Tag: CES

weird happenings

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

Weird happenings

I have been feeling off all week. Wed I contacted my surgeon and he said to go to the ED to get evaluated. I got evaluated alright, complete with MRIs. I got there and I felt like I was going to collapse. They had put me in the least but fastest track in the ED. Until they took my blood pressure and labs. Then it was thought I needed to be monitored a little more closely. I went to the Acute part of the ED and was hooked up to monitors and stuff. I was given antibiotics because my white count was very high, indicating infection of some sort. Nothing has revealed itself to be the source of infection though so I am not sure what is going on. My labs yesterday were better but my white count was still high. I mostly stayed awake in the ED and when I came home yesterday, I couldn’t crash right away. It took some time for my body to settle down. I was so overtired.

I still haven’t gotten my blood culture results yet. All the rest of have come back negative. My urine is clean and so is my chest. They did a chest x-ray yesterday to rule out pneumonia or another lung ailment. I feel crappy but I talked with the PT yesterday and she said it could be that I am deconditioned and that is why I feel so crappy. I think I do have something going on with the fluid collection that is making me tired. I don’t know what will happen now. I got to be in touch with my neurosurgeon and see what the plan is now. I am to start outpatient PT again. I plan on calling next week to see if my PT is available. She is really good and I rather see someone that knows me than someone new.

The weird part of this infection that I got is that I am not running a fever. I just feel worn out and sluggish. I got back pain with it but I think that has to do with the surgery than anything. I was completely feeling rotten yesterday from lack of sleep and I think I am on the mend now. I just hope the antibiotics work and I don’t need to be on them again.

I did feel uncomfortable in the ED because I kept on getting misgendered. No one asked what my pronouns were so they just assumed I was female, even though my chart says the opposite. Usually they are really good but not everyone was up to reading my chart I guess. The ED RN was really good. She found me a turkey sandwich. It was nice of her to do that. She said I was her nicest patient for the shift. I guess her first one had tried to hit her. I feel bad for these RNs that have to deal with violent patients. Doesn’t make the night a good one. I tried not calling her for things if I could avoid it. She did check in on me every so often so that helped. I couldn’t sleep at all while I was there. I was up for over 24 hours. I just lost track of time.

I just wanted to shower when I came home from the hospital. I did and regret it as I couldn’t go on. I felt so weak and tired. I don’t know how I managed to get dressed. I felt like I was in there for more than an hour just trying to get dressed. It was awful. I didn’t put on my PJs. It was too hot. I just went to my room in my underwear. Luckily, my nephew didn’t see me.

Memorial Day 2020

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

Memorial Day 2020

I had a good day, though I am now feeling sick again. My sister made BBQ and it was so good. We finished with brownies and ice cream. My head feels like it weighs a ton and hurts so bad like it did last night. I don’t want the surgery but I know that the headaches aren’t going to stop unless I have it. On top of this, I have a UTI that is hurting so bad. I am throwing blood clots and those hurt so bad. I am taking AZO pills (for urinary pain and urgency) but I still hurt, though not as much. I forgot to take the pill this morning so I am hurting from missing a dose. I plan on taking them until I am on antibiotics, which won’t be until later this week. I let the NP know I was having symptoms and will be dropping off a specimen tomorrow. I plan on going after therapy. I just hope the bus comes within the half hour. I need to check the schedule as it has been months since I last took the bus.

I cleared a path for my brother in law to get to the AC as the rest of the week is supposed to be hot. I hate having to lose fresh air but I rather be cold than sweating. Clearing the path cost me so many spoons. I am so exhausted. All I did was move stuff from one part of my room to another part. I was able to free my waste basket. Now I just need to empty it so I can use it properly. It is currently holding stuff that shouldn’t be.

I want to shower but I don’t think it will happen. I am way too tired. I just don’t have the energy to. I will definitely do it tomorrow morning when I have some energy. Morning seem to be the best time to do some things. I don’t know why as I am not a morning person but that is when my energy and pain levels are best.

I have been feeling palpitations while I was clearing a path. I hate that I am still not 100%. And there is no way for me to be 100% as I will be having another surgery that is bound to sap my energy some more. It really is going to set me back. I don’t know what I am going to do about it. I think I am going to get iron pills so I can build up my iron in my blood. The testosterone builds up too but this might help more so. I will get the slow release kind so that it is less constipating. I should get my blood drawn but it won’t be accurate because I am still recovering from surgery.

disturbed sleep and back pain

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

Disturbed sleep and back pain

I woke up around 6 am with back pain. I had to pee and getting up was so difficult when it hurts to move. After I used the bathroom, I sent a message to my pcp about seeing if he would increase the dose of my pain meds. I had enough and if he doesn’t then he doesn’t. I asked and it will be the last time I do ask for an increase. I told him I have arachnoiditis, a painful nerve condition that could be causing all this back pain. I haven’t gotten a response yet.

I have been feeling pretty sick most of the day. My head hurts and I am really tired because of the disrupted sleep caused by pain. I had woken up at midnight to pee but was able to get back to sleep right away. It is cold in my room and I love it. I think, though, it is why my back keeps flaring up. The chill in the air might be causing spasms I am not aware of. But I will take the coldness over the warm. I am under blankets so I am nice and toasty. I love being under blankets when it is cold out. Reminds me of my childhood as I didn’t have a radiator in my room. I just had a lot of blankets on top of me to stay warm.

My hair is getting so long. I think barbershops are going to open next week so I might be able to get a haircut. I hope so. I can’t stand my hair. I got to text my barber and see when he will be opening his shop. I can’t wait to get a bald fade again.

My left foot (CRPS) is a block of ice right now so I just put on thermal socks. I hate it when my foot gets that cold. It is so fricken painful, like having your foot in ice water. Then when it warms up, it burns so I get no relief. I hate nerve pain more than physical pain. Least with physical pain, I can try and control it but nerve pain doesn’t have that same sense of control because nerve pain medications aren’t that precise.

Tomorrow I have a meeting with my neurosurgeon. I will find out what he plans on doing for me to relieve the headaches and head pressure. My vision has returned to normal so I am grateful for that. It was getting me down that I couldn’t read because my vision was all blurry. Hope it stays normal.

Saturday Blog 16052020

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

Saturday Blog 16052020

I took a shower today. I felt like I needed one after sweating most of the night because my room was hot. We had thunderstorms last night so I had to shut my window, which I did right before the torrential downpour. It was good timing on my part. The rains started an hour after they were supposed to start so I had waited long enough. I really just wanted to go to sleep. I woke up at 4 am to use the bathroom and then was in pain until pain meds calmed it down enough so I could go back to sleep. I slept till around noon. It was nice.

I didn’t do anything else today. I want to start a new book but I don’t know which one to read. I want to start the Marsha Linehan memoir but I don’t know where it scurried off to. I put it in a “place I remembered” and of course forgot where that is. I will go looking for it after I write this blog. It probably is just under some stuff that have fallen.

I am kind of in a depressed mood. I keep thinking of how limited I am in my recovery. I know I said I showered and that was laborious. I was so tired afterwards I just wanted to sleep. My back was cramping big time and it still is cramping. I can’t seem to calm it down and it’s just like things are always going to be this way. It is getting me down. I am having trouble keeping in mind that I am still recovering from surgery. It has been two months almost. I think I really need to be back in PT but with the covid restrictions I don’t think I can right now. I also don’t know if it is safe to do so with the fluid build up in my back, which could be why I am hurting so much. I just wish I had enough pain medication to cover the amount of pain I am in. I think I am going to ask my pcp for an increase in dose. Worse he could say is no, which will probably be the answer anyways.

If I can’t find the Linehan book, I just bought a history book on Reagan and Gorbachev on the Cold War. I am interested in how that came about. I hope it is a good book. It isn’t too long so I am looking forward to reading it if I can’t find the memoir. I just need to find a bookmark. Think I will try and find the CRPS ones that I bought a few months ago. Those are nice and sturdy. I got them from a UK organization. They have some good information about the condition on Twitter and FB. I don’t remember the name of it off the top of my head but if I do, I will post a pic of the bookmark on my next post.