Tag: CRPS (formerly RSD)

one week post op

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

One week post op

I just had a shower to get rid of the hospital smell and to wash my growing hair that needs it. It has been a few days since I last washed it. My mother dried my back and she said I was hairy. She doesn’t get it. HAHA I thought she would know by now that I am on hormones seeing as I have facial hair but she isn’t making the connection and I am not going to enlighten her.

My groceries came today from a different vendor. I had my niece help bring them to my room as I couldn’t carry it. I am not supposed to be lifting anything but it is hard remembering. After the groceries were put away, I took a nap until my sister got into an argument with her daughter. I had no idea what the fuck they were arguing about. My niece left shortly thereafter, before I got into the shower. It was nice to shower but very tiring. I don’t think people realize just how tiring it is for people with chronic illness and pain to shower. I know my fellow pain sufferers understand this.

I plan on making a steak for dinner. Hopefully it will give me the protein and iron I need to get to feeling better and not so tired all the time. I also bought chili which I will have tomorrow with some tortillas. I love making a burrito with the chili and eating it like that. I wish I bought red potatoes. I would love a red potato salad right now, with oil and vinegar not mayo. I love a potato salad with oil and vinegar. It tastes so good. I like it with mayo too but will prefer oil and vinegar.

I read a chapter in my book. Seems I can read a chapter and then lose interest when it comes to an end. I want to finish reading the book as it is due in a couple of weeks. I don’t know if the library will be open by that time. Everything is still in lockdown with the virus. I haven’t kept up on the reports for how long it will be as I have been staying off Twitter with my recovery. It is hard to listen to all day long and about the rebellion of youngsters or even others who don’t care about themselves yet profess to care for others. The real trenches are the lab workers and assistants to get blood samples and other specimens processed. There are also the cafeteria workers and cleaning people that always seems to get missed in times like this. They do their job without opposition and they are often down cast but without them, trash would just be piling up and no one would eat in hospitals.

My sister was telling me that there were 50 nurses at the hospital I was at with the virus. I hope they recover and don’t die. I don’t know the age groups but sad to think that healthcare workers aren’t immune to this kind of stuff. Front line people. Makes me sad.

My other sister made beets. I was craving them so I am glad she made them. They were good. Just roasted them with salt and pepper. I wish I had ranch dressing to go with them but I don’t. The hospital where I was has good beets you eat at the salad bar. They are yummy with ranch dressing. I miss eating in the café. Maybe when all of this is over I will get some beets during one of my visits. I am going there next week to get my stitches out. I didn’t have OT or PT call me today. I found that kind of odd. The orders are there for them to see me but I think with the way the virus is, they are limiting people into homes. Sucks all around.

day one home from surgery

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

Day one at home

Today has been rough. I did too much and caused myself to get a headache that I still have that the neurosurgeon is worried about. I have to go back on steroids for a week to see if that helps calm things down. I am trying to sleep but it isn’t coming. I have too much on my mind.

My numbers for my blog stats have been terrible. All day I have just had three views so I am hoping this post will draw some readers out. I know I have been sporadic in my writing but I am recovering from surgery right now. Meds are making comprehension difficult and concentration has been worse. Because of the steroids, I have some appetite. Unfortunately, meals have been difficult to sit through as it hurts my head to be upright. I rather be laying down.

I had an appointment with my therapist today but we didn’t get much accomplished as the connection was terrible. I was kind of out of it so that didn’t help matters. She put me down for another time next week so I think I should be better by then, or at least less druggy. Today was a real test as I had a lot of phone calls. I got accepted for the Ride, a disability transportation service but I can’t seem to navigate it on my phone or laptop so will have to call tomorrow to set something up.

I want to try and shower tomorrow. I don’t have a health care worker coming in yet and for some reason I am on MRSA precautions. I don’t know when that happened. But the nurse was worried about it and sent off a special stethoscope for the clinicians to use. Nothing fancy about it just deemed “MRSA”. I have no use for it as I use my blood pressure cuff for my readings and my own thermometer. I have no fever so that is good. I think I would be feeling sicker if I was. I have been feeling hot and cold all day, running the fan, shutting it off, turning it back on. I also have been taking my long shirt sleeve shirt off and on all day. I don’t know why I seem to run hot then cold then back hot again. Hope I am not getting sick. I worry with those that are outside the home may bring it in, like my nieces and nephew and sisters. I am at a high risk because I am just off of surgery and am on steroids. I have been trying to keep fluids up but it has been a challenge. I don’t like standing right now as it hurts. I have been able to void on my own though. Last night I had to put myself on a timer so I would go. It worked but disrupted my sleep and then the bowels did their thing on me. Luckily, I didn’t lose control or I would have been crushed. I did have to change my underwear though. I didn’t want to track the stuff to my wound. I don’t have a bandage on so I am careful about what I touch around the scar.

The one question that I am shocked I keep getting asked about is suicide and suicidal thinking. The nurse today very concerning asked about it and wanted me to let her know if I have those thoughts. I am not having them because I got other stuff on my mind. I am depressed because I feel like I should be somehow a long better than what I am but I am only a week post op. I am having a hard time keeping track of pain medication management because I was used to a nurse bringing me the meds. Now I got to sort it all out. I spoke to my pcp about it and he is okay with the increase in the interim while I am recovering. I’ll get a refill next week when I am due for one. I am glad I can talk to him about my pain med needs. Some docs don’t want to hear it after surgery. I had a hard time finding a doc to listen when I had back pain like this. In the end, my pcp put me on pain meds and there it stayed. My pain meds have always been managed by my pcp and I am glad because they get to see what you are like more so than a specialist.

day of surgery

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

Day of surgery

I woke up an hour before my alarm. I plan on staying up. How I want a cup of coffee right now or tea. I just took my meds with the bare minimum of water. It was so gross taking them with water, especially this early in the morning. I can’t drink water and now I am a little nauseous. Hope it goes away. I got to brush my teeth. I was going to shower and I might. Just not right now. I am wicked nervous about this and my right arm is half a asleep. I hate when I sleep on it. I got an empty eyeglass case so that nothing happens to my glasses.

I got to get ready now. I just wanted to write a quick note that I may not be writing for a while. I am not sure when I will write next but I will when I am up to it and I will bitch about every second of it so expect swear words.

Anxiety continues and panic is starting

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

Anxiety continues and panic is starting

I keep on being “ok” and then I will log onto the patient web thing and see my “procedure” appointment and I just panic. So I can go from a little anxiety to major anxiety in a short time. I hate having this much anxiety. To set things even better, I am having extrapyramidal symptoms in my hands as I cannot hold a pen without shaking. I took some Benadryl as that is what a google said was for fast relief. I was going to take an Ativan but seeing as allergies are out of control, Benadryl seemed a better choice as it will help the anxiety as well. If I feel drowsy I will sleep. I got nothing planned. I nixed going out. Even if I got the half and half, it would go to waste as I would be the only one using it and for 2 days I am not going to go through a quart so I would just waste my money. My waistline does not need Oreos. I still would like the cereal though. Oh well. I will make do without.

I finally was able to successfully test the virtual health thing, I think. I got it on my laptop and phone so I can use either tomorrow. I think I might do the laptop in the morning and then phone in the afternoon. I am not sure. I told my therapist I was having difficulties, and she said we can have a phone call session. I am so nervous technology is going to fail. But we will see tomorrow if all goes to plan.

I had like four of my hard cookies. They made good for dunking in my tea. Bladder is not working today as far as voiding on my own. I am writing down some questions for the urologist if I am able to connect for tomorrow’s appointment. I’d like to know if what I am doing is alright with her. I think what I am doing is okay but there are times where I cath more than 5 times a day and then there are days where I only cath 2 or 3 times. It totally varies on my urge to go. Sometimes it is strong and other times it is there but not enough to go. I can sit on the toilet but it takes like 5 minutes of sitting there to pee. I hate it. But then I hate cathing too. I got into a really bad fit last night about it. Mostly because it triggered a flashback but most of the time I can shrug it off. Yesterday was a day where things I normally shrug off didn’t get shrugged. I was having such a hard time and then there is this therapist in MN that keeps counseling me. I know she is just trying to be nice and supportive. But I just find it a little weird.

I had chili for brunch. Had tea as well. I don’t know what else I will have. I am not hungry right now. I might have cereal later. I am trying my best to not have anything after 10pm. Last night I failed. I was hungry so had a PB&J sandwich around 11pm. I just realized I am not going to have Starbucks until after surgery. What a bummer. They closed the Au Bu Pain near the hospital so I can’t have their coffee either. I am sad about that because I love Au Bu Pain. I wonder if the one in the Square is still open? I got to look next time I go there.

Tomorrow is T shot day. I plan on giving it after my appointment with my uro, that is if I don’t end up giving it around or after midnight if I am still up. I want to change my sheets but I will probably do that tomorrow. That should make me tired enough to go to bed early so I am not up all night. I don’t know if I am going to sleep or not. I am so anxious as it is. I am surprised I am sleeping. I slept all morning though because I was up at 2 bloody am with my damn bladder. I hope that I don’t have a repeat of this tonight as I need to be up at 8 am to be ready for my uro appointment at 9. Got three appointments and I don’t have to leave the house. Going to be weird.