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.
I need a haircut!
I need a haircut. My hair is getting so long and I don’t like it at all. The top keeps sticking up, looking like a mop. My barber said there will be some changes to the shop. He will have appointments only, no more walk ins. This is to reduce the number of people in the shop. He hopes to implement this next week. I cannot wait for to see him again. I really miss him. He is such a good guy.
I had my appointment with my therapist the other day. She wants me to join a DBT group to help the intense feelings I get, particularly the suicidal feelings. I said I would be for some of it as I don’t believe in the whole thing. She said that was fine as long as I tried. I don’t know how this is going to be around my surgery but we’ll see. I don’t know how fast this will be. Everything is virtual so we’ll see.
Been thinking of writing my therapist a letter. I am not sure what to write but I know there is some things I want to communicate with her that I can’t seem to do in session. I am hesitant to write it for fear she won’t read it and my words will be wasted. It has happened before. I just don’t know how to word what I want to say. I want to tell her that this virtual thing isn’t working out as I am finding it difficult to talk. I am sure she has noticed but she tends to believe that I don’t want to talk, period. That isn’t the case. I just blank out where nothing is on my mind and I can’t seem to think of anything to say. Maybe she can ask questions and that will help break the ice, so to speak. I don’t know what else to do. Therapy is so hard and she is a real hard ass.
I am out of my breakthrough meds so I don’t know what I am going to do when pain hits. My doc hasn’t called in a refill I requested on Tues. I sent another request but haven’t gotten a response. I even sent a message asking if they have received it. No response from that either. I feel so bad that this has happened. My doc is usually good about prescriptions. I am sure there is some mess up with the computer. It is the only explanation.
The UTI symptoms have not gone away. I am still getting strong urges to pee. Sometimes I make it to the bathroom, other times I dribble. I hate when I dribble. I still don’t have complete control when I have an infection. When I don’t have an infection, I need ransom money to get the urine out. It is terrible. This is when I have to cath. I hate it. Makes me feel so disabled. I don’t talk about this in therapy because I feel like my therapist isn’t interested in what I have to say about it. There are a lot of stuff I don’t feel comfortable talking about with my nerve injury. My previous therapist I could talk to about it and it was validating. Lately I have been feeling like I don’t want therapy anymore. I just don’t get the point when nothing changes. I still feel the same way about things. I try to implement skills that I have learned but it is hard in the moment to do so. I just feel like I am wasting my therapist’s time. It is so damn difficult to open up to her at times. I don’t know if it is me or her. I know she is a good therapist but at the same time I am starting to question whether she is right for me. I have been seeing her for almost a year. A long time but also been through a lot.
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.