baking and the tireds

Baking and the tireds

I woke up around 9. I had energy but I didn’t feel like getting up. I had to bake the zucchini bread, which I did do eventually. My mother made my custard pie for my birthday tomorrow. She is having a party for me. Little does she know that it will be my coming out party. I am not hiding who I am anymore and if someone calls me my birthname or “she”, I am going to correct them. If I am meant to be here, I damn well am going to be who I am and not who I am not. I am a male and that is all. I try to be a good, kind man.

After I baked, I got really tired. I went up to my room to relax a bit. I had to be careful with the damn catheter. I had tied the bag to my leg so I wouldn’t be touching it while I baked. I seriously am just so depressed that this is my life now. I will always have to either have a cath placed or do the cathing to excrete urine because I can no longer do it on my own. And there is no reason for it. There is some kind of nerve damage going on but nothing to indicate where it is coming from. I am so frustrated.

My pcp sent me a message this morning. I had replied to his from Friday, I think. I was upset that he didn’t want to treat my pain. He said that with all the medication changes the other docs and the psychopharm are doing, he doesn’t want to add to it. I understood where he was coming from after I had a good sleep and was clearheaded. The concussion is not helping me stay focused on things. I have been having memory problems and my rationale has not been in good judgment. I wrote back to him a few things to keep him up to speed. I don’t see him again till Feb. That is a long way from now. I also see the neurosurgeon a day before his appointment.

My therapist had wanted me to think about going to a DBT (dialectical behavior therapy) group. I thought about it but I also have a lot of questions about it. I wrote them down the other day. I hope that I remember the notebook I wrote it in because I also want her to write the stuff she was telling me to do to express my feelings in the moment when I didn’t have words for them. I talked to a friend about going to this group as physically it can be taxing. She said to give it a go and see how it fits. If it doesn’t then I can always leave it. I wonder if my therapist will think so. I have to be honest with her that this might not be for me as I haven’t had much success with outpatient group therapy.

I am absolutely dreading my birthday party tomorrow. I know there is going to be a lot of pronouns and it is just going to stress me the fuck out. I guess I can talk to my therapist about it. Might help me to unload the fears I have about stepping up this far with my family. I know they aren’t going to be accepting. Some will, some won’t. But if I have to be here, why not let me be the man I am?

random thoughts 19 Dec 19

I had therapy today. It was the first appointment since my attempt on Monday. We talked about it and she is temporarily taking away my texting her until I am more stable. If I need to talk to her, I need to use the patient web thing. I won’t use the web thing because whatever I write gets put into my medical record. I had to send her a message today when I got home though because the concussion doc that I saw yesterday gave me so much more medication than I thought he was going to give me, especially after I told him I attempted on Monday. Fucking idiot. But then, not surprised. Professionals stay away from suicide as much as they can.

I got a few decent hours sleep so when I woke up, I was rested and decided to get moving as I was antsy. I was so nervous about seeing my therapist as I wasn’t sure what was going to happen. She told me that she isn’t going anywhere and to my relief she isn’t transferring me to someone else. I get to see her Monday, which is my birthday. I will be making zucchini bread sort to “celebrate”. The one I made for Thanksgiving was gone so I really didn’t have much of it the last time I made it, much to my disappointment.

I was developing some problems cathing so I let my urologist know. She said to come to the office the next day and she would put in a catheter. I went yesterday, after I saw the concussion doctor. I have a leg bag again. I cracked myself up today when I was going to pick up the medication the concussion doc prescribed as it can cause urine retention. I laughed because I have a catheter in me so it doesn’t matter if it does or not. I am not sure when I am getting this sucker out. The nurse is supposed to call me tomorrow when my culture results come in. They already did and it was negative so I want this out of me but it might be a while. I am not sure. As much as it is a pain, I kind of like it as I don’t have to leave my room for anything. I am trying to rest my flared up ankle as much as possible because I can’t stand being in pain anymore. If I can avoid the stairs, I will. I need to change the bag into a bigger one because fucking hell, I do not want to wake up at 3 fucking AM to empty the sucker. I just hope I put the damn thing in right because I really don’t want urine on my bed!

I have a concussion that the doc is worried about because it has been two weeks and I am still having symptoms. My memory was not perfect. When he gave me four things to remember, I remembered two. I know I totally fucked up counting down numbers from 100. And even something simple as remembering the date was out of touch. I couldn’t think what month this was. It was really difficult trying to have therapy as I kept losing my words for things. At one point my therapist told me to just take a breath and think then speak whatever the emotion was. I have trouble knowing what the fuck my emotions are anyway so today I just didn’t know my ass from my elbow. I got so frustrated because I couldn’t name how I felt. She wanted to know and I had no words. She jokingly said that we both will be without a jokester for a week and a half. We both are sarcastic as fuck. She will be away from Christmas until after the first week in January. She said we need to plan something while she is gone. I am kind of scared of what that will entail. I am not sure if she wants me to do shit while I am concussed still. I don’t see the concussion doctor again until the week she comes back. Both my therapist and psychopharm are out at the same time. I’ve been in this situation loads of times though not particularly after a suicide attempt. I know I will be alright. I just don’t think they will. The psychopharm wants me to call warm lines should I get suicidal again. She gave me a bunch of links in the Boston area which I didn’t even know existed. I probably won’t call them. I’ve never really found hotlines helpful when dealing with chronic suicidal thoughts.

great wide open

Great wide open

I did a few errands today and got my haircut. Today is week 60 of my transition so I posted pics on my FB page. I also posted to Twitter for those that aren’t on FB. I then sent the pics to my sisters. My youngest sister said that I looked like my father. I honestly don’t see it. She also said I lost weight. Thirty pounds since April and I still continue to lose. The increase in the Invega dose has increased my appetite some but not to what it was. I do get hungry on some days but I really don’t eat much. A sandwich will be enough to get me through the day. Tomorrow is Turkey day. I will be going over a friend’s house where I know I will stuff my face with turkey and stuffing because it is my favorite meal ever. Actually, turkey and stuffing with cranberry sauce any day of the year is good to me. And mashed potatoes. There used to be this roast beef place that was in front of the hospital where I worked. They sold the best Thanksgiving sandwich. It was amazing. No sandwich has come close to it. I can’t even make it at home. I have tried though. Sometimes I will get the wraps, turkey breast, stuffing, cranberry sauce and roll it all up for a sandwich but it isn’t the same.

Yesterday I had therapy. I don’t see her again for two weeks because she is on vacation. We were talking and I asked in all seriousness, why I should be in therapy. It was a valid question. She had no objection to me not being in therapy though she doesn’t advise to stop as I am suicidal. She wants me to write about why I want to discontinue therapy. I have to think on it. The thing is, since I was 15 I was made to feel that because I was depressed and suicidal, I had to be in therapy. There are millions of people who are depressed and suicidal yet they aren’t in therapy. Some can’t afford it or have insurance for it. I am not saying I don’t have a serious mental illness. I know I do have it. I didn’t have therapy most of this year and have only restarted the last five months as the therapist pointed out. I can’t believe it has been that long but it has been. Time seems to have stopped for me since my psych left. I sent her the transition pics and she is wow’d by the change.

I am not sure why I have to be in therapy. Other than processing old traumas that I have not done doesn’t seem like a good reason for me. I could stay just to process and then move on. I know it won’t help the suicidality much or maybe it will. I don’t know until the trauma is processed. I think the therapist likes me. She didn’t say it yesterday but I just got the sense. I was kind of out of sorts as the voices were not present and I felt so damn alone. I was trying to tell her how alone I felt and she had no clue. It was a tough session. She kept on reading my texts that I sent her. Apparently she can read it from her computer. I don’t know what kind of app that is that does it. I know I was feeling paranoid about her. I kept thinking she was going to laugh at me at any moment. She didn’t but it was a sense so maybe I can’t really judge my senses right now.

Mary Chapin Carpenter is coming out with a new album next year. I don’t know when as she is still in the process of making it. It makes me happy that she will be coming out with new music. Only question will be, will I be around when it does get released.

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.