Category: cauda equina syndrome

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.

lousy day

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

Lousy day

I woke up in the middle of the night and couldn’t go back to sleep. I was up for a bit and then I must have dozed off as I woke up with the light on and me sitting partially up. My head was killing me from being in that position. I was tired as all hell. I took my meds and then made some coffee. I couldn’t be bothered to brush my teeth. I still need to do that. I have another UTI so will be going to the hospital tomorrow to drop off a specimen. It is going to tire me out much like today has. I had groceries delivered and my back was not having it. After I had my coffee I decided to make breakfast. My back went into protest. It was all spazzing and shit. My mother wanted me to do the dishes after I was done so I had to sit down like three times to finish the 5 dishes and pans that were in the sink. I felt so damn lightheaded. Then I decided to wash my face. As I was bending down to rinse my face off, I heard a pop in my back. It didn’t feel too good after that. I started to feel sick. I was getting all kinds of weird symptoms. My groceries were late and all I wanted to do was nap. Finally they showed up and I was able to put everything away and then make my way upstairs. My nephew put my bottles of Powerade outside my room so I brought them inside my room. I was careful lifting the bags. I was extremely tired after all of this and finally laid down to nap. It was a good nap. I didn’t sleep for too long so I hope it doesn’t interfere with my night time sleeping.

Not all the groceries that I ordered came in. I didn’t get all my Powerade and Gatorade bottles that I ordered but I got enough to hold me over. I can get some more later this month if need be. I am going to place another order in a week or so to get the bottles I didn’t get.

Last night I was talking with my psych and she thinks that I was pre-septic when I went to the emergency room a few weeks ago. That would explain why my white count was so high. I hope that with this UTI I don’t have a repeat of those symptoms. I sort of felt it today but I think because I didn’t sleep well last night that was why I felt so shitty. I lost control of my bladder so I know I have a UTI. I just hope it shows up on the testing stuff because I don’t want to suffer all weekend pissing my pants. I got a diaper on now so that I don’t wet my underpants and pajamas. I hate that when I have an infection, I lose control of my bladder. I just hope I don’t discharge blood clots like last time. Those are painful as fuck to pass.

I had a good talk with my psych last night. She told me she got hired by a hospital and will be starting in Oct. That kind of put me in a quandary. I want her to be my doc but I really like the psychopharm I have now. But I feel like I am betraying her if I don’t follow her. I kind of like that I have all my care in one place right now. Seeing my psych would disrupt the care a little bit. I don’t know what I want to do. I sent my psych an email asking her what she wants me to do and if seeing the people I am seeing is still okay and that I won’t be betraying her. I miss her so much. It would be great seeing her again but I feel bad for the psychopharm I am seeing now because I really like her. She cares about me and understands about being transgender because she is also. I will figure it out one way or another.