paying the price

Paying the price

My med alarm went off and I didn’t want to get up. I needed to use the bathroom but I was having cramps really bad and knew it would hurt to void. I fell back to sleep and an hour later I couldn’t delay going anymore. I hurt big time but I know I didn’t empty because of the pain. I brushed my teeth and went back upstairs. I thought of going back to sleep but I couldn’t so I went back downstairs to have coffee and a burrito.

I had to do some stuff around my room. I cleared a box of books, sorting them into to read/read/reference piles and put them in the bin that is out in my hallway. This meant multiple trips back and forth. Once the stuff had been packed away, I put the boxes that were on top of the book box in the bin. I then made a note of what was in it so that I remembered should I be wanting a particular book. I also saved some journals that were in there. I really want to have a box just of my old journals so that I can find them easily should I need them for something. Right now they are haphazardly around my room but still in piles of some sort. They certainly aren’t chronologically arranged. I guess I will do that eventually but I mostly just want them together so I know where they are.

Pats are playing right now and leading 23-0 over the Bills, in the 1st quarter. Sox play their last game of the season today at 3pm. Eduardo Rodriguez has a chance of winning his 20th game of the season, if the Sox don’t blow it for him. He has really come along as a great pitcher that I knew he would be. Hard to believe there was a time we didn’t think he could pitch beyond the 3rd inning but he as gone as far as 7 and a 1/3 innings and 10+ strikeouts, which is pretty awesome. I am brokenhearted the season is over. The post-season is okay but I really don’t pay attention to it because no one I want to see win is playing. There have been four teams to win 100 games this season, which is a record.

I am still having bladder cramps. I need to send a message to my uro to see what can be done about it. I might have to wait another few days before they calm down. I am trying my best to wait it out but fuck, I hurt. Think I need to get my heating pad. That usually helps temporarily. Foot is already flaring up so I am doing good in the pain department.

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.