Category: chronic physical pain

ocean

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

Ocean

This is Lady Antebellum’s new song and I absolutely love it. Their new album is going to be killer. Even their new song “what I’m leaving for” is so good. I don’t know when the album is going to be released. I am trying to hold off buying things so I can get Luke Combs’ new album to as that comes out later this week.

I woke up too late to give my sister her birthday gift. I sent her a text at midnight wishing her a happy birthday. I got her and my sister (who’s birthday is the 15th) the book by Dr. Jen Gunter, the Vagina Bible. I really enjoyed reading this book because it was so informative. I think it was the last book I finished. I started reading the 6th Harry Potter book and I am half way through. If I spend at least a half a day or two half days I could finish it. I am going to take it with me when I see the neurologist on Tues. It is a long train ride so I hope I can read some of it.

The therapist texted me today after I sent her a meme. She said we needed a time this week and I told her that might not be possible as Tues and Wed are out for me. Traveling to my neuro takes a lot out of me. I really wasn’t planning on seeing her this week anyways. I have an appointment Thursday with my pcp and having three appointments in a week just tires me out. The neuro appointment alone is going to wear me out because it’s more than 45 mins away from me. The pcp appointment is late afternoon. I am thinking about staying if I can ditch the urge to go home right after the appointment. There is a transmen meeting that night that I would like to go to. I just emailed the coordinators to see if there is one this week. I last contacted them back in May. I haven’t gone to the meetings because I have been too scared to go by myself. Meeting new people is so hard for me. The therapist wants me to go to groups and stuff but I am not that much of an outgoing person like I was. Pain has prevented a lot of things for me as well as meeting up socially with people. I wanted to go to the chess club today but totally forgot about it. I wish I put the alarm in my phone. I would have gone rather than gone back to sleep.

I shaved my facial hair off the other day and I am still waiting for the mustache to grow back. I feel naked without it. I had to shave it off because one side was doing its own thing and the other was too. I haven’t shaved since. I pretty much shave the sideburns because I don’t like them getting all thick and shit. I don’t know how to trim them yet so it is just easier to shave them off. I’ll learn one of these days when the beard and everything is more uniform.

a blah Saturday

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

A blah Saturday

Past few days I have been feeling off. Last night I again got into feeling sick and weak. I haven’t been eating much past few days. Today I just had Ensure so I could take the antibiotics. I decided to take them as I feel really crummy and I don’t want to end up in the hospital. I just hope it isn’t too late because I feel so damn weak.

My mother is having a party for my youngest sister as her birthday is tomorrow. I don’t feel up to being around people. I am in pain too. Ankle has been a fuck most of the day. I talked with a transman today via text. I got the service from my pcp’s office. It was nice talking to them about trans stuff. Other than the therapist, I really don’t have anyone else to talk to. My family isn’t supportive. I was feeling down last night because of the dysphoria. I really wanted the breasts gone and to have surgery this year but that isn’t going to happen. I need to have full use of my arms until this construction is done. If I have the surgery, I won’t be able to move my arms fully and that will cause more problems between my sisters and me. I don’t think I am ready mentally for surgery as right now I am so suicidal. I really wanted to end things today but I just felt so weak I didn’t want to leave the house only to pass out.

Took my meds early tonight. I increased the Cymbalta to 60 mg twice a day the other day. I haven’t noticed a change in anything yet. I don’t have an appointment with the therapist this week. I got to text her Monday to see if I can see her or wait till next week. I really don’t want to see her this week but will if she wants to. I sent her a couple of texts but mostly just about baseball and chronic pain as CRPS awareness is this month. I sent her a meme about it. I also sent the NP psychopharm the blog about being in chronic pain that is a chapter in my book. Tonight is daylight savings so will be losing a fricken hour. My sleep is already so fucked up. Ever since my bladder has stopped working right I have been waking up between 2-4 am to empty it. EVERY SINGLE NIGHT! It’s killing me waking up and then not being able to go back to sleep. I am tired all fucking day. I don’t even drink coffee in the morning anymore, not like I am up in the morning, but still. I only have Starbucks when I leave the house and am going to the Square. Tues I see my neurologist. I am going to have her look at the MRI and see if she sees anything worrying. I also need a refill on the gabapentin. She apparently is the only doctor that can prescribe it for some reason. And it will have to be in a new order because the damn hospital got rid of it all together. I am still mad about this. They have fucked my meds so much it’s not funny.

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.

staying the course

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

Staying the course

I realized this past week how grateful I am that I had a doc that listened and cared who also didn’t treat every symptom I have with meds. I am not sure where this “team” and I are going. Seems everyone wants to be captain and not a 1st officer. I know the waters are wicked stormy and all I want is to go down with the ship. Trying to stay the course but it has been hard as I just haven’t been able to have much say in my care. Been able to decline med changes so far. Therapy is a bit harder. Just doesn’t seem we are all on the same page yet. I am not sure we all will be on the same page if there isn’t some agreement on who exactly is in charge. I thought it was me but it doesn’t feel like I am and that is a problem. This therapist is trying to pull her weight in my care and it is knocking me over. I am already exhausted from trying to keep the ship above the water and seems soon as I got it going on course some storms knocks me off my bearings. She hasn’t been much help to steer the vessel while I am struggling for control. I feel like she wants to be on the bridge but just to look around.

These thoughts and pain are what is keeping me up tonight. I also have been thinking of writing and how with my psych being gone, no one is going to ask about it anymore. I think the “team” will think it is too isolating to write a blog or a book or something.

I have been thinking about my writing because I haven’t done much of it the past few months. I sort of let it slip through my hand and haven’t been able to really get back to it. A blog reader reached out to me. She told me that it helps her to get out of bed to check the computer to see if I posted. That day, two other people said they were glad I was still around. All three of these people, though they didn’t know one another, have never met nor were on all the same platforms were telling me to try and hang on when right now I don’t feel much like doing so. They understand why I don’t want to and in their own minds have sort of understood that I am free to make that choice should I take it.

Other night, I was having a really bad day of pain. Actually, I have been in the same kind of pain since Thursday around noon with my ankle all flared up. I wanted to end things Thursday. I couldn’t walk so figured I would do it Friday. Friday I was still in pain and texted the therapist that I was going to order more ginger. She thought my niece got rid of the stash I have. I have a serious allergy to ginger as I found out a few months ago. The therapist didn’t say anything about the pain but did say that if I ordered the ginger, it would tell her that I wasn’t safe. I held off on telling her anymore. Last night I found out some bad news about a family member and was so heartbroken about it. I still am. I wanted to end things right then but I didn’t want it to be in my home. I figured one piece of the gummies wouldn’t be too much. I had Benadryl and an epipen if things got bad. I also had a fortified histamine blocker if I needed it. The gummy caused a reaction but it wasn’t severe. It was moderate as my voice is a bit shaky. I realized by my experiment that a handful would probably be enough like I thought it would be. Now I got to wait for a fucking dry day to come around as it is going to rain all fucking week to put my plan into motion. I am biding my time for now. It is all I can do. I am not sure I am going to make it through the next few weeks. I am going to try and write more to see if that helps tame these demons like they have been in the past. Writing about them hasn’t always been so damn easy though. MK, hope you can check your laptop a little more frequently as I try to tame things in my head through writing.