Feeling frustrated not being able to speak

Feeling frustrated not being able to speak

“Running on empty. There was nothing left but doubt. I picked up my pen and wrote my way out.” Lin-Manuel Miranda

Someone on Twitter had this as their tweet and I had to keep it. It really is fitting as right now, I really need to write how I feel as things are becoming so overwhelming. All week I’ve thought about nothing but suicide. I was sending my psych emails and she would call me out of concern. After one of the calls, I sent her an email explaining how things get for me and I think she understood. I never got a response so I can’t say how she took it.

All week my voice has not been above a whisper. There are a few times where my voice seems to be there but only for a few seconds and then it is gone again. I have been in contact all week with my pcp about this. He was reluctant to prescribe a steroid only for fear of side effects. By Thursday I was not doing any better and I was feeling pretty damn frustrated. My pcp was away so I had to wait 24 hours for a response because no one was covering him apparently. I saw his nurse again and I stressed to him that I wanted to be on steroids to see if they would help. Instead I got a message asking me if I wanted to proceed with being prescribed Friday. I was so fucking pissed off I swore and told the nurse off. I told him that if I wasn’t going to be prescribed anything today (meaning yesterday), I was going to go to an emergency for the throat. He said the message would be part of my medical record and he didn’t like my tone. I didn’t give two fucks. I was aggravated and frustrated that all week I’ve had to rely on email messages to figure out what the fuck to do about my voice. I emailed my psych, who was really worried as she kept harping on it, which forced me to do something about it. I went to the emergency department at another hospital.

I couldn’t talk so I wrote things out that they would need on index cards. I was seen my a physician assistant rather than a doctor. I had to explain what had happened, that an allergic reaction from one week ago caused me to lose my voice. She said that I would need to have a camera put down my throat to see what was going on and she would have to get a doctor to do this. I had to wait some more while she was getting someone. I was more annoyed at this. So this doctor comes in and I have to tell my story, again! He said he would put a camera up my nose to see my vocal cords. Great, another invasive procedure. There was some pain despite the lidocaine as they couldn’t really thread the camera down my nose because of my septum. I don’t know if it was swollen or deviated or what. He might have said but I don’t remember. First he said that things were swollen and I would need steroids. Then he left as he said he wanted a laryngologist to see the video and go from there. He comes back and said that I would need speech therapy as the muscles around my larynx aren’t moving like they should. For Fucks Sake!!! He said just to take an NSAID and make an appointment soon. The PA comes back with the discharge paperwork and some names of some doctors that I can try calling for an appointment over the next few days, which means Monday as it is now the weekend. I am glad I don’t have to be on steroids but I am not happy this isn’t a quick fix. I am to avoid speaking for long periods. I emailed my psych to let her know what was going on.

I came home and was basically crushed. I was overwhelmed that I didn’t kill myself like I wanted to. I was depressed that I had yet another invasive procedure and would probably need another one with a better camera for them to know what was going on. I further did not know how I was to have psychotherapy on Tuesday or see the new psychopharm on Thursday as both require me to speak for at least an hour. All I kept thinking about was just killing myself and now that I know that ginger is lethal for me, I was thinking of getting some gummies or something and that would be that. I emailed my psych telling her I was overwhelmed with everything. She asked if I wanted to talk and I replied you mean whisper. I told her to call me whenever as I had no plans for today.

I told her I wanted to cry but it hurt to have an ugly cry. She said crying would be good. I just can’t seem to be able to do it as my throat hurts so I have to stop. She wants me to follow up and if I can’t get a hold of someone, she will do it for me. Now I know she is really, really worried. She has never heard of this happening. I had sent a message to my urologist last night asking her if the new medicine she has me on can affect other muscles. It is the only thing new and I am not sure this is just a medication issue. She responded that she doesn’t think so but I should ask my pharmacist.

I cannot believe what has transpired in just ten days. I have been trying to write all this since Wed but every time I tried, I would start to cry and my throat would hurt so I would have to stop writing. I couldn’t even talk to some one about it as I have no fucking voice! All I could do was type, which is not the same fucking thing as I found out. Communicating with my mother is the hard part. I need to write down what I need to say to her because otherwise I would have to repeat myself three or four times and that just hurts too much when you have no voice. I had wanted to do some stuff around my room today but my psych said I need to rest as much as possible because of everything. I took a shower and now I am going to try and finish Harry Potter and the Order of the Phoenix. I have four chapters left in the book. Unfortunately, the chapter I am on is when Sirius dies. I hope I don’t cry.

I am an idiot

I am an idiot

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

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

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

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

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

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

Chronic pain, sudden death, and other stuff

Chronic pain, sudden death, and other stuff

**warning long read**
Last night on Twitter, a fellow CRPS (complex regional pain syndrome) person posted a link about CRPS and complications (https://www.practicalpainmanagement.com/sudden-unexpected-death-chronic-pain-patients ). One of them was that in certain patients, high pain caused a decrease in heart rate. This has been happening to me for some time now, usually precipitated by anxiety (for some reason, the anxiety happens when my heart rate is below 60 beats per minute and pain is above a 10). Most of the time the anxiety is a signal my pain is going to get worse, which further decreases my heart rate. This can cause sudden death eventually, especially in patients who have had the condition for greater than 2 years (I’ve had the condition for more than 8 years). This paper was about those that had the severe case of CRPS, though they didn’t specify which type (there are two types, type 1 being the gross appearance where the edema, purple color, and pain are noticeable and then type 2 (what I have) is less discernable) and more than one extremity were involved (I just have one, unless you count the foot and ankle as two). My blood pressure is usually lower than what it is normally when I am in a flare, another warning sign. Even though I am on blood pressure medication, including a beta-blocker, I am wondering now if the anxiety is not anxiety but possibly an arrhythmia caused by the pain. Of course, I don’t get this every day and certainly not when I am at the doctor’s office. I sent this article to my PCP and neurologist to have them understand the condition a little better as it gave specifics about the condition. Today I sent my pcp the article about sudden death with chronic pain patients and how methadone can some times lead to cardiac dysregulation. He wanted me to be on this but I now no longer do. As I am home most of the time, I really do not want to die suddenly for a family member to find me. It is one thing for me to die by suicide (which prevents me from doing that at home) and another to die from causes unknown.

I’ve had quite a week that has left me feeling ugly, gross, and perplexed. Monday I saw the therapist and while we were talking, I told her about the weight loss. I’ve lost around 30lbs this year and continue to lose due to not eating. Speaking to my psych today, she said there was a lot of reasons for the no appetite and the fact I physically cannot move around enough to make myself something to eat. The therapist, to me at least, was saying that I was controlling my intake as “it was the one thing I can control.” I wish that was the case but I would have done that long before now. My psych is going to reach out to her and I hope some understanding is made. I told the therapist about the events over the weekend with my mother not respecting my privacy. She (mother) again disregarded it as I was getting ready for the appointment. She kept on leaving the bathroom door open as I was undressed and I kept on closing it, which annoyed her. I did so because I didn’t want my nephew to see me naked. She said he wasn’t home. How the fuck was I supposed to know this when he leaves his door closed most of the time?? The therapist and I talked more about the abuse and how I feel my mother is always looking at me in a strange way that I cannot describe, which leads her to find something wrong with me so she can touch me out of “concern.” Even as an adult she watches me when I get out of the shower. Now when she happens to be in the bathroom while I am in the shower, I will stay in there until she leaves, even if that means drying off with the shower curtain closed. It totally makes me uncomfortable when she does this.

Another issue we talked about was how I feel about my body. I told her how I hated it and not just because I am in a wrong one. I feel ugly about it, especially how my face looks. Most of it stems from internalizing my father calling me fat and ugly most of my life. It disgusts me that I am fat but because he said so, I feel I need to be (I know that is weird but it is how I feel and the current weight loss is stirring up some very mixed feelings). We also talk about the urologist appointment the next day to try and ease my anxiety about it. I felt that there wouldn’t be invasive exams or testing. I couldn’t be more wrong.

I went to this appointment feeling nervous about it. I had a bunch of paperwork to fill out about the issues that I was seeing the urologist for. The doctor comes in and the first thing she wanted to clear up was my transgender issues and how it could be difficult as I am still biologically female yet transitioning to a male. I didn’t think nothing of it and felt it was okay (more on this later). I told her about the history and how the nerve injury caused my bladder to become dysfunctional and what my current symptoms were. She was thinking I could have small fiber neuropathy due to the small nerves being damaged while the bigger nerves were compressed. It made sense to me and somehow she thought is would also affect my stomach. I didn’t think anything about this but just thought it strange until I got the visit summary (more on this later). She said I would need urodynamic testing (this I knew would happen) and would I be willing to have it done today. At this point I am internally freaking the fuck out and I guess just to get the damn thing over with so said yes. She said she would see if there was an opening and she would be back. Major anxiety filled me at this point. She came back a little while later with a nurse. Apparently there was an opening before the next patient and I was kicking myself in the ass.

They brought me to the room and the test was explained. I had to sign a consent form to be aware of infection and some kind of urethra problem. I had emptied my bladder before seeing the doc. It was now an hour or so after I gave a sample and the nurse said she had to drain my bladder before the test. OK. There was 300 CCs. I thought that wasn’t bad. The test went on and I was to tell them how I felt while my bladder was being filled and when I got the urge or was uncomfortable. While this was happening the nurse decided to show the doc her whale watching videos that she took the day before. WTF. So here I am exposed with catheters in me and the nurse and doc are talking about the fucking whales and then showing me the pics as well. JFC. As they were talking, I didn’t want to interrupt when I got the fucking urge so waited until I could speak. When I got the urge, the doc said she was going to fill me some more until I felt like I was going to burst. That took another few minutes or longer. So I said when that occurred. They kept on looking at the monitors to see contractions and such. I then had to pee while the catheter was in me. They started to run water. Nothing. Then they tried me sitting in a commode. Nothing. I was trying to push but couldn’t for the life of me get the fucking urine out. So I told the nurse the only time I know I am peeing and when I stop is when I hear it. She told the doc this and left me alone for a bit to see if that helped me to go. It didn’t. Now I had to be cathed to get the urine out. While she was setting me back up again in the chair, taking out all the stuff she put in me, I asked how much did she put in me and she said 500 CCs. I thought to myself, no wonder I couldn’t pee despite me drinking over 1000 CCs before the appointment. She drained my bladder and I had more urine than she put in me. It was 800 CCs. So while there I had peed more than 1100 CCs of urine. I was brought back to the room after I cleaned up and put clothes on to discuss the results.

The doctor came in like 20 minutes later. It was around noon time. I hadn’t eaten anything all day and was starting to get hungry. My anxiety was still high from the testing and all the invasiveness of it. I am was having intermittent memories come back of the abuse my mother did as well as the traumatic medical exam I had when I was a kid as I sat there waiting for the doctor. I was trying to remain calm but felt myself zoning out, almost dissociating from the feelings of disgust, grossness, and violation from the past. Finally the doctor came in and she told me there were two kind of muscles that made it possible to void. One set was around the urethra and the other two were around the bladder neck. I had dysfunction around the bladder neck. So she wanted to put me on an alpha-blocker, which I knew was for retention. I was to see her in four weeks where she would start to taper the other retention med I was on that was started while on the psych unit. She also gave me some reading material about small nerve fiber neuropathy. When I picked it up at the pharmacy, the pharmacist told me there was a chance of orthostatic hypotension (basically dizziness upon standing as the blood pressure drops) so I was to get up slowly should that occur and some eye condition that was highly unlikely.

I felt so gross and wanted to shower when I got home but my pain flared up and I didn’t want to run the chance of causing more pain. I also wanted to eat something but because of the emotional state I was in, I lost my appetite and food wasn’t appealing. I really didn’t even crave anything. I was reading over what the doctor had given me and saw in my “issues” was female to male transgender (FTM TG) person. I kept on getting notifications from the patient web thingy about results of testing that was done. I logged on to see them then looked at the problems/issues and sure enough the FTM TG was there. I got really mad and felt like this was discriminatory. I sent the doc a message that I wanted this removed. It was after business hours so I didn’t hear back till the next day. After a series of messages back and forth, I learned that it was the fucking dumb stupid electronic record that had put the “problem” there and the doc couldn’t do anything about it. She let my PCP know about this as she agreed with the points I was making and she assured me that she did not see it as a problem. Also listed in the issue/problems was GERD (gastroesophogeal reflux disorder). I thought that was odd as I already had it but apparently, it could also be caused by the small nerve fiber neuropathy she was telling me about. In the paperwork, she listed that I could have a skin biopsy for the neuropathy and listed the two neurologists that do it. Oddly enough, I already had contact with them as one of them was the one to diagnose the CRPS.

The past two days have been rough with pain and suicidality. Tuesday I was going to end it but because of rain, I postponed it, least until my pain flared up wildly. I had given myself a time while home to do it. I was thinking about it and fantasizing about it. My psych had wanted me to call her but I was not going to. I knew if I spoke to her, she would most likely hospitalize me and fuck that. I kept looking at my means and kept trying to get the nerve to do it. I even thought of self-harm to try and distract from doing it but I couldn’t bring myself to. I really wanted to end my life badly. Around 5, I sent my psych a message saying she had my permission to look at the notes. I hadn’t sent any message to my psych about my suicidality and finally around 2200 or so, I did saying all the distress I was feeling the past few hours after she asked me who I saw that day.

I rarely have eaten since Monday. I have lost another 10 lbs or so since the end of July, making it around 30 lbs for the year. My clothes are baggy on me and I don’t like that. I like loose fitting clothes but not the kind where I have to really tighten my belt to keep them from falling down. The shirts are big but that is okay. Anything to make the appearance I don’t have breasts are okay with me. Yesterday I sent my psych a goodbye letter. I felt I had to because I really think I am eventually going to overcome the nerve that is stopping me from acting on the suicidal feelings. When I spoke to her today, I said as much. She wants me to keep in touch with her like I have, even if I send her a bunch of emails. She still wants me to be in touch with her should I feel like acting on my thoughts or thinking about acting on my thoughts. Trouble is, as I have learned the past few days, I cannot bring myself to call her nor even send her an email for her to call me. I am too scared of being sectioned or having to choose to go in voluntarily or not. I refuse to go back to the hospital. I will only go if I attempt and obviously, fail. I keep thinking of what the father of suicidology has said, “you should not kill yourself if you are suicidal.” I am trying to kill myself when I am not suicidal, which is slowly gaining momentum.

and just like that…

And just like that

I woke up when my med alarm went off. I know I fell asleep between 0230 and 0300 so I had a good amount of sleep. I didn’t take my meds right away and dozed until a little after 11. I had to use the bathroom and sort of wake up to talk to my psych around 12. I wasn’t in any kind of mood but pain was already a 7 and I hadn’t done much moving around yet.

I was still sort of dozing and kind of wondering what to do today when 12 came and I called my psych. She didn’t answer so I left a message. She called me back a few minutes later and we talked. I didn’t say anything about the plans for next week other than my appointments. She wants the therapist to be in touch with her and she is reaching out again to the new psychopharm that I will be seeing end of the month. She said she should know what her plans are by then and that I will be the first to know what they are. Back of my head was saying that was good but I won’t be here.

I had to use the bathroom again an hour later. My mother was in the bathroom so I had to wait. I am on my phone when she barges in so use the mouthwash. WTF. I was so fucking triggered because she closed the door and that always makes me nervous. I yelled at her and she is like it’s not like haven’t seen you before. WTF. I am a fucking adult who should be able to have some privacy when using the goddamn bathroom. Bad enough I have been dealing with the intrusive memories of what she did to me as a kid that now is just why the fuck am I still living with her. I just want to fucking die and that is the end of it.

Came back to my room and soon as I sat back down on my bed, pain shot up to a 10 and I was back to my suicidal mood again. I sent an email to my psych. I am supposed to be in touch with her Tues after my uro appointment. I am so apprehensive about it. I know I most likely will have to have an invasive test to see what is going on. I don’t know if I will go through with it as it is just creeping up the anxiety I have and making the PTSD stuff worse. Tentatively am planning on going to my location that day and rolling the dice.

I am not sure if the email that is in my drafts will be sent to my psych next week before rolling the dice. I can’t send it now and I really did not want to say what I had to say in an email. I wanted to mail it to her but I don’t have a physical address for her so that is out. I am sure I can probably get an address via Google but don’t think sending something to her home address would be a good idea. Fucking hate the institution she worked at for forcing her. I am just so angry.

I decided to make something to eat and that proved to be the death of me. I had just finished eating and was finishing up the rest of my coffee when pain just went berserk. It went up to a 12 and I literally could not do anything but force breaths out of my lungs. When the wave of pain slowly went down again, I put what I used in the sink and limped my way to my room. I couldn’t bear full weight on my damn foot. Going up the stairs was fun. I decided to at least put some clothes in my bureau and then I emptied my waste bucket by my bed. Within minutes of sitting back on my bed again the pain hit so damn hard I was breathless. I couldn’t see straight for the life of me. Pain is now a 12 maybe 13, from my ankle bone down the side of my foot. I can barely move as each movement hurts, even if it isn’t my foot. Trying to keep still is torture. I took my breakthrough meds even though I know a sugar pill would probably work better. But maybe it will bring the pain down to an 8 or 6 (doubtful, but could happen). My plans for a shower and doing something in my room are now gone. I got to take my recycling down to the bin and the trash, too. Guess that won’t happen today. I also wanted to package up some gifts for a few friends of mine that have a young child. Hope they will be happy with it. Also hoping my family mails it out should I go.

I am back to living by the hour and what that means is I don’t have a future. Everything seems to far away right now that even though Monday I see the therapist, it feels like years. I don’t know what will be happening tonight much less tomorrow. Monday is just too far away even though it is just a couple of days. An hour or minute is all I can handle right now. I am too overwhelmed with the pain and the suicidality that I can’t deal with anything else right now. It will topple the scales and I really don’t want to end my life in my room. The therapist said I was a pessimist and when I told her it was my middle name, she said she would update my medical record. Hard to be optimistic when you feel so hopeless.