painsomnia has returned

Painsomnia has returned

With the depression making me so damn tired, I had escaped for a little while from the pain induced insomnia or just insomnia in general. The temps have dropped considerably (currently in the 20sF) so my pain is beyond measuring right now. I took some extra pain meds and hope that it works and that I don’t have to take more meds. It’s a little after 2 right now. I hope I can sleep by at least 4 or so. The pain is like a slew of nails being shot into my foot and ankle joint. I cannot describe it beyond that right now. It is making me very suicidal but I have no intention to act on it. I don’t have anything to really act with. I gave my container of ginger to the therapist a few weeks ago. The ones that I have, have proved pointless. Either 100 mg of ginger root is not enough to cause a reaction or I really need the real thing like ginger beer or shaved root.

I met with the therapist yesterday. I had to because I was getting worried I might attempt again. Plus the voices have increased because of the stress or god knows what. Think just worrying that I having a repeat of my episode of 1994 where I was in and out of the hospital with intermittent suicide attempts on the side, one that landed me a two month stay. I didn’t become psychotic during that episode. I am really freaking out because if this does develop into a psychotic depression, I don’t have my psych here to help me guide treatment options. The psychopharm (NP and MD) have wanted to increase the antipsychotic I have been taking for a while now but I have been reluctant. I fear that if they have to play with this medication to get me stable again while my mood is out of order, I think I will have no choice but to go back to the hospital. I would feel better with this being done in an inpatient setting because the voices can be tricky to deal with outpatient. Once they start telling me to do stuff, which they are starting to, I have a hard time ignoring them. They are already making fun of me because I failed in killing myself, again. I haven’t been eating anything all week. I have been drinking Ensure and Gatorade just to make sure I don’t completely lose it. I am slowly losing the will to live. I don’t care about food. My favorite holiday is coming up. A very good friend invited me to her house but I have no idea what kind of shape I will be in. My friend is more like my sister from another mother. We are close and we understand each other. We make each other laugh, especially when we get going with our dirty minds. I am trying to remember to eat something every day but when there is no appetite, it is kind of hard. My food stamps just came in so I can go to the grocery store to get some cold cuts or some ingredients to make something but I don’t really know what I want to cook. I started my grocery order list and it’s almost $200 again. It was just $100 with just my drinks and the few things I buy every month. I have no idea what is in it now. I know I put some ice cream and cookies on there. I will probably take them off. If I go to the grocery store, I will get the chocolate Reese’s peanut butter cup ice cream I like. Least it will be something in my stomach.

Because I was up in the middle of the night, I gave my T shot so I don’t have to worry about giving it before leaving the house. It is going to be hard when I get to sleep because I have to leave early. I have therapy at noon. I sent my psych an email about how the psychosis is starting to get out of hand and that I don’t trust the providers without her guiding me. This is so flipping hard. It’s been four months since I last saw my psych and started seeing the therapist. I can’t call the therapist “my” therapist because I don’t trust it 100% yet. I am still waiting for her to drop me. She wanted me to write something about the benefits of going to partial hospital. I don’t have much to say about it. I haven’t been to a partial program in more than 10 years. I didn’t like it then and I doubt I will like it now. I don’t want to go mostly due to financial concerns as well as having to be a morning person. I also would have to worry about how this is going to affect my pain levels by being out a minimum of eight hours a day.

Going to try this thing called sleep. It’s almost 4 am. I got to be up in four hours. Yay.

can’t cope

Can’t cope

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

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

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

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

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

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

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

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

Chronic pain, sudden death, and other stuff

Chronic pain, sudden death, and other stuff

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

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

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

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

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

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

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

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

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

feeling shaky

Feeling shaky

I had a few hours sleep. I had another bad night of pain that kept me up. Around 2 I started writing a letter/email to my psych. I told her how frustrated I was with her being dismissed and my anger about the institution. I also told her how difficult it is to call her when I am suicidal and thinking about acting. I had emailed her to find out when I should call her. She always said to call her but I didn’t know when it would be okay to do so. I always feel like when I call her, it should be an emergency as I usually just email her. I only call if my anxiety is through the roof and I can’t calm down or I am in overwhelm mode and need her to help calm me down. I haven’t had a response to the email, yet. I am not sure I will but we will see.

When I got up, I had one coffee, a cold brew. I had to go to the grocery store and the pharmacy to pick up my meds. I did a little shopping and got my favorite ice cream. I was worried it would be soup by the time I came home as it is really hot today. Tomorrow is going to worse. I hate summer. I went home quickly and luckily I didn’t have to wait long for the bus. I was starting to feel shaky when I came home, like I had three cups of coffee or something. I still am feeling jittery, even after I ate and had a soda. I just took some pain meds and my urine retention meds as I haven’t used the bathroom since I got up. I hate that my bladder isn’t working right. I see the urologist next week to find out what is wrong, though I suspect it is the nerve damage that I have. I don’t know if I will have to self cath or not. I hope not. I don’t know if the med I am on needs to be increased or just switched to another one. I did have success with Flomax when I was in the hospital for my second surgery. It really helped with the retention but didn’t always work after the re-do surgery as I was retaining. I remember when I had the MRI I was completely gone. My mental status was out in left field. I was being catharized and it was like I knew where I was but I didn’t. I thought I was in the ER but I was on the floor of the hospital. Least I knew I was in the hospital.

I have therapy tomorrow and I will discuss my past abuse which is going to be really difficult as I am having PTSD symptoms that are really bothering me. I had a medical procedure when I was little and I keep having intrusive memories about it. I don’t know what kind of test they were doing. I just know I was screaming for my mother and they had to restrain me as I was fighting them severely. I was totally freaking out. They had to sedate and anesthetize me. I was so distraught. Then I felt like my mother abandoned me and I was really angry at her. But I couldn’t tell her I was mad at her. I was a kid and you just didn’t say that to your mother. I have no idea if this created the voices. I was talking to them the whole time I was up and my thoughts were really fucked up. I had to take another antipsychotic to quiet them down. They were still quiet this morning and I had a hard time thinking. When they are quiet I find it hard to function. I need the “background noise” as I feel empty when they aren’t there. I also feel alone. They have been with me since I was five.

I am not really feeling anxious. It is more like agitation. I want to keep moving but don’t feel like it. I am really restless. I wanted to write to see if I could calm down as that sometimes works. Last night I wrote like three pages in my journal and it didn’t help. I just got more keyed up.

I really, really hate when you tell someone you are hearing voices and their immediate response is to tell them to shut up, like that fucking works. It irritates me so much. Like don’t you think I have tried that? Fuck. People have no clue what I go through or really anyone who have hallucinations, whether they hear or see them. I really don’t know what the “right” response would be but I know it isn’t “tell them to shut up.”

I think I am having side effects of the trilafon I took last night to quiet the voices. It feels similar to what I have experienced when I was on abilify. I probably need to take an Ativan to shake off the side effects. Living with this shit is so fucking hard. I am so tired of side effect of my medications. I know the risks outweigh the benefits but dammit, I hate the shakiness. I hate the constipation. I hate the brain fog and cognitive impairment.