A new show on a hot day
The Sox didn’t play the Yanks last night. Game was postponed due to Covid. Three players tested positive on the New York team. I was so bummed out. I watched a few episodes of Community. I once again had a difficult time sleeping. I kept waking up in the middle of the night. Around 530 I decided to empty my bladder thinking if I did, I would go back to sleep. There wasn’t much in my bladder but I was able to sleep until my med alarm went off. I stayed in bed for another hour before getting up to have my coffee.
I had to go to the pharmacy to pick up my meds so I did that. My mother wanted Sweet n Low but they didn’t have it. I ended up ordering it online. I wanted to watch friends when I came back to my room but it is no longer on Netflix. I saw the Queen’s Gambit and am hooked on it. It is extremely well done. I love chess so it is a good show for me. I watch three episodes back to back to back. I just took a break to have lunch and to write this blog. I don’t know if there is a game tonight or not. They are still doing tests.
I had a 2nd cup of coffee and feel wired. I hope it lasts so I can watch more shows. It is such a good distraction. I woke up this morning in pain but as I have been moving about, pain seems to have gone away. My ankle and foot still throbs, but it always does. I haven’t decided if I am going to shower or not. I hate taking a shower in hot weather when the house is a thousand degrees. I need to shave. I have been putting it off the last few times because I hate doing it. My back always cramps up after a few minutes and it is difficult to take a shower afterwards. Even while walking to the pharmacy my upper back was cramping like crazy. I got to see the PT about it. Maybe she can do some dry needling and fix it like she did my lower back.
Yesterday some people read my blog Don’t call me daughter 2 so I read it. It stayed on topic throughout so I decided to have it included in my book. I am up to 32 pages right now. My goal is to write at least 200 pages. I am writing about my trans and transition experiences.
I’ve been feeling depressed with intermittent suicidal thoughts. I read an article about a clinician who lost a patient to suicide 28 years ago. He talked about how after all this time, we still do not know how to prevent suicides from happening. It awakened in me the thoughts of suicide and the urge to carry on with my plan. I thought about my therapist and how she would react. Would she even care? Then I think about texting her and wondering if she would respond. I am not supposed to contact her in urgent situations. I am supposed to reach out to a hotline or go to the ED. Or I could just act on my urges and say the hell with things. Those are my choices. And only I can choose which one to do. It is a very lonely place.
Being triggered and other stuff
I was reading Twitter today and there was a post where a mother said her son was being teased by another boy at the pool for being a girl. It brought back memories of when I was called a boy growing up but then people would say sorry I mean girl. It would always hurt me though I never said anything. How could I? I felt like if I did, I would be corrected and told I was not a boy because of my genitals. I had some vivid memories come back and it just made me sad that I had to hide myself for so long.
I wanted to go out today but it was too muggy. I should shower as I don’t remember the last time I did. I want to shave my beard off. I had two cups of coffee to ward of naps. There still isn’t a baseball game until tomorrow. I am going to have a black bean burger for supper.
I’ve been feeling blah today. I just don’t know what to do with myself anymore. I should go to Starbucks and write. I miss doing that and Starbucks has opened up seating again. I am fully vaccinated so I should go.
I just texted my niece as to when will I see her again and she said she is spending the night tonight. Yay! I get to hug her and see her for at least 24 hours. I miss her so much. My nephew has been such a grump since he is unemployed. He barely leaves his room to talk to anyone.
Tomorrow I am meeting with my psychiatrist and surgeon, back to back appointments. Going to be a little stressful. I got a list of questions for the surgeon. I have a countdown of the days till surgery and I am both nervous and excited for this to happen. I also need to talk to psychiatrist about possible med changes. I was going to ask to be put on Pristiq but it can cause nausea and I don’t want to be nauseous. I might just ask for an increase in the citalopram as there is room there for some increase.
I watched a YouTube video on a hysterectomy. I was a little grossed out at first but then was ok. I wanted to see what was done while the procedure happened. It wasn’t as bloody as I thought it would be but I know I am going to be wicked sore, to say the least.
Today has been a rough day. It started at 6am when I woke up and couldn’t go back to sleep. I had to get up and shower anyway so I got up and had a cup of coffee. I then showered which flared up my back. That took forever to calm down. I didn’t want to take a Zanaflex because I knew it would make me sleepy. Once it calmed down enough so I could get dressed, I called an uber and went to my appointment. I was thankful I did this because I knew I wasn’t going to be able to walk to the bus stop and then walk to the building I needed to go to with my back being the way that it is.
There was traffic but I made it to my appointment in time. The doctor was running late. About a half hour after my appointment was to start, she called me in her office. I explained why I was there and thought the CRPS was spreading to my shin. She took a history and then examined me. She confirmed that it was CRPS and went over medication options which were not many. She said an SNRI might help the pain but I would need my psychiatrist to prescribe it as it is a psych med. I see him next week so will talk to him about it.
I feel devastated that the CRPS has spread. Right now it is flaring up because of all the walking I did today. In the afternoon I had PT and got dry needled in my back. I hope that this works in calming down the spasms and cramping I get when I try and do stuff.
Today has been a long day and it has been really difficult. I am angry that it took so long for me to get diagnosed with CRPS and now it is spreading because I couldn’t treat it within the time frame of when it started. I am now left to deal with pain every fucking day for the rest of my fucking life. Makes me so mad that I saw more than 20 doctors in and out of Boston and no one was willing to tell me I had CRPS because it wasn’t a typical presentation. My PCP at the time kept sending me to doctors to find out what was wrong because he just thought it was a mechanical issue with my ankle. All the while I was working my ass off, 50-60 hours a week between two jobs. Once I had to go into the AFO I had to stop one of the jobs and then four months later I was deemed disabled. And I still didn’t have a diagnosis of CRPS. That didn’t come until five years later. It took 8 fucking years to get a diagnosis. 8! A bone scan proved I had it. It was in my damn bones in my foot and ankle. Now it is in my shin which is the large bone in the lower leg called the tibia. I wonder if the new neuro would order a bone scan to confirm CRPS in the bone again.
I sent a message to my therapist and psych about the spread. I haven’t told my psychiatrist yet. I will when I see him next week. I hope by then the correct time I am supposed to see him is in the patient web thingy. Right now whoever does his schedule has me seeing twice and one of the times is booked when I am seeing another doctor.
In keeping with what I wrote yesterday about suicide and future planning, I tweeted this gem “As someone with lived experience, it is hard to let go of the familiar pain. It can be comforting sometimes because it is all we know. Changing or letting go of the pain can be painful in itself. It’s like letting go of a blankie. Hope this makes sense.”
I’ve had horrible insomnia today. I woke up at 1 am and could not go back to sleep. I was able to rest for about an hour. I’ve been keeping my bladder on a 3 hour schedule so I am not overfull and the urge to go isn’t horrible. It has made cathing easier. Because I was up so early, I decided to get my blood drawn for my Testosterone level. It just came back as 294 so I think my doc will be pleased. I have to tell her to give me two vials at a time because one vial just doesn’t work for the dose I need. I used my last refill today.
I made more appts with my PT today. She doesn’t have time next week to see me so I am off a week. I hope she dry needles me tomorrow in my back because today they were flaring big time. I was so miserable as my ankle has been in a flare for more than 24 hours now. I’ve been taking zanaflex around the clock to try and keep the spasms at bay but it might as well be a sugar pill I am taking for all the good it is doing.
I’ve been wicked thirsty today. It is hot and muggy. I had my Starbucks 4 shots espresso with soy milk. It was so good. That has been the only caffeine I have had today. I need to shower but I have no energy. I also need to brush my teeth. I meant to call the dentist today but I never did. Need to find out why I am having jaw pain.
I see a new neurologist tomorrow. I am kind of nervous. Hope she can help figure out the shin pain I’ve been having. Hope it isn’t a CRPS spread. That is what I am worried about as the area is swollen. Just hope she doesn’t want to change pain meds on me. I will be taking an Uber there as I don’t want to expend my energy too much as I have PT in the afternoon. Around noon I am getting my haircut. Got to keep the side and back buzzed at all times.