Sunday Blog 11072021
I didn’t do much today. I was talking with my mother this morning. She was complaining about how she has hairs on her face and she needs to shave. I told her she should grow a beard like me and that is when she said she didn’t understand why I grew I beard. I couldn’t deal so went to my room without saying anything. I watched an episode of Community and tweeted the situation. I then wrote my mother a letter that I sent off to my therapist before giving it to her. I laid out the boundaries and said that if she wants a relationship with me, she needs to basically respect my pronouns and name change. It’s been three years that I have been out to her and I have been very patient. But I can’t go on with the negativity and hurt.
I took a nap in the afternoon. I still am feeling sleepy. I don’t know if I have an infection or not but I seem to be peeing like every 2-3 hours. I am drinking a lot. I have been drinking a lot of coffee lately. Trying to avoid the afternoon naps. Sometimes I am successful. Most times I am not. Usually two cups a day is my limit.
I filled my med boxes for the week and as I was closing the morning med box, it slipped and tipped over. I had pills all over my bed. Fuck. I hate when that happens. I sorted out the meds, again. I had an egg sandwich for lunch. I haven’t had dinner. I am not really hungry. I also don’t know what to eat. I am thinking a bowl of cereal. I don’t feel like cooking.
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.
Suicide’s fall out, future planning
It has almost been a week since I last planned the end of my life. I didn’t go through with attempting because I didn’t feel like it. I didn’t want to fail again so I held off. Now I am future planning with my hysterectomy surgery coming up and thinking about going to the weight clinic so I can lose weight to have top surgery. This is a big deal for me because it is living. Doing gender affirming things is making suicide less of an option.
My therapist was curious about my future planning. When she said that, I got scared. I told her about my realization last night about how suicide will be on the back burners should I opt to go to the weight clinic so I can have top surgery. It would be stupid to lose weight and kill myself. I never thought I would feel this way about life and wanting something from it because I have wanted to die for so long. I still want to die, especially after the day I have had today. I’ve been in pain and cathing hasn’t been easy today for some reason. I have cut down the hours to three to cath because the urge to go has been so strong when I cath it is like popping a water balloon and pee goes everywhere. I also have been in pain since 4am this morning. My aunts were over and my mother deadnamed me. This was right before therapy. I feel so bad about things. I hate my life.
I am scared about this future planning and being suicidal. I have lived a dual life where I was planning to end my life yet carrying on like I wasn’t. Now the opposite is happening and I know that there are stats that go against me. I am not saying that this forward thinking is going to prevent my suicidal thoughts from happening. I am slowly doing things that make me laugh and feel good. My therapist recommended I watch the show Community and although it is a stupid funny show, I enjoy watching it. It takes me out of my head. When I woke up at 4 this morning I watched an episode to try and settle things down so the pain meds would work and I could go back to sleep. My bladder had other plans though. It kept waking me up every couple of hours to be emptied. And this is without drinking any fluids.
Suicide has always been my go to option when I am feeling bad, really bad. Now that I am finding more options to things, I am needing it less. It feels really, really strange. Losing weight will be a huge challenge for me. I am not ready to face it. I have to get through my hysterectomy surgery first. Once I have recovered, I plan on going to the weight clinic to help me be the weight I want to be. Just hope that this new living plan that is forming doesn’t get derailed by suicidal thinking again. After all, suicide is always an option no matter how much living I do.