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.

can’t cope

Can’t cope

I am really struggling right now. It’s 0400 and I still have not slept. I am going on 4 hours sleep after being up for 24 hours. I am hearing voices and there are four of them instead of 1 that I usually hear. There were three last night and now there are four and I feel like I am being ganged up on. I have sent emails to my psych but I don’t think she checks her email on Sundays. I told her I took an extra Invega to try and calm them down. It seems to have worked as right now I am just hearing my regular voice. She is the nice one and doesn’t tell me to kill myself or take a bottle of pills for the fun of it.

I was reading an email my psych had sent to me on Friday after I told her I couldn’t cope with everything. We talked yesterday. I often had to repeat what I said because she couldn’t hear and then my voice would be a little bit better and then go back to a whisper. I sent a text message to the therapist telling her I cannot speak. I told her it was not illness related and I would bring a notepad to communicate. If this was a problem, I told her to let me know or call me. I don’t want to skip another session. I feel like I need to talk to her. It is just that my voice keeps going in and out on me and I can only speak for so long before I get tired and cannot speak at all. Going for 45-50 minutes is going to be a test. Then I have a 60 minute appointment with the psychopharm. That is going to be fun, not! I think I am going to try and write things down on index cards so I can use my voice less. Fuck this sucks!

Tomorrow I need to get a hold of a human in the laryngologist department. I had left a message and I think that I am going to leave a message on the last two numbers to try and make a damn appointment. I don’t care who I see as long as they can give some answers and order speech therapy or whatever they need to do. I really don’t want another camera up my nose but if that has to happen so be it. I have no idea if the ED did record the showing of my throat. The PA had her camera video recording it. They didn’t tell me if this was going to be uploaded to my record or not.

I am so tired and want to sleep. My head just keeps buzzing. I think the extra meds have sort of made the voices quieter but they are still there. I know they have popped up because of all the stress I am under with my health issues. I just want to fucking cry and my throat won’t let me. I feel really shitty and downhearted. I just can’t cope with it. My ankle has been a fuck all day. I haven’t really taken anything for it because I don’t know what to do with it. How do you deal with the feelings like your foot is ready to fold on you. It feels like it is some kind of card or paper ready to be folded in half. And it hurts so much. It stresses me out.

I have decided to try and keep a notepad on me so I can talk with my mother when I go downstairs. In one of the boxes that has my stuff in it, I found some notepads. I think it will be easier than trying to talk only to repeat myself three times or more.

I am proud of myself today. I finished two books, Harry Potter and OOTP and White Fragility. I have eight books left in my challenge for the year. I have the Harry Potter and half blood prince to read and then Deadly Hollows. I thinking of reading a book my friend gave me. It’s about a water sprite. He said that it is cute. He had given me a book that I can’t think of the name right now but it was really good. I really enjoyed it. It was about a bee. I also started to read Neil Gaiman’s Fragile Things which has the short story “How to talk to girls at parties”. It’s supposed to be good as I think they made a play or something based on that story. I have so many books to choose that I am overwhelmed and don’t know which ones to read. There are quite a few books that came out in the last year and this year that I bought, all hardcover. Alex Spiere just came out with a book on the Red Sox. He is a Red Sox reporter. Jerry Remy also came out with a book. I forget the name. I am not sure I want to get it. I am still thinking about it. There is also a book on Luis Tianti (?sp) that came out. He was a great pitcher for the Sox in the 70s. He is still in the organization. He mumbles when he speaks so I have no idea what he is saying. I also went on a Kindle spending spree and got some books on Lincoln’s speeches and writings.

I got a dentist appointment in about six hours. I am not sure if I am going to be able to go. I had wanted to and then get my haircut or if the barber shop is closed, go to Starbucks and maybe write for a bit. I bought a backpack that can hold my laptop. I just won’t connect to wifi (I hope!) I shaved a couple days ago with a single edge razor and somehow took a chunk of skin off my face. I am glad I have the nix stick as it was bleeding pretty good. I have been putting Neosporin on it to try and make it heal faster. I cannot put a bandage on it as I don’t have one small enough for it. Plus, who wants to put a bandage on their face!

I still have not received my medical records from the children’s hospital where I had the traumatic medical procedure done. Been thinking a lot about the abuse at the hand of the abuser when I was little that continued through my teenage years. I think I am going to write about it and then give it the therapist. I think it probably would be good now as I cannot speak it due to my voice being fucked up. I think I will type it up so she doesn’t have to try and read my scribble.

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.