Category: blogging

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.

Post Op

by Midnight Demon, posted in blogging, depression

Hey all,

I had surgery Thursday. It went well and I did have a tethered cord and a messed up disc. They repaired that. Aside from horrendous post op pain I am healing as well as can be. I am getting frustrated with how slowly things are going but to be expected. I can’t rush my recovery. So far bladder is functioning the same as it was. I am not drinking a lot so having little outputs. Sometimes the urge is strong enough for me to pee on my own. Other times I got to cath or I just don’t have any urge and have to cath after 4-5 hours. Urologist said I might have to go every half hour in the beginning. Luckily it hasn’t worked out that way yet. Most I am going is every three to four hours, which is what uro wants.

I will be in the hospital until at least Tues, barring any complications. PT has been wearing me out severely so they don’t want me going home until my stamina is a little better. I am progressing every day. I’m just not where they want me to be right now. A lot of movement tends to wear me out so fast. Just getting up to pee is tiring. And there is not a lot of steps from my bed to the bathroom. I still need to call someone when I have to go just in case I fall.

I have hit a bit of more depression because of my frustration of not being able to move the way I used to. Back pain is bad but is getting slowly better. I haven’t had this much pain in so long. I am glad they increased my BT to the same dose I am taking extended release med. I hope my pcp can keep this change while I recover as it really helps. I just don’t like the constipation all these meds are causing. I can’t wait to go home and take Miralax twice a day as I know it might cause colon blow but it is so needed right now. I am so bloated from not going.

Sleep has been elusive but I hopefully will be getting my meds earlier than I did last night. Last night I got them really late so had a difficult time getting to sleep. Plus RN wanted me to take a med at 2 am so I didn’t want to sleep then be woken up. I ended up sleeping until 330 when I woke up to pee. Bladder is good for that. Seems that time is my regular time. I hate it. But I end up cathing to make sure I am empty so I can sleep.

My roommate went home. He was a dude from Maine with similar issues as me with the back. We exchanged numbers and said we’d call. Don’t know if it will happen. He seems to be a good man. Tends to talk a lot in circles but he is an older gentleman.

I hope I don’t have a problem sleeping. I am so tired I feel like I can sleep through the night. Hope I do.

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.