Tag: back surgery

Saturday Blog 30052020

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

Saturday Blog 30052020

Last few days have been rough. I haven’t been feeling well, emotionally or physically. Things just seem to be out of my grasp in handling them. I feel so low and the recent events of out west with George Floyd have hurt so much. I can only imagine the pain his family must be going through. I am glad the officer got arrested but more needs to be done. This cannot continue to happen but I know that it will. There are too many racists cops out there and people as well.

My ankle has been hurting me the past few days. It has been driving me up a fricken wall. Nothing I do helps it. I just been taking neurontin because the pain meds haven’t been touching it. Sucks when nothing helps your pain. It has been bringing me down. My back has also been bothering me with cramping up a storm. I have to take Zanaflex, which makes me sleepy. I have slept all day today because I was so tired. I have been waking up in the middle of the night because I had to pee or because of a weird dream. It gets so tiring. I have to cath most times because the urine urge isn’t strong enough. That has been irritating me, both physically and mentally. I know I still have the UTI. The NP called saying she had to switch antibiotics because it wasn’t effective. Now I am on the right one I hope to feel better soon. I feel so washed up it’s not funny. I wish there was a way to make things stop hurting. There is but no one wants me to do it.

I reached out to a friend the other night when I was feeling low. We have only just met on Twitter and been talking the past few months. She is a good person to talk to. She is almost like a shrink with her questions, LOL. I appreciate her though. It helps to talk to someone who gets it. She encouraged me to reach out to my other friends and I did. It was helpful.

I bought a new electric toothbrush. I feel like I would brush my teeth better with an electric one than a manual. It was on sale on Amazon for $20 so wasn’t bad. I just got to bring it downstairs so I can use it. It needs to be charged though. I think there is enough power in it for one brush though. I am dying to use it to see how I like it. It is a sonic toothbrush. I hope I do like it.

I wrote a letter to my therapist the other night about how things have been going. I think she read it. She didn’t respond to it, but then I wasn’t expecting a response. I told her about the difficulty of meeting virtually. I felt that was important for her to know as I am often so damn quiet because my thoughts are blank. I am not really thinking of anything, I just blank out. I don’t know if it is just the technology or what but it is so hard to focus on things when on the computer. Even when I am blogging I space out. But then I can always go to the internet to pass time. I can’t do that when you are talking to someone. That is just rude. I think there will be a way to work it out virtually but it will take some doing. I think she needs to ask more questions other than “what is going?”

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.

Memorial Day 2020

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

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.

life worth living, the book

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

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.