Random thoughts 05082020
I went to buy some dark chocolate today and was rewarded with Godiva ganache hearts, which is the best of the best dark chocolate. It is so fricken good. I bought two packages. I could have bought all four that were there but I didn’t want to be greedy. I came home and I was exhausted. I made a bacon burger for lunch and then tried to nap but couldn’t sleep. I had coffee before I went to the store and it just made me tired. Tomorrow I might go to Starbucks before therapy and get a macchiato. I am in love with their Caramel Cloud Macchiato. It is so good. I think that will be good for me to go out. I am getting cabin fever staying inside all the time.
I wanted to shave and shower today but I am just too tired. Plus my ankle has been acting up so standing is an issue. I will try to do it tomorrow before therapy. I don’t know if my therapist has decided to meet twice a week because I am off my meds or what. But we have been the past week. If I end up seeing her Monday, I will know she really is concerned about me. I sent her a message that I thought made sense but when I read it, it didn’t make any sense whatsoever. Have no idea when I sent it. I think it was in the early morning hours when I couldn’t sleep the other night. I should have written what I wanted to and be done with it but my brain went a different direction.
Sox are playing now. I don’t care to listen to the game. They are playing at the Trop and I hate that ballpark. Sox are off tomorrow. Two of my favorite players are not playing tonight because they are in slumps. Both are left handed hitters and tonight’s pitcher was a lefty so I understand why they gave them the night off but it sucks because there are only so many games. The sox are not doing well anyways. I think their record is like 4-11. Least it was the last I checked. It has been good baseball has been back but it isn’t the same without fans at the game. The noise level isn’t the same and the energy the fans bring is obviously not there. Kind of sad.
I really like Taylor’s new album. My stupid phone only downloaded 14 of the 16 so I had to manipulate the settings to get the two songs I was missing. Of course one of them would be the number one song in the top 100 hits. I am so happy she made history by being the first artist to be number one on Top 100 Hits and Billboard’s 200. I have a feeling she will be there for a while. This is such a good album.
I hope I sleep tonight. Last night I woke up to pee at like 0330 and couldn’t go back to sleep till 5ish. It did me in as I was tired for most of the day. My level of depression has been high today. Gender dysphoria has been in high gear the past few days. I really hate my body right now and I don’t want to grow facial hair until I get my top surgery done, which is going to take some doing. I feel stuck and I guess I am as I can’t move forward with my transition until I lose weight. I don’t think it is fair that I have to lose weight to lose the things on my chest. It makes me so depressed. I hate being in this body and what is worse is that I have grown hair on my chest so I have hairy breasts. Totally fucks with me. Part of me wonders if I will be alive long enough to have this surgery. Right now I feel like I will be better off dead than continue to live the way that I am living right now.
I have been feeling off all week. Wed I contacted my surgeon and he said to go to the ED to get evaluated. I got evaluated alright, complete with MRIs. I got there and I felt like I was going to collapse. They had put me in the least but fastest track in the ED. Until they took my blood pressure and labs. Then it was thought I needed to be monitored a little more closely. I went to the Acute part of the ED and was hooked up to monitors and stuff. I was given antibiotics because my white count was very high, indicating infection of some sort. Nothing has revealed itself to be the source of infection though so I am not sure what is going on. My labs yesterday were better but my white count was still high. I mostly stayed awake in the ED and when I came home yesterday, I couldn’t crash right away. It took some time for my body to settle down. I was so overtired.
I still haven’t gotten my blood culture results yet. All the rest of have come back negative. My urine is clean and so is my chest. They did a chest x-ray yesterday to rule out pneumonia or another lung ailment. I feel crappy but I talked with the PT yesterday and she said it could be that I am deconditioned and that is why I feel so crappy. I think I do have something going on with the fluid collection that is making me tired. I don’t know what will happen now. I got to be in touch with my neurosurgeon and see what the plan is now. I am to start outpatient PT again. I plan on calling next week to see if my PT is available. She is really good and I rather see someone that knows me than someone new.
The weird part of this infection that I got is that I am not running a fever. I just feel worn out and sluggish. I got back pain with it but I think that has to do with the surgery than anything. I was completely feeling rotten yesterday from lack of sleep and I think I am on the mend now. I just hope the antibiotics work and I don’t need to be on them again.
I did feel uncomfortable in the ED because I kept on getting misgendered. No one asked what my pronouns were so they just assumed I was female, even though my chart says the opposite. Usually they are really good but not everyone was up to reading my chart I guess. The ED RN was really good. She found me a turkey sandwich. It was nice of her to do that. She said I was her nicest patient for the shift. I guess her first one had tried to hit her. I feel bad for these RNs that have to deal with violent patients. Doesn’t make the night a good one. I tried not calling her for things if I could avoid it. She did check in on me every so often so that helped. I couldn’t sleep at all while I was there. I was up for over 24 hours. I just lost track of time.
I just wanted to shower when I came home from the hospital. I did and regret it as I couldn’t go on. I felt so weak and tired. I don’t know how I managed to get dressed. I felt like I was in there for more than an hour just trying to get dressed. It was awful. I didn’t put on my PJs. It was too hot. I just went to my room in my underwear. Luckily, my nephew didn’t see me.
Life worth living, the book
I have been reading Marsha Linehan’s memoir, Building a life worth living. Today I learned something that is spot on with how I am. I have what is known as “apparent competence”. It is when you basically show that you are functioning but inside you are dying from pain. I love this term and I highlighted it. I think I am going to learn from this book what I haven’t been able to in others and that is to know myself better. Dr. Linehan’s life and mine is very different but we suffered the same kind of pain that made us want to end our life. I am still thinking of ending my life while she has moved on. I just can’t seem to do that. I think if I didn’t have chronic physical pain, I might be able to live. But with it, I don’t think I have a chance.
I had a zoom call with a dear friend. She noticed my beard and commented on it. She loves the transformation that I am going through and it made me feel good as she knew me before I started my transition and came out as trans. She has been so supportive and I love her for that. Not too many close friends are as supportive as she is. Most don’t understand and won’t try to because they are stuck in their ways, the black and white thinking.
I went out today. I had to go to the pharmacy and pick up my meds. The damn pharmacist was an idiot as he said he couldn’t fill it then when I told him it was a 28 day, he said he could. I had to fill it today or I wouldn’t have meds for this evening and going to Tues would be terrible. I hate that I have these restrictions on my pain meds. It really sucks to be in this kind of a bind. Back and ankle have been switching off hurting today so I was glad I went out for a bit to stretch my legs. I have been in bed since then. I just can’t bear the pain because my back hurts so much. The muscle relaxants aren’t working as well as they used to. I don’t know if I have developed a tolerance to it or what. Just sucks because the cramps are so bad I can hardly stand up more than 10 minutes.
I have been trying to keep my fluid intake up because it is kind of warm these days. It has been hard because I haven’t had too much of a thirst. My bladder function is dependent on the fluid intake so I need to drink in order to go. Otherwise, I have to cath and I would prefer not to do that. I had to last night before bed because it was more than 5 hours and I wasn’t getting any urge to go despite drinking a lot. It is a catch 22 with the bladder. I can drink a lot but not have an urge or drink the same amount and get an urge. I have no idea what causes what and when. It drives me crazy.
I need to cut my fingernails. It is the one self-care thing that I absolutely loathe. I wish they didn’t grow so damn fast. Seems like I got to cut them every damn week. But I like when my nails are short. That is the only good thing about doing the deed.
About goals and feeling agitated
So I got some things done. I got my recycles in the bin. I started another bag. I showered and shaved. I did a pretty good job though I missed a spot here and there. I touched up. I shaved the sides and back of my head. It feels good to feel the baldness. It takes some work and my ankle did not like me afterwards that is for sure.
I got into a fight with my sister. She is just being ridiculous and I think I am going to stipulate that I am not going to talk to her until she gets some help. She has more issues than I do. But her germ phobia has gotten out of control. I seriously want to get her toilet seat covers because she complains every single day about something about the toilet. I don’t understand the obsession when it is your own family members. We share the same germs so I don’t get it. Someone else I can see but family? Come on. Now I am fearful of using the bathroom not only because of cathing but now if I should forget to wipe the damn toilet down after I use it. Fuck. Who the hell does that in their own home?? Fucking ridiculous!! I don’t need this stress. It is almost getting to the point where I am thinking of going somewhere else. I can’t be under this much stress just for living at home. No one should have to walk on eggshells where they live for whatever reason. Just talking about it is giving me anxiety.
I got therapy tomorrow. I cancelled today’s appointment because I just didn’t feel like going into Boston late afternoon. I would if it was my therapist but it’s not so cancel! I am not sure I will reschedule the appointment either. It is supposed to be the last one so I might just forego it.
I fucking screwed up my checking account. I spent too much (on bills) forgetting there were two being paid today so now I will be over drawn. I am screwed. I have no idea what the hell I am going to do as the fees are going to kill me. At least I got my meds and paid the money I owe to the mail order company. My doc will be calling in a script today and it won’t go through unless there is no balance.
I haven’t napped though I tried because I got a migraine around 1500. I tried to sleep but I got agitated. I took some perphenazine to try and calm down before I was bombarded with voices. They came anyways and then I was yelling with them about my sister which just made things so much worse. I know I should be in the hospital but because of my medical issues I just can’t. I am too afraid my needs won’t be met or the orders will be wrong so I will be fucked. I’ve had it happen too many times now and I get annoyed and frustrated and then want to leave but can’t because my safety is an issue or the team doesn’t feel like I am ready to leave. Then I will have to deal with the after math that my family will think it is someone’s fault I am in the hospital. They don’t understand that I have serious mental illness. My mother just thinks I need to talk to her to be “fine”. Mind you she wouldn’t understand a thing I go through no matter how many times I tried to explain it. Fuck, she still thinks I am female and tonight I have been going through horrible dysphoria because of the things on my chest. Knowing I have to lose weight to get rid of them just makes me more depressed. You would think it would be a motivator but it doesn’t work that way with depression. If I didn’t have severe depression, I might be able to get motivated. Right now I am just planning on not eating as I don’t know how else to lose. It worked last year. Only problem is that my appetite is sort of back so it is hard not to eat when I am hungry. Hence why I had burritos at 2 am the other night. I ordered my groceries so I will be getting tortillas to make my breakfast burritos to store. I hope to make a lot. I just hope my mother has enough cheese. I know she has a lot of eggs. I might have to buy a dozen as I will be using a dozen. A friend said the secret is 2 eggs per burrito that you want to make. Which makes sense as when I make one, I use two eggs. But this is all for when I have surgery and I have food for when I don’t feel like making something.
My surgeon’s NP called me today to answer the questions that I had. She explained the surgery to me and that they won’t be removing a lot of bone or anything and I won’t need a transfusion. So I was happy about that. I told her I would need home care and she said I would have to talk to the nurse manager on my case when I am inpatient as they and my surgeon arrange that. It all depends on what I need and how I am after surgery. I keep praying that I walk in the hospital and am able to walk out even if it is with a walker. I haven’t decided if I am going to wear the afo or not the day of my surgery. I think I will be okay walking without it. I will have my sister bring my bag with me later that night so it doesn’t get lost. I just plan on having a few change of clothes and my toiletry bag. And catheters. The NP said the neuro floor is mostly private rooms so that is nice. I will know when I wake up if things went okay or not. Last time things were not okay and I knew right away something was wrong but I didn’t know what as I was out of it. I just worry my CRPS foot is going to go berserk for being laid up and manipulated. I hope I don’t wake up in a flare. That will be friggin awful.