Pain and torture? NOT

Pain and torture? NOT

I had a difficult sleep. I had set my alarm for 0930 but I woke up in pain around 5 and couldn’t go back to sleep. I was really tired so I took an Ativan and finally went back to sleep sometime after 6. My alarm went off and I didn’t want to wake up. I stayed in bed. I didn’t fall back to sleep but when I looked at the time it was 1015. Shit. I had to hurry up and catch the bus to PT. My Bluetooth headset was working okay until I got to where I was going. Then it became all staticky.

I was 45 mins early but I rather be early than late. I played with my phone. I didn’t know what to expect. The PT called me in at the appt time. She went over my history and what the evaluator PT wrote in her notes. She explained that she does things differently. She works on my sensitivity and then my cognitive ways to deal with CRPS. It wasn’t going to be the typical therapy where I am given a bunch of exercises and told to do them. I was going to get homework but they were not hard. She said, to my surprise, I had some weakness in my right foot that I use for stabilization. She wanted to work on that as my left is weaker than my right. Then she tested my zones to see where my pain and desensitization was. She didn’t hurt me too bad as she didn’t want to cause a flare. She said that if at any time I hurt, to let her know and she can modify what she is doing or stop it all together. I thought that was sweet. She said that I am driving the sessions and it will be based on my pain and how I respond is how she works. Those were music to my ears. She wanted me to download an app to work on the left and right. It was an app that you had to pay for. It also was a large download as it took several minutes.

I left the appt feeling good about how things were going to go. I had to wait for the bus as I had no idea of the schedule. Luckily for me, the bus that goes to my house was the bus that came next. I didn’t have to transfer buses, which was nice. I went to Walgreens to pick up my prescription and get some lunch. I wanted some White Castle burgers. I bought 2 boxes and an energy drink. I had some sliders and then I was sleepy. My hip was hurting and I’m not sure if it was because of how I was standing waiting for the bus or the exercise the PT gave me. I laid down and my foot/ankle flared up. I was not happy but not surprised either. I took some meds to quiet it down and just laid down until I fell asleep. I didn’t mean to sleep so soundly but I did. I figure I would get out of bed when my med alarm went off but my bladder went off first. My hip is still hurting after my nap. I hope I didn’t do anything to it.

I took my night meds when I came back upstairs. Unfortunately, one pill fell into my Powerade bottle. I drank it all to get the pill out but it had already dissolved. First time that has ever happened. I am going to go to bed early tonight. I am just feeling completely wiped out. I was going to order a steak tip dinner but I’m not that hungry. My PCP’s office didn’t call me about my scripts and I am not happy about it. I left a message for them to call me and they didn’t. Bums.

frustrating day of pain, therapy, and other things

Frustrating day of pain, therapy, and other things

I slept pretty good after falling asleep after 0330. I woke up around 11. I was hurting a little bit but because it was almost close to 12 hours since my last dose of pain meds, I took them. When I got downstairs to use the bathroom and brush my teeth, my ankle flared. I was cursing but there was nothing I could do about it. I stayed up in my room until I got antsy and then caught the next bus to the square.

Starbucks didn’t have the steak and egg wrap that I usually get so I settled for a turkey bacon sandwich. They also gave me a 4 dollar gift card for my inconvenience. I thought that was nice. I played on my phone as I ate. Terrible news about Las Vegas. And because the shooter is white, they refuse to call it terrorism. Fuckers. Killing 58 people and wounding 575 is terror, I am sorry!! The flood of tweets between the reports and gun control filled my feed. I couldn’t read anymore. I took out my journal and started writing for a bit. I then wanted something sweet so I got up to get something. My ankle didn’t like that at all. In fact, it didn’t like me bearing weight in the slightest. Fucking fuck. I couldn’t go home as it was too late to cancel therapy or try to reschedule. I tried to finish writing the best I could and then when it was time to head to the station, I limped along. Getting to my therapist’s office was going to be a challenge.

I was hot by the time I got to his office. He could tell that I wasn’t ok. I told him I was in a lot of pain. I wasn’t too talkative, though I tried to have a conversation. My brain was void of thoughts. I told him it was hard trying to think. I then told him the progression of how things are going to go and he wanted to think differently about it. I said how and the jerk didn’t have any answers. Like seriously? It’s like saying you shouldn’t be depressed but you are going to be depressed anyway. Let’s just state the obvious. A few times I wanted to snap at him with his snide remarks but I held my tongue. We both fiddled with our fingernails. It was the longest session ever with him. Then he said at one point, do I feel like part of me doesn’t want to talk or something like that. I felt like walking out at that point. I mean, what is the purpose of seeing a therapist that can’t understand you are in pain and don’t feel like fucking talking?? I felt like crying at one point but I stopped myself. He just isn’t worth the tears. I am so glad I am not seeing him next week because it’s a holiday and he is off. I feel like just making appointments with him when I feel like talking. Maybe that will be easier than seeing someone weekly. I don’t know. I feel he is a good therapist, well, a good person to talk to but not someone to really help with my issues. He just placates me, states the obvious, and then doesn’t offer any ways to cope or deal with anything.

Despite not talking in therapy, I did tell him that someone had said that I should make my days count rather than plan dates (in response to my blog about existing). He didn’t understand what that meant. I tried to explain to him and then his reply was, what kind of response are you looking for. Something supportive and not criticizing?? Or even understanding that my days are difficult?? This guy really annoyed the fuck out of me on a really painful day.

Time eventually was up and I walked back to the station. I stopped at Starbucks to get some water so I could take my pain pills. I was really hurting and I still needed to stop at the grocery store to pick up some eggs for my mother. The train came soon as I got to the platform. I was glad. I went to the store and got the eggs. There was a line for the check out. Bad timing. I used the app for the store and didn’t realize it took off $5. I kept on wondering why I was only paying 56 cents for 4 dozen eggs. I finally accepted it and went on my way only to miss the bus by seconds. It was turning the corner as I approached the bus stop. The next one was in a half hour. I was not happy. My mother didn’t make anything I liked for supper so I was on my own. I didn’t want to eat late or order as I knew I wouldn’t be able to go down the stairs to get my delivery. I made some White Castle sliders. My ankle was mega hurting me and I was sweating like a pig because I over dressed. I thought it was cold out but it warmed up. I had to have my mother wash my back because I was soaking wet. Even my underpants was soaked. I couldn’t stand for a shower so I just washed up with a facecloth. I should have peed before leaving jerk face’s office. My bladder was not happy when I came home. It was spasming after I peed. Then a few minutes later, I had to pee again. It hurt. I hate bladder spasms. My mother put the eggs away.

After all was said and done, I went up to my room and took some pain meds and my night meds so I didn’t have to stand again. I don’t know if I will be able to sleep tonight. I am hurting pretty bad. I need to get up early tomorrow to make breakfast and then go to my PT appt. It’s my first session so I am not sure what will be involved. I then have to go to my PCP’s office to get my pain med scripts. I haven’t quite figured out the logistics of that yet. Depending on how I feel, I might take the orange line in and then catch the shuttle to the hospital. Then catch the red line back home. I’ll stop at Walgreens to have my meds filled. I will pick up more sliders for lunch. Maybe this time I will get two boxes as there is only 3 packages per box.

I hope I sleep tonight. I am really tired from being in pain. It’s such a fight every day. I’m tired of fighting. I can’t believe that in one week I’ll be changing my name and seeing the neuro specialist that I hope will help me. I know I’m not really fixable but if there is something that can be done to help ease flare ups, I’m for it.

I am a cookie monster

I am a cookie monster

I woke up around noon. I was hungry so I made a bacon and egg burrito. My mother and sister were in the kitchen as I cooked. We made small talk. My mother was making some apple dish in the oven. The house smelled nice with the spices and apples cooking. After I ate, I went up to my room and scrolled through Facebook. My sister made cookies in the shape of footballs so I took my recycling down and found she not only had those cookies, but chocolate chip as well. I was in cookie heaven. I made some coffee and had more than a few. My sister’s brother in law was over and I told him that I was changing my name. He didn’t know that I was transgender so I told him. We talked briefly about it. He wanted to know why I wanted to change my name. I told him I hate my birth name, always have. My middle sister will be going with me to the courthouse. I asked her if she could make it. She wants to know the time and I told her I need to call this Friday to set up a time. I will let her know then. I might use Uber to get there depending on the time. I really would like to go to the Square to get my espresso first so I could catch the bus to get to the courthouse. I can’t walk the few blocks to the street that the buses run. I wish I could but those days are long gone.

I came upstairs and a Lady A song started playing in my head. It’s been playing since yesterday. I put on the song and played the rest of the album. I checked Twitter to find out the score of the Pats game. They are losing by one point. Panthers are a tough team. Last week was a nail biter as the score kept going back and forth. Looks like this week it is going to be the same. I’m not watching it because my ankle is really hurting. I am trying to not take my strong pain pill. I’m not sure if that is going to be possible because I have bone pain.

Listening to the last game of regular season baseball. No score yet. Pats are now losing by 7 in the 4th quarter. Ballgame is going slow. I hate when there are more outs than hits. I asked my mother if she put my extra money in the purse so I can order pizza for supper. She said she wanted it, then argued with me about spending my money. Pisses me off.

I’m really hurting but I am being stubborn and won’t take the strong pain pill. I have been having severe constipation issues so I am trying to lay off so I can go without going into labor. It’s really straining my back to try and go. My nerve injury makes it difficult to get things moving so the stool just stays there without some serious pushing. I hate getting backed up. I have taken fiber pills today so I am hoping to go sometime today with ease. But it’s not an exact science.

Pats have tied the game. Think they will be going to overtime. I hate OT games.

UPDATE, Panthers scored a field goal (3 pts) so my Pats lost. BOOOOO

another month of existing

Another month of existing

Despite being suicidal for almost 16 days straight, I lived to tell the tale. I honestly don’t know what gets me through the hardest of moments when I am in so much pain and all I can think about is death. I think fantasizing my death has gotten me through, only because I was so immobilized by pain, I couldn’t act on my thoughts. Then the next day, the pain was down and I didn’t feel so terrible. I didn’t feel like ending my life.

Sometime in the beginning of September or the end of August, I thought that if I had 41 consecutive days of suicidal thoughts, that on day 42 I would end my life. If by some chance, I had a day that I didn’t think those thoughts, I would have to start all over. I kept a spreadsheet of the days. Some nights when I was in pure agony, I would bargain with myself saying just x many days more and then I would end it. I kept these thoughts pretty much to myself. I had texted my therapist this plan but we never talked about it. I don’t remember if I let my psych know either.

I don’t know what really changed that stopped the suicidal feelings from occurring. I still had pain every day and night. But after my PT evaluation, I felt like things could be better. I was sad that the days of me working were truly over because too much time had past for me to recover. I was diagnosed too late with CRPS, Complex Regional Pain Syndrome. Now I just want to be able to make pancakes without having to take breaks in between the prep, the mixing, and the cooking. Small stuff but it would be a goal. I left the PT office feeling a little hopeful that things might change for the better. It didn’t take away my suicidal feelings completely. I still thought about ending my life, but there was no urgency to it. I just put it in the back of my head.

Suicidal thoughts have become so much apart of my life that I can’t imagine my life without it. Will I my life end one day at my own hands? I don’t know. I think so and have felt that way for quite some time. Little things stop me. My nieces or nephew’s love and care. A friend online that needs me. Having a low pain day so I could get out of the house to have my espresso at Starbucks. Being able to shower, make breakfast, and then go out to do what I have to do. It doesn’t happen every day as some days I can barely get out of bed, either because of pain or my mood. Sometimes both. Sometimes a good word from my therapist or psychiatrist is enough to lift the heavy coat to make it through the day. I honestly didn’t think I was going to make it through September without making a suicide attempt. But I did.

Tomorrow starts a new month, with the same challenges. Hell, I have appts all this week with no rest days at all. It’s going to be hard. I hope it doesn’t set me off in a flare for days on end. The weather is also going to be cooler. If it remains stable, I should be okay. If it fluctuates more than 10 or more degrees, I am going to hurt more than any activity that I do. I have a lot of appts this month. I don’t know how that is going to make me feel, physically and mentally. Dealing with chronic pain every day is difficult to say the least. I have mixed feelings about this month. I hope that I survive and I hope that I die. We’ll see if I make it to Oct 31st.