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.

unrest

Unrest

I am in my 10th hour of being in pain. I didn’t do much. I wanted to have something to eat so heated up a burger. When I was close to being finished with it, while I was sitting, my ankle went berserk. It felt like someone was trying to scoop my ankle bone out of my leg. It was so bad that walking was difficult. I cleaned up after myself and then went up to my room where the pain got worse. I took a breakthrough med and I felt some relief but as CRPS pain goes, one pain goes away and another starts. The pain moved from my ankle down my foot and was excruciating.

I emailed my psychiatrist about my upcoming appointment with a new therapist on Tues. I gave her the name of the therapist I was seeing and told her I had hoped for the best but was thinking the worst. I then watch an episode of Good Omens. I really like this series. The good angel is pretty funny and timid. The demon angel is sort of cocky and sarcastic. They make a good pair. My pain subsided while I watched but soon as the episode was over, the pain continued. I started having anxiety. Took my BP and pulse and it was on the low end of normal but my pulse was really low at 53. I normally would have taken another Ativan but decided not to as I didn’t want to lower my heart rate further. As much as I wanted to die, I didn’t want to do that at home.

I barely left my room since coming back from dinner. Kind of makes me nervous as I haven’t really peed in eight hours. Maybe by “talking” about it, I will get the urge. I am still kind of nervous as my heart rate as of a few moments ago was 51. I emailed my psych about having these anxiety attacks while having high pain and a low pulse. I never got a response but might tomorrow. Or maybe I will email my PCP and see what he says. I like to go through her first as she is my go to doctor. I wouldn’t see her if I had the flu or something but I would at least tell her I had the flu. And she will direct me to my pcp if she feels like I need to be seen by him. She did make me see him when I was losing weight and had no appetite.

I have been thinking about all the stuff that went on while I was in the hospital, mainly about what I was writing in my blog that was getting back the attending psychiatrist. I don’t know why I can’t let it go. I read my last few blogs before being discharge and yes I might have been harsh, but I am always like that when I am venting my frustrations about someone. I don’t hold back my swears or how stupid I think someone is (even though they really aren’t stupid, it is most likely the computer system preventing the nurse for giving me the med I need). The only times I really had problems was when I wanted my breakthrough med and they confused it with the extended release med, even though it is different doses. A few of the nurses thought I couldn’t take it together or couldn’t give me it because of the computer system telling them it wasn’t time yet. But either case, it had no bearing on my care. I was writing because that is what I do when I am upset or frustrated or angry or whatever. It is my release. I can’t really go off at a nurse for doing his/her job. That would be frown upon and I would be spoken to because it would seem inappropriate but me writing about it in the language that I use helps me to release it better than calling someone a fucking moron. I have never given a description of the person, the location where I was, the type of unit I was in, nothing to indicate even the hosp. There are more than one psych units at hospitals in Boston as well as surrounding areas. All these hospitals have nurses. All these hospitals have social workers and contact people, etc. Why would the unit I was on be any different? How was anyone to know I was talking about Jane Doe instead of Jane Smith? This doctor was so out of line and made me feel so censored in what I was writing that I couldn’t write. My one fucking outlet that I use to ease my pain was suddenly being monitored by people I didn’t know reporting me because I was frustrated or was attracted to one of the nurses. Then had the fucking nerve to call me Trumpian. What the actual fuck?!?! I am sure if I brought it up to him, he would deny ever saying that he did and I am sure the social worker would deny it to, even though she was right there when he said it. I have no idea what this doc wrote to my psych. I see her Monday and will find out, I guess or maybe I won’t. I had already told her that there was an implication I wouldn’t be welcomed at the unit again. Frankly, I hope I am not because I hate it there. I wasn’t pleased to be placed there every time and especially in the care of this doctor my last three stays there. I think the only thing that helped me was the increase in Lamictal to better stabilize my mood. The staff, which were excellent, really helped because they took the time to listen to me through my darkness and saw the pain I was in with my ankle. The doc and social worker didn’t. It probably went in report but didn’t go more than that. I never heard the doc say anything when I had a night of pain and was in agony and highly suicidal. I felt bad that the nurse had to come to my room to give me meds because I couldn’t walk to the nurse’s station. If I felt up to it, I did. Unfortunately, I had to sometimes walk to the bathroom and then got stuck. I wish I had brought my cane as that would have helped me more than trying to walk unassisted. Sure there were staff but I feared falling with them than anything. If I fell that would be one thing, but to have a staff member fall with me and the possibility of them getting hurt I wasn’t okay with.

I have been trying to let this stuff go but it really bothered me. Like someone said to me earlier today, it was almost like they were infringing my right to free speech. People right vile things attacking others all the time on social media. I don’t think I am one of those people. I don’t think I verbally attacked any of the staff on the unit. I was just venting my frustrations because I was feeling trapped and needed an outlet. I was also in a lot of pain and wanted to act on my suicidal urges, which frustrated me more than anything else.

Before I end here, I want to thank everyone who reads my blog daily, regularly, or even infrequently. I also want to thank the people that follow my blog as I have just reached 1,000! I never thought I could reach it as I have been close a few times but then lost some people. Thank you, thank you, thank you.

thoughts on my blog, input needed

Thoughts on my blog

I have been discharged from the hospital. I am paranoid that I am being monitored by someone at the hospital on what I write. I am not 100% positive of this because my stats views have gone back down to there regular numbers. Either way, it got me thinking about how to proceed.

For those that read my blog every day, I would like your input. You can give it to me via my contact page or if you want to leave a comment, that is fine too. If you are a close friend and follow me on other social media, feel free to contact me there as well. I am thinking of password protecting my blogs going forward but want my readers to read them. It would be the same password (unless I feel that it contains information that I only want some people to read. These posts would most likely be of suicidal nature that I don’t want to freak someone out and call the cops on me.)

Let me know how you feel about this. I know that my readership will most likely be down, but I need to do this because I still want this to be my outlet for my frustrated feelings, anger, and depressed thoughts as well as my suicidality, which is why I created this blog in the first place. I know I could just write some where else these “toxic” feelings but it is hard as this has been my source of support and some of it does help people in knowing they are not alone with chronic pain and depression and suicidal thoughts/feelings.

I have protected my posts on Twitter. I am not sure anyone can see them anymore. I know that people that follow me cannot retweet what I write. I really hated doing this but it will only be for a short while when I think I will be free from being monitored. I am really upset over this intrusion of my venting and it being used against me, like there are only nurses at this particular hospital and none of the other hospitals in and around Boston. This is how narrow minded this doctor was and he had the gall to call me a “Trumpian”. This angered me so damn much I had a breakdown after our meeting. I couldn’t stop crying because I was so angry and frustrated. One of the nice mental health workers came into my room to talk to me. She didn’t know exactly what was going on but tried to reassure me this didn’t affect future care at the hospital. I think it is so stupid. I emailed my psychiatrist, who probably just blew it off as me venting steam. I am not sure if the doctor emailed my psychiatrist and told her what I was writing. I would have filed a complaint but usually that doesn’t get anything changed. He was one of the higher ups so my complaint would most likely be thrown in the trash and my record possibly flagged as not to be admitted anymore at that hospital, which is fine with me.

The day before discharge, I had a meeting with my sister and social worker via the phone. OMG it was so fucking terrible. My sister basically verbally abused me. I won’t repeat what was said. I just felt like no matter how much I tried to tell her how much pain I was in and how I needed to recover afterwards, she didn’t hear me at all. She wanted me to go through my stuff while I was recovering from my appointments or anything else that caused my pain to keep me up all night and just stay in bed. I felt so horrible after the meeting which was the same day I was spoke to about my blog. I was just waiting for number three incident to complete the three’s. Thankfully it never happened. I was in so much pain though from being emotionally tapped out. Since I have been home, I have not seen my sister. She asked my mother if I was home but did not come to my room to even say hi to me and her voice toward my mother was kind of testy, like I didn’t belong here at all. I swear she is just like my bastard father. She called me selfish but that is just a projection. The social worker really understood what I go through at home. During the phone call, I wanted to hang up so fucking bad. I wanted to talk to my sister about her use of pronouns but I didn’t think it would be worthwhile. I had an agenda but it totally backfired as I just had to go through my stuff no matter what or how I feel. I really feel unwanted.

So for those reading along, please let me know if you would be willing to read my blogs that are password protected or if you just want me to write like I have been even though it might ruffle some feathers at the stupid hospital I was at.

2019May13 Misery and Insomnia Continues

2019May13 Misery and Insomnia Continues

I barely slept last night. I was up till around 0530 because my ankle decided to go up to a level 12 at midnight and stay that way most of the night. It went down to an 8 when I woke up around 10 but after I brushed my teeth, made lunch, washed my dishes, and folded my bedding, pain shot back up higher. It is now around a level 13. I am so disgusted.

I was so frustrated and had bad urges in the early morning hours. I was in such despair. I realized around 4 am that if I go in the hospital, I am not going to have my meds at my bedside. I would have to walk to the nurse’s station to get meds and then walk back to my room. Walking is not a good thing when you are in a fricken flare. So I emailed my psych this and haven’t had a response. I sent her another email asking her if she is going to force me in the hospital. I am done with messaging her today. Either she responds or she doesn’t. I told her I can talk to her tonight or tomorrow, or the rest of the week. I don’t care but I am not going in the hospital. It isn’t like being on a psych unit you have a call bell to have the nurse come to your room. And because the nurse needs to scan your wrist band to give out meds, it is just not a good situation for me.

I am fricken exhausted. Past two nights I barely slept more than 8 hours. I am running on fumes. I had coffee because I needed it. I hate this is another day of not being able to do anything in my room. I haven’t done my PT exercises and don’t care to. I have been doing the calf thing trying to get it loose. I have not used the new band for the foot exercises. I am just so frustrated I don’t want to do a damn thing. I have been doing the foot thing where I am trying to get my foot to be flat. Because my calf is tight, my foot is always bearing on my toes rather than be flat. I have been this way for years so I don’t think that is going to change. I tried it while I was on the bus and train Friday and it was killing my muscles. I am just not used to it. I try and hold it for a little longer.

My psych just responded and wants me to call her tonight or tomorrow morning. For some reason I am scared. Even though I have known her more than half my life, I always fear she will throw me in the hospital and throw the key away. I know this irrational. So I will call her later. Rather face the music today than tomorrow. I will be a nervous wreck if I wait till tomorrow morning.

To the person who commented on my blog yesterday, I hope you are feeling a little better today. I know you are probably hurting a lot. You will get through it even though it might seem impossible right now. Hope you are continuing to read my blog so you see this message.

I took some gaba to help with the pain. Not sure that was an good idea if I got to talk to my psych tonight. Last night I was a little dissociative before trying to sleep at 130am. I have been doing anything and everything I can to control the pain. It most likely is flaring due to the weather. Temp dropped about 14 degrees last night. I so cold. I had to put another blanket on my bed because I put my fleece one in my bag I was planning to take to the hosp. I still am hoping to be a free bird this week. Not sure yet. Will find out when I talk to my psych tonight. Hence why I am scared. She very insistent Friday when we met. I know she is right but I am getting upset on how it will be and it hasn’t even happened yet. A friend said to “let it work” but I am very sure she has never been in the hospital recently, or at least where I live. If I had a therapist, maybe things would be better. The social worker got back to me about the therapist situation. Unfortunately the director is in Africa for a few weeks so she doesn’t know what is going on until he is back. Wonderful. Just reinforces the notion I am a hopeless case no one wants to take on. Other might be helped but after 28 years of getting help, it hasn’t worked out yet for me.