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.

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.

random psych shit and things

Random psych shit and things

I had three hours sleep last night. I didn’t go to bed till 0730, woke up at 0930 and then again at 1030. I had to really get up at that hour because I had to be out of the house by the latest 1105 to catch the bus. Course I go downstairs, hoping to shave and my mother is in the bathroom wanting to wash up. Figures. I tell her I need to wash up and she says she will do so fast. She is never “fast.” I waited for her to get out. By that time it was around 1045 and I just brushed my teeth and got the eye crud out of my eyes by washing them. I couldn’t be bothered with the rest of my face. It would have to wait.

I had time to fiddle after using the bathroom, but not much. I got my clothes on before sitting on my bed. I tried to find a belt I could use for the pair of shorts I found in my drawer. They are a size 38, which after all the weight loss, I fit into again. I didn’t need to buy another pair of shorts as the size 42 is way too big on me. Not eating is not how I wanted to lose the weight but it happened so there isn’t much I can do except to keep it off, which I have and knew I would. I might have gained and lost the same three pounds the past few weeks but then I will drop 8 lbs the following week so I guess it evens out eventually.

I went to Starbucks and had my espresso. I had a new barista. I asked him for soy and all the baristas that I ever had have given me the container or a quart of it. This one pours a tall cup and hands it to me. WTF. I don’t care, I just want my fucking espresso. He was cheap with the ice so I just said fuck it. He looked to be a smartass anyway and I wasn’t in the mood to argue. I totally got my time messed up because around noon, I left for the station. It wasn’t until I was halfway to where I needed to be, I realized my appointment was at 1345. I was more than an hour early. Goddamn it. I went to the lobby of the building and just wrote in my journal. Then I washed out my reuseable cup and went upstairs. The therapist took me early. I was beyond tired by that point and wasn’t too chatty though I did try to have a conversation. The therapist kept on looking at her computer screen and then looked at me so fast I thought she was going to get whiplash. No idea what she was looking at. Somehow she asked me if I was in crisis or something and I said I don’t know, not right now. Could change in 24 hours, which it could. She said that wasn’t reassuring. Then she said “we need to monitor how you are and such.” I am thinking ok. Next thing I know she is telling me she is off next week and she will see me in two weeks. WTF seriously?? She didn’t offer a safety plan or who I was to call if I needed to talk to someone while she was away, nothing! I got pissed off. Because she took me early meant I would be home on time for my psych to call me.

I had just missed the bus when I got back to the Square. I had to wait a half hour for the next one. I just listened to my music. I tried to read Twitter but my eyes couldn’t focus and it was really difficult as the sunglasses I was wearing weren’t prescription. I have either thrown them out or they are somewhere hidden in my room. I won’t know until I try to find something else. Like today I was trying to find the key to my cash box and found my class ring instead. I thought I had lost it for good while I was working in the lab. I could have sworn it was in my lab coat that got thrown away. I am glad I was wrong. That made my day until my psych called me. We talked and then she said she had a question for me, would I be okay to see a psychiatrist they had assigned me. That psychiatrist contacted her and wanted her input before they contacted me. I then asked her ok until she sets up shop somewhere and when that would be. She said sometime in the fall. She then asked if I was okay with meds. I said I have one refill left on all of them so would be set for the next month, month and a half. And if I couldn’t see the guy, I would call her. I told her about the dissociation part of Monday/Tuesday night where I somehow scratched my wrist. There were a few marks. I have no idea what time it was, what it was with, or why I did it. I don’t even remember doing it. She said if it happened again to call her right away. My immediate thought was that could be a while as it took me all day to realize this when I emailed her around 2200 Tuesday night while waiting for the last survey for the study I am in to come through. I was going to sleep afterwards and I did until like 9 or 10 am. My psych said she would call me either tomorrow or Monday to let me know what the new guy said and what his availability is.

After the phone call, my heart dropped. I was completely hurting and heartbroken and angry. I almost had a meltdown but somehow prevented me from uncontrollable sobbing. Fall seems like forever right now even though, technically, it is only a few months away. She didn’t tell me where she would be. I didn’t ask. I was too stunned to know I was actually going to see a new psychiatrist after twenty-six years, least for a little while. She still wants me to keep her posted and stuff. I don’t think that will ever change. I’ve always have, even when she was away on vacation or out of the office or on medical leave. This week has been a blur and today just sucked totally. Once I knew I wasn’t going to fall apart, I made myself a cheeseburger, which my stomach is still not happy about, even though I liked it. It was really good. After I ate, I shaved my head and face. I got rid of the mustache as it was all uneven and hairs were longer in places than others. I looked in the mirror afterwards and I looked like I was 12. I sent the pic to my psych saying I was indeed 12, LOL. My face has slimmed up and with the facial hair gone, you can really see it. Losing around 25 pounds helps. I still can’t believe I lost that much weight in such a short period. My waist shows it though. I am not 100% sure it is the T giving me the loss of weight or the loss of appetite/not eating due to pain, or the combo. We may never know. All I hear is that people gain weight with T. I might be the exception.

Now I just wait for a stranger to call me or his secretary to schedule an appointment. Not sure if my psych is still wanting to keep tabs on me now or if she just wants me to keep her posted on things. I guess I will find out when she calls me.

thoughts floating around the brain

Thoughts floating around the brain

I took a nap that was longer than I wanted to take. Now I am having trouble sleeping. I am not in a super amount of pain, but just enough to let me know it is there, like it always is. I really didn’t eat much today and I probably should eat something but other than my frozen burrito, I don’t know what to have. I would have cereal but the milk sometimes upsets my stomach. If I am able to afford groceries next week, I will get some almond milk or soy.

I am feeling guilty that my psych feels she needs to keep tabs on me. She wasn’t judgmental about what I wrote to her nor did she panic like I knew some mental health professionals might. She has known me for a long time and I think she knows that even though I get really suicidal I haven’t really acted on it in years. There may have been a few occasions where I have taken one too many doses of things that I told her about that usually lead to a hospitalization or the tone of an email that signaled to her that things were not right with me. I told her how the meds are messing with my cognitions around writing. It is rare that I am writing at this hour (just before midnight) but then this is blog isn’t called “Midnightdemons” for fun. I write around or after the midnight hour.

With technically yesterday being my anniversary of my blog, I really started thinking about what this blog means to me. It has always been my outlet to either share information about suicidal research papers or books that I think maybe helpful. I am not sure if there are any clinicians that still follow my blog as I have turned this more into a chronic pain/depression blog but still talk about the daily chronic suicidal feelings I have. There are some days that I have no idea how I got through them and even if you asked me, I have no answers. I know when I got really suicidal back in May and there were two nights where pain was really bad that I had wanted to act on my feelings in the worse way. I just kept holding out for daylight because then I knew I would be okay but those nights were long and how I was able to get to sleep before those daylight hours or close to it, I am not sure. My psych has been there more for me since my therapist of 16 years left me two years ago. She has been my only rock and continues to be because therapists don’t tend to stay in my life that long. I have no idea how I lucked out with her. I truly don’t. And if she has a reason for that, she hasn’t told me.

There was a lecture that someone posted about psych meds and whether people with chronic mental illness needs to be on them long term as they don’t really know if they work the way we think they do. But there is that medical model of trying to “cure” and to do something to alleviate suffering. Some people will say these medicines have saved their lives. I used to believe that but now I am not so sure. I don’t want to be on them but I know what my life is like off them. I really want to get off the antipsychotic I am on but it took a really long time for me to find something that helped keep the delusions, paranoia, and “bad” voices away. I still have two or three that are my “normal” voices and the one that “reads” to me while reading a book or something. Without this “reading” voice, I cannot comprehend the words on the page. I can read the words but they make no sense to me. I found that when I was on high doses of trilafon, it stopped all my voices and I literally couldn’t function. It was around this time that I had to consistently take an antipsychotic. The voices just got worse as I grew older and with it, took longer to control. I don’t have side effects from this drug but I am just wondering if the Ativan is what is keeping those side effects at bay like it did with the previous one I was taking.

The lecture was interesting. I didn’t finish watching the whole hour and half but just got the gist of what it was all about. It is on youtube though I don’t remember the name of the video.

My pain hasn’t been horrific the past day and a half, which is kind of freaking me out a bit. But because it hasn’t been, my suicidality has been lower than it has been the past few weeks. These breaks are welcome because being highly suicidal all the time is just a dangerous place to be in. Even though I was hospitalized for three weeks in May, I didn’t give up my plan on how to end my life. That is still ongoing. I am just finding that I keep getting closer to acting on it with each flare that I have as the pain just makes me feel so hopeless and I want to escape from it so bad. My psych knows that pain is the principle driver in my suicidality. She understands it, maybe not all of it, but she validates what I go through, which is more than what anyone has done for me regarding it. I am not sure if the therapist will. We are still learning about each other and how she can help me. But it will take some time before that happens. I don’t know if she will ask how my suicidality will be from here on out or if she will just go with it if I don’t bring it up. We haven’t made any plans surrounding it and she hasn’t even said to reach out to her if I am in trouble so I am again not too trusting of her, least not yet. I tend to keep my suicidal stuff private with people. Sure I write about it here but how many people that I interact with read my blog on a daily or semi-daily basis? Some people don’t even know I have a blog unless I tell them. I feel like I have to keep my suicidal thoughts private because I don’t want to end up in the ED or hospital every time I bring them up. That doesn’t help me. In fact, it will just piss me the fuck off, and that is the last thing you should do when you are suicidal.