Tag: back surgery

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.

shitty day for therapy

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

Shitty day for therapy

I had PT this morning. I also had a psychotherapy webinar but it was an hour and a half and that would cut into my PT time so I didn’t go to it. I had PT and my PT gave me a new scale called the Yucko meter. It ranges from 1-10 and you base it on how yucky you feel. I was a 4 by the end of session and had to lay down but I had therapy so I couldn’t. My therapist decided to reschedule the time because I felt shitty about 15 minutes into session. I liked that she cared enough to reschedule because I was feeling so crappy but at the same time I felt terrible that it had to happen. I rescheduled for Thurs. I have PT that day but the time for therapy is a few hours later so I can rest. I do have to have 400 steps every day in between sessions. I got more than half that right now.

I goofed with my pain meds. I was supposed to call in a refill for my pain meds last week but I totally forgot and now I don’t have meds. I put the request in last night so I should hear back sometime today. It is raining heavily right now and supposed to be storms all afternoon. I feel it in my ankle so I won’t get my prescription today if it gets called in. I will pick it up tomorrow. It is supposed to be hot and muggy all week. I hate it already. Least the rain is cooling things off a little bit right now. I have been running my AC all weekend. I will have to give it a break soon so it doesn’t frost up.

Tomorrow morning I see my neurologist via virtual visit. Then I have my psychopharm visit. I have to tell my psychopharm that I stopped taking the duloxetine because of stomach upset. The reflux was too much for me to handle. It was especially bad at night. I haven’t been eating much the past few days because I have no appetite. Yesterday I just had Ensure and a bowl of cereal. Today I ate a little better. I had a piece of chicken cutlet and some French toast. I got the hungry horrors today probably because I had gaba last night. My ankle pain was out of control last night. It took all that I had to control it. In the end I took Benadryl to sleep as it was after midnight.

I layed down after therapy was over. I didn’t sleep, I just laid there listening to classical music. I still feel shitty. My head feels so fuzzy. I am definitely a 7 on the yucko meter. I should be laying down and resting but I don’t feel like it. I am so aggravated that this is beyond my control and that I have to literally do nothing but rest in order to feel better. I wanted to get my haircut this week but that doesn’t seem likely. I have too many appointments this week. I wanted to go Wed but I don’t think I can because I have testing done in the morning. Urology finally called me and set up urodynamic testing. I have that Wed morning. I am back to being busy with doctor appointments. My psych wants a zoom meeting but she hasn’t responded yet with a time and date. I half want to message her and say can it be next week as I am so booked up. I am tired just looking at my schedule. I don’t have to leave the house for any of the appointments but still, the mental energy I have to put in them is tiring.

I was able to brush my teeth today. I used my electric toothbrush, which dropped toothpaste on my shirt. I had to change shirts. I still need to wash my face. I am mustering up the energy for that. My back has already started to act up on me. I don’t know if I can stand that long to wash. I got a huge headache still so I really don’t think it is going to happen. Maybe this evening.

I got to lay down again so I will stop here. I wish I didn’t feel so shitty.

appt with neurosurgeon

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

Appointment with neurosurgeon

I took a shower today because I wanted to get the loose hairs from my haircut out of my head. I also didn’t want to stink. It was hard because I was exhausted and the whole process of showering made me more tired. I couldn’t nap though so I just rested in bed before I had to leave for my appointment.

I was thrilled my surgeon said I didn’t have to have another surgery for the fluid. He is going to keep an eye on me and my white count. I was to have bloods done today but the lab was closed so I will have to go tomorrow or Friday. Depends on what my energy levels are tomorrow. I am still exhausted so I hope that I can sleep well tonight. I am to contact him should something else arises. I am cleared for PT so I will be making my Ride appointment tomorrow for the appointments that I have. I am so glad I can start PT again. I am so deconditioned and even he said that I would be as I haven’t done much since surgery. This complication has wrecked my recovery.

Right now I am really tired and want to go to sleep but it is too early. I go to bed now I will wake up around midnight and then be up for a few hours, totally throwing off my sleep more than it already is. I will wait till my meds kick in some and I am totally brain dead. I also got to keep an eye on my bladder as it hasn’t been functioning the way I would like it lately. I am back to voiding on my own but I don’t know how long that will last. I haven’t felt like I have an empty bladder when I do void so I probably will need to cath before going to bed. Back is killing me so when I am finished blogging I am going to lay down and just read for a bit. I haven’t read since Friday. I wanted to finished the Linehan book this weekend but my brain had other plans (do nothing apparently!) I want to start the Dante Club by Matthew Pearl. It seems like a good book to read. I have read his other books and like his style of writing.

I goofed on my Powerade order. I accidently ordered the “zero” kind of white cherry. It has sucralose in it which I do not like. It is drinkable but I rather have sugar in my drinks rather than the fake kind. I have to be careful when I order more next time. I had dinner and it was a good piece of steak that I ate. Why am I still hungry?? I might make a burger.

All day my left leg has been hurting me. The only time it didn’t hurt was when I was meeting with the surgeon. Damn thing. I don’t know why it is angry today. But my back is killing me as well. I hate that I am in so much pain. Hope that my night meds help ease some of the discomfort. Surprisingly, my CRPS ankle/foot has been behaving. That is the weirdest thing that has been going on the past few weeks. I don’t know if it is because something else is going on with me or what but I will take the pain free days. Just hope I haven’t spoken too soon. That will suck.

Lazy Sunday

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

Lazy Sunday

I have done nothing because there has been nothing to do without complete exhaustion. I made dinner and I am so tired it isn’t funny. I just heated some ribs and mashed potatoes then cleaned up afterwards so I wouldn’t hear the tyrant bitch. It was enough to get me worked up and feel worse than I was. I don’t know why I am so damn tired all the time. I don’t know if it is because my blood counts are still low. I just feel like crap.

I wrote an email to a friend and tried reading my book. It has been hard reading Marsha Linehan’s book as there are so many parallels between her illness and my own. The feelings are palpable and it stirs up stuff. She talked about finding god and being transformed when she found him. I can understand that. Lots of people do when their faith is strong enough or so I hear. I am glad she found him so she could move on with the demons of her life and work on “getting people out of hell”. She writes this so many times. I read some of the reviews for the book and there was a lot of complaints about this. I don’t mind it though as it is her life’s work and her book. She can write it as many times as she wants. It is how she developed a brilliant therapy that helped saved millions of lives.

Today has been a cool day so I have the AC off. I don’t remember what the weather is going to be like tomorrow. There was talk of thunderstorms but I haven’t seen the latest reports about this. It might have changed course or something. I will check it before bed. I am just worried about rain coming through the AC vent as it is open because my brother in law broke it. I have tape on it but that won’t hold much if the rain is heavy. It is windy out but not gusty.

I’ve been listening to Terri Clark and Mary Chapin Carpenter. I haven’t been on social media much. It is too upsetting for me right now. I have been trying to just rest like I should be with this stupid fluid build up. I don’t know when I will be having surgery. I am guessing sometime next week or the week after. I am kind of scared of the recovery as this first time was a doozy. It has been 10 weeks since my surgery and I still feel so tired and exhausted with doing anything. I just want to nap all the time. Yesterday I slept most of the day. I can’t stand how my stamina is so low. I am not sure what will increase it. I guess I need to do more but I don’t want the leak to get worse. I am on my last day of steroids. I hope the headaches don’t come back when I completely stop them. I don’t like the headaches as they just make me tired.