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.
I have done nothing because there has been nothing to do without complete exhaustion. I made dinner and I am so tired it isn’t funny. I just heated some ribs and mashed potatoes then cleaned up afterwards so I wouldn’t hear the tyrant bitch. It was enough to get me worked up and feel worse than I was. I don’t know why I am so damn tired all the time. I don’t know if it is because my blood counts are still low. I just feel like crap.
I wrote an email to a friend and tried reading my book. It has been hard reading Marsha Linehan’s book as there are so many parallels between her illness and my own. The feelings are palpable and it stirs up stuff. She talked about finding god and being transformed when she found him. I can understand that. Lots of people do when their faith is strong enough or so I hear. I am glad she found him so she could move on with the demons of her life and work on “getting people out of hell”. She writes this so many times. I read some of the reviews for the book and there was a lot of complaints about this. I don’t mind it though as it is her life’s work and her book. She can write it as many times as she wants. It is how she developed a brilliant therapy that helped saved millions of lives.
Today has been a cool day so I have the AC off. I don’t remember what the weather is going to be like tomorrow. There was talk of thunderstorms but I haven’t seen the latest reports about this. It might have changed course or something. I will check it before bed. I am just worried about rain coming through the AC vent as it is open because my brother in law broke it. I have tape on it but that won’t hold much if the rain is heavy. It is windy out but not gusty.
I’ve been listening to Terri Clark and Mary Chapin Carpenter. I haven’t been on social media much. It is too upsetting for me right now. I have been trying to just rest like I should be with this stupid fluid build up. I don’t know when I will be having surgery. I am guessing sometime next week or the week after. I am kind of scared of the recovery as this first time was a doozy. It has been 10 weeks since my surgery and I still feel so tired and exhausted with doing anything. I just want to nap all the time. Yesterday I slept most of the day. I can’t stand how my stamina is so low. I am not sure what will increase it. I guess I need to do more but I don’t want the leak to get worse. I am on my last day of steroids. I hope the headaches don’t come back when I completely stop them. I don’t like the headaches as they just make me tired.
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.