Chronic pain, sudden death, and other stuff

Chronic pain, sudden death, and other stuff

**warning long read**
Last night on Twitter, a fellow CRPS (complex regional pain syndrome) person posted a link about CRPS and complications (https://www.practicalpainmanagement.com/sudden-unexpected-death-chronic-pain-patients ). One of them was that in certain patients, high pain caused a decrease in heart rate. This has been happening to me for some time now, usually precipitated by anxiety (for some reason, the anxiety happens when my heart rate is below 60 beats per minute and pain is above a 10). Most of the time the anxiety is a signal my pain is going to get worse, which further decreases my heart rate. This can cause sudden death eventually, especially in patients who have had the condition for greater than 2 years (I’ve had the condition for more than 8 years). This paper was about those that had the severe case of CRPS, though they didn’t specify which type (there are two types, type 1 being the gross appearance where the edema, purple color, and pain are noticeable and then type 2 (what I have) is less discernable) and more than one extremity were involved (I just have one, unless you count the foot and ankle as two). My blood pressure is usually lower than what it is normally when I am in a flare, another warning sign. Even though I am on blood pressure medication, including a beta-blocker, I am wondering now if the anxiety is not anxiety but possibly an arrhythmia caused by the pain. Of course, I don’t get this every day and certainly not when I am at the doctor’s office. I sent this article to my PCP and neurologist to have them understand the condition a little better as it gave specifics about the condition. Today I sent my pcp the article about sudden death with chronic pain patients and how methadone can some times lead to cardiac dysregulation. He wanted me to be on this but I now no longer do. As I am home most of the time, I really do not want to die suddenly for a family member to find me. It is one thing for me to die by suicide (which prevents me from doing that at home) and another to die from causes unknown.

I’ve had quite a week that has left me feeling ugly, gross, and perplexed. Monday I saw the therapist and while we were talking, I told her about the weight loss. I’ve lost around 30lbs this year and continue to lose due to not eating. Speaking to my psych today, she said there was a lot of reasons for the no appetite and the fact I physically cannot move around enough to make myself something to eat. The therapist, to me at least, was saying that I was controlling my intake as “it was the one thing I can control.” I wish that was the case but I would have done that long before now. My psych is going to reach out to her and I hope some understanding is made. I told the therapist about the events over the weekend with my mother not respecting my privacy. She (mother) again disregarded it as I was getting ready for the appointment. She kept on leaving the bathroom door open as I was undressed and I kept on closing it, which annoyed her. I did so because I didn’t want my nephew to see me naked. She said he wasn’t home. How the fuck was I supposed to know this when he leaves his door closed most of the time?? The therapist and I talked more about the abuse and how I feel my mother is always looking at me in a strange way that I cannot describe, which leads her to find something wrong with me so she can touch me out of “concern.” Even as an adult she watches me when I get out of the shower. Now when she happens to be in the bathroom while I am in the shower, I will stay in there until she leaves, even if that means drying off with the shower curtain closed. It totally makes me uncomfortable when she does this.

Another issue we talked about was how I feel about my body. I told her how I hated it and not just because I am in a wrong one. I feel ugly about it, especially how my face looks. Most of it stems from internalizing my father calling me fat and ugly most of my life. It disgusts me that I am fat but because he said so, I feel I need to be (I know that is weird but it is how I feel and the current weight loss is stirring up some very mixed feelings). We also talk about the urologist appointment the next day to try and ease my anxiety about it. I felt that there wouldn’t be invasive exams or testing. I couldn’t be more wrong.

I went to this appointment feeling nervous about it. I had a bunch of paperwork to fill out about the issues that I was seeing the urologist for. The doctor comes in and the first thing she wanted to clear up was my transgender issues and how it could be difficult as I am still biologically female yet transitioning to a male. I didn’t think nothing of it and felt it was okay (more on this later). I told her about the history and how the nerve injury caused my bladder to become dysfunctional and what my current symptoms were. She was thinking I could have small fiber neuropathy due to the small nerves being damaged while the bigger nerves were compressed. It made sense to me and somehow she thought is would also affect my stomach. I didn’t think anything about this but just thought it strange until I got the visit summary (more on this later). She said I would need urodynamic testing (this I knew would happen) and would I be willing to have it done today. At this point I am internally freaking the fuck out and I guess just to get the damn thing over with so said yes. She said she would see if there was an opening and she would be back. Major anxiety filled me at this point. She came back a little while later with a nurse. Apparently there was an opening before the next patient and I was kicking myself in the ass.

They brought me to the room and the test was explained. I had to sign a consent form to be aware of infection and some kind of urethra problem. I had emptied my bladder before seeing the doc. It was now an hour or so after I gave a sample and the nurse said she had to drain my bladder before the test. OK. There was 300 CCs. I thought that wasn’t bad. The test went on and I was to tell them how I felt while my bladder was being filled and when I got the urge or was uncomfortable. While this was happening the nurse decided to show the doc her whale watching videos that she took the day before. WTF. So here I am exposed with catheters in me and the nurse and doc are talking about the fucking whales and then showing me the pics as well. JFC. As they were talking, I didn’t want to interrupt when I got the fucking urge so waited until I could speak. When I got the urge, the doc said she was going to fill me some more until I felt like I was going to burst. That took another few minutes or longer. So I said when that occurred. They kept on looking at the monitors to see contractions and such. I then had to pee while the catheter was in me. They started to run water. Nothing. Then they tried me sitting in a commode. Nothing. I was trying to push but couldn’t for the life of me get the fucking urine out. So I told the nurse the only time I know I am peeing and when I stop is when I hear it. She told the doc this and left me alone for a bit to see if that helped me to go. It didn’t. Now I had to be cathed to get the urine out. While she was setting me back up again in the chair, taking out all the stuff she put in me, I asked how much did she put in me and she said 500 CCs. I thought to myself, no wonder I couldn’t pee despite me drinking over 1000 CCs before the appointment. She drained my bladder and I had more urine than she put in me. It was 800 CCs. So while there I had peed more than 1100 CCs of urine. I was brought back to the room after I cleaned up and put clothes on to discuss the results.

The doctor came in like 20 minutes later. It was around noon time. I hadn’t eaten anything all day and was starting to get hungry. My anxiety was still high from the testing and all the invasiveness of it. I am was having intermittent memories come back of the abuse my mother did as well as the traumatic medical exam I had when I was a kid as I sat there waiting for the doctor. I was trying to remain calm but felt myself zoning out, almost dissociating from the feelings of disgust, grossness, and violation from the past. Finally the doctor came in and she told me there were two kind of muscles that made it possible to void. One set was around the urethra and the other two were around the bladder neck. I had dysfunction around the bladder neck. So she wanted to put me on an alpha-blocker, which I knew was for retention. I was to see her in four weeks where she would start to taper the other retention med I was on that was started while on the psych unit. She also gave me some reading material about small nerve fiber neuropathy. When I picked it up at the pharmacy, the pharmacist told me there was a chance of orthostatic hypotension (basically dizziness upon standing as the blood pressure drops) so I was to get up slowly should that occur and some eye condition that was highly unlikely.

I felt so gross and wanted to shower when I got home but my pain flared up and I didn’t want to run the chance of causing more pain. I also wanted to eat something but because of the emotional state I was in, I lost my appetite and food wasn’t appealing. I really didn’t even crave anything. I was reading over what the doctor had given me and saw in my “issues” was female to male transgender (FTM TG) person. I kept on getting notifications from the patient web thingy about results of testing that was done. I logged on to see them then looked at the problems/issues and sure enough the FTM TG was there. I got really mad and felt like this was discriminatory. I sent the doc a message that I wanted this removed. It was after business hours so I didn’t hear back till the next day. After a series of messages back and forth, I learned that it was the fucking dumb stupid electronic record that had put the “problem” there and the doc couldn’t do anything about it. She let my PCP know about this as she agreed with the points I was making and she assured me that she did not see it as a problem. Also listed in the issue/problems was GERD (gastroesophogeal reflux disorder). I thought that was odd as I already had it but apparently, it could also be caused by the small nerve fiber neuropathy she was telling me about. In the paperwork, she listed that I could have a skin biopsy for the neuropathy and listed the two neurologists that do it. Oddly enough, I already had contact with them as one of them was the one to diagnose the CRPS.

The past two days have been rough with pain and suicidality. Tuesday I was going to end it but because of rain, I postponed it, least until my pain flared up wildly. I had given myself a time while home to do it. I was thinking about it and fantasizing about it. My psych had wanted me to call her but I was not going to. I knew if I spoke to her, she would most likely hospitalize me and fuck that. I kept looking at my means and kept trying to get the nerve to do it. I even thought of self-harm to try and distract from doing it but I couldn’t bring myself to. I really wanted to end my life badly. Around 5, I sent my psych a message saying she had my permission to look at the notes. I hadn’t sent any message to my psych about my suicidality and finally around 2200 or so, I did saying all the distress I was feeling the past few hours after she asked me who I saw that day.

I rarely have eaten since Monday. I have lost another 10 lbs or so since the end of July, making it around 30 lbs for the year. My clothes are baggy on me and I don’t like that. I like loose fitting clothes but not the kind where I have to really tighten my belt to keep them from falling down. The shirts are big but that is okay. Anything to make the appearance I don’t have breasts are okay with me. Yesterday I sent my psych a goodbye letter. I felt I had to because I really think I am eventually going to overcome the nerve that is stopping me from acting on the suicidal feelings. When I spoke to her today, I said as much. She wants me to keep in touch with her like I have, even if I send her a bunch of emails. She still wants me to be in touch with her should I feel like acting on my thoughts or thinking about acting on my thoughts. Trouble is, as I have learned the past few days, I cannot bring myself to call her nor even send her an email for her to call me. I am too scared of being sectioned or having to choose to go in voluntarily or not. I refuse to go back to the hospital. I will only go if I attempt and obviously, fail. I keep thinking of what the father of suicidology has said, “you should not kill yourself if you are suicidal.” I am trying to kill myself when I am not suicidal, which is slowly gaining momentum.

in a restless state of mind

In a restless state of mind

I had my appointment with the therapist Tues. We discussed the abuse. She asked if I talked to anyone about it. I said no. I kind of did when I was a teen but that lead to bad consequences and I never spoke of it again. Then she asked about my suicidality. She said that she had to keep me safe and I felt like we were going along the path of the “no harm” safety contracts that I swear was not going to work with me at all. But, again, she didn’t get more specific about safety. Just decided to work on a DBT skill, which I don’t even remember what it is. I am supposed to be working on it but fuck, I am in no mood to. I told her I would write the responses in a notebook but I’ve tried to find ANY of the million and one comp notebooks I have and have failed. No idea where they all went. I recently bought two. One I know is in my everyday backpack. Where the other one went, no fucking clue. My room ate it. I know when I am looking for something, one of them will make an appearance.

When I came home from therapy, I got into a fucking flare. My foot went fucking ballistic and stayed that way for almost 36 hours. I woke up at 430 am yesterday and just said fuck it. I was thinking on acting. And yet I was hindered by my psych saying I should call her when I was thinking on acting on my urges. Well, it was 0430 in the morning so I wasn’t going to call her then. I sent her an email and tried to go back to sleep. My mother can always be counted on to disrupt my sleep as she called around 11 or so to see if the goddamn windows were closed as it looked like rain. Thunderstorms were supposed to happen through today. Around 2 I still hadn’t heard from my psych so asked her if calling her later was okay and she responded giving me a time. She called before I could call her at that time and we talked. She asked why my pain is always the cause of my suicidality. I told her it is just too much. I had foot swelling Tuesday night that continued until this morning and it was so fucking painful. I had three different types of pain going on that were so damn high it wasn’t even on a scale. So I just decided it was time to end it. She said no or she would send an ambulance for me. Shit. We are to talk again on Sat. I really don’t want to fucking talk anymore. I just want this fucking suffering to end. My plan is still on. She said she has the pipeline dream of me being better. I told her at least one of us has hope and she said she will hold on to that for both of us.

I got a response from my wonderful PT about what to do about the back situation. She said there are specific exercises to help stabilize the spine and can be done in like 7 sessions. I am not sure if I want to go back to PT as I just ended. I told her I had other fish to fry and when it is done, I will be in touch. I read the report as it came in last night. I have a new herniation at the beginning of my spine at T12-L1. It is minor. The worst one is at L3-L4, which is in the middle of where I had surgery. That is the disc that has gotten worse and is near my L3 nerve root which could be why my bladder is being so dysfunctional. I feel like I am a ticking time bomb. This level is unstable. If the disc goes or if I see a surgical consult, I most likely will need a fusion. I am not going to have a fusion because everyone that I know that has had one has had more pain. From what I read, fusions were only to be for the neck, not the lumbar part of the spine. I am wicked bad at remembering where I read stuff, so not sure if it was a journal or what. Don’t even remember the year but that is what sticks out in my mind. I could be wrong. But it would make sense as to why so many people with fusions have had them fail on them. Not saying everyone with a fusion hasn’t been helped. I just haven’t found those people.

Used to…

Used to…

I used to write in my journals all the anxiety and fear and depression that swept through my heart. The pain of living night after night in despair so great I thought I would never see the light of day again. It was cathartic and once the words were on paper (or in a word doc like they are now), I didn’t have to deal with them. The feelings were out, I felt better. I didn’t have to remember anymore.

I used to write blogs that had some purpose, whether in my clinical papers I wrote or my daily struggles with suicide and depression and chronic pain. It opened a portal so I could share myself with others who were going through the same things. It was the last remaining joy in my life before pain took over. I have been struggling since. Where I would used to write sometimes twice a day and the odd three, I barely write twice a week, if that many. I’ve lost hope in things.

I used to go to therapy with the hope that things would get better. Despite going through 10 in a short period of time (8 years), I still held on that the “right” one was out there. Therapist number 12 I thought was that “right” person until 16 years later we ended, on our anniversary date. She no longer wanted to work with me anymore. I had been in a lot grief since that day. Took me two months to try and figure out if I needed therapy and why I needed therapy. So therapist number 14 came along (13 was the interim therapist I saw while 12 was on maternity leave). He was different from all my previous therapists. He frustrated me more than any of them put together. I skipped sessions because of the anger. Then there were sessions where I felt we were making progress but like the other therapists before him, didn’t go anywhere the following week. In Jan of this year (2019) I realized I couldn’t stay with him after he told me to Google some relaxation stuff for my PTSD. That was the last straw. I had sprained my ankle during this time and decided going to therapy and working on my ankle were going to tax me like it did before. I got physically better, telling him I would go back to him when I was done. I never did.

By March of this year, I was having serious mood shifts of suicidality. In Jan because pain had been really bad, I planned a date to end it. It was the end of March. I had some of my ducks in a row to end it. But the month came and I didn’t have so many ducks as I thought I did. I fell into despair. Pain was keeping me up. The insomnia that I had infrequently, started to become more chronic. I was spending more and more time awake than I was sleeping. Add in not having a therapeutic relationship and I was barely above water. I kept writing my psych of 26 years how bad I felt nearly every day. We were in frequent contact as she was the only person in my team. The day I was to end it, it was raining. I had wanted to end it outside in a desolate place. The rain spoiled it and I had an appointment with my psych that day. I saw my psych as I have never skipped an appointment with her and wasn’t going to start.

April was torturous. By the middle, my psych wanted me to go in the hospital and I said no. I asked her why she wanted me still alive because at that point, I felt so worthless, I had no idea why she wanted me alive other than she “had to.” She told me some good reasons that I still remember. I tried to hold on to those. I starting thinking about writing another book that would be so outside my realm of mental health but would take a lot of research to do it. It would be a challenge and I hoped I was up for it. That lasted a few days. Then I was back in the despair and this time, it wasn’t letting me go.

I used to think that the hospital was a safe haven, a place to recover and get well, learn new coping skills and then be able to face the challenges outside better. With insurances no longer covering long stays, this is nearly impossible. Some people are lucky to stay past three days. Others stay just 24 hours like that has any benefit. I was hesitant to go back in. I was just about as suicidal you could be without actually attempting and I was getting close. There were a few nights where I didn’t think I would make it through the night. I honestly have no clue what kept me here or how I did it. I stayed for three weeks and then my whole world went to smithereens.

I was supposed to see my psych the following week but she changed it to the following Monday. She said she had some news to tell me and I listened. The institution she had been apart of for 30 years was letting her go. She didn’t go into the reasons and I asked her if writing a letter would help and she said no. I have been seeing her for 26 years. My heart broke in a million pieces but I didn’t know it yet. I still had one week left of seeing her and it would be the last until she was some place else, though she didn’t know where yet. She wanted to stay in academia and Boston is the academia capital. All the while I was to see a new therapist, number 15. The first visit didn’t go well. She hammered me with questions, took my history (I tried to stay away from suicide as that freaks mental health professionals out), and who I was seeing for psych. She asked me about my hospital stay and I thought oh shit here we go. She asked what I was to do with crisis. I said call my psych. But according to her, my psych had “terminated” me. I couldn’t comprehend that. I knew my psych didn’t, she said so and she doesn’t lie. She still wanted to be in my care, to take care of me. I didn’t know if I would see this therapist again. She was nonchalant about setting up another appointment with me. I said I give new therapists at least three sessions before deciding if they would work. She agreed on that point.

I don’t know what will happen the next few weeks. I am back to being highly suicidal without a voice. My one or two places where I catharized my feelings are blank, and have been since the day my psych said she was temporarily leaving me. Wed I got a call to see a new psych and I nearly had a meltdown in the lobby of the building where I first started seeing my psych. But I had to see my pcp so had to keep things together. I have had some medical problems this past week that are still unresolved. I never thought my body would be broken down so much at 43, but then, I never thought I would live to see this age.

I used to believe I would always write in some way, shape, or form. I never thought my words would be hard to reach for. Between the physical and emotional pain, the medications I take, and the pressure of trying to stay some what alive for whatever reason when I just want to fucking die, I am at a loss of words. Some times they breakthrough the constriction I am in, the blinders that say that I should die and nothing else matters. My psych asked me if I would be alright for next week, and she said Monday. I told her I didn’t know. I still don’t know. I want to find that desolate place and end it so fucking much. The thought of dealing with CRPS (complex regional pain syndrome) without pain meds is freaking me out, especially as they don’t work as they once did. It is no fault of the medication, just the disease process. Eventually, there will be nothing that will work for it and I cannot cope with that. I cannot imagine spending my life in so much pain when I already spent 28+ years of it managing the mental illness part of me. I used to believe there was hope out there. Now I am not so sure anymore.

heartbreaking day

Heartbreaking day

I left my house a half hour earlier than I wanted to because I just couldn’t sit around waiting for the bus after I shaved and brushed my teeth. I won’t be shaving the sides and back of my head anymore as I fucked up the back and sides top hair. The razor got too close. So now I will let it grow out. I might let my facial hair grow to, though my mustache is taking forever right now. I wanted to get my eyeglasses today.

I got to Boston around 1 and by 130 I was done. I only bought sunglasses as that was a priority. I was then told my insurance only covered one pair of glasses per year. Fuck. That would mean my glasses would be out of pocket and run at least $300 minimum. I might have to use the online sites to get them. I can usually get them for around $80 or so. I think I am going to try another place than the one I used before, only because the glasses need to be adjusted, though I don’t know what my pupil distance is. I don’t know if I still have the measurements from the last time I ordered. Will have to look.

I then went to the hospital and had something to eat at the café. I already had my Starbucks and didn’t need more caffeine. After eating, I pulled out my journal to write as I had an hour to kill before my pcp appointment. About twenty minutes later I get a phone call with the hospital number. I answer and it’s the psych department wanting to schedule an appointment with the new psych. I swear my heart took a dive and stayed there the rest of the afternoon. I almost lost it after setting up the appointment. I had to see my pcp in like twenty minutes and I couldn’t have an ugly cry breakdown. I stuffed the feelings and then got anxiety really bad. I think my heart rate dropped because after walking to the office and going up some stairs by heartrate was only 65. It should have been higher. My pcp and I talked about pain meds and he wanted to change it to something else, but he didn’t know how to do it. He is going to send me to a pain clinic west of Boston where I see my neurologist. He asked if this was okay and at the time I agreed. I got my meds refilled and then set up another appointment to see him in a few months.

As I was walking to the train station, the anxiety got worse. I didn’t have my meds on me as I didn’t wear the jeans shorts. It was too hot out. I listened to music, I didn’t care what kind at that point; nothing was going to calm me down. I got to the Square to wait for the bus home when it grew dark. T-storms were going to happen and I was going to get caught in it. Sure enough by the time the bus got to the main road where I get off at my stop, the skies opened up. The downpour was sort of refreshing but freaking cold. It came down so hard and fast streets were flooded. I must have walk into at least half a foot of water as my street is at the end of a hill. It was fun walking in the rain but at the same time, not so great for my ankle as it was kind of unsteady with water in my shoe with the AFO and the other’s laces untied. I was completely soaked by the time I got home. I was glad my niece was home as I asked her for a towel to dry off some before heading upstairs. We have ceramic tile floors and I didn’t want to go flying. I am glad my sister was home to get me a change of clothes. I dried off and then put my wet clothes in the dryer. I then got to my room to turn the AC on because even though I dried off, I was sweating a lot. The temp dropped 20 degrees but the humidity went up to 83%. After I cooled a little, I went back downstairs to put my sneakers in the dryer and get my portable charger out of the bag so the wetness didn’t ruin it. I had to charge it anyway.

With all the ruckus of the storm, my anxiety went away but it came back like an hour later. My heart rate was in the 70s so that was good. I thought it might be because I was hungry so had a protein bar. My ankle acted up so I didn’t want to go downstairs. I was kind of hungry but didn’t know what to eat. I didn’t want to cook anything. I still had the breakfast burritos but didn’t feel like having one. Those were for my really bad days. I had some pita chips and called it a meal. By the time I came back to my room, the pain had gone up considerably. I became suicidal instantly and finally made up my mind about it. I had always given myself dates that were a long time away and I had enough. So I may or may not go through with it soon. Guess it will all depend on how I feel that day and where I do want to end it. I am trying to stay so I can see my psych again but I just can’t anymore. The pain is too great and from what I read about the medication my pcp wants to try me on, I just can’t deal with both physical and mental pain at the same time. My heart is broken since I said a temporary goodbye with my psych and I hate having to continue my care at the place she was forced out of. I met her when I was a teen so she is a child psychiatrist. The new psych specializes in geriatric psychiatry. I have gone from one end of the spectrum to the other. I emailed my psych this but didn’t get a response. Also emailed her about what my pcp wants to do with my pain management, which isn’t going to be anytime soon. After 28 years of dealing with my mental illness, I have to call it quits. Monday I had to go to the ER to rule out cauda equina again because of my bladder issues and severe back pain. My degenerative disc disease has gone from mild to moderate and nothing can be done about it. So in addition to being in pain in one shape or other, what the fuck do I have to live for and why?