Author: Midnight Demon

Saturday blog 30042022

I had a rough night trying to get to sleep last night. Around 2330 or so, I started getting the spaghetti feeling in my arm. It kept flailing on me and my leg with it. I took some Benadryl and waited. When that didn’t work, I took some Ativan. I think by 0100, I was settled down enough to sleep. My med alarm went off at 0815 but I shut it off and went back to sleep. I didn’t get up till around 1300. I was surprised my bladder wasn’t ready to explode but I had no feeling. When I did void, it took forever to empty. I should have cathed.

I had my coffee and what was left of the lemon cake. I am not hungry but I know I should eat. My mother is making vegetables before they go bad, cauliflower and sweet potatoes. I want to order Chinese but I don’t think I can stomach it right now. I really don’t have hunger at all. I just want to go back to sleep.

My mother made chicken with the vegetables she made. I did end up ordering Chinese food because I wanted Lo mein. Plenty of leftovers for tomorrow. The house stinks of the cauliflower. My nephew opened the door but my mother got cold and shut it. She never leaves the door open long enough for the smells of cooking to leave. And she never uses the vent while cooking either.

I realized last night that I went from three appointments next week to five, with two on Mon. I am going to be exhausted. Three are virtual and two are in person. Wed I have no appointments so I can rest up that day.

Someone wrote an article on The Mighty about CRPS What My Doctors Never Told Me About Chronic Regional Pain Syndrome | The Mighty. I can relate 100% to it but it fails to mention the loss of being able to work. It briefly mentions how activities needs some down time on “good” days, which I don’t think is very accurate. It is very difficult to know a good day from a bad one. Monday regardless if I am having a good or bad day I still need to see my doctor. I know the appointment is going to take a lot out of me. It is an hour (depending on traffic) to get there, figure an hour of being there waiting for the doctor then actually speaking with the doc and being examined, then an hour or more ride home. One appointment equals three hours. That is a long time. I just bought some dates and I hope I remember to bring some with me so I don’t let my blood sugar drop. The doctor’s office is at an office complex with no place to stop to eat or get something to drink.

I was able to stay up till the top of the 9^th inning last night. Sox were leading 3-0 most of the game. We won 3-1, our 9^th win. I am not feeling so tired today so I might be up all 9 innings. Nate is pitching tonight. Hope he is nasty.

Being disabled sucks

I had wanted to try the bus routes to see my pain doc today but I woke up really tired despite sleeping ok. I went to pee and took my meds then went back for a nap. I woke up more tired than I did before. I should have stayed up. I had messages from the pain doc when I got up. She has an availability on Monday and they wanted to know if I could see her then.  I thought of all the bus rides and said fuck it, I will take an Uber there even though it is going to cost me close to $100 round trip.

I had my coffee and some cake that my sister made. It was a good lemon cake. I love lemon cake.

I had therapy yesterday, an urgent session. I was feeling overwhelmed with talking to the palliative social worker the other day. Pain has been bad and I had posted that I wanted to die on Twitter. A dear friend in South Africa sent me a message yesterday morning saying that he needs me. Told my therapist and she asked how I felt. I don’t really know how I felt or how I answered. It felt kind of good but in a burdensome way. It made me think about who I was leaving behind. I am just so damn tired of being tired and in pain every single day. I need a nap in the afternoon to function, and for what? Not like I have a job or anything to commit myself to. Most of the time I have doctors appointments and therapy. It’s a juggling act. I have been trying to schedule a study blood draw for the past three weeks and the time keeps changing because I am too tired to go into town. I don’t know if this is part of Covid just making life worse for me or not. I just know I want to fucking die. Been saying this for years but survivors guilt is real. I don’t know why suicide holds a different kind of grieving process over natural or cancer death. It is interesting how it is viewed. Most people refuse to accept it and have said that the mental illness is what killed them. Chronic pain and depression is what is killing me. Being disabled doesn’t have its perks. Covid hasn’t helped matters as I rarely go out these days.

I was thinking about how fucking stupid a urine “pain management” screen is for someone on opiates of the highest caliber. The drug I take doesn’t register on the panel. That is why it is stupid so if my doc wants to make sure I am taking my meds, she will have to order something else.

I will be taking my night meds soon. Ballgame starts about the time I plan on taking them. I am really tired because I didn’t nap this afternoon. I slept in so couldn’t really rest. I tried but my bladder said no no no. I haven’t been drinking as much as I should yet my kidneys still function. I think they over function to be honest but there isn’t a test for that. I output a good volume when I cath versus when I void. I don’t know if the “new” uro meds are doing anything. I know it has been hard trying to take the one three time a day and the other on a full stomach because I don’t eat that great most days. I am usually eating ok the first two weeks I go shopping and then I am out of stuff and just can’t make dinner or lunch.

I hate spring time because of the blooms. Some scent has been in my room on high pollen days and I am sniffeling all day. Chronic Rhinitis is the medical term. I have to use flonase or sniff sniff. Works in a few days time. But I hate sniffing the stuff to make my nose feel better. Stuff is nasty at the back of my throat. Sucks.

Planning an adventure

I sent a message to my pain doc asking if she could help me or if I would be wasting my time. I told her the situation. She is out for the week so her nurse called me. After a little phone tag, we finally connected. She said that it would be better to see her in person and that is when I was worried. The doc’s office is in no where land according to the T but I think I figured out how to get there. I would take an Uber but it’s $50 one way. I might take an Uber back home, depending on how tired I am. I plan on taking this adventure probably Friday to see where I am going and how difficult it is to get there. If it is difficult I might ask my sister if she could take me.

Last night I finished my workbook on BCBT. I started reading On Juneteenth. It is a really easy book to read so I think I might be able to finish it by the end of next week, if I keep a steady read schedule.

I finally made an appointment to see my ortho guy for my shoulder. I am tired of it waking me up in the middle of the night. Thing is though, it is not really my shoulder but my bicep and deltoid muscles that wake me up. They flare and I am in so much pain. Sometimes just getting up and sitting up for a little while calms it down. But then when I lay back down again, an hour or two later, the pain is back so I have to take something for it.

My foot/ankle has been hurting me most of the day and now the pain is back up my leg. My shin really hurts and I haven’t done anything all day. I just been drinking coffee to stay awake. I had three cups so far. I am thinking of having another one but I had a big lunch so I am really full right now. It’s raining so that is why I am hurting. I am going to take some gaba to try and settle it down. Hate hurting so much.

My pcp responded to the echo report. It is normal and she still recommends I go see the cardiologist/EP to see if there is more to be done about the tachycardia (fast heartbeat). I am struggling with this because the appointment is virtual not in person so how is he going to know if I have a fast heartbeat that day? I just hope I don’t have to go through a stress test. I saw my father go through one and it wasn’t fun.

I am having #4 cup of coffee to avoid a nap. I am so tired. I haven’t showered or brushed my teeth today. I plan on taking the shower after I finish the coffee. Hopefully I remember to brush my teeth!