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.

Trans issues 27.7.19

I can’t wait for top surgery. Things on chest are giving me such a hard time. I feel so ugly and humiliated. This isn’t me when I see them.

Kind of worried with the CRPS on left side. That is the side my left ankle is affected. The way they described how they cut the nerve to the nipple makes me nervous. I could lose feeling but that isn’t a major concern for me. I just want the fucking things off!! The right one might be more of a problem as it is bigger. Swear I have an orange on left and a small watermelon on right. And fuckers are heavy. But it might be that I just hate them so damn much. Worst part is they have become hairy which really bothers me. Becoming a man is so hard. Makes you feel really fucked because you aren’t congruent with how you feel.

The major thing is getting these things off. I would tomorrow if I could but I am being “selfish” waiting for the damn construction of the house to start and finish. I thought it would at least be started but it hasn’t. I haven’t asked my sister for fear of another argument. Been doing small stuff in my room as it is all I can handle.

Yesterday just putting groceries away flared my back up. It really scared me as I couldn’t touch my back without it hurting. I haven’t had that bad of pain since getting cauda equina syndrome x2. I have no red flag symptoms but I didn’t last time. I lost function of my bladder today. Things with it have been messed up since the middle of May. I moved to sit up and reached for my laptop which wasn’t too far from my grasp when urine squirted out. Luckily it wasn’t too much, but freaked me out. That was how I got CES (cauda equina syndrome) the second time. I had severe back pain and then started leaking more than I usually do. The disc was a different level than the first. And according to the surgeon it was huge. He had no idea how I was still walking. Been having intrusive memories most of the night and right now as I am describing it. I’ve never really talked about how I felt about it. I knew what I had and just focused on getting better, making sure I didn’t do what I did the first time, which was basically not having a clue what to do or who to see. I didn’t go to Spaulding, which is a huge rehab hospital because I’ve dealt with their lab and just thought all the people there didn’t know what they were doing. I was wrong and I am glad I was as i got a terrific PT now for my CRPS (complex regional pain syndrome) stuff.

I hope doing all the things I’ve been doing doesn’t cause me to blow a disc that is already herniated. I have herniated discs from levels L2-S1, worse at L5-S1 and again at L2-3 where I had CES x2. My first diagnosis was at level L4-L5. I fear if I have surgery again, I might need a fusion and I’ve heard bad stories about them. No one I know has found relief from them. And the stuff I read was fusions were only to be done on the neck, not the lower vertebrae. That is why I never want to have it done. I’d rather be in pain, but if other stuff is going on like loss of bowel/bladder, weakness in lower extremity, numbness from anywhere waist down (including saddle area and sex organs), then I will consider it. But only if I have a capable surgeon one who has done them a lot of times and have had success with them. I don’t want a neurosurgeon who only does the brain or pituitary gland. The whole thing scares me.

When I was able to see my therapist again (the 16yr one), she kept on telling me I went through a trauma. I stay away from that fucking word so much. I denied it tooth and nail until I started having PTSD symptoms. To this day I cannot go near the 3rd floor of the hospital where I worked. That is where the operating rooms were. I always wanted to see them but not as a patient!

I sent my psych an email about the top surgery and how I felt about it. She will sign me off on it but I really want to have a discussion with her before she does, just to make sure I am ready and she knows I am ready. It is a huge deal and I’ve gone back and forth with it in my mind. From i am attached and what will it mean to not have them there to seeing a man’s chest and saying I want that. I want to be flat and not have these things. I tell you, when they started developing, it threw me for a fucking loop. I thought getting my menses was bad. Nope. Having things grow was not what I wanted. Then to have a mother molest you because of “concern” more than once because one was bigger than the other and sending me to see a cosmetic surgeon when I was 13, fucked with me so fucking bad. I was so embarrassed this male doctor was talking to my mother about it but it would be when I was older. I nearly wanted to fucking die on the spot. I didn’t want them to be the same, I wanted them fucking gone!! I had already started hating my mother since I was 10. This just added to it more. Makes me feel so ashamed I have them and aside from cutting them off, there is nothing else I can do. Makes me feel really depressed, like I am in this pit I can never get out of.

But none of this matters if my CRPS pain isn’t controlled better. I have a date planned to end it. I am trying so hard not to think about it as I want to see my psych again. At the same time, while the cat’s away, the mice will play keeps running through my mind.

Tuesday is Broken

Tuesday’s Broken

I was feeling pretty crappy today. Back pain was really bad and I just felt really, really down and worthless. I posted how I felt and someone responded with how I help people with how I feel with my posts and raw emotions. After I asked her if I could share her response and she said I could. I posted it on my IG and FB. I also sent a screen shot of it to my psych as she told me the things this person said, maybe not the way she said it, but the sentiment is the same. While I was thinking of all of this, Sugarland’s song, Tuesday is Broken popped into my head. I couldn’t find a more fitting song in that moment.

Last night I was transferring Gatorade from one bottle to another and ended up spilling it on my bedding. My back was hurting terribly so I wasn’t going to do it right then. I was cold because of the AC so I got some blankets and covered myself with those. The back pain didn’t ease up. When I woke up this morning to take my morning meds, I accidently doubled my dose of breakthrough meds and that made me very sleepy. I have been sleeping on and off all afternoon. I had sent my psych an email around 4 am saying I was worthless. I half expected her to call me but she didn’t. I also told her how suicidal I was feeling because my ankle and foot were no longer dissociating. I was getting crazy thoughts and wanted to go through with them so bad. I emailed her instead and that kind of lifted my load a bit. I have not heard from her at all. I hope she is getting my emails and they aren’t in cyber space somewhere. I haven’t been getting a “could not deliver” message so that is good. I think I have emailed her nearly every day this week. Been trying not to and the more I try, the more I fail. I just send her one email a day unless I am having a hard time, like I was last night. I honestly don’t remember being up at 4 but I must have because that is the time I sent the email. I think I also shut the AC off because of being cold. Today has been really hot that the AC is making my room cold but not an ice box. It is so fricken muggy in the house.

I made an egg burrito for the first time in ages. It was good. I put picante sauce in it before I rolled it up. I found that was better than spooning it onto it with each bite. I might make another tomorrow. I bought the flour tortillas. I have been eating them with chili. I fell in love with a Hormel chunky kind with beans. It has a little bit of a kick to it as my nose always runs when I eat it. I really want to make my cookies but it has been so fricken hot that I don’t want to be in my kitchen at all. Maybe I can convince my sisters to install a wall unit and shush my mother about it. It just makes cooking so hard in the summer.

I was still feeling a little sick after I ate. I think it was because of the pain meds. I took a Zofran so I wouldn’t hurl the contents of my stomach. I had coffee. I wanted another cup but my shirt was soaked with sweat and I didn’t want to stay in the kitchen anymore. The testosterone has so increased my sweating. I hate that I have to wear deodorant all the time now because otherwise, I stink within minutes in this heat, even if I just came out of the shower. I really hate that I have to put off top surgery until the construction is done. I am starting to look stupid because I have facial hair and female boobs. I so hate the things on my chest. I hate them more and more every single day. I think that is why I have been feeling such loathing and worthlessness. I have no idea how to counteract the gender dysphoria. I have been shaving again. I had wanted to stop to see what grew but my nephew said that if I keep shaving it will grow faster so I am doing that. There is one slight problem…I like having a smooth face so I am not sure growing a beard, even though I really want one, is going to be possible. I could just grow it and see how it feels and then if I don’t like it, shave it off. I am not going to let it grow crazy like my nephew does. I can’t stand when men do that. It just drives me crazy. I like when it is neat. Maybe it is just me.

The good news is that because I rested and took meds, my back isn’t hurting me as much. It could have flared up because the thunderstorms were passing through and the pressure changes set it off as well. Either way, I am just glad I can move without pain again. My foot is killing me but that is a constant thing that will never go away. I just hope it doesn’t make me suicidal again like it did last night. Pain had jumped from a 12 to a 15 to a 17 within a few hours. I am really exhausted from it, even though I really haven’t done much today. Tomorrow I want to take down the recycling in my room as it has been growing. I just got some study money for Amazon so I might order the bins I was looking at. I was planning on getting four but I might get six. I was going to buy another foam topper that DOESN’T fucking move but I am too afraid it is going to make me hot because of the gel. I also don’t have a place I can spread it out on for 24 hours. I might sleep in the recliner in the living room if I do get it. It has to air out for that long in order for it to “set.” It is also summer so being in the living room right now would totally fucking suck because it will be hot as hell and I won’t be able to sleep. I am completely heat intolerant because of the nerve injury and T. I might hold off till after the construction so I can maybe place it in the dining room floor for 24 hours and then carry it up to my room. I just hope it doesn’t sell out by then because I will be pissed!

Feeling anxious again so I took my pulse. It dropped 5 points since I last took it. It has been steadily dropping today. After I ate it went up to 89, then went down to 63 and now it is 58. It will probably get lower as the night goes on. I have no idea why my pulse drops when I am in pain. My blood pressure is good; I don’t get hypotensive or hypertensive. I just hate feeling fearful for no reason. I hope tomorrow I can do some more stuff around my room, like putting more clothes in the drawers that I cleared out. Or maybe just put my PJs in there so I know where they are, if I remember LOL. I also had trouble peeing today because I forgot to take my urine retention pill. I was having bad bladder pains and spasms. I was wondering why and then I realized I hadn’t peed since the morning. I wasn’t getting the urge to go because that fucking connection seems to want to work when it wants to work, not when it is supposed to thanks to Cauda Equina Syndrome. My sister was yelling at my mother for something so I didn’t want to go downstairs. I hate that I am walking on eggshells in my own house again because of the bitch bully.