Category: CRPS

thirty years of therapy and what I have learned

by Midnight Demon, posted in blogging, Chronic pain, CRPS, depression, mood disorders, suicide

Thirty years of therapy and what I learned

I’ve been in therapy since I was 15. After 30 years and 15 therapists, I’ve called it quits. Not because I was cured because I couldn’t get the care I needed. Not all therapists are the same. And even if someone has the credentials I am looking for, doesn’t mean it will work out. I have seen social workers, psychologists (PhDs and PsyD), psychiatrists, and psych RN. The first 10 I saw within the first 10 years of starting therapy. Each therapist I saw didn’t last more than a year. One resident I saw lasted three years, till the end of her residency, but she moved on and I didn’t see her again. I tried DBT (Dialectical Behavioral Therapy), CBT (Cognitive Behavioral Therapy), and the various psychodynamic therapies out there.

My suicidal career took up talk for the last 10 years of therapy, maybe more as it got more serious and I didn’t want to live anymore. I started researching into the different treatment options and found very little to help myself. The therapist I was seeing at the time was stuck in her ways didn’t want to adapt to what I wanted her to do in therapy to help me. It was frustrating. Then I saw a PsyD with the credentials and I thought yes! This is going to work out finally. But it didn’t because she didn’t have empathy and couldn’t give me validation when I needed it the most.

What I learned from my research into suicidology is that the person needs to tell their story of why they are suicidal. It needs to be heard by an empathic person who validates why they are suicidal. They also should appear eager to listen and to know more about the person, their pain and suffering. To find out where it hurts and to try and heal it the best they can. I can go on about things like perturbation, lethality, constriction, and psychache but those are just words no one uses anymore.

Living with pain— physical or emotional— for years is a traumatic stressor. The experience of living with pain evokes many of the same responses that being subjected to abuse or neglect does. — Dr. Glenn Patrick Doyle

I came across this quote while scrolling through Twitter. Dammit this guy always posts something when I am in the feels. He is correct. Pain does have the same responses as being abused or neglected. I have suffered physical pain consistently 24/7/365 for the past twelve years. Each time my foot or ankle flared up, I had flashbacks of when my back gave out ten years prior. I had to go through a series of checklists to make sure it wasn’t happening again, each time, nearly every single day. Once I had a diagnosis for the pain the checklist checking stopped but the feelings of the trauma didn’t.

My therapist who I just stopped seeing, asked me what I was looking for in therapy. But I didn’t have the words. As I am reading the book Building a Therapeutic Alliance with the suicidal Patient, I am figuring out what I need in therapy. I knew she wasn’t able to give me what I need. I am not really sure what I need. I know I want someone to talk to tell my story to. For them to listen, empathically and compassionately to what I have to say about why I am suicidal and why it has become my only option left to me.

a busy past few days

by Midnight Demon, posted in blogging, chronic physical pain, CRPS, depression, disability, FTM, gender dysphoria, mood disorders, psychology, PTSD, suicidality, writing

A busy past few days

I have a busy week with a lot of appointments. I had two today, back to back. Tomorrow I see my pcp to discuss my cardiac markers and a BP med. I am hoping she listens to me and puts me back on labetalol rather than another med. But if she isn’t open to it, then I will go on what she suggests.

I saw my TG doc today. She had a fellow interview me first. Things went well. The fellow tried to get me a 5mL vial of T but the pharmacy just filled a 1mL vial. I have enough T to last me the next few injections. She also referred me to plastic surgery so I could get a top surgery consult started. I am glad because my pcp never responded to my request from last week. The fellow also answered my concern about whether T had caused the dislocation in my shoulder. It didn’t. I am glad. She did say that because I had removal of my ovaries, I have to be concerned about my bone health. But I am still young enough that I don’t have to go for a bone scan. The only bone scan I want to do is on my shin to see if the CRPS has spread to it. I have been having severe pain for no reason and it is worrying me.

After my TG appointment, I had the chronic pain group, which had already started. I was about fifteen minutes late but they accepted me anyways. We had a good chat about families not getting our disabilities and I told them how rough it was living with my sister who triggers my PTSD often. I also came out to them as transgender and they didn’t seem to care, which I was glad about. We also talked about how our families don’t believe our pain and disability. It was a good group. I did talk about how my therapy session went and got support around it. There maybe future discussions about CBT.

I had therapy yesterday and we talked about my ED visit went. I told her I was freaking out over my lab results, thinking I was having a heart attack. Tomorrow when I see my pcp I am going to discuss what the lab values mean as having this marker in the blood indicates some kind of cardiac injury. I also asked my therapist if we could role play a bit about me asking for the blood pressure medication that I want so that I don’t get turned down. I didn’t want to come off as obstinate but I really think this med will be better as I have been on it before and had little to no side effects from it. We talked for more than a few minutes about it and I wrote down how to approach my pcp on this issue. I just hope I remember.

We then talked about how I feel we are divided and not on the same page about things. That is when she said to me “take the reins”. I was like what? She repeated what she said, adding that I was in charge. I was flustered. I couldn’t believe what she had said so I got my journal that has the notes to the bCBT book and shared with her what a structured session looks like. It had listed “agenda” and then went on to list other things. I asked the author of the book what is meant by this and he gave me a more descriptive outline of what the session looks like. I think there should have been an “:” to indicate this. So I went to my blog for the crisis response plan (Suicide Crisis Response Plan – midnightdemons7). This needs to be reviewed. In it, it said that if I get specific I should contact my therapist or psychiatrist. I should ask them if this is right or if I should just go to the psych ED. My therapist might not be available but I will bring it up with her when I meet with her next as that is when we will start with the new sessions I guess. She agreed to allow a new skill to be introduced and to practice it while in session. I think this is going to work out now as this seems more collaborative than what it was in the past where I spent the time just talking or not talking during session. I asked her if she was more DBT oriented or CBT. She said she was CBT so that will help a lot during the next few weeks. I am glad this is happening because I really felt like we were going on different directions. It just seemed like we would talk about stuff and then she would ask what is helpful but never follow up on what was helpful during the week or if I had practiced or done what was helpful. Mostly that meant me reading this manual for discussion. I felt like I was alone in reading it but it not going anywhere. I also felt like it was pointless to read if I couldn’t share what I was reading.

I have a busy week. Tomorrow I see my pcp and that is going to take a lot of energy. I wanted to get my hair trimmed but my barber had a death in the family. I contacted him today and he said his sister died. Her breast cancer had come back and it wasn’t a good prognosis. I am surprised she last this long. It was more than a year since she was diagnosed with this. I set up an appointment with him for Sat. Fri I plan on making his favorite dish, chili cornbread. I just have to get the ingredients. I will Thurs after my session with my psychiatrist. I will also ask him if I can contact him in an emergency as we have never discuss this before. There wasn’t really a need to as I really haven’t been in crisis since he became my psychopharmacologist.

By Sunday, I am just going to rest as I will need it. I don’t know when I will be able to read. I got hit with a flare up and couldn’t finish this blog yesterday. The flare was so bad that the bones in my foot and leg were aching very deeply and intensely. The pain in my leg is higher than it was and I fear that the CRPS is spreading. I want to contact my neuro and see if I can get a bone scan to see if it is CRPS or something else. I don’t think an X-ray will show anything as It only hurts when my ankle or foot is flared up and when I am resting on my bed. It doesn’t hurt when I put weight on it or walk on it. It is a very unusual type of pain when it comes on. I am feeling better because I got some sleep. I woke up around 0030 and had something to eat as I was hungry. I had honey nut cheerios. I emptied my bladder because it had been more than five hours since I last emptied it. I probably will have to go again as I drank the milk in the cereal and had some water afterwards. It’s 0130 now and I am not so tired. I might read the book for a bit until I am tired and can get back to sleep. My pain has finally settled down.

Saturday blog 22012022

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders

I was having a hard time last night. 4 family members were upset with me because I didn’t bring the recycle down. I had asked my niece to do it and she never did so I got the blame. I got called a hoarder and it really hurt because i know I am not.

Today I slept until my bladder was gonna explode. My sister was in our bathroom so I had to go downstairs to use my other sister’s bathroom, which meant not cathing because she doesn’t have catheters in her bathroom and I didn’t grab any before leaving my room. I had something to eat and coffee. I feel like I could go back to sleep. I actually went to bed around 7 last night but I didn’t sleep. I felt guilty going to bed so early.

I had a difficult day as I got my haircut and then had to go to urgent care for my blood pressure issues. I was having side effects from the blood pressure pill and the doc wanted to put me on a Holter monitor. I said no. My new pcp is going to see me Thursday to start me on the beta blocker lebatalol. But I got to be seen in person. At 0830. Yuck. Next week is going to be a busy week so i hope by Thursday I have some insomnia so I can go to the appt. Otherwise i could sleep through the appt.

I am going to try and shower today. I want to shave my head but don’t think I can do it. I haven’t brushed my teeth in three days. I am so bad when it comes to this stuff. My new toothpaste has become community property. I am not happy about this. I am so tired I just want to go back to bed. I took my morning meds when I got up at 2pm. That is really late to take my twice a day pain med. I just had a really hard time sleeping during the night. I kept waking up to pee.

a going off blog

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

A going off blog

I am just going to bitch about the problems in my life today because I have a therapist I can’t really talk to at times because she intimidates me. I have been slowly getting the recycle in my room together to be thrown in the recycle to be picked up tomorrow. It might seem like I am a hoarder but I am not. I just get overwhelmed and I don’t want the criticism that I drink too much Gatorade every single time I bring down the recycles. I have one bag of trash that needs to be thrown out. The problem is that the blood pressure medication that I am taking has been causing me heart rate problems. My heart rate went up to 156 and all I did was bend down to get something off the floor and when I stood up, I got wicked palpitations and heart racing. I sent a message to my doc that I want to be back on the beta blocker I was to control my BP. It was 142/94 today so the medication isn’t helping just causing problems/side effects.

I sent a message to my psychiatrist last night because I was so fed up with being in pain and being tired all the time because I am not sleeping during the night. I fought fatigue most of the day yesterday and didn’t nap. Last night was the same deal. I woke up around 0130 to pee and I couldn’t go back to sleep. I tried to stay off my phone even though I had messages. My psychiatrist wrote back saying that he supports me. I told him I hadn’t showered in days or brushed my teeth. Last night before bed I did brush my teeth. I haven’t done so today yet. I still need to shower. I stink because I was sweating yesterday. I also need to shave. My stubble is going to turn into a beard soon if I don’t.

My ribs are hurting. Actually everything on my left side is hurting. During dinner I put heat on my shoulder. My mother made pork chops and mashed potatoes. It was good. Now I just want to listen to some music and maybe read a bit before taking my night meds. I haven’t touched my book all week. So much for setting aside reading time. I can’t help it sometimes I am just too tired to read. I got 11 days to finish it. I want to try and read one book a month.