I woke up at 3
I woke up at 3am and am still up so I ordered breakfast. I am kind of hungry. My mother’s baby monitor alarm went off shortly after I woke up. She had to go to the bathroom and my sister was there to help her. I was supposed to watch her tonight but got a flare after an emotional response to my mother after she called me a “she”. I hate when I get emotional flares of pain. I hate that CRPS is so dependent on my state of mind sometimes.
I had the breakfast but couldn’t finish the 3rd burrito. It was cold and I was already getting full. I thought about making a cup of tea but didn’t want to stay in the kitchen. I wanted to try to get back to bed. So I am writing a blog to exhaust myself before trying to get back to sleep. I had woken up with back pain which is never a good sign. I took some Tylenol to try and settle it down. I really hope I didn’t so something to my back. I see the neurosurgeon next week and I wanted him to sign me off but I am not so sure he will now that my back has flared up. I have been doing more stuff lately so I can understand why my back is flared. The sneeze I had yesterday morning didn’t help. I felt like I pulled a muscle and that is what it feels like.
I have lots to do today. I need to clear off a space in my room so it is less dusty. I also need to change my bedding. My new foam topper should be arriving today. I don’t know when but I hope it is in the morning and not the evening. My hope is to put it on my bed and then watch my mother while it settles on my bed. I have to have it like that for at least 24 hours. So I can’t be on my bed at that time. I am going to need a chair to sit down because I can’t stand while doing stuff for long periods. That will definitely flare me up more. I really need to get stuff done in my room. My sisters want to replace the rug with a wood laminate. I don’t mind. I hate having a rug anyways. I just hope my bed doesn’t roll on the floor. I got wheels on my bed that have sunk into the rug. One of them have broken due to the weight of me and the bed. But they are cheap plastic wheels so I am not surprised. I hope I can remove them and just have a stopper instead.
The other day I had a phone call with the reporter that is doing a book on suicide. He is interviewing people from the study I was involved in last year. We have become good friends. He asked me how the partial hospital was going with it being virtual. I told him how it was and how distant you can be while being online. You really don’t make friends with the group members because there is no real interaction.
I had ordered my meds by mail and I receive one of the two packages. I should be getting the other one sometime today. I hope so because I am running low on one of my meds. I am surprised it has taken this long. I usually get them right away after I get the email that said they have been shipped.
I am constipated again so I just took some Miralax. Surprisingly, I haven’t had the soft stool that I usually get while taking it, which is good because that means no accidents. I have lost the control of loose soft stool. I can’t keep it in anymore. Hard stuff I can but if it is soft and mushy, forget about it. I think I need to take Miralax regularly for a few days so that I can go every day. I feel backed up when I don’t go for a day or so. I feel like I should take 1000 mg of magnesium at night just so I can go. I hate being constipated. It is the worst feeling in the world.
One thing I have noticed since going to partial is that my suicidal thoughts have gone away. I am not so suicidal anymore. But I still wish that I was dead. I haven’t actively planned anything in a while. I think that is good. I will bring it up in therapy on Monday. I haven’t heard from partial about extending my time. I hope they do. I am so anxious about this. I hope they approve it and will be sad if they don’t.
Listening to 80s
I felt like listening to Pandora today so just turned it on and 80s music started playing so I will keep it on that. I love the 80s. I had coffee and I am somewhat energized. I haven’t decided what I am going to do today. I need to go to the grocery store for half and half and coffee. I might go this afternoon. My back is still bothering me from trying to find this book that I just ordered another copy of. Fuck it. I still got to go to the bank and deposit some money so my account isn’t overdrawn.
My allergies are bad today. I keep clearing my throat and coughing to clear it. I hate when I am so congested in the morning. Makes me gag. Brushing my teeth was fun. I am sucking on a cough drop to sooth my throat. My sister is out of quarantine Tues. I can’t wait. She must be so bored.
I need to shower today. I smell. I need to be better about showering as I have just been showering once a week for a while now. I used to shower every other day but I have let it lapse. I just seem to shower when I can’t stand the feel of my hair anymore. I have a full beard now so I need to wash it or it gets itchy. I have decided to keep it for now. I like it. I just wish the tiny bald spot would grow hair. It is one of the reasons I have to not keep the beard.
My back is still bothering me from looking for the book last night. I don’t think it would be wise for me to go out today. I don’t want to get stuck while out like I did before. I will just get upset. But the only priority today is to shower. Just hope my back doesn’t crap out on me. It is really bothering me right now. I just want to lie down and rest. I am getting hungry but I don’t feel like making something to eat. I haven’t had anything to eat since yesterday. I only had Ramen noodles all day and some pretzels. I don’t really know what to eat. I want to make a chicken sandwich but for some reason it is nauseating me so I don’t want to eat anything. I might make a fluffernutter. It is a sandwich with peanut butter and fluff (marshmallow crème).
The one self-care thing I absolutely hate is nail cutting. I swear my nails grow superfast and I feel like I am cutting them every week. I hate it. I hate toe nail cutting more. My sister just came up with food so I don’t have to worry about it for now. Yay! I will have some in a little while.
Pain is lonely
I was scrolling through facebook and came across the meme “Pain is lonely” and it struck a cord with me. It is lonely. You have no one to talk to about it that really get it, unless you talk to someone that has the similar chronic pain that you have. I find that even though I talk to my BFF sometimes she doesn’t understand the kind of pain I got through with my ankle and foot. She understands everything else, how pain can make you cranky and tired and not motivate you to do stuff. It is a tradeoff. I rather have some understanding than none.
I got a call from the partial hospital place and they sent me email to fill out and send back. I had to fill out some form using adobe but it was confusing so I just saved it and sent the form. If it is wrong I am sure they will let me know. I have my first meeting at 9 and then group start at 10. Fun. I told them I have an appointment at 2 that I need to keep. It is my therapy appointment. The schedule is DBT based with some creative groups in between. Looks like a regular hospital group program but without the admission.
I went to pick up my prescription because I thought my neurologist changed the order. She didn’t but just gave me more refills. WTF I told her specifically I am taking more than what is prescribed like we discussed. Fuck. I hate when she doesn’t fucking listen. I hope she has it in her notes. Fuck. I am so pissed off.
My mother’s covid test came back negative but she has a cold. Despite me and my sister telling her to wear a mask, she refuses. She wears it around her neck with her mouth and nose exposed. Helpful. Not. I am staying in my room and using sanitizer when I get back to my room just to disinfect my hands. I do not want to get sick. As far as I know, I am the only one that got the flu vaccine.
My neck muscles have been really hurting me today on my left side. It feels like I pulled a muscle or something. I might have slept wrong again. I am going to tell my neurosurgeon when I see him because the pain isn’t going away and I haven’t found much relief. Heat, rest, meds, and stretching have not helped.
I am so tired. I didn’t sleep well again. I woke up around 0230 to pee and stayed in bed for a half hour before I finally got up to go. The urge was there but it wasn’t strong enough so I wasn’t sure if I had to go or not. I should just go anyway rather than lay there wondering. It took me some time to get back to sleep afterwards. I set the alarm for my appointment that was canceled on me due to covid. I am not going to reschedule the test. This is the third time I have had to set up an appointment since my surgery and I am not going through the anxiety again. So fuck it. I am not making another appointment.
Going to partial
I had a lengthy conversation with my therapist yesterday about partial hospitalization. She really wants me to go and think it will help me. I was cranky and irritable and that concerned her. I told her I haven’t been eating and she said that was concerning. The whole appointment was a concern for her. I told her I would get in touch with the social worker today about starting the program, which I did. I start Thurs. I should be getting a phone call tomorrow night about how to join as I haven’t received any web information. It starts at 9. Yuck. I think I just have two meetings that day, back to back. Just hope I can make coffee before the meeting. I have two meetings so far for Thurs back to back.
Yesterday I got tested for Covid. I am glad I scheduled the appointment as I was in and out. Otherwise I would have had to wait two hours to be seen. I am still waiting for my results. It was easy to get to and I am glad I was familiar with the area. After the testing, I went to Starbucks and got a Crème Brule latte. It was really sweet and I only got the 2 shots of espresso. I should have gotten three but it is ok. I know for next time.
I am feeling good today. I might shower and shave. My beard is a little on the long side and is irritating when I put my chin down. I think I might just trim it some so it isn’t annoying. I haven’t shaved it in over a month now. I like the results. Sucks with the mask no one can see it outside of the house. I love the feel of the beard under my chin.
I ordered a new calendar today and was not pleased the price went up by 10 bucks. I usually get it for 10 or under. But I like having a calendar I can look at a glance to check in what day is what. Helps me to keep track of the days much better than looking on my phone.
Tomorrow I have the dreaded urodynamic testing. I will be glad to get it over with. It isn’t a pleasant test but it is important. I just hope all is well and I can keep doing what I have been doing. It is a little tough sometimes because I know I still retain and the urge to go isn’t strong at times. Sometimes I will be sitting on the toilet and have to wait more than a few minutes to start urinating. That is so frustrating. Just when I am ready to say the hell with it and cath, I go. So it is worth waiting I guess. I got to figure out what time to leave my house. I think I will leave around 9 so I can get some coffee at Starbucks and maybe something to eat. I have been wanting to have their breakfast sausage sandwich. It is supposed to be cold tomorrow. I am just glad the building isn’t down the street from the hospital this time. It would have taken me forever to walk there with my back the way it is.
I got a lot of worries with my family right now that I wish I could talk about but I can’t. So hard having so much anxiety about this. It definitely isn’t helping the tension in my neck and jaw. I haven’t eaten anything today. I don’t know what I want to eat. I want to nap. Maybe I will be hungry after I have some sleep.