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.

more thoughts on my blog

More thoughts on my blog

A reader emailed me and I thought about what she said. This is my blog and last time I checked, calling someone stupid wasn’t breaking any laws. So on this note, I have decided to keep my blog open, not password protected. If that monitor person wants to continue reading my blog, there is nothing I can do to stop them. I do know that my stats seem to go up when I post so even if I don’t know who you are, I know you are reading.

I’ve had a horrible day so far. My middle sister has been cleaning my mother’s room. When I got out of my room to take a shower, she said that I had to go through my stuff so she can move her things there. I also had to move the stuff in the living room so she can also move her stuff there. I took my shower and found that the shampoo bottle that had a pump on it, she threw away because the bottle was empty. I was so fucking pissed. I called her an asshole and she got pissed. I don’t care. I am tired of her thinking she is the only person living here and has to make the house the way she wants it to be. I got really suicidal after our exchange. She just doesn’t realize how upset she gets me, like I don’t matter at all. Yesterday she left crap on the stairs, which made it hard for me to go down. I really don’t want to fucking fall and she doesn’t get that my balance is off. She also placed a bin right at the bottom of the stairway, which I kicked out of the way. I got so mad. I texted her, in a neutral way, and got no response. I have no idea if she has blocked me or what but every text I send her, she doesn’t respond to anymore. I sick of her shit. I emailed my psych to let her know what was going on. After the disaster of a family meeting via phone, I really don’t know how to get through to the dumbass. Yet she has the audacity of calling me selfish. Such a projection.

After my shower, I made something to eat. My foot started bothering me but I still did what I had to do. By the time I made it back to my room, it flared up big time. My foot and ankle are competing as to who is going to hurt more. I so want to nap as I have been up since 0630 but I really don’t want to. Will be hard to anyway as there is so much light in my room due to my window being open. I have a hard time sleeping when there is light in my room.

Never had a nap. Just had dinner with my mother. I made hot dogs and beans. My foot wants to fucking kill me. I hate it when simple things cause me pain. You think I was walking miles. Speaking of walking, I really need to get my AFO (ankle foot orthotic) adjusted as my foot keeps slipping. I think I have a bit of atrophy plus with the weight loss, I don’t think it is fitting right. I hate that I gained about 10 pounds while in the hospital, mostly because I was eating three meals a day, but they were huge dishes. I tried to eat a salad with chicken or just a turkey sandwich but it wasn’t always possible because I would forget to fill out the menu for the next day. Sometimes I would skip breakfast as they served eggs at least every other day and I don’t like them. I rather make it. I am just picky like that. The rest of the days they had French toast, which wasn’t bad but it was filling. Since being home, I have been having much smaller meals at least twice a day. Yesterday I just had steak and then a protein bar because I was in too much pain to go downstairs to make something. I forgot how painful stairs were.

I got to fill my med boxes for the week. The doc in the hosp increased the Lamictal and I think it has finally improved my mood somewhat. I kind of feel like what I was before I was in the pit of doom. I am just more tired and on a “day” schedule. I went to bed early, or tried to before pain kept me up till at least 1 am. Then I woke up around 630, only because I had to pee. I am glad I woke up because I leaked. Both my pjs and underwear were wet as I didn’t wear a diaper. I bought a much comfortable brief style while in the hospital because they didn’t have a good kind. I should have brought my own but didn’t think I needed them. Now I know better.

Neil Gaiman’s Good Omens came out the end of May. I got it free because I am an Amazon Prime member. I downloaded the episodes to my Kindle, but I still haven’t watched it yet. I keep meaning to but pain has been a chief distracter. Usually watching a movie or something helps but I don’t have the attention span lately. I can watch short videos and then I get bored if it is more than 10 minutes. I think the only thing I can watch for longer is the Rachel Maddow show. I haven’t watched it in a long while because it was just annoying me. She seems to say the same thing in three different ways over and over. Then she goes on only to come back to the original question or point. I had to take a break and haven’t watched since. Maybe I will watch one episode of Good Omens later tonight, if my pain doesn’t get worse after I do my med boxes.