Category: cauda equina syndrome

heartbreaking day

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

Heartbreaking day

I left my house a half hour earlier than I wanted to because I just couldn’t sit around waiting for the bus after I shaved and brushed my teeth. I won’t be shaving the sides and back of my head anymore as I fucked up the back and sides top hair. The razor got too close. So now I will let it grow out. I might let my facial hair grow to, though my mustache is taking forever right now. I wanted to get my eyeglasses today.

I got to Boston around 1 and by 130 I was done. I only bought sunglasses as that was a priority. I was then told my insurance only covered one pair of glasses per year. Fuck. That would mean my glasses would be out of pocket and run at least $300 minimum. I might have to use the online sites to get them. I can usually get them for around $80 or so. I think I am going to try another place than the one I used before, only because the glasses need to be adjusted, though I don’t know what my pupil distance is. I don’t know if I still have the measurements from the last time I ordered. Will have to look.

I then went to the hospital and had something to eat at the café. I already had my Starbucks and didn’t need more caffeine. After eating, I pulled out my journal to write as I had an hour to kill before my pcp appointment. About twenty minutes later I get a phone call with the hospital number. I answer and it’s the psych department wanting to schedule an appointment with the new psych. I swear my heart took a dive and stayed there the rest of the afternoon. I almost lost it after setting up the appointment. I had to see my pcp in like twenty minutes and I couldn’t have an ugly cry breakdown. I stuffed the feelings and then got anxiety really bad. I think my heart rate dropped because after walking to the office and going up some stairs by heartrate was only 65. It should have been higher. My pcp and I talked about pain meds and he wanted to change it to something else, but he didn’t know how to do it. He is going to send me to a pain clinic west of Boston where I see my neurologist. He asked if this was okay and at the time I agreed. I got my meds refilled and then set up another appointment to see him in a few months.

As I was walking to the train station, the anxiety got worse. I didn’t have my meds on me as I didn’t wear the jeans shorts. It was too hot out. I listened to music, I didn’t care what kind at that point; nothing was going to calm me down. I got to the Square to wait for the bus home when it grew dark. T-storms were going to happen and I was going to get caught in it. Sure enough by the time the bus got to the main road where I get off at my stop, the skies opened up. The downpour was sort of refreshing but freaking cold. It came down so hard and fast streets were flooded. I must have walk into at least half a foot of water as my street is at the end of a hill. It was fun walking in the rain but at the same time, not so great for my ankle as it was kind of unsteady with water in my shoe with the AFO and the other’s laces untied. I was completely soaked by the time I got home. I was glad my niece was home as I asked her for a towel to dry off some before heading upstairs. We have ceramic tile floors and I didn’t want to go flying. I am glad my sister was home to get me a change of clothes. I dried off and then put my wet clothes in the dryer. I then got to my room to turn the AC on because even though I dried off, I was sweating a lot. The temp dropped 20 degrees but the humidity went up to 83%. After I cooled a little, I went back downstairs to put my sneakers in the dryer and get my portable charger out of the bag so the wetness didn’t ruin it. I had to charge it anyway.

With all the ruckus of the storm, my anxiety went away but it came back like an hour later. My heart rate was in the 70s so that was good. I thought it might be because I was hungry so had a protein bar. My ankle acted up so I didn’t want to go downstairs. I was kind of hungry but didn’t know what to eat. I didn’t want to cook anything. I still had the breakfast burritos but didn’t feel like having one. Those were for my really bad days. I had some pita chips and called it a meal. By the time I came back to my room, the pain had gone up considerably. I became suicidal instantly and finally made up my mind about it. I had always given myself dates that were a long time away and I had enough. So I may or may not go through with it soon. Guess it will all depend on how I feel that day and where I do want to end it. I am trying to stay so I can see my psych again but I just can’t anymore. The pain is too great and from what I read about the medication my pcp wants to try me on, I just can’t deal with both physical and mental pain at the same time. My heart is broken since I said a temporary goodbye with my psych and I hate having to continue my care at the place she was forced out of. I met her when I was a teen so she is a child psychiatrist. The new psych specializes in geriatric psychiatry. I have gone from one end of the spectrum to the other. I emailed my psych this but didn’t get a response. Also emailed her about what my pcp wants to do with my pain management, which isn’t going to be anytime soon. After 28 years of dealing with my mental illness, I have to call it quits. Monday I had to go to the ER to rule out cauda equina again because of my bladder issues and severe back pain. My degenerative disc disease has gone from mild to moderate and nothing can be done about it. So in addition to being in pain in one shape or other, what the fuck do I have to live for and why?

Trans issues 27.7.19

by Midnight Demon, posted in Bipolar Disorder, blogging, cauda equina syndrome, CES, Chronic pain, chronic physical pain, CRPS, depression, disability, grief, mental illness, mood disorders, painsomnia, physical pain, transgender

I can’t wait for top surgery. Things on chest are giving me such a hard time. I feel so ugly and humiliated. This isn’t me when I see them.

Kind of worried with the CRPS on left side. That is the side my left ankle is affected. The way they described how they cut the nerve to the nipple makes me nervous. I could lose feeling but that isn’t a major concern for me. I just want the fucking things off!! The right one might be more of a problem as it is bigger. Swear I have an orange on left and a small watermelon on right. And fuckers are heavy. But it might be that I just hate them so damn much. Worst part is they have become hairy which really bothers me. Becoming a man is so hard. Makes you feel really fucked because you aren’t congruent with how you feel.

The major thing is getting these things off. I would tomorrow if I could but I am being “selfish” waiting for the damn construction of the house to start and finish. I thought it would at least be started but it hasn’t. I haven’t asked my sister for fear of another argument. Been doing small stuff in my room as it is all I can handle.

Yesterday just putting groceries away flared my back up. It really scared me as I couldn’t touch my back without it hurting. I haven’t had that bad of pain since getting cauda equina syndrome x2. I have no red flag symptoms but I didn’t last time. I lost function of my bladder today. Things with it have been messed up since the middle of May. I moved to sit up and reached for my laptop which wasn’t too far from my grasp when urine squirted out. Luckily it wasn’t too much, but freaked me out. That was how I got CES (cauda equina syndrome) the second time. I had severe back pain and then started leaking more than I usually do. The disc was a different level than the first. And according to the surgeon it was huge. He had no idea how I was still walking. Been having intrusive memories most of the night and right now as I am describing it. I’ve never really talked about how I felt about it. I knew what I had and just focused on getting better, making sure I didn’t do what I did the first time, which was basically not having a clue what to do or who to see. I didn’t go to Spaulding, which is a huge rehab hospital because I’ve dealt with their lab and just thought all the people there didn’t know what they were doing. I was wrong and I am glad I was as i got a terrific PT now for my CRPS (complex regional pain syndrome) stuff.

I hope doing all the things I’ve been doing doesn’t cause me to blow a disc that is already herniated. I have herniated discs from levels L2-S1, worse at L5-S1 and again at L2-3 where I had CES x2. My first diagnosis was at level L4-L5. I fear if I have surgery again, I might need a fusion and I’ve heard bad stories about them. No one I know has found relief from them. And the stuff I read was fusions were only to be done on the neck, not the lower vertebrae. That is why I never want to have it done. I’d rather be in pain, but if other stuff is going on like loss of bowel/bladder, weakness in lower extremity, numbness from anywhere waist down (including saddle area and sex organs), then I will consider it. But only if I have a capable surgeon one who has done them a lot of times and have had success with them. I don’t want a neurosurgeon who only does the brain or pituitary gland. The whole thing scares me.

When I was able to see my therapist again (the 16yr one), she kept on telling me I went through a trauma. I stay away from that fucking word so much. I denied it tooth and nail until I started having PTSD symptoms. To this day I cannot go near the 3rd floor of the hospital where I worked. That is where the operating rooms were. I always wanted to see them but not as a patient!

I sent my psych an email about the top surgery and how I felt about it. She will sign me off on it but I really want to have a discussion with her before she does, just to make sure I am ready and she knows I am ready. It is a huge deal and I’ve gone back and forth with it in my mind. From i am attached and what will it mean to not have them there to seeing a man’s chest and saying I want that. I want to be flat and not have these things. I tell you, when they started developing, it threw me for a fucking loop. I thought getting my menses was bad. Nope. Having things grow was not what I wanted. Then to have a mother molest you because of “concern” more than once because one was bigger than the other and sending me to see a cosmetic surgeon when I was 13, fucked with me so fucking bad. I was so embarrassed this male doctor was talking to my mother about it but it would be when I was older. I nearly wanted to fucking die on the spot. I didn’t want them to be the same, I wanted them fucking gone!! I had already started hating my mother since I was 10. This just added to it more. Makes me feel so ashamed I have them and aside from cutting them off, there is nothing else I can do. Makes me feel really depressed, like I am in this pit I can never get out of.

But none of this matters if my CRPS pain isn’t controlled better. I have a date planned to end it. I am trying so hard not to think about it as I want to see my psych again. At the same time, while the cat’s away, the mice will play keeps running through my mind.

garbage in my head

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

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

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

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.