Memorial Day 2020
I had a good day, though I am now feeling sick again. My sister made BBQ and it was so good. We finished with brownies and ice cream. My head feels like it weighs a ton and hurts so bad like it did last night. I don’t want the surgery but I know that the headaches aren’t going to stop unless I have it. On top of this, I have a UTI that is hurting so bad. I am throwing blood clots and those hurt so bad. I am taking AZO pills (for urinary pain and urgency) but I still hurt, though not as much. I forgot to take the pill this morning so I am hurting from missing a dose. I plan on taking them until I am on antibiotics, which won’t be until later this week. I let the NP know I was having symptoms and will be dropping off a specimen tomorrow. I plan on going after therapy. I just hope the bus comes within the half hour. I need to check the schedule as it has been months since I last took the bus.
I cleared a path for my brother in law to get to the AC as the rest of the week is supposed to be hot. I hate having to lose fresh air but I rather be cold than sweating. Clearing the path cost me so many spoons. I am so exhausted. All I did was move stuff from one part of my room to another part. I was able to free my waste basket. Now I just need to empty it so I can use it properly. It is currently holding stuff that shouldn’t be.
I want to shower but I don’t think it will happen. I am way too tired. I just don’t have the energy to. I will definitely do it tomorrow morning when I have some energy. Morning seem to be the best time to do some things. I don’t know why as I am not a morning person but that is when my energy and pain levels are best.
I have been feeling palpitations while I was clearing a path. I hate that I am still not 100%. And there is no way for me to be 100% as I will be having another surgery that is bound to sap my energy some more. It really is going to set me back. I don’t know what I am going to do about it. I think I am going to get iron pills so I can build up my iron in my blood. The testosterone builds up too but this might help more so. I will get the slow release kind so that it is less constipating. I should get my blood drawn but it won’t be accurate because I am still recovering from surgery.
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.