Tag: writing

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.

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.

2 am thoughts

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

2 am thoughts

I woke up about an hour ago because my bladder said to. I had a difficult time trying to go back so I decided to write. Laptop was doing updates so I had to wait a bit for it to finish before the thing could start. I got a message from my neurosurgeon for me to callback in the morning. I forgot what I sent them so I had to look in the sent messages. You can only look at these messages on the web not through the app. I had asked the surgeon if he would look at the disc that I am concerned about while I am under anesthesia to make sure I won’t have problems in the future with it.

I was looking over my last blog so I didn’t repeat anything here but things are on my mind. I think I do have a UTI as I am getting pain on urination with the catheter. After I void, it stings and is sore. I don’t know if I am not inserting it gently enough or what, you need to put some pressure in order to put it in. I will try to be gentler next time, which will be in a few hours. My body seems to want to expel urine every 4-5 hours. Sometimes the void urge is strong and I am able to go but sometimes it isn’t and I have to cath. Sometimes if I sit and wait eventually I go but this is after like 5-10 minutes of waiting to see if my bladder will go on its own. Just when I think I will have to cath, it goes. So frustrating. I never thought I would be this disabled before. I knew it was a chance with my discs being the way they are but I didn’t think it would happen due to a tethered cord.

Ankle is hurting a bit more than it did the last few hours. I hate when I wake up in a 5-7 level of pain. It makes me want to stay in bed but I got some things to do today so I need to try and do them even though I know it will be hard. I need to get eggs and tortilla wraps. Also need cling wrap and I want fricken Oreos dammit. I love the golden ones better than the chocolate ones but the thins are the best! It has the right amount of cookie and filling. I might get both if they are on sale. Depends on how much the eggs are as I need at least a 2 dozen. I want to make 12 burritos so I need 2 dozen as you need 2 eggs per burrito. Otherwise, you don’t yield as much eggs when you go along. I know because I have done this before. I tried 6 last time on 8 eggs and it didn’t get me very far. I was able to stretch it to 5 but the eggs were not as much as the first. I have trouble judging how much to put in each burrito when there isn’t that much egg. Hopefully using two dozen eggs (at different times) I will yield good egg results and the last burrito won’t be skimpy of eggs.

Next week I got to take off my jewelry. I am going to have my watch in my bag so that I have it. I need my watch as it has a way of centering me. I don’t know if that is the right word. I just feel better with the watch then without. I don’t feel as lost. I want to have my bathroom stuff with me, like catheters and deodorants and what not. I can’t use them day of surgery though. I am going to be catharized during the surgery. I just hope I don’t poop. That is a fear I have which is why I am trying to empty my bowels now rather than later. The new bladder med seems to increase the constipation so I am holding off on taking it until my bowel movements are better. I have been taking Miralax to go but stuff has not been working the way it should and I fear I am going to have colon blow soon. I might have to take a Dulcolax day before surgery so I know I will go as I want my bowels to be as empty as possible. The stuff they give you always causes constipation so I don’t want to be super backed up like I am now. I hate that I will have normal BMs and then nothing for days. I never know what I am doing different that causes this. I am taking almost 2,000 mg of magnesium to try and go along with the Senna and Miralax. The uro NP wants me to talk to my PCP about this to see if there is something else I can do to go but I really don’t want to. I know there is a drug you can take for opioid constipation but that isn’t the only thing backing me up. It is the anticholinergic meds I am taking that is causing this to happen. Plus whatever is going on neurologically isn’t helping my bowels either. So there isn’t just one factor in all of this.

I need to pack my bag of what I will need while in the hosp. It won’t be that many clothes as I will be wearing a hospital gown through most of the stay. I won’t wear underwear again until the catheter is out and I am catharizing on my own. I just want to make sure I have enough underwear with me in case of accidents. I don’t know where the scar will be so I might not be able to wear underwear for a while until the scar heals. I will find out after surgery how things will be. I know that I will be lying flat for 24 hours post op and then I will need to be raised slowly so I don’t get a spinal headache or a tear in the spinal area. Last thing I want is to leak spinal fluid. That would not be good!

Getting sleepy so I think I will go back to sleep now. Writing always helps to calm me down.

karma returned?

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

Karma returned?

Yesterday, I helped two strangers. On the way home from the hospital where I had my appointments, I noticed I lost my ring. I had no idea where it could have been. Last time I felt it was when I was washing my hands and a part of me wondered if I accidently threw it away with the paper towels I was using as I was adjusting it on my finger. That was the last time I remember seeing it. I should have put it on my other hand where it wasn’t so loose but I didn’t so I thought I lost it. Today I called up police and security of the hospital to check to see if someone turned it in. Someone had. I took the next bus to the station and went to the hosp. While there, I decided to go to the lab and see my friends. It was good to see them. I miss working there. I even had a dream that I had to FedEx a sample to get results by 5 the next day. Weird. I think the lab will always be a part of me, even if they get my name and gender wrong. Some of my friends who follow me on social media know I am transitioning. I wasn’t out to all of the people in the lab so I just had to take it.

I had a good session with my therapist yesterday. I had written her a letter which she said I started off strong and then went off on a tangent. I don’t remember what I wrote so it is possible. I am finding transference with her gets easier as time goes on. She kept my letter and the papers I printed out which were the SSF part A. I told her we can use them and they can be our talking point. It will help focus things. Least that is what I hope will happen. Just hope she doesn’t sort of hold me to it every meeting. My psychopharm is. She pulls out the sheets every meeting. She asks about my suicidality. She has been asking since I told her to. My therapist has too. She wanted to know more details about it but I didn’t want to talk about it. I told her it would be a few months before I was ready to act on my thoughts, though I didn’t say it in those words. I am still not sure I will tell her I was going to kill myself.

I told my psychopharm that if I don’t feel better by Monday, I will consider going inpatient for a while. I really hope I don’t end up back south east of Boston again. That place was terrible. I would really hate having to use catheters there. I would rather have a foley put in so I won’t have to worry about it. I get my order of supplies tomorrow. I plan on packing a bag in addition to trying to clear the alcove space that needs to happen. I hope this bag that I have been trying to find is there and not in the other alcove.