and got on the bus home, I noticed it didn’t allow no payment for transfers. That was why I had to put so much damn money on this fucking temporary ticket. It was charging me the reduced fare on every bus and train I took. Fucker.

My legs were killing me by the time I got home. I’ll probably be sore tomorrow. My mother made dinner and after eating we both didn’t want to get up. We both hurt. I cleared the counter for her then went up to my room. Mail had came and my pass was in it. Weird they had my name change as the address but not on the fucking card! Ugh!!! Card doesn’t expire until 2023. Least now I can buy my monthly pass and not have to pay per fare.

I had some stuff from Amazon come in. A friend had sent me some eczema cream. It is a lower amount of colloidal something that I have so hope it will work on the patch under my eye. I stopped at my sister’s to talk for a while. We griped about our mother being ridiculous. I didn’t tell her that she laughed at me yesterday. I didn’t want to talk about it. I told her I’d be starting T Wed.

Hope I don’t flare tonight. Last night was horrid. I didn’t sleep till 330 am. Seems every time I got comfortable my foot or ankle or both acted up. I am really tired after all the walking I did. It is cold tonight so might have to put on the fleece blanket. I took it off my bed the other night because I was looking for something. I was working in an app on my phone when I accidentally disconnected my SD card. When I went to take it out, it went flying. Damn sucker was in the pillow case on my bed. I thought it was in the void in my room and I’m glad it wasn’t. I’d have to tear my room apart trying to find it. Luckily, I found the SIMM card on my bag for goodwill. Totally freaked me out. But all is right now. Wish the makers of Samsung would use a toggle rather than a pin thing to get the card out. Stupid design.