Category: cauda equina syndrome

Busy Tuesday 25082020

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

Busy Tuesday 25082020

I’ve had a busy day and it’s not completely over yet. I went to get tested for Covid. That was horrendous. I hated it but I did okay. I was in and out which was good. I caught the bus back to the Square. My barber didn’t have any openings so I went home to get something to drink and cool off a bit as well as charge my phone. After about twenty minutes I left the house again to go back to the Square to get my haircut. I wanted to go to the grocery store but my back is still spasming up a storm. There was no way I could walk around the store without pain so I ditched the plans and just came home after my haircut.

I am home now and am packing my bag for the hospital. I still got to throw some sheets in the wash. I also need to shave and shower. I got to wash my hair. Right now I am so exhausted I just want to pull the covers over me and try and nap. I haven’t decided if I am going to take my electric razor with me. If I shave today or tomorrow, I will take it with me so I can prevent a beard from growing. With this heat, I am not liking facial hair.

I didn’t wear my AFO again today. I thought I would be okay but my stupid ankle is acting up right now. Fuck. Feels like someone is trying to cut it in half. I took a BT med because what else am I going to do? I took a risk by not wearing it and now I am paying the price. I don’t know why I do this. I guess I want to test to see how far I can walk before pain hits me. I know I am fine with short distances. But longer distances like today was too much.

I don’t think I will be washing my sheets today. I am being hit with a deep wave of exhaustion and I think I will have just enough energy for a shave and shower, provided my back doesn’t continue to act up. I took preventative Zanaflex so in an hour from now I should be able to shower without issues, I hope so anyways. I still need to get my bag together. I am going to be taking my catheters with me so that if I have to use them, I will cath myself rather than a nurse. I really hope that if I do have to cath it is because of the medication they are giving me caused retention to worsen. My biggest worry is the constipation that will happen. I was loaded with a lot of stuff to go last time and it took like three days for me to finally have a movement. I am hoping to have a semi decent movement before surgery so I don’t have to be so full. But I don’t know what makes me go and what doesn’t. I can’t take senna the night before so I will have to take the senna tonight and then hope tomorrow I go decently.

I am glad my therapist is so straightforward with me. I know that I have a serious severe mental illness but in the back of my mind, I didn’t want to admit it. Hearing her tell it out loud made me realize that it is true. I am struggling with this so much. And there isn’t many meds I can be on because of stomach upset. I might go on celexa again. It was the only drug that I was on for a few years before it became ineffective. I don’t know what the new psychiatrist is going to be like. I feel sad that it isn’t going to be my psych. I wonder if s/he will be aggressive in treating my illness like the NP is. I am meeting with her (NP) tomorrow to discuss my options. I don’t know if I want to start something right before my surgery. I think I will when I am home from it all. I think it will be best to start something when I am not on so many meds from surgery. I still don’t know when I will restart therapy. I am thinking of giving myself a break and going back when I feel like it, like three weeks from now or something like that. I am sure she won’t even know that I am gone that long.

I don’t know why anxiety is crushing me right now. There have been moments in the past hour where I feel I can’t breathe. I literally have to tell myself to take a deep breath and do this a few times to calm down and feel like I am breathing again. It’s driving me crazy having these episodes. I know tomorrow is going to be worse with them because it will be one day before surgery. I half thought of killing myself before surgery just so I don’t have to go through with it. It was only a half thought but still, got me thinking. I won’t do it as much as I really want to escape from this. I just want to say that I am fine and go on with my life but I know that I will still feel like shit until the fluid collection get small enough to not bother me anymore which at this rate might be more than a year from now. It is my choice whether to keep things as they are (crummy) or to try and make things better. I hope I am making the right choice. I will find out this time Thursday evening or so.

Thursday’s Thoughts

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

Thursday’s thoughts

I am not thinking of much right now. I have about a half hour before therapy. I nearly slept through my PT appointment. Thank goodness she called me. I glanced at my phone and saw it was 11 but I didn’t get up because I forgot about the appointment. We had it with time to spare. I got three new exercises to do while in bed. That will be good on days I don’t feel like going to the kitchen to do my sitting up and standing ones. She thinks she can improve my stamina while walking. I told her I am thinking of surgery to drain the fluid pocket that is causing me so much trouble. She wants me to think about it and she will be there to help me get back to “normal”, whatever that is. I just know that I don’t want to huff and puff while walking somewhere. If I can accomplish that, I will be in good shape.

Therapy went well. I will be trying a new sleep routine as I have had severe insomnia the past few nights. I hope that I can stick to it. We also talked about how frustrating it is that I am still not better after all this time. And about having possible surgery. She said not to go down the bad thought road as that might make me more susceptible to a bad outcome after surgery. I am trying not to think of this at all but I am facing it as I don’t know if the steroids will work for good this time. I am not sure what will happen after Monday. I am so tempted to just get the MRI and have the talk of surgery. I feel that if I have the MRI and see if the fluid collection gets smaller with this course of steroids. Only side effect I am having is stomach upset. I just take Mylanta when it is bad. It helps. We also talked about my psych. I was expecting her to be judgmental but she wasn’t. I am glad as I was nervous bringing it up. She needs to know that I am in contact with her because there is a chance I will be seeing her again as my psychopharm. I didn’t tell her how my appointment with the NP psychopharm went. I was sworn to confidentiality about what we talked about. It was upsetting and I am not sure she will be sticking around come the fall. I really don’t want to lose another provider but she needs to do what she needs to do.

I need to shower but I haven’t had the energy to take it. I did trim down my beard as it was getting itchy. I wanted to shave it all off but I held back as I would have to shower afterwards. I might do it after I write this blog. I plan on seeing my barber tomorrow so would like my hair to be washed. I also plan on going to Starbucks for a damn mocha. I have been having severe Starbucks withdrawal since the pandemic started and I was in no shape to be traveling to the stores anyway as I was just recovering from surgery. Hell I am still recovering from surgery and it is frustrating as all hell. I just hope PT is able to help me lead a better life than what I am currently experiencing. I can’t take another mishap. Which is why I am not looking forward to another potential surgery in the upcoming weeks. Just really hoping that the steroids work. PT is optimistic that because the steroids are systemic they should work. I hope she is right because I don’t think I can face another surgery.

My step count is at 316. I have 84 steps to make 400 for the day. I think I can do it if I try. I will be going downstairs more. I just been leaving my room to eat and use the bathroom. I haven’t been walking around the house that much. I will later. I am certain I can do 84 steps or more by the end of tonight.

Reading Friday and Other Things

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

Reading Friday and other things

I finally got a copy of “how to be an antiracist”. I started reading it today. I really want to be antiracist. I know racism exists even though I think I am not a racist. The book White Fragility taught me that. That is another good book to read.

I had PT yesterday and the first thing she noticed was my facial hair. She congratulated me on getting it. I told her there was a bald spot I have been trying to grow for months now and she said to just keep shaving it. So I guess that is what I am going to do when I get sick of having facial hair. I also noticed that having facial hair can bring facial hair so I am hoping this time around more hair sprouts.

I talked with my cousin last night. I asked him if he would take me shopping and he said yes. I will be going after my therapy appointment Tues. I hope to get some steak while there and maybe some burgers. I will get the frozen kind so that I don’t have to worry about them going bad in the fridge. The Bubba burgers are good to get. I also want to get roast beef from the deli and some pulled pork as I haven’t had it in a while.

Someone on Twitter said something about getting nugs from McD’s and I had to get some. Now I am so full that I won’t be having dinner with my mother. She is making fish tonight. I ordered a fish sandwich so I am good. I shouldn’t have ordered a cheeseburger but I did. I couldn’t finish all the nugs. I am glad I didn’t order fries.

I just called to get a ride to PT for Monday and found out all the rides are free right now. That is cool. I don’t have to worry about payments. I was worried I would have to put some money on today because I had booked the ride yesterday and knew there wouldn’t be enough for Monday’s trip. But I don’t have to pay. I wish someone had told me this sooner. I hope the ride doesn’t pick me up earlier like they did yesterday. I had to wait a half hour so I went to Walgreens to get some soap to wash my face. I just hope it helps with the acne that I have.

I got no response from my therapist on the message I sent her. I hope that we can talk about it when I see her Tues. I knew she wouldn’t respond but I was hoping that she would. We have a lot to talk about. I just hope that I am heard and not criticized for what I say. I was straight talking in the message about how things are and how I feel. I really hope she gets what I am saying.

Saturday Blog 27062020

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

Saturday Blog 27062020

I have been ill all day with the UTI. I really am sick with cramps and backache. The weather isn’t helping as we are having thunderstorms supposedly. It sure is muggy in the house though. I could use a shower but I don’t feel like it. I don’t have enough energy for one. Was hoping Tylenol would help the cramps but it didn’t do anything. I can’t wait for Monday to be here so I can go on antibiotics to feel better.

Aside from feeling sick, I have been depressed. I just can’t seem to get out of this funk I am in. I want to cry but the tears aren’t coming. I sort of have been in a dysphoria as the things on my chest are bothering me to no end. I want them off so bad but I got to lose like 25 pounds just to see the surgeon. That is depressing me more than anything because I know it will take some work to lose the weight and I am not sure I have it in me to do it. Just sucks.

I am debating on going to the emergency room to get something for the UTI. I don’t want this to continue till Monday. I am in a lot of discomfort and I don’t like it. I hate that I have to wait for the culture to come back before I can be treated. I am going through diapers like crazy because I am losing control of my bladder. The urinary pain pills I am taking isn’t helping much. All it is doing is making my urine orange. I took a full dose just now so hopefully that will help. I have been taking just a half a dose because I want to spread it out over the next few days. You can only take the pills for three days and I am going to need it for at least four days. I should have the urine culture results by tomorrow afternoon. Not like I can do anything with it. I wish they would just prescribe me something when I have symptoms because I know I have an infection. Drives me crazy that I got to wait three days to get treated and in the mean time pissing my pants and be in discomfort.

Monday I will be starting PT. Then after that appointment, I will have therapy. My first back to back appointment in a while. I have been contacting my group like my therapist wants me to all week. I have been posting in either one or both of the groups I am involved in. It has been good to get support and also give support when it was needed. I miss that about the support groups. The one I run is good. I am the admin so I pretty much have to oversee the whole thing and make sure no problems occur. The people in it are caring and support each other. It really is a good group. My other group is just as good. It is mostly in the UK so there is always someone to talk to at any time of day. That is one thing I like about the groups is there is always someone to talk to no matter what time it is because of the different time zones.