about my hiatus

About my hiatus

I have been in the hospital the past three months. I was not in a state where I could write a blog. I was doped up most of the time and barely knew what was going on around me. I was sick with renal failure, covid, and infection called C diff. I was barely eating so they had place an nasogastric tube down in my stomach for a bit. I don’t know how long this tube was place. I had taken a pic of it sometime in Sept. I missed how the season ended for my Sox. When I came home for a bit, I thought it was the end of Aug but it was the beginning of Oct. I was home for a week or so before going back to the hospital for psych. I spent four weeks in the hospital on the psych unit. I got really good care there. I learned my top surgery was postponed and I was very, very devastated. It was good that I was in the hospital because if I wasn’t, I probably would have ended my life right then. I was so angry and frustrated as I didn’t have answers and had to wait for them. I had no access to my phone so I didn’t have the usual supports I have when I am home. It was extremely frustrating. The staff tried to help me but all they could do was sympathize with me. There was only one LGBTIQQ staff person on the unit and even she couldn’t really understand my predicament.

I have an appointment next week with my pcp to get medically cleared for top surgery. I really hope this conversation goes well. It will be the first time meeting my new pcp as a fully conscious being. The first two times I met her, I was still in the confused, delusional state. All I could do when I met her was blink my eyes and nod yes or no.

I am having difficulty writing in a constant stream of consciousness. It has taken me two days to write three hundred words for this blog. My thoughts are still hard to write with everything that I have been through. It was really difficult in the hospital as I really lost the ability to write. Writing has always been a coping mechanism for me and when I couldn’t think to write, it hurt, literally. I would get these headaches that felt like my brain was being crushed. It literally hurt to think. I got several migraines while in the hospital. I would wake up around 0330-430 every morning with severe migraines. It was terrible. The trauma of everything I went through was very difficult to process. I had become catatonic at one point.

I am still feeling wicked depressed and anxious at times. I am off all pain meds and off my Ativan. It is weird not taking meds around the clock like I once did for years. Now I just take it a few times a day as I am taking my blood pressure med three times a day and take the Latuda at dinner time. It makes me tired and I often find that by 1900 I am sleepy. But that could be because I have been waking up before 0500 most mornings. I find it hard to get back to sleep with these early morning awakenings. I am so much clear headed now than I was in the middle of October. My memory is still not there on what transpired the six weeks I was on the medical floor of the hospital. I just have these weird dreams/delusions that sometimes intrude in my head. One day while in the psych ward, I was flooded with memories and couldn’t make sense of things at all. The anxiety it produced was terrifying. I was convinced I killed my mother and a bunch of weird shit around my house. Taylor Swift music got me through a lot of the anxiety but while in the psych ward, I didn’t have my music to calm me so it was very difficult to cope. Now that I am home and have music again and my laptop, I am coping so much better. I am reunited with my online friends again and it feels so good because I was missed so much. I have missed blogging so much. I regret that I didn’t write before now but it has been hard finding my writing voice again. It has been a real struggle.

In closing, I am going to try and write a blog a day like before, even if it is less than 500 words.

the 330 am blog

The 330 am blog

I’ve been up since 0130 because of pain. My right shoulder hurts and didn’t get better until I got up and started stretching it out a bit. I’ve been in a weird mood since waking up. I feel like I should be suicidal with the amount of pain that I am in but I am not. I don’t know if this is a good sign that I am getting better or what. I think the groups is helping me though I don’t know how because the skills I haven’t learned really. I know what they are but I haven’t worked on them. I have tried the DEAR MAN skill that my therapist wants me to but we had to go over it and then I dissociated afterwards so I don’t remember a thing about what we talked about. I didn’t even know if I had attended the session so I asked her if I did. She said I did. So weird.

I have one more week of groups and then I am done and I don’t think I will go back. It was too stressful. Plus my email kept deleting the emails that the clinicians were sending and I don’t know why that is. I got to make a rule so that it goes to my inbox and nowhere else.

My therapist wants me to send her screenshots of the handouts I am given during groups. I think she wants to make sure I am going and I find this irritating. I feel like she doesn’t trust me. The agreement was that I would text her and Then I would have a response to what I was texting. Thing is the past few days I haven’t had any responses to what I text her about. I feel like this is a one way street again.

I haven’t really participated in group that past few days. I listen but I have been getting bored. Even the group that I thought would be interesting was a flop. I didn’t like it at all. I have been going to the first three groups because those are the most important ones as they are mostly clinical. The first one is just a check in and the other two are either CBT or DBT groups. I find it interesting that they are using both therapies in the program. Both are useful, don’t get me wrong and they do work to their own extent.

I love the therapist that I have in the program. He is so energetic and empathetic and fun to work with. He is a really good guy and I love when he leads groups because he makes them fun instead of boring. He brings this energy that is positive and soothing. I love it. I am going to miss him when I leave. I feel like I should write him an email but I think I will wait as it is the weekend. I am surprised the hospital doesn’t recognize MLK day. It is this Monday and my therapist is off but the program is on. Very weird.

I have put back the weight I lost. I am disappointed in this because I was able to go below 200 and now I am a few pounds over. My struggle with weight is so finicky. It all depends on my appetite and if I eat regularly. Lately I have just been eating one meal a day because I usually full and don’t want to eat anything else for the day. This talking about eating is making me hungry. I think I am going to make scrambled eggs with cheese. I just hope we have the bread.

karma returned?

Karma returned?

Yesterday, I helped two strangers. On the way home from the hospital where I had my appointments, I noticed I lost my ring. I had no idea where it could have been. Last time I felt it was when I was washing my hands and a part of me wondered if I accidently threw it away with the paper towels I was using as I was adjusting it on my finger. That was the last time I remember seeing it. I should have put it on my other hand where it wasn’t so loose but I didn’t so I thought I lost it. Today I called up police and security of the hospital to check to see if someone turned it in. Someone had. I took the next bus to the station and went to the hosp. While there, I decided to go to the lab and see my friends. It was good to see them. I miss working there. I even had a dream that I had to FedEx a sample to get results by 5 the next day. Weird. I think the lab will always be a part of me, even if they get my name and gender wrong. Some of my friends who follow me on social media know I am transitioning. I wasn’t out to all of the people in the lab so I just had to take it.

I had a good session with my therapist yesterday. I had written her a letter which she said I started off strong and then went off on a tangent. I don’t remember what I wrote so it is possible. I am finding transference with her gets easier as time goes on. She kept my letter and the papers I printed out which were the SSF part A. I told her we can use them and they can be our talking point. It will help focus things. Least that is what I hope will happen. Just hope she doesn’t sort of hold me to it every meeting. My psychopharm is. She pulls out the sheets every meeting. She asks about my suicidality. She has been asking since I told her to. My therapist has too. She wanted to know more details about it but I didn’t want to talk about it. I told her it would be a few months before I was ready to act on my thoughts, though I didn’t say it in those words. I am still not sure I will tell her I was going to kill myself.

I told my psychopharm that if I don’t feel better by Monday, I will consider going inpatient for a while. I really hope I don’t end up back south east of Boston again. That place was terrible. I would really hate having to use catheters there. I would rather have a foley put in so I won’t have to worry about it. I get my order of supplies tomorrow. I plan on packing a bag in addition to trying to clear the alcove space that needs to happen. I hope this bag that I have been trying to find is there and not in the other alcove.

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.