blur of days

Blur of days

Friday night I was in a flare. I didn’t get to sleep till 0600 and then I slept all day. I only went downstairs twice to pee. I’ve been living off of protein bars and pie. I mostly been drinking Powerade. Today I was just tired and tried to sleep but my damn mother wanted me up. My sister got sent up to check on me and then she bitched about my room. I wanted to change my sheets today but I was too tired. I will try tomorrow. I left a message for the pain program explaining that my electrolytes are off, making me really tired. I told her it was up to her if she wanted to keep me in the schedule for Thursday. I honestly don’t know if I will be able to keep it. I want to but my body may say no.

I wish my mother was going out tomorrow but she is not. I get to hear the fucking Christmas movies she has been watching nonstop. She hasn’t been watching her regular shows. I swear I thought we were in December and then we argued over when it is, which is next week and she said no, it is the following week. Whatever. Pisses me off.

A day of reading

A day of reading

I wanted to finish Camino Island by John Grisham today and I did it. I had problems with my Kindle since last week as they did an update and they messed up my SD card, well, not really. The update made it so the Kindle didn’t recognize the SD card so my books were just not there. They fix it but when I tried to open the book yesterday for distraction due to pain, it said that I had to remove it and then download it again. I had no idea how to do that but it brought me to the store page. I already bought the damn book so I didn’t want to buy it again. I was so frustrated, I read a non-technological book. I read Trail of Tears for about three chapters. So today I was determined to read and finish Camino Island so I didn’t have to deal with the Kindle anymore! Least for a while.

I finished it and because I couldn’t put it down, I took my night meds late. It just kept me interested. John Grisham will do that. He hypes up the book in the last few chapters. I can’t wait to read is new book, the Reckoning. He says it is different than his other books. Well, hell, Camino Island was different too! No lawyers and their real cases that involve espionage and crap like the Firm. I really loved this book. But I have four other books I have started reading and would like to finish them by the end of the year. November is half way gone and I have finished just one book. I lowered my challenge to 22 books to read this year as last year I read 20 I think. I just tried to find my challenge from last year but couldn’t. It did say I read 14 books last year so I am tied. I want to read a few more. I don’t know if I will be able to read 22 but I will try. I didn’t think I was going to be alive so I held off on reading. I really wanted to give up. But my psychiatrist didn’t allow that to happen and got my pain meds changed so that I wouldn’t give up. I am not at a dose I like but my pain is better than it was. I wish it was lower than it is right now but fuck. Until the fucking stupid CDC guidelines are removed, no pain patient can be treated humanely. I get my pain meds increased, I am above the 90 milligrams morphine equivalent and that means paperwork for the doc, who doesn’t want to do that bullshit. In a way I don’t blame him but come on, fight back. It is the only way to help patients and prevent suicide. But that is just my opinion.

I did not stay on the regimen of fluid restriction today. I had two cups of coffee and I am still kind of going. I got a shit load of energy and my mind is like going in a million directions. I feel so much better than I have in the last three fricken weeks. Maybe my salt level is back up. But that will mean my Trileptal will be decreased so this doesn’t happen again. My psychiatrist who I emailed at like 2 am with my worries (thank you painsomnia for keeping me up till 330 am!) said that she and my pcp will discuss what to do. But I think I will be lowering my mood stabilizer that I have been on for 10+ years. I hope my mood doesn’t go like a roller coaster because that just sucks. I was in and out of hospitals every 6 months. I had to. My depression was awful and my hypomania crashed me so hard. I literally wanted to die so damn bad, like worst than any pain episode I ever had. I made attempts, nothing harmful but was I remember overdosing to get rid of the pain, the psychache was unbearable. If I have to deal with that AND the physical pain, I think it will kill me. I don’t think I can bear it. Psychache is awful. The worst pain imaginable. Not even morphine can touch it. Hell, if the pain meds I was taking at the time didn’t help lower it, I doubt what I am taking now will. It is on another level. I don’t ever want to feel that shit again. Just thinking about it makes me want to die so fucking bad. There is no other med for me to try for a mood stabilizer. I tried them all. Only this one worked for me. I HATE that it is messing me up physiologically that my meds have to be played with and I will probably have to have regular blood work to monitor my sodium levels. I hate getting stuck but it is what it is, I guess.

Only thing that sucks about today is that I didn’t eat any protein, just carbs. I couldn’t help it. I was in a fuck it mood and didn’t care how much I drank or what I ate. I have some burgers in the fridge I could eat. But I would have to go downstairs and today has not been a good stair day. Better than yesterday in that my legs don’t feel weak but the up and down movement hurts my foot/ankle. And the top of my foot right now is so damn sensitive that I know the slipper is going to be painful. I kind of just want to sleep but sort of know I won’t be able to unless I eat something. I ate carbs but it was small amounts. A table talk pie, then an hour later 5 cookies. Then I tried some soup that was disgusting and only had some bread with it. Had to throw the soup away. Then a small serving of pasta with one small meatball. That has been it. My food diary for today. I drank least a half a bottle of soda and a cup of tea. Probably 40 oz of fluid, 7 oz (210 mL) more than I should have. I didn’t pee buckets today.

I cannot remember if I took 600 mg of gaba when I got settled in bed. I hate when I can’t remember if I took meds or not. I really need to have like a PRN week med box or something. My throat has been sore off and on. I hope it is because of voice changes. Throat drops have been helping it. Also have been helping the nasal congestion, which could also be causing the throat irritation. My sister said she didn’t notice any change in my voice when we talked this morning, the first time in a while. She has just been so busy with stuff. I really missed our talks. I hardly talk to my middle sister and when I do it is always with her complaining about her job or her kids. That hurts me when she talks about her kids because I know they can be a pain in the ass and I know they are adults now but sorry, you raised them because you never cared for them. You expected things from them that they didn’t learn from you or anyone else and they should have.

The one thing that I really liked about Camino Island is that the author gave some tips about writing. I will try and use them if I ever go back to writing that story I want to write. Maybe when the pain is better and this fatigue is gone and my concentration is better. I have the time. I just need to go to Starbucks and try and write. Sounds easy but it is hard. I also think I need to face the wall of the store rather than the windows because it is so damn easy to people watch and as well as see the cars go by. I get distracted by watching the cars parallel park. It is funny how many times a person will go back and forth, pull out, back in and still not get it right. I see this every time and it is my distraction from writing! I write my blog in my room but it is when I can have the brain power after a long day and can form sentences without sounding like a 2 year old.

I wish I could have more days like I did today, with energy and brain concentration to finish a book because I had the time. I usually have the time but not the energy and brain concentration because of pain and a bad night of sleeping. I had 5.5 hours with 1200 mg of Neurontin. I have no idea how this day came about. I am grateful for it as it is rare. I probably should have made my cranberry cake but I think I will Tuesday. It will be in memory of my therapist friend that gave me the recipe and who died in Sept.

Found out cause of fatigue

Had my repeat blood work and urine tests done on Thursday. My sodium level was lower than it was on Tuesday. My doc called me around 8 am but I couldn’t get the phone in time. When I called back. The transcript from my voicemail was incorrect. Anyway he sent me a message explaining what he thought I had, SIADH, syndrome of inappropriate anti diuretic hormone. It is basically my body holding onto water and peeing salt. So he said I am to reduce my fluid intake to 1L and eat salty food and protein. It has been difficult doing either as all I want to do is sleep. I made some scrambled eggs and had some juice. It tired me out when he called me again. I am just really tired. Today I had some donuts and crackers with my coffee. I only drank 2 oz and then had to lie down. I finally took a shower today so doing all that just wiped me out. I wanted to make cheeseburgers for lunch but I guess I will have them for dinner. Just told my mother and she said I’m cooking. Bitch. We haven’t been getting along past few days. She has been on my back to do shit and then yell at me for old shit. I seriously need to find a place to live. I can’t take it anymore with her. She is stressing me out. I really think it is because her sister gets on her nerves and then she takes it out on me. God forbid she should put her sister in her place. I had to laugh when the lunatic was telling me the turkey’s we bought were from Maine because my cousin doesn’t know postal codes. They are from Minnesota. I didn’t say anything. They are all a bunch of ignorant fools anyway. Also uneducated. Though the lunatic likes to brag that she was a spelling bee champ in school. She didn’t finish high school though. Only person on my mother’s side was my mother.

Foot is really hurting today and my left leg is giving me trouble. It feels like it doesn’t want to hold me up. Taking that shower was fun. I had to sit down like 3 times. Back kept cramping up. I just want to give up. I am so tired of pain and fatigue. I wish I could kill myself. I know my family would be better off without me.

Another blog by phone

I am still feeling crappy. Yesterday in was so exhausted after seeing the doc, I slept, had dinner, took my meds. And pretty much slept through the night. I woke up once to pee and take a horrible selfie. I felt like taking the shot of T then but i was too tired to be that coordinated. I had to wake up early to check to see if my niece went to school on time. I got mad at my phone for waking me up, snoozed, got mad again, and never got up. I woke up a half hour later and went downstairs. She wasn’t home so that was good. It is freezing out. I went back to my room and fell back to sleep.

I got up around an hour ago. I had messages, one was a provider letter. I read that but it was just for my urine test results. I still haven’t heard anything about my blood results so I sent a message. My sodium is down again, lower than it ever has been. No wonder I feel so crummy. My psych said to reduce my water intake (I am not reducing coffee!!) This is hard because I kind of am thirsty since she said it. I’ve just been taking sips with my meds. Figures not eating and drinking would knock it down. I asked her if we could lower the oxcarb by 300 mg and she agreed. I feel a little better today but still feel so tired. I was supposed to meet up with my barber to get my baking dish but I couldn’t be bothered. I am just too tired. I will get it next week.

So I guess I am to just sleep until my medical doc figures out what to do with me. The rest is helping my plantar fasciitis. Heel was hurting so bad last night from all the walking I did. I didn’t ice it just rolled a tennis ball under my foot while waiting for dinner to be ready. It really helps reduce the pain. I have been doing the app thing for my foot. My scores are better but not 100 %, dammit lol. The OT wants it above 80%, which they have been so that is good. I see them tomorrow. I haven’t done the stretching because I’ve been in a flare. Even yesterday while on the way home felt like my sneaker was going to rip the top of my foot apart. It was fun going around the house with two feet hurting so bad. Yikes!! I’ve been doing the heat stuff so hope she isn’t going to be a bitch. I also been doing the heel lift she wants so 2 out of 3 isn’t bad. My foot is still bothering me today. I haven’t had this bad of a flare in a while. Hope it settles down.

Last night some idiot called with a restricted number. I thought it might be the doctor’s office so answered. It was some document recovery bullshit. They had a document I had to sign and would I be available between such and such hours. I was yes-ing them to death. Bastards never came. Assholes. I get these calls at least twice a year and it is always we are taking you to court and we can’t give you the information, you need to call the 800 number. Okay. Scam bastards.

I am not sure where my blog writing is going. If I feel up to it, I will write. Otherwise I won’t. I just don’t have the energy. Oh, and today is day 42 of my transition. I will write a separate post for that, though it will be just a paragraph as not much has changed.