Bad flare ruined my day

I had another bad pain night. I had to leave the house early 1) to avoid the high heat and 2) to get my scripts. When my med alarm went off, I wanted to throw my phone. I honestly didn’t want to get up. I used the bathroom after taking my meds and brushed my teeth. I didn’t feel like shaving my head so went to the kitchen. I asked my mother if she needed anything mailed or bought while I was out. She said no.

I got dressed and then went back to the kitchen to grab my cup. Soon as I got to the stairs, my mother called me back asking me to mail something. Really?? By the time I got my bag squared and my sneakers on, I missed the fricken bus. It had pulled up when I was about 20 feet away. I wasn’t going to run. I knew another one was coming and it did.

I listened to my music. I got to Starbucks and ordered my espresso and a sandwich. I then wanted something sweet so got a cookie. Wrote in my journal for a bit and then went into town. The trains were running okay. I got my scripts and I checked it before leaving. I also got some water as I was really thirsty. The heat had climbed up.

I decided to get my tickets to see my friend south of Boston. So I went further into Boston. The machine I usually get my tickets wasn’t accepting cash so had to go to the desk. There wasn’t a line. I showed my disability pass and got the tickets. I had to show my pass in order to get the half fare.

Went back to the trains and was about to get on an elevator when an older woman stopped me. She wanted to know where the train to New York was. I told her not here and told her where to go. I don’t think she understood. The place is confusing with all the different turnstiles and entrances/exits. I got on the elevator and went on my way. By the time I got back to the Square, I didn’t have to wait long for the bus. I went to the pharmacy and filled my meds.

I got home and it was really hot in the house. I was hungry but too hot to eat anything right then. I went to my room to cool off. When I felt better, I went to the kitchen and finished off the Mexican food from yesterday. It was so good.

Went back to my room. I stayed on my bed trying to decide what to do. I was wicked tired and wanted a nap. I played with my phone and relaxed on my bed. Holy fucking hell. Next minute my ankle just explodes. I am crying with severe pain. I didn’t even move my foot/ankle!! That was the weird part!! I was half lying down so had to remain still before attempting to move. Pain wasn’t resolving so I risked moving to take a breakthrough med. I was paralyzed in pain. I really wanted to nap but had no idea how I was going to move my body to my right side to sleep. I moved my leg and turned my body without more pain. Then my mother called asking me if I wanted raviolis for dinner. Fucking A. Seriously?? My phone was blowing up but I didn’t check it. It was either the T or Twitter and I needed a nap. Thankfully I slept for about an hour and a half when my mother called again. I didn’t answer it. I couldn’t move. I was in pain all over. Just breathing hurt.

The pain continued and still hasn’t let up. It is around a 10. Tomorrow will have to be shit day as I haven’t shit in a few days. I’ll be taking laxatives and fiber pills until I go. Just hope it doesn’t cause colon blow. Hope I can sleep tonight. Sox won their 8th game in a row. It was a good distraction until I stood up to turn the radio off. Now I’m in hell.

PT and where to go from there

PT and where to go from there

So PT killed me afterwards. Because the daft pain docs want more, my lovely PT recommended a functional program. Which is more than what she can offer me. I talked with her about it as I was anxious. I cannot stand being out of the house more than 3 hours and the program meets a few times a week for 6. It is multidisciplinary. I asked her what the goal would be as everyone wants me to try this but I am scared I’ll get kicked off disability if I am “too well”. She said it was more managing my flares better and other stuff I don’t remember. I’ll hear back from her within a week from the lady that runs it and try it. It doesn’t work oh well.
I am flared. Ankle was at least a 6 when I got there. Now a 12. She worked on my thigh so that is bothering me too. Heat is bad. Just waiting to cool off. I am out of breakthrough meds until tomorrow, I hope. Hugging my AC and then decide what I want for supper. I decided to order Mexican because I am in love with taquitos. I like the tacos from this place as well, even though it is overpriced. But it is good so I’ll deal.

I am kind of nervous about this functional program. It is down the street from me so not far from where I live. I just don’t want to commit to it and then not be able to do it or be forced to stay. I also need it to work around my other appointments. When my therapist comes back, I will be meeting him twice a week. I then have my psych appt every two weeks or so. It just seems like a lot and it is overwhelming me. I am trying not to think about it because I know that it will be a few weeks before the process goes through. I still need to get a note from the doc for it, after my PT talks to the coordinator.

My ankle is being such a brat. It was hurting most of the day and only got worse when I got home. I went to grab something on my bed and the movement sent shockwaves to my ankle. I got to wait it out as there is nothing I can take for it, other than possibly Ativan. I am wicked tired so I don’t know if I will stay up to listen to the game. They are back in Boston. I always say I don’t know yet somehow I do because I just got to know if they win or lose. Finding out the next day is not as fun as finding out the end of the 9th inning. The sun pretty much baked me and stole all of my energy. I bought Pike for the Keurig. I am running low on coffee. If I make it through this month, I will need to put extra funds for Starbucks. I only do that so I can get points toward a reward. I think I can get the rewards I bought at Walgreens but I am not sure. I have to look it up in the app.

Foot is driving me nutso!!

I’ve been trying to sleep since 2100. My mother wasn’t up in her room yet. I called to see if she was ok as with the AC on, I can’t hear things. She was okay. Her sugars had stabilized.

I got a blog that I read and wished I didn’t. It was about the lesbian protests or something like that in London during the Pride parade. What gets me is that anytime transgender is mentioned, it is almost always having to do with transwomen. I know I cannot be the only transman in the world. I know one came out in the Navy. I know there is another fellow in Oregon. We talk occasionally. We can’t be the only ones out there. So why isn’t it out there?? I just feel alone and invisible.

Then I started talking about suicide and someone tried guilt tripping me. I call it what it is and they say it is on me. Really? I will be fucking dead. How will I know what will happen to my family?? Am I supposed to be a ghost or something? Pissed me off.

My foot felt like it was in a pressure cooker. Then it felt like it was being crushed. Now my big toe is hurting big time. I call uncle, except I don’t think it works. I found my very last breakthrough med. Tomorrow I got to call and have them change the order and make sure the count is so I can take more than 1 a day. Otherwise the pharmacy won’t fill it and I’ll chop my fucking ankle off.

I will need a shower tomorrow. I hate showering. I need to shave my head to keep it bald. Also need to do a touch up of shaving because I missed some spots. My foot isn’t going to be happy. Then I got PT. Oh joy. Yes the curative physical therapy to increase mobility. This is interesting as I haven’t moved my damned ankle in 17 fucking years. It is a fucking joke. Oh and the damn pain clinic refuses to use CRPS. I have left ankle/foot pain. Can I bring a bat to my next appt and clobber them over the head?? Not to kill them, just to knock some sense in them or make them read my damn medical record that says why I need prescription pain medication. Fucking assholes.

I am done trying to say to them what I need. I have a better chance of winning the lottery. My foot is screaming. It is too late for gaba. I need to be up early enough to call the assholes and hope it doesn’t take a week to change the order. I can’t believe I was stupid and didn’t read it before I left. Ugh. Live and learn I guess.

Maybe 300 mg of gaba to calm some of it down. My PT is going to be unhappy with me. I’ve only done home exercises about 3 times. I couldn’t do it the 1st two days after our last session because my thigh hurt too much. Thursday I did it. Friday I was off to asshole’s office. Saturday I slept all day. Today I was in a fuck it mood.ok so what is that just one time? Oops I can’t count. We’ll just say 3 times. I probably am not going to see her anymore anyway. I really don’t want to. I think it is pointless to see her for my ankle/foot. I saw her before and I was in too much pain. And without breakthrough meds, forget it. I am tired of working through the pain.

I have no life. Just doc appts. I can’t remember a day I went to the Square just for fun, to have my espresso and write. Hasn’t happened in so long. Maybe February when I was trying to write the story in my head. It is gone now. Why bother writing it when I am going to die soon?

Part of me is trying to hang around. But with every painful flare, it gets less and less. Just do it runs through my head. Someday soon. I hope. Just do it…

hot and sleepy day

Hot and sleepy day

I woke up around 0100. I didn’t fall back to sleep until after 0300. I was playing with the AC settings so that it would be cool but not freezing in my room. I think I shut my AC off as I woke up hot before my med alarm went off. I took my meds and turned the AC on. I didn’t even check to see what the setting were. I just went back to sleep, hoping to sleep for a couple more hours and then get up to start the day.

I didn’t get up until 1330. I still wanted coffee. My mother’s sugar was low, though she didn’t tell me this. She asked for a pepsi but I needed to pee really bad so I used the bathroom, then she said forget it so I brushed my teeth. She was in the kitchen to gobble up some sugar. I knew what that meant, but I didn’t say anything. Freaking out wasn’t going to solve anything. I asked her if she wanted coffee and she said she did so I put the kettle on. I also made an egg as I was hungry. We had very little juice left and she doesn’t like my juice because “it is too sweet” so I planned on going to Stop and Shop. I have been craving a turkey sandwich so I figure I would get some turkey breast as well. I missed the bus and would have to wait an hour for the next one. I drank my coffee.

I checked the bus schedules to see which bus would come first. I thought I printed out both schedules but I printed out the same schedule twice. OOPS. I would have to wait for a half hour for the bus I printed out the schedule twice. I waited a few minutes and then got dressed. Then I went downstairs to get my bag ready. I inherited my father’s bag on wheels shopping cart. I took that. I should have taken a regular bag as well but didn’t think of it till I was at the bus stop. I could always buy another one when I got to the store. The bus took a long time to get here, even though it said 6 minutes. The sun was beating down on the stop, making it really hot. I got off at the stop and my mother called as I was in the middle of the street. I can’t see in the sun so waited until I was safely across before I got my phone out of my pocket. She wanted fricken eggs if they were on sale. For fucks sake! OK whatever.

I went to the deli to get the cold cuts. I wish I bought salami but forgot. Oh well. I then went to get the other stuff I needed. I looked at the juice my mother likes (from concentrate. I like not from concentrate.) I finally found a half gallon. I checked my list to make sure I had everything. My mother wanted the paper so I went to the front of the store to put it in my bag. The milk, juice, and creamer made the bag really heavy. I am glad it rolls away. Carrying it would hurt. I paid for my things and checked the time. The next bus would be here soon. I wanted to play the lottery but there was a long line. I left and waited for the bus. The bus driver was an asshole. People pressed the button but he didn’t stop. Then he yelled about it. So people pressed the button then yelled for him to stop. Jerk. I got off and was a sweating mess. I struggled to carry the items up the stairs. I went one step at a time and then called my mother to get the bag for eggs. It was light. She asked me why I bought jumbo and I said they were on sale. Then she said why the white ones. Because they were on sale. The brown ones were $2.39, large was $2.89 or something like that. I paid $1.89 rather than $1.59 like the sign said. Oh well. I didn’t tell my mother that. Hope I threw the receipt away because if she sees it she will get mad.

We had dinner and I am now resting in the cool air. I fix the setting on the AC to what they were before I touched them. For some reason, the energy saver doesn’t use the cool function. I need to get a new AC that is more energy efficient. This one is at least 10 years old, if not more.

My foot is talking to me. Sox won. Now I have the evening free. I want to watch a movie. I might watch Lincoln or maybe read. I don’t know. I’ll probably play with my phone until I get bored and go to sleep. I need to fill my med box for the week. Then I got to start writing good-bye letters. I think I will do that Tuesday. Some idiot on Twitter responded to my tweet about it. Wanted me to call a hotline. I did all I could from cussing her out. I deleted the tweet so no one else could respond to it. Still makes me mad because she doesn’t know a thing about me and comes out of the woodwork to say something that isn’t helpful. Bitch, go back to your happy place and leave me the fuck alone.