in a restless state of mind

In a restless state of mind

I had my appointment with the therapist Tues. We discussed the abuse. She asked if I talked to anyone about it. I said no. I kind of did when I was a teen but that lead to bad consequences and I never spoke of it again. Then she asked about my suicidality. She said that she had to keep me safe and I felt like we were going along the path of the “no harm” safety contracts that I swear was not going to work with me at all. But, again, she didn’t get more specific about safety. Just decided to work on a DBT skill, which I don’t even remember what it is. I am supposed to be working on it but fuck, I am in no mood to. I told her I would write the responses in a notebook but I’ve tried to find ANY of the million and one comp notebooks I have and have failed. No idea where they all went. I recently bought two. One I know is in my everyday backpack. Where the other one went, no fucking clue. My room ate it. I know when I am looking for something, one of them will make an appearance.

When I came home from therapy, I got into a fucking flare. My foot went fucking ballistic and stayed that way for almost 36 hours. I woke up at 430 am yesterday and just said fuck it. I was thinking on acting. And yet I was hindered by my psych saying I should call her when I was thinking on acting on my urges. Well, it was 0430 in the morning so I wasn’t going to call her then. I sent her an email and tried to go back to sleep. My mother can always be counted on to disrupt my sleep as she called around 11 or so to see if the goddamn windows were closed as it looked like rain. Thunderstorms were supposed to happen through today. Around 2 I still hadn’t heard from my psych so asked her if calling her later was okay and she responded giving me a time. She called before I could call her at that time and we talked. She asked why my pain is always the cause of my suicidality. I told her it is just too much. I had foot swelling Tuesday night that continued until this morning and it was so fucking painful. I had three different types of pain going on that were so damn high it wasn’t even on a scale. So I just decided it was time to end it. She said no or she would send an ambulance for me. Shit. We are to talk again on Sat. I really don’t want to fucking talk anymore. I just want this fucking suffering to end. My plan is still on. She said she has the pipeline dream of me being better. I told her at least one of us has hope and she said she will hold on to that for both of us.

I got a response from my wonderful PT about what to do about the back situation. She said there are specific exercises to help stabilize the spine and can be done in like 7 sessions. I am not sure if I want to go back to PT as I just ended. I told her I had other fish to fry and when it is done, I will be in touch. I read the report as it came in last night. I have a new herniation at the beginning of my spine at T12-L1. It is minor. The worst one is at L3-L4, which is in the middle of where I had surgery. That is the disc that has gotten worse and is near my L3 nerve root which could be why my bladder is being so dysfunctional. I feel like I am a ticking time bomb. This level is unstable. If the disc goes or if I see a surgical consult, I most likely will need a fusion. I am not going to have a fusion because everyone that I know that has had one has had more pain. From what I read, fusions were only to be for the neck, not the lumbar part of the spine. I am wicked bad at remembering where I read stuff, so not sure if it was a journal or what. Don’t even remember the year but that is what sticks out in my mind. I could be wrong. But it would make sense as to why so many people with fusions have had them fail on them. Not saying everyone with a fusion hasn’t been helped. I just haven’t found those people.

garbage in my head

Garbage in my head

I’ve had a lot of stuff happen since Friday. I did way too much in all of the activities I did on Friday that Saturday I could hardly move. My back had started acting up Friday night and woke me up with severe pain early Saturday morning that I really couldn’t go back to sleep. I was having a lot of PTSD where intrusive memories would come in or a video of all the events leading to my first cauda equina syndrome would play in fast forward. I had emailed my psych around 10pm and got a response. She said she was sorry and hoped that tomorrow would be better. I didn’t respond because I was hurting and drugged up too much. I know I responded when I woke up around 0730 or so. If she could decipher what I was saying, all the more power to her because I had no idea what the hell I was trying to say. I haven’t emailed her since. I have been in too much pain. My scar hurt so bad I thought it was going to burst and there was like a two inch area from each side of it going in a square down my back that hurt so damn bad. I’ve had back pain before but never like this. And my lower back was all screwed up as well. I tried putting lidocaine patches on them and it didn’t last an hour. The adhesive was burning me. I had nerve pain in my thigh all weekend. I kept putting lidocaine patches on. It helped a little but sucked when I had to take the patch off. Yesterday was a little better but pretty much the same as Saturday. I also had accidently peed myself without realizing it. So had to wear a diaper. I think the overload of the nerves just had enough. That one day of activity has made the pain so much worse. My foot hasn’t stopped hurting me since Saturday morning. I don’t know when things will calm down again.

The sucky part is that when I cleared my bed off to change the bedding, I had my eyeglass case that held my prescription sunglasses in it. I have no idea where it went as the case is no longer in my backpack or any visible place in my room. I might have placed it in another part of my bag but we’ll see. I found another case with a pair of sunglasses in it. It is not prescription but I guess it will have to do until I find this case. It might have fallen behind something or I put it somewhere “safe.” I don’t know. I just need to find it. I don’t have the money right now to buy another pair of prescription sunglasses. I might have to buy the cheap clips you put on the glasses. Not ideal, but at least it will save my eyes from the sun’s glare. I know I will find them when I am not looking for them.

Tomorrow I have an appointment with the brace clinic at one of the rehab hospitals in Boston. I am hoping they can either give me a new AFO (ankle foot orthotic) or at least adjust mine so that it doesn’t keep sliding when I walk. I have lost weight and I think my calf has atrophied a bit since I got it almost eight years ago. When I was re-evaluated about three years ago, they didn’t want to do anything because the insurance wouldn’t pay, which is total bullshit as I wasn’t on the insurance I am on now. I really think the place was not the best to go to as the PT and orthotic guy just seemed like they didn’t know what they were doing. I went to the pharmacy today and as I was walking back home, my back started seizing up on me. I hope I can get to this appointment without it killing me. I have therapy the following day. Why I decided to pick Wed instead of Thurs, I have no idea. That is total stupidity on my part.

My foot pain just went back up to a fucking 12. And I don’t even want to take a breakthrough med for it. I should but I feel so hopeless I don’t see the fucking point. I don’t even know how many days in a row I have been in a level 12 or higher pain. I am instantly suicidal and thinking of the best way to end it. I won’t act on it but fuck I so want to. Like why do I have to go through all this pain? I am filled with anxiety right now. I know my night just turned to shit. Sox haven’t been providing too much distraction these days. They had a 5-0 lead and now they lead by one in the 3rd. So typical of them. Ugly Ricky is pitching. He hasn’t been pretty all season. Actually, the only pitcher that has been showing some improvement is Eduardo Rodriguez. He has the most wins, though his ERA is higher than OverPrice. I can’t listen to the game anymore because I never know if the sound waves are going to hurt me or not. I am listening to the radio on my phone that is away from my leg. But that doesn’t mean anything. The air waves can fricken bother me. I am not in sensory overload yet, but that can happen quickly. Part of the CRPS (Complex Regional Pain Syndrome).

Since the afternoon DJ on the country radio station I listen to left, the one that does the evening has I think moved to that spot because there is another guy filling in the evening. I have no idea who he is. I haven’t listened to the station in a long time. Mostly it is because the app is finnicky. A message or if I open another app, it will shut off or it will close on its own. It is annoying so I pretty much stopped listening to it or will listen to it for short periods.

I weighed myself this morning and I am 3 pounds heavier. I am okay with this, only because I am eating again so I knew I was going to gain some weight. Saturday as I couldn’t move and pretty much slept all day, I didn’t eat or drink anything the entire day. I think I was just drinking what ever I was taking with my meds. It was the roughest day for me as I was in so much pain.

Sox are now leading by 4 in the 3rd. Maybe they can break it open. But I won’t hold my hopes up, just yet… I have attached the chronic pain scale so you can have an idea of what kind of pain I deal with on a daily basis.

I got my head in a mess

I got my head in a mess

Today has been a rough day. I hardly got any sleep last night. I went to bed around 0530 or maybe 0630, I don’t remember. I know it was late (or early) enough to take my morning meds so I didn’t have to wake up to my med alarm a few hours later. I woke up about an hour after my med alarm would have gone off, around 1030. I didn’t get up right away other than using the bathroom. I wasn’t in too much pain but it was friggen so damn hot and muggy in the house. An hour later, I decided to get some coffee. I didn’t want to try and go back to sleep. I had a hot cup of coffee because I am running low on my ice coffee. I have about a half a cup left. I had a pop tart with it but I couldn’t finish the second one (there is two in a package). I had to go to the pharmacy to get my meds. Then I figured I would make some breakfast burritos and then maybe change my sheets.

I went to the pharmacy and when I came home, I was soaked with sweat. I had to change my shirt. I had the AC on so I cooled down before deciding what I was going to do next. My mother said she was going to take the bins out of the boxes and break down the boxes. I said ok. After I cooled down, I broke down the box with the bin that was outside my room in the hallway. I had a good time using the box cutter to cutting up the box. I then threw the stuff downstairs. I realized I didn’t have enough cheese to make the burritos so I had to go to the store to get some more. I called the butcher shop and checked the price there. It was a good price. The next bus wasn’t for another half hour so I put all my bags into the bin that was in my room. That cleared up some space. I changed into a tank top and I was going to wear it to go to the butcher shop.

I went to the bus stop and as I was waiting, my nephew drove by and gave me a ride to the Square. I went to Starbucks and got an iced coffee. Then I went to the butcher shop and the little grocery store that was across the street. I didn’t plan on going there but I wanted to check the price of the cheese. It was expensive so I got some roast beef and turkey bacon. I also got some more tortillas as there were only a few left for the burritos.

I came home and there was someone in the bathroom. I so wanted to shower as I was soaked again. The T and the nerve damage is causing me to sweat so damn much. I can’t stand it. I have been trying to drink fluids throughout the day but I am not that thirsty so it is hard. I sort of have to remind myself to. I cooled off for a bit then when I was, I decided I was going to take a shower and then make something to eat. I bought burgers yesterday and made an awesome one with turkey bacon and pickles. I made the same tonight, though I didn’t cook the burger too good. It was really rare. I knew I should have let it cook for a few more minutes but I was hungry. Always happens. It was really good anyway but I couldn’t finish it all.

I just finished the burger and cleaned up the kitchen a bit. I still am buzzed from the coffee so I think I am going to attempt to change my sheets. I don’t think I can take another night sleeping with just a blanket on. I need to put a lidocaine patch on my thigh though. While I was at the deli in the grocery store, the guy there was lazy as he didn’t want to change the labels on the weight things. All three needed to be changed and when he realized this, he took his blessed time trying to find labels and change one weight thing. I must have been standing at the counter for at least 20 minutes while this was happening. When I went to the bus stop and finally sat while waiting, my thigh pain was so damn bad. It flared up again while I was showering. I am not fucking happy about this. My back has been acting up for most of the day while doing shit. Resting has helped but it is still sore. I really want to change my sheets but think I will have my mother put at least two lido patches on my back so I can get things done. Otherwise tomorrow I may not be able to move.

Sox are finally playing tonight. I HATE the All Star break. They were off four fricken days. I missed baseball so much, well Sox baseball. Tonight they are playing the Dodgers, the team we won the World Series to. I feel like tonight will be revenge and I am not looking forward to that. Game is in an hour so if I want to do the last two things of the day, I better sign off now. Till next time.

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.