Lady A just came out with a new song called Champagne night and I love this jam. It is so good. They played it live last night and it was awesome. I watched it for a little bit until I had to go to the bathroom for a million times. I have no idea what was wrong with my bladder and bowels last night but all I did was go. I think I have a UTI and for the bowels, I have no clue what was going on. It was so annoying.
The night before I posted a tweet that said what I needed to end my life and that things weren’t that much different than they were 25 years ago. I am reading Marsha Linehan’s memoir and found that between the ages of 18-20 we went through our own version of “hell” and while she became a famous psychologist, I am still suffering and wanting to end my life. I texted my therapist this tweet and I got met with a need to go to the hospital if I am not safe and if I am having thoughts than I need to call a hotline. Apparently telling your therapist these things is not an option. I am kind of mad but I am so used to people turning away when I am suicidal that at this point it is just expected. Except on Twitter where at least three people tweeted at me if I wanted to talk, I could talk to them. One of them DM’d me so we chatted for a bit until I fell asleep. I find this kind of support preferable to calling a hotline or going to the emergency room.
I had to restart Word as it needed to update. I was getting annoyed as I wanted to write stuff but I kept getting delayed. I should have just got the pad of paper and a pen and wrote. I think that is what I am going to do for the 200 word piece I want to write. It is still percolating in my brain. I keep thinking about it so it is close to being written soon. It takes me a while to write what I want, especially these days where one day melts into another. I want to stress that in my writing because I think it is important when you have a disability and lose track of time in this pandemic. I mostly just stay in my room because I am scared my visit to the pharmacy might have caused me to be exposed so I don’t want to expose my mother or sister or nephew. I just isolate and stay away from my family.
I had to go to the pharmacy tonight because I am almost out of the AZO pills for the UTI I have. I had to get some more and while I was out, I got a thing of Oreo ice cream because why not? It was not available in the grocery store when I went last but it was available in the pharmacy. I will take it! At six bucks a carton. Yikes, highway robbery though. I think it is worth it. You are paying for the convenience of the item but the price is about the same in the grocery store. I hope I will be able to buy groceries next week. I need some things again. I still have plenty of cereal but I want meat and fish. I was sad that they took away my beer battered fish. I will have to get it in the store now. I need to go to the store sometime next week. Maybe I can get my brother in law to take me. I just need a few items. My cousin was to take my yesterday but he “got better things to do” basically. I didn’t feel like going out yesterday anyways. I didn’t sleep well and I was really tired. I didn’t sleep last night either. Next door neighbor’s car had a squeaky belt so it woke me up at 0130. I couldn’t go back to sleep because I got a bad headache. I slept like every two hours. I finally gave up and then after breakfast, took a three hour nap. Just hope I can sleep tonight. Last night was difficult because some asshole decided to set off fireworks at 2330! WTF it isn’t even June yet! I hate assholes.
Writing that stopped
I started writing something that I wished to submit somewhere. It had to be 200 words, which seemed easy enough. However, finding the 200 words in a coherent manner proved to be elusive. I might scrap what I wrote and start over. I have the title though, which I will keep.
My voice (writing) has been shaky the past few days. I just haven’t been able to find words. I don’t really know why. I have been really tired the past few days as I have been resting my back. It has helped decrease the spasms I have been experiencing. I guess I really needed to rest. I still am feeling exhausted despite the day time napping I have been doing. I hardly talk to no one during the day. The only time I get to really talk to someone is my therapist for 45 minutes but even then that has been hard to do. There are so much non talking during that time and I know it annoys my therapist when I don’t talk. I just don’t have much to say.
The pharmacy hasn’t filled my steroid prescription because it needs clarification from the doctor. I called the office today to tell them. I figure this way it would speed things along but the prescription still isn’t ready. I probably won’t get it until Tues as Monday is a holiday. Shit I just remembered that. Oh well, it is out of my hands.
It is really warm today. My room is 80 degrees and it is 82 outside. I hate the heat. I hope it cools off when the sun goes down. I have a family zoom meeting today. I hope my bladder settles down. I’ve been having urgency urinating the past few hours. I put on a tank top because it is lighter than a t-shirt. Saves me from accidently leaving my room naked. I long for the day where I can be bare chested and not have to wear a t-shirt or tank top.
My nephew made dinner tonight. He made a garlic chicken penne. It was good but my stomach doesn’t like garlic. I am hurting big time right now. I took some antacids to help quiet it down. Gastritis pain is not really worth it but I was hungry.
Disturbed sleep and back pain
I woke up around 6 am with back pain. I had to pee and getting up was so difficult when it hurts to move. After I used the bathroom, I sent a message to my pcp about seeing if he would increase the dose of my pain meds. I had enough and if he doesn’t then he doesn’t. I asked and it will be the last time I do ask for an increase. I told him I have arachnoiditis, a painful nerve condition that could be causing all this back pain. I haven’t gotten a response yet.
I have been feeling pretty sick most of the day. My head hurts and I am really tired because of the disrupted sleep caused by pain. I had woken up at midnight to pee but was able to get back to sleep right away. It is cold in my room and I love it. I think, though, it is why my back keeps flaring up. The chill in the air might be causing spasms I am not aware of. But I will take the coldness over the warm. I am under blankets so I am nice and toasty. I love being under blankets when it is cold out. Reminds me of my childhood as I didn’t have a radiator in my room. I just had a lot of blankets on top of me to stay warm.
My hair is getting so long. I think barbershops are going to open next week so I might be able to get a haircut. I hope so. I can’t stand my hair. I got to text my barber and see when he will be opening his shop. I can’t wait to get a bald fade again.
My left foot (CRPS) is a block of ice right now so I just put on thermal socks. I hate it when my foot gets that cold. It is so fricken painful, like having your foot in ice water. Then when it warms up, it burns so I get no relief. I hate nerve pain more than physical pain. Least with physical pain, I can try and control it but nerve pain doesn’t have that same sense of control because nerve pain medications aren’t that precise.
Tomorrow I have a meeting with my neurosurgeon. I will find out what he plans on doing for me to relieve the headaches and head pressure. My vision has returned to normal so I am grateful for that. It was getting me down that I couldn’t read because my vision was all blurry. Hope it stays normal.
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.