Tag: chronic illness

Saturday Blog 20062020

by Midnight Demon, posted in blogging, Chronic pain, chronic physical pain, CRPS, depression, mood disorders

Saturday Blog 20062020

I just woke up about a half hour ago. I finished off the second piece of steak that I made the other night. It was good but I will never buy a marinated steak again. It takes too blah and definitely needed steak sauce to eat it. I enjoyed it none the less. I made iced tea and had it with my meal. It started to get hot in the kitchen so after I finished, I retreated back to my room where it is much cooler. I need to shower today and probably will after I write this blog.

Last night I was journaling and wrote some thoughts about my therapist and how she has been treating me. I feel like she wants me to dump her for some reason. I think that is what she wants. I see her on Monday and will discuss this with her. I feel it is important because she doesn’t want to have contact outside of therapy and that bothers me. I know therapy is the place to talk about stuff but sometimes you need some contact outside of therapy to know you are doing okay or at least to know there is someone who cares. I am feeling like she doesn’t care about me and thus wants me to dump her. I don’t know how real this is and I won’t until I talk to her on Monday. But it was good getting the feelings out on paper.

I need to shave. I think I will do that before I shower. I also need to shave my under arms. It grows like a weed in there. Seems like I shave it and then I have to do it again in a week or so. I hate all this hair that I am having. I broke out with cystic acne on my chest and upper back. Hurts like hell. I don’t know what to do for it. I might have to ask my doctor for something because the OTC stuff isn’t helping this kind of acne. I just hope I don’t have to see a dermatologist to get some relief. It could be a while before I can see someone. I just hope my back doesn’t act up while I am shaving. Lately if I stand more than a few minutes, it cramps up on me and I am unable to do anything until I sit down for a few minutes or sometimes more than a few. I can’t wait till I start PT so I can get the kinks out so I can live my life again without pain in my back. I really hope the PT can help me with this. I know it isn’t going to be an overnight thing but if it helps, it helps.

listening to Taylor Swift

by Midnight Demon, posted in blogging, Chronic pain, chronic physical pain, CRPS, depression, mood disorders

Listening to Taylor Swift

I decided to listen to Taylor because it has been a while since I listened to her music. I really love listening to her. I am listening to all her music that does not include her recent album. Her lover album is so different from her earlier music that I couldn’t put it in the playlist. It is not an album I like.

I spent most of the day sleeping. I again had an early morning awakening and couldn’t go back to sleep. I was tired most of the day. I went to the pharmacy to pick up my meds. Seems I am there every other day for one prescription or another. I hate that I am on so many meds. My antidepressant med I take two pills to give me a dose that helps me. I am surprised that it hasn’t made me nauseous yet. Usually they make me sick after a few months. But I haven’t had too much stomach problems yet. I am glad because being sick all the time is no way to be.

I have decided that I am not going to text my therapist about anything anymore. She is just not receptive to it and can careless about how my particular day is going. She doesn’t want me to become dependent on her yet she wants me to be open with her but only when we meet. It is still difficult to talk via the computer and I blank out. I try to say something, anything and nothing happens. It is like the thoughts are just sucked out of my brain. I hate that I am not talkative. We have been having a later time in the day and it has helped with me being awake during sessions. My brain still hasn’t woken up though enough to talk for 45 mins. I am sure we will work it out but I am so tired of having silences during our time.

I need to shave with my razor as my electric razor doesn’t seem to get that close as I would like. I also need to trim my sideburns. I completely messed up my mustache when I was trying to trim it so I had to shave it off. I hated to do it but the damn trimmer kind of did it for me. I think I need to try with a razor next time. I want to get it in a thin line but I am not sure I can do it. I will have to play with it. I want to get it like my uncle’s mustache was. His was always neatly trimmed. I really miss him. He probably would not accept me as a guy but I know he would still love me. He was a good man.

I am going to try and shower today. I don’t know if I will be successful as I am really tired and have no energy. I know the shower will suck whatever energy I have. I hate that it takes so much effort to wash up. I miss the days when a shower was refreshing and not a hassle. I envy my sister and nephew who can take a shower without a problem. I have sort of decided that I would take a selfie if I showered to show off my shower head hair. It is usually all messy and stuff and looks kind of cool. I don’t remember the last time I took a shower so it has been a while. If I shower today it will be the last time I will have long hair on top. I made an appointment with my barber for next week to have my haircut. I want the top short again. I can’t stand it being long anymore.

weird happenings

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders

Weird happenings

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 need a haircut!

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders

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.