Appointment with neurosurgeon
I took a shower today because I wanted to get the loose hairs from my haircut out of my head. I also didn’t want to stink. It was hard because I was exhausted and the whole process of showering made me more tired. I couldn’t nap though so I just rested in bed before I had to leave for my appointment.
I was thrilled my surgeon said I didn’t have to have another surgery for the fluid. He is going to keep an eye on me and my white count. I was to have bloods done today but the lab was closed so I will have to go tomorrow or Friday. Depends on what my energy levels are tomorrow. I am still exhausted so I hope that I can sleep well tonight. I am to contact him should something else arises. I am cleared for PT so I will be making my Ride appointment tomorrow for the appointments that I have. I am so glad I can start PT again. I am so deconditioned and even he said that I would be as I haven’t done much since surgery. This complication has wrecked my recovery.
Right now I am really tired and want to go to sleep but it is too early. I go to bed now I will wake up around midnight and then be up for a few hours, totally throwing off my sleep more than it already is. I will wait till my meds kick in some and I am totally brain dead. I also got to keep an eye on my bladder as it hasn’t been functioning the way I would like it lately. I am back to voiding on my own but I don’t know how long that will last. I haven’t felt like I have an empty bladder when I do void so I probably will need to cath before going to bed. Back is killing me so when I am finished blogging I am going to lay down and just read for a bit. I haven’t read since Friday. I wanted to finished the Linehan book this weekend but my brain had other plans (do nothing apparently!) I want to start the Dante Club by Matthew Pearl. It seems like a good book to read. I have read his other books and like his style of writing.
I goofed on my Powerade order. I accidently ordered the “zero” kind of white cherry. It has sucralose in it which I do not like. It is drinkable but I rather have sugar in my drinks rather than the fake kind. I have to be careful when I order more next time. I had dinner and it was a good piece of steak that I ate. Why am I still hungry?? I might make a burger.
All day my left leg has been hurting me. The only time it didn’t hurt was when I was meeting with the surgeon. Damn thing. I don’t know why it is angry today. But my back is killing me as well. I hate that I am in so much pain. Hope that my night meds help ease some of the discomfort. Surprisingly, my CRPS ankle/foot has been behaving. That is the weirdest thing that has been going on the past few weeks. I don’t know if it is because something else is going on with me or what but I will take the pain free days. Just hope I haven’t spoken too soon. That will suck.
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.
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!
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.