Category: CRPS

Resting Wednesday

by Midnight Demon, posted in blogging, CRPS, depression, FTM, gender dysphoria, mood disorders, recurrent major depressive disorder, transgender

Resting Wednesday

I did too much walking yesterday as my legs are sore today. I woke up late because I didn’t want to get up right away. I was tired because I again woke up in the middle of the night. I stayed up till 230 and then went back to sleep. My bladder kept giving me mixed messages when my 2nd med alarm went off, which reminds me I still need to give myself the T shot. I was getting urges and then I would get nothing. So strange. I finally got up around noon after the pre-op anesthesia called me. They called me an hour early and that is ok with me. They give me a list of medications/vitamins that I am not to take the day of surgery. The day I have surgery I am to have my T shot but I will have to give it when I am home from the procedure or the next day. Seeing as I am probably going to be home in the evening and I might not be too with it, I will probably give it the next day.

My aunt was over the house when I got up for my first cup of coffee. I told her I was having a hysterectomy and like my mother, she doesn’t understand why I am having it. She said it was on the inside so no one sees it and I told her that isn’t the point. I don’t want to worry about suddenly getting a period or what not. It is bad enough I am getting cramps and don’t know if they are bladder or uterine in nature.

I am keeping track of how many catheters I use in a day. I have three boxes left and I am not sure if that is enough. I seemed to have gone through a box quickly. It will be important to know because then I can have the NP adjust the amount on my next order for catheters. I sent my pcp a message asking if he got in touch with the surgeon about post op pain management. I want to make sure things are squared away now before the procedure. Just got a response and things will be taken cared of. I am so relieved. I was so worried there was going to be a hassle. But things have been worked out and I will get the pain meds I need for post op. I am so happy right now.

I am writing this in my kitchen as I wanted to have a cup of coffee while I wrote. It has been nice sitting in a chair while writing. Tomorrow I am going grocery shopping with my cousin. I just need to get rice and some more Gatorade. Maybe some more water too. It is kind of stuffy in the kitchen but there is a breeze coming in that is cool. I normally write my blog in my room. I wanted a change of scenery today. I took out a burger for dinner. Last night I had one with Swiss cheese and habanero honey mustard and it was so good. I might have a black bean burger for dinner though. I don’t know. It will be a burger either way.

I emptied my recycling today. Tomorrow is trash day so I wanted to take it downstairs. It caused a flare of my ankle. I am trying to avoid taking a nap, which is why I had the coffee and am sitting in my kitchen writing. I just feel so fed up. I have been in pain nearly every single day for the past two months. Always my ankle throbbing. Some days I can ignore it but days like today when I am tired it is hard to ignore. I start thinking bad thoughts. I think I will be better off dead. My thoughts just stay there. I haven’t gone to the planning of my death in some time. I am not that hopeless. I find that hope has a lot to do with my suicidal thinking. It can either be a passing thought or more invasive.

a new show on a hot day

by Midnight Demon, posted in blogging, chronic physical pain, CRPS, depression, mood disorders, psychache, suicidality

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

by Midnight Demon, posted in blogging, CRPS, depression, FTM, gender dysphoria, mood disorders, transgender

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.

bad news

by Midnight Demon, posted in blogging, CRPS, depression

Bad news

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.