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
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
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.
Public transportation disability services and stuff
I had my interview with disability services to get a Ride to where I need to go for medical appointments and other things as long as they were T accessible. I think I got approved as the guy said I should hear back within two to three days. I am hoping two because the third day I will be in surgery. I was wicked beat after the appointment but I had to go to Walgreens for my mother and get some more Gatorade to last me until Thurs. I worked out a system with my bag with my former coworkers as I will need my phone charger more than anything else. I don’t think I will have anything by mouth the first day as I will be flat on my back the first 24 hours. Hospital is in shut down mode so my outpatient appointments have become either phone or video appointments. I spent most of the time this morning getting phone calls about this. I did call my neurosurgeon’s NP and surgery is scheduled. I am to report at the times they gave me. Just thinking about this has given me such anxiety. I spent most of the night prepping my bag with stuff I want to take with me. The last thing I needed was Gatorade. I think I have everything but the meds that they may not have in formulary.
After the trip with Walgreens I started wheezing. I know it is because I am tired and it was cold out as I was rushing to get back home. I just wanted to be in my room under the covers. I gave up keeping the window open. It got too cold in my room. I would have to close it anyway in a few days so just as well. One less thing to worry about. I talked with my ex-supervisor at work and he is lending me my old locker to store my stuff in it so I have a place to put it. This way I don’t have to worry about my family bringing me stuff when my coworkers are already there. Please give a shout out to the medical pathology departments in your hospital because they are working just as hard as the doctors and nurses to give results that are needed for this crisis.
I hate having to cath. I honestly hope it is better after surgery because I cannot live like this anymore. It is just too fucking hard. The flashbacks of trauma don’t help. One day I will write about the stuff I went through with a parent but not right now. I can’t get myself worked up with all this stupid fucking anxiety around surgery. It will just throw gas into the fire when I am trying to burn the fire out. Allergies have been bad the past few days and it isn’t officially spring yet till Thurs. That is probably why I was wheezing. Allergies. I just took Flonase so hope that calms it down some. I will take Benadryl if I need to. I might anyways to calm the fuck down. I had minimal sleep last night because I was crazy with anxiety. My phone kept ringing or I had to make calls this morning and I don’t even remember who I talked to because I was on the phone, writing emails, getting shit done all before I had a cuppa. I didn’t want cawfee and now I won’t be able to have it because I don’t have half and half. I have to go to the super market and get it tomorrow. I want to get Golden Oreos, too. And this stupid cereal I fell in love with but can’t seem to find anywhere but in the damn stores. It’s a flax seed and multigrain flakes cereal that is made by Nature’s Path. So good. That is all I want. Then next week or whenever I am home from the hospital, I can order my regular grocery stuff.