a lot has happened this week

A lot has happened this week. Tues I had therapy. I thought all that day that it was Monday, even though I knew I didn’t have an appointment that day. Because I didn’t have much of a voice, I had written out what had transpired since the last time I saw her. After she finished reading it, she wondered why she didn’t get notified that I was in the emergency room. I thought that was weird and said so. She said some providers get notified. Ok. Don’t know why a psychotherapist would get notified about an allergic reaction, but what do I know.

I didn’t talk for most of the session as she would ask a question and then I would either shake my head or nod. That only worked for so long. By the end of session, my throat hurt and I don’t think I could speak. We had talked about my being suicidal and she kept on asking me if I was safe. I didn’t know where she was going with this. I have no idea if she was using the “no harm” contract or what. I could have gone in so many directions with this but 1) I had no voice and 2) I am so damn tired of teaching or maybe informing is a better word, a therapist about how to deal a chronic suicidal person. I am still thinking of bringing in the suicide safety plan by Stanley and Brown but I am just not ready to do so, only because in my intense moments, I doubt I will do the stuff that I had agreed to do. I was supposed to call my psych and I don’t remember if I did or not. I know I emailed her and that is all I remember.

Wednesday I had groceries delivered. I put most of them away and then decided to get my haircut as I had to go to the bank for my mother. My barber said he would be unavailable between 2-3 so I went to Starbucks and just wrote in my journal. I don’t think I had anything caffeinated because I had coffee while waiting for my groceries. I might have ordered a tea and that was it. I got my haircut and hour later and then went home. I was tired and my ankle was hurting but then when isn’t it hurting?

Thursday I had an appointment with the new psychopharm. I was really nervous about it. Before the appointment I was almost in tears as I didn’t want to see this guy. I just wanted my psych and the realization that she was gone was causing intense grief. I had emailed my psych so we had a convo a little before the doc got me. I felt a little reassure she was okay with this and that she knew that she would always be my psychiatrist, no matter what. I went to the guy’s office and could only speak a little above a whisper. Some days I feel like my voice is better and other days I can hardly talk. That day was one where I could hardly talk. The doc wanted my psych history and what had lead me to see mental health services. He didn’t have me elaborate on why I was hoarse, why I was disabled, why I was wearing an AFO, nor did he inquire about my past medical history. I gave short answers as I was in a bad mood for most of the day and wasn’t very talkative. I told him I had Bopolar 2 and he gave me a skeptical look as my record said I had bipolar 1 (I have never experienced true mania before in my life). The appointment was supposed to be an hour long. It lasted like twenty minutes, tops. My throat was sore so I knew I wouldn’t be talking to my psych that day.

I felt like the whole conversation could have been done via email or something. He said he was just for meds and all he wanted to do was increase my antipsychotic, even though I told him my psych didn’t want to for fear of side effects. I must have told him no at least three times that I didn’t want an increase. Then he said he will see me in a month and if I needed refills before then or wanted to get in touch with him to do so via the patient web thing. That was it. That was the appointment. I was in a worse mood when I left.

Thursday I had left early because I couldn’t stay still after I woke up. I got to the “new” bus stop and waited. The bus just blew right by me. There were no fricken signs indicating it was a bus stop and the previous bus stop had no signs either. I had to walk uphill to the only stop that I knew had signs, which was a good 300 feet beyond where I was uphill. My legs were killing me from the walking. When I came home from the disaster of an appointment, my ankle flared up. It had been a 7 most of the day (never good when I wake up with a 7) and it immediately went up to a 12 when I was resting. Things just got worse from there. I must have sent three or four emails to my psych over the course of the evening/night. I was extremely suicidal and the sketchy plan I had in my head became more detail and specific. I had picked out a day and dammit I was going to go through with it. I didn’t go to sleep till maybe 3 or 4 am. I wanted to write a blog but just posting the word “suicidal” on facebook triggered a report. Whether someone did or some fricken algorithm, I am not sure. It happened pretty quick so I am thinking it was their stupid algorithm that sent me the “being reported” bullshit. I had become even more despondent over this. I felt shutdown even though I was ready to fucking explode. I couldn’t get my thoughts together to even write in my journal, where I knew it was safe.

I slept till around 2 yesterday and thought all day that it was Saturday. I wasn’t feeling so suicidal but the thoughts of the night before still were shocking to me. I still had the plan in my head. All day yesterday I was overwhelmed with my thoughts and by 4 or 5 I was totally consumed by them. I took an Ativan to try and calm down as my anxiety was so high. I also sent my psych an email asking her to call me whenever she got the chance. I was free the rest of the evening so it didn’t matter what time she called. She called me around 2 hours after the email. I asked her you could become insane by the intensity of being suicidal and she laughed. She said that wasn’t the definition of insanity. I felt reassured. She said she is trying to reach out to the new psychopharm but he hasn’t responded to any of her messages. I am not surprised as he seemed like an asshole. She also wants me to let her know how the laryngology appointment goes. I said I would. She said I should write but I couldn’t last night. I felt like if I spoke my mind, the police would be at my door the next day. I just wrote in a notebook and my journal. She asked what I was doing this weekend and I said I didn’t have plans. I still needed to do stuff around my room. She said to keep in touch. I said I would.

I had gone to the pharmacy yesterday to pick up my meds. My right leg felt so weak. Actually, both legs felt weak. I knew it was because of Thursday’s activities. I wanted to do stuff around my room but I knew if I tried, I would hurt so I didn’t. I didn’t even want to shower though I needed one. I just couldn’t chance another flare. It would have sent me more over the edge than I already was. I just read. A friend texted me so we chatted for a bit until he had to go out with his family for dinner. I was glad we talked for a bit. I tried texting to another friend but she said her phone was dying and would talk later. Yea, 3 am later. JFC seriously? I don’t get why people don’t know their battery is dying when you are talking with someone. Why even bother answering when another time would have been fine. I don’t get it. But texting at 3 am, unless it is an emergency, is not ok. Yes, sometimes I am so it doesn’t matter but usually at that time, I am trying to wind down not have a conversation for an hour or two.

I haven’t done much today but I did finally shave and shower. I didn’t take a chunk of my face off while shaving either so that was good. I haven’t really eaten much but then I am not that hungry. I had bought some buffalo wings with my grocery order and forgot they were in the fridge. I found them while looking for my coffee. Our fridge is full so I basically just put my coffee where ever there was room. I realized today that one of the bottles of coffee I ordered didn’t come. It is too late now to call and say it didn’t. I am bummed about this, but not really. I need to get ice cream so I might get it tomorrow if my nephew isn’t working. I will get that particular coffee then.

frustrated on so many levels

Frustrated on so many levels

I saw the therapist today. I was really nervous about it because I didn’t have a voice. First part was of her reading all that transpired since I last saw her, which was last Monday. In there, I had mentioned I was suicidal and she asked if I was safe. I hate that fucking word when it comes with being suicidal. I never know if I am truly safe. If it was put in the how likely am I going to act or something, the answer might be a little different. Each time I get the urges, the situation is different so I have different levels of coping with it. It might be some grounding, music, distraction, going through social media and getting support there, or just maybe sitting with whatever I am feeling to get through the moment. I have recently just stared at a wall while letting the feelings hit me, one after the other and I try not to think in those moments, which is hard to do. Some times I can write but lately I seemed to have lost my words (mostly due to being reported on my feelings) that I cannot express myself, not even in my journal. The words are there, I just can’t seem to put them in cohesive sentences. This is the MOST frustrating thing because writing used to be my escape and because of vigilantes, my escape has been hindered.

I left aggravated and angry. I was looking for her to offer something to appease the suicidologist in me but nothing was forthcoming. I don’t know if she was looking for me to have some sort of plan (I have many, some good and some not so good) or what. Her biggest thing was for me to be “safe” whatever that meant. While I was home reflecting on this, I basically realized I have four choices: 1) go to ED of some sort; 2) call my psych, no matter what hour as I most likely will be in real danger at this point; 3) stew with the feelings as mentioned above; 4) act on my feelings/thoughts/urges. I have a straight forward plan so as long as I can walk (presuming physical pain isn’t the driver of the suicidal escape), the plan can be executed with no one much the wiser.

The ONE thing no one understands about suicidality is the need to escape from the pain (physical and mental or either/or in my case). It is also true that if I have an angry row with a family member that has me feeling unworthy, useless, lazy, etc., my thoughts of escape increase because I feelings of being trapped are heighted and I will think of suicide as my only choice in the matter. I honestly have no way of conveying this and having a “treatment” for it. Yes, I can bring up CAMS (my preferred way of dealing with my suicidal feelings) but my therapist doesn’t even know what the fuck it is, and from the sound of it, is not up to the latest suicide prevention stuff. Honestly, I don’t know who is as there is a LOT of information out there.

The therapist also wondering if being that the institution I was at was good for me as I have so much anger at it right now as it got rid of my psych. I think part of this is mostly likely the grief of her not being there and right now I am in the anger stage of that grief. The frustrating fucking thing right now is that because of my voice being fucked up, crying hurts so I am unable to process it with a good cry. Even as I am typing this and letting some tears out my throat is starting to hurt in a big way. I think once I have this cry, I can possibly moved on. My psych is still there for me; she hasn’t left. I just haven’t been able to see her as she doesn’t have a new home yet. I am still her patient because she has said so and I believe her. If anything, I think she fears me leaving her more than I fear her leaving me. If that makes sense.

I am utterly exhausted right now, mentally and physically. My throat is fatigues and hurts from the twenty minutes or so that I spent talking to the therapist. I honestly don’t want to talk to anyone, unless it is in written form, for the rest of the day. The only thing I have eaten today is a donut and a coffee cake. That seems to be the only thing I want today. I may have the last breakfast burrito (if there is one) that is in the freezer later but chances of that happening are low. I might have to make some more tomorrow after my groceries are delivered. It is nice to have some pre-made food that I like that I can zap in the microwave for a few minutes and have a meal.

I don’t have any plans for tonight. I might read Harry Potter or just be on social media. I would like a nap but that has yet to happen. I just seem to lay down and my pain decides to act up. My foot is already acting up with the ceiling fan going. Airwaves are annoying it. I really shouldn’t have listened to the meditation thing the therapist had me listen to. It started off by thinking of the feet and how they feel and such. Both feet were killing me so it was hard to “let go” of the feelings and shit. Then that was the only thing I could focus on. When they moved up to the abdomen I started feeling hypervigilant of someone barging through the door and had to stop it. At least we tried it. I knew it wasn’t going to work as I have done similar shit while inpatient and it is always a trigger for me.

I had written in the notes I wrote for the therapist to update her that I was thinking of getting ginger gummies and just sitting somewhere to eat them. By the time I came home, the plan was set. I figured out the location and all the how, what, when, where, and why. I have the four choices listed above on which one to choose when those urges arise. I will be left to my own devices and the choice really is mine to make. No one can stop me, no one needs to know, and no one will be there when the decision will be made. I am on a precipice. Question is, do I have a hand (figuratively) to hold me back…

I’ve decided that I won’t tell anyone about my suicidal thoughts. Might mention them here but just the thoughts. No one seems to want to hear them anyway.

I am an idiot

I am an idiot

I can’t sleep because of pain. I was starting to get drowsy around 2130 and I laid down. Around 2300, I got heartburn and the damn foot/ankle pain increased. I looked at it. Veins were popping and the swelling that I had earlier had spread down to the atrophied part of my foot. The swelling is causing me so much pain as my foot feels like it is ready to burst.

I re-read and edited my last blog. I wrote it on the fly and I should read what I wrote before publishing but I never do. I didn’t like the ending but oh well. I sent the blog off to my psych and then when I re-read it, I felt like a fucking idiot. There was stuff in there that she definitely should not know. Now I am just more pissed off at myself. I hate when my thoughts get written and they vanish from my brain only to be read again somewhere, like here or in my journal.

I am having a hard time concentrating because the pain is so fucking intense. I took a breakthrough med around midnight. Not sure it will do anything about the swelling but maybe the pain will go down a notch or two so it can be bearable enough to sleep. I am not sure though. I am never sure. Pain can go down or up. I have absolutely no fucking control of it whatsoever.

I shaved earlier today and now the stubble has come back. The goatee part that has some thicker hair is itchy so I probably will shave it off again. My moustache is growing back ever so slowly. It is getting there. I was reading in the CRPS article how removing breast tissue might cause CRPS to happen in the chest. Now I am freaked out and stuff. If I can’t have top surgery, I might as well fucking die. Won’t matter how much hair is on my face if I still have a fucking chest. This may not happen and I have to believe this. I am not sure when I will have top surgery. I know it will be when the construction to the house is done but it hasn’t even fucking started yet so not sure when the hell it will be. I have to have full use of my arms until then.

I swear, all day I thought it was Saturday. I kind of knew it was Thursday but it just felt like a Saturday to me. Saturday I am supposed to go out with friends for dinner. I got to check the bus schedule to see what time I need to leave for the station. It’s been a while since I have been to the Square on a Saturday. If I can’t be there near the time I am to meet up, I will just hang at Starbucks for a while.

I am really hating myself right now. I so want to be fucking dead and instead, I am still fucking here. I guess I still have next week to sort things out. Next Friday I meet with the new psychopharm. That should be interesting. Not sure what he will do as I am just seeing him for a short period of time. I really want to get off the Lamictal. I don’t think it is helping me at all. I miss being on the Trileptal. It really helped to stabilize my mood and some what help with the pain. I really don’t know what is out there for bipolar disorder but I know I won’t go on Depakote. I don’t want the blood draws. Maybe being on nothing is better. I am saying this with a suicidal mind. Being on nothing will just drive me to the grave sooner.

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.