Tag: nerve injury

It’s 5 AM

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders, suicide

It’s 5 am

I woke up an hour ago to pee and couldn’t go back to sleep. So I am writing hoping that does the trick. I had posted in my support group for cauda equina about me having to bring my catheter bag with me to the wake and funeral. I really don’t want to but if I need to go, well, I need to go. I can sometimes go on my own but other times, it is a hit or miss, with a miss being I need to cath. I am so nervous about this. I think I am going to call my cousin later this today to let her know just to ease my mind a bit, though her knowing what the bag is for might cause things to be uncomfortable for all. I don’t know. I didn’t think of that scenario. Fucking stupid bladder!

I did what I wanted to do yesterday. I ended up showering Friday night because I just couldn’t take my hair being dirty anymore. Then yesterday when the pharmacy was open, I went and got my meds. I also got some of my favorite cold brew coffee drinks. They were on sale so I didn’t mind spending money on them but forgot to buy the M&Ms peanut candy. Will have to go back today. I want to go to the Chess Club today. I set my alarm and will be taking my morning meds later than I usually take them in case I am able to get back to sleep. I just checked the bus schedule and, oof, the bus doesn’t run frequently on Sundays. I thought I would be able to leave around 1230 as the club starts at 1300. The bus is at 1155 so I will be a half hour early. Which is fine as I want to check out the coffee shop the club hangs out at. I will see if I can borrow ten bucks from my mother as I don’t have much cash on me. Wish I remembered about the club before buying the coffee stuff at the pharmacy. Oh well.

My foot just exploded in pain for whatever reason. There is a storm brewing in the area so that maybe why. I am not sure if it is today or tomorrow. I just know I am hurting now. I don’t think I will be able to go back to sleep now. The psychosis is still there so much to my reluctance, I am going up to 6 mg of Invega to try and stop the psychosis from getting worse. I just got to worry about side effects and cognitive issues as it might interfere with my writing more. It happened when I was in college. God I hated it because I would read the same paragraph at least three times still not knowing what the hell I read. Oddly, I was taking a neuroscience psychology class at the time. When I told the professor I had to withdraw she understood. I was thankful for that.

I guess my dream of coming off the Invega is not going to happen. Seems every time I feel ready enough to stop taking it, shit like this happens. I know it is always a risk when my mood is getting bad or is already bad. Sometimes the psychosis is not congruent with my mood so there is that. I did check my “issues” and seems the NP took off BPD and just left the Persistent Depressive Disorder, which used to be known as Dysthymia. That does fit into what I have better than recurrent major depression. Either way, I do have a depressive disorder and calling it whatever doesn’t change the fact I have it. My skies are always going to be gray no matter what it is called. I am just glad the BPD has been taken off my record. I have certain criteria but I don’t meet enough to have the disorder.

I am going to try and nap for a bit. I got five hours before I need to get ready. Hope to sleep for at least 4 hours. Wish me luck!

midnight ponderings

by Midnight Demon, posted in blogging, Chronic pain, chronic physical pain, CRPS, depression, mood disorders, suicide

Midnight ponderings

Tuesday night was very difficult for me. I was in a lot of pain and processing stuff that went on in my appointment with the urologist. I was feeling pretty depressed that self-cath is now present in my life and will continue to be for some time. Then I got into an argument with my family that night and my mood went from sour to suicidal quick. I planned on taking my life after I saw my therapist today. I brought the stuff with me as well as getting some stuff ready in case it didn’t work and I was put in the hospital. I packed a light bag and left for the bus stop.

I am not a morning person. I just remember traveling on the bus and then picking up my coffee with a little time to kill before I had to board the train to get to the therapist’s office. I was not all present while meeting with the therapist. I kept zoning out, partly because I was so suicidal. She asked me if I was going to act on it and I must have indicated that I was. Then she asked, twice, if I had ginger on me. Things at that point became fuzzy. I know I went into my bag to get the ginger to give it to her and then everything else was sort of a blur. She said that I would have to be evaluated and be inpatient. She had to call security to take me to the ED as she didn’t think she could trust me. We talked about baseball while we waited. I have no idea why I told her I was going to end my life and that I had the stuff with me to do it. I honestly am so fucking mad at myself for doing something so stupid.

The ED didn’t think I had enough intent to be inpatient so they offered partial hospital which I am supposed to start in six hours. Guess what, it isn’t going to happen. I would have to leave my hour in about four hours to get to where I needed to be. I honestly have no idea how to get there by T. I am just going to skip the appointment and hope that police don’t show up at my door. Therapist will be mad but I don’t care. I left the ED after five hours. I hope to god it is my last visit there this year. I hate the ED.

Soon after I left, my psych emailed me asking if I was ok. I thought that was odd. I answered it right away without thinking. I never got a response. I just sent her an email a couple of hours ago telling her I have another bladder infection and this time I am not taking the antibiotics. I am already feeling crappy physically. I know it is only going to get worse. My blood count is up from the last time I had my CBC drawn. It is only going to be a matter of time before the infection hits my blood stream. I am banking on this and it causes me to die.

The NP psychopharm I see foolishly put that I have borderline personality disorder as my “issue”. I don’t meet the criteria so I have no idea what she is basing this on. If she is basing it on past history, I still have no idea how that is relevant today! Just pisses me off because once those things are there, they cannot be removed. Just like the “female to male transgender person” “issue”. I don’t have an issue being FTM and I honestly still have no idea why the fuck the computer system would put that on. It just makes me so damn mad.

When I came home, my ankle exploded. It kind of went off a little bit while in the ED but soon as my foot was resting, it exploded and I have been in pain since. I have tried different meds and now it is just a waiting game as to when exhaustion will hit and I will collapse. I took the “substitute” anxiety pill so I will be knocked out the next few days, just on one fucking pill. I take this med sparingly because I don’t like it at all. I meant to tell her today about it but I forgot. The NP came by the ED to talk to me. She thinks I am seeing her next week but it is the week after. I can’t see her next week and I sure as hell am not seeing the therapist. I am mad as hell at her for wasting my time in the ED.

I need to shower sometime later today. I sweat so much yesterday it wasn’t funny. I was drenched. It was fairly warm and I was over dressed. My hair feels so yucky and the NP that told me I had a bladder infection wants me to take a shower after every bowel movement. In a perfect world, that might be doable but for someone with chronic pain, it is very exhausting. I haven’t showered since the weekend, so almost a week now. I just can’t motivate myself enough to do it. The therapist changed my diagnosis to recurrent major depression with psychotic features. I was thinking it was treatment resistant depression. The psych NP has persistent depressive disorder, which I didn’t even know existed. Either case, I am depressed. I am not bipolar anymore or maybe I never was.

Over the weekend, I sent my psych a pic of me smirking because I felt “devilish”. I told her I had met my aunt and said how she was doing as she is not going to be around much longer. She stopped eating two weeks ago so her time here is coming to an end. I am sad about this. I also gave a description about how my care has been going in her (my psych’s) absence. My psych responded that I wrote elegant and eloquent. And this is why I miss her so much. She values my writing where the other two women in my team do not. They don’t even see my writing as a tool to help me get better. And you know why they don’t know of this? Because they don’t ask! Maybe I did tell them I am a blogger but they don’t want me to do solitary things. Writing is solitary; you can’t get it done otherwise. But it is meant to be shared. And that is what brings me joy, or used to anyways. I am fighting the urge not to write as I am typing this because I think my words have no meaning anymore. A few of my readers have “fact checked” that for me and it is false. I have to try and keep this voice going as much as it is paining me right now because if I don’t, I fear I will lose myself in a way that I am not sure I can ever come back from. I have comeback from so many things. I am not sure I can come back if I get away from my writing. It is so very important to me even if I story tell about my day and how it went down. I think it is boring but maybe someone else finds it interesting. I don’t know. I want to thank YOU my readers for not allowing me to stop my writing. I now right now it is infrequent but I am working on changing that Because of YOU. You mean a lot to me because without you, there would be no blog. So thank you. I hope you are sleeping as it is almost 0300 EST. Take care until we meet again.

unable to sleep due to anxiety

by Midnight Demon, posted in blogging, Chronic pain, chronic physical pain, CRPS, depression, mood disorders, suicide

Unable to sleep due to anxiety

I have been feeling anxious the past few hours. I took 0.5 mg of Ativan, which probably wasn’t the brightest idea as I usually take 1 mg. I started writing in my journal about why I was anxious, mostly because of my upcoming appointment with the therapist. I just don’t know if this is the start of twice a week sessions or just a one time thing of meeting twice a week. I am hoping to get out of Wed session but won’t know of that till Monday. Ugh. I don’t know why I am nervous other than the fact I don’t want to be cornered into sessions. I still am highly suicidal so on the one hand, it will be good to have therapy twice a week but on the other, I want to die so I don’t want to meet twice a week, hence the anxiety.

I have four appointments this week that are stressing me out. Three are mental health related and the other is for uro. I am nervous about that because I don’t know if I can talk openly about how this self cathing thing is making me feel. It is making me feel more disabled because I am falling apart physically and I don’t like it. I don’t like that I got to keep track of when was the last time I went pee all the time and the thought of putting on a timer or alarm to cath or try to pee just doesn’t appeal to me. So I am just drinking less than I normally would just so I don’t have to pee more than I should. I hate being in this place. This whole thing also has made the constipation worse. I really think because I am not using the muscles to empty my bladder which are the same muscles to have a bowel movement, my bowels have decided not to move so much, even with taking laxatives and stuff. I just can’t deal. No one understands and I don’t even know who to talk to about it. Just makes me feel more suicidal.

This salivary gland thing is not getting better like I thought it was. There is this pressure on my throat from the swelling. It’s not painful, just uncomfortable. I look like a pelican as I have a pouch of swelling under my jaw. It is making the muscles tense and it is so hard to relax. I guess I should take some more Ativan just to relax the muscles so I could possibly sleep tonight. I just emptied my bladder, which wasn’t much in there like I thought there would be. Hopefully I can sleep through the night because I really don’t want to be up all night like last night.

DDDAAAAAAAA YANKEES LOSE!!!!! I am so happy the Snakes choked again. The Houston Astros are going to the World Series with the Washington Nationals. I am rooting for the Nats to win the Series. This is the first time ever they have made it to the Series. I partly stayed up to see who would win as the top of the 9th, the snakes tied the ballgame. I was so happy the Astros won the bottom of the 9th with a homerun.

In addition to the four appointments I have this week, I also need to make four phone calls. One is to the uro’s office to make sure I have the right office I am going to. I got to ask the uro about why she wants me to see an occupational therapist. She told me she would refer me but I am not sure why I have to see one. Maybe when I tell her I have the hang of it, I won’t have to. I am sure it is up to me but other than them giving me tips on how to carry the stuff, I don’t think they can be of help unless they can suddenly let me grow a third hand. The other one I need to make is for my food stamps. I need to find out if paying for private insurance can count as an expense so I can increase the money I get per month. I am disabled so I might be able to have this new medical expense with the catheters on too as it’s like $50/mo for it.

My suicidal mood is up to planning a date again sometime soon. I can’t help but think about it because it just is what I want to fucking do. I don’t want to live to see my next birthday. My rebirthday is coming up next week. It will be two years living as G legally. I really love it and wish the rest of my transition could go through but unfortunately it can’t right now because of this fucking construction business. I found out a few weeks ago, it isn’t happening till April. Well, that is all well and good as I will be fucking gone by then. I don’t want to live to see my 44th birthday. I just don’t. I can’t stand living this way anymore, between being in pain every fucking day, being depressed, and now medically falling apart…it is just too much.

outside looking in

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders, suicide

Outside looking in

Last week, I wasn’t feeling well. Each day I was feeling more and more sluggish and sleepy than the day before. Monday I used the bathroom and noticed some swelling under my chin that was not there before. It felt really hard. I didn’t want to go back to see a doctor nor did I want to spend time in the ED again. I had finished the antibiotics for the urine infection I had so I am thinking there is no way I could have another one. I was wrong. I went to urgent care and sure enough, my salivary gland under my chin was infected. The PA (physician assistant) wasn’t sure if it was bacterial or viral so put me on antibiotics with a referral to an ENT. I was supposed to meet up with friends but I felt like shit and had to cancel. I went home after picking up my antibiotics and went to sleep.

Next day I was to see my TG doc. My mood really sucked that day. I just wanted to be in bed. I still felt like crap but I had to get my T shot and discuss the transition with my doc. It went okay. I had my shot and then I figure I would just go home and sleep. I couldn’t. Pain hit and I was again suicidal. I texted the therapist when I got home saying that I was struggling. We talked for a bit and she made sure I wasn’t going to act on my thoughts. I said I wouldn’t today. Wed morning she texted me asking how I was. I told her pretty much the same as last night. Wed was a really bad day. I was in such a rotten mood. Pain was hitting me because of the storm that was coming. I wanted to ended it that day but it was supposed to be raining. It wasn’t so I was pissed as I didn’t get up till after 12 to know this (room is dark as I have window with a darkening curtain). I didn’t do much that day. I just stayed in bed. That night, as is now becoming my usual, I woke up between 2 and 3 am to empty my bladder. My ankle was hurting so fricken bad. I sent off a text to the therapist that if the weather was formidable, I was going to end it either today or tomorrow. I was done. I had scheduled texted it so I could delete it if I wanted to before it sent. I woke up around 815 or so yesterday and was going through stuff. I was so fucking depressed but the wind was really howling and it sounded nasty out. I was on the fence on whether I would go through with it or not. The text was sent and I used the bathroom. I came upstairs and there was a missed call from some Boston number. They left a message and it was the therapist. We chatted and she wanted to send an ambulance for me. I had her talk to my niece and she disposed of the ginger I was going to use. I was then to see the therapist later.

I was really nervous as I didn’t want to go back to the hospital. I got some coffee and went on my way into Boston. We talked and things went well. She was open, really open, to what I was telling her and how I wanted to talk about being suicidal. She wanted me to come in Monday. I really didn’t want to but I was afraid to say no as she might say I would need to be in the hospital and I didn’t want that. We devised a way to convey to her when I am close to being suicidal again but not going to act on it within 24 hours. I don’t know if I will go through with this. I said I would but I am not sure I will in that moment. I wanted to go through with my plan today but I am just so damn exhausted. I was supposed to call ENT and all I did was call to make an appointment with the psychopharm, the new one I have that works with my pcp. The appointments were supposed to be 30 mins long but for some reason, I got booked an hour. I guess that is ok. I have the appointment on Wed. I am going to try and get out of therapy that day when I see the therapist on Monday.

I wasn’t sure I would be able to write about this today. I am still in a really bad place and the anhedonia is really bad. I have no joy doing anything anymore. Writing has become so hard for me. I haven’t written in my night journal in so long. I think I last wrote in it the week I got discharged from the hospital. I am overwhelmed with everything. This new stuff with my bladder hasn’t been easy as it is interfering with my sleep. I wake up in the middle of the night and it just throws me off. Sometimes I can go back to sleep but it takes a while to get there. I am still losing weight because I am not eating. Yesterday all I had was a pumpkin scone. I was able to make a chicken sandwich today. It has been the only thing I have eaten. I just have no appetite the past few weeks. This whole new change with having to cath has really made me feel more depressed than I have ever felt. I also don’t have much support other than with my support group. I finally was able to have peace with my middle sister as she was freaking out about the disposal of the caths. I can’t deal with anything else medically going wrong this year and the stupid salivary gland thing was my last straw. I don’t want to see another new specialist this year. I know I need to because the swelling is still there despite being on antibiotics. I do feel better physically but not 100%. It could just be that I have another urine infection. I haven’t figured out how to get a urine specimen while cathing as I need a third hand. I bought some sterile bowls. I hope then I can just collect the urine there and then pour it into a cup.

I shaved and showered today, though not my face. I have been growing whiskers on my face so I let it go and then when I can’t stand it anymore, I shave it off. I haven’t been great at showering this week. I seem to go once a week, if that. I just don’t have the energy to do it. It exhausts me trying to wash up and dry off, especially with whatever is going on. The TG doc did a blood count so my white counts are within norms. I still feel yucky despite this. I need to change my sheets this weekend. If I don’t wake up at 3 am again, I might do it tomorrow. It needs to get done.