3500 blog post
This is my 3500th blog post. I have been blogging since 2012, the year I got disabled. It was a tough year and I was depressed and suicidal most of the time. I had a lot of time on my hands and so I think writing about how I was feeling helped to get stuff out of my head. This blog has been a lifesaver for me. I don’t know what I would do without it.
Yesterday was a really challenging day. I had therapy in the morning. It was stressful. We talked about things that were hard to talk about. She is good at keeping me on point rather than going off on a tangent. I told her I would work on self-care and brushing my teeth/showering. I have been bad at doing these things. I don’t like brushing my teeth but I know it has to happen. I have been showering at least once a week but sometimes I can go 10 days without a shower. I need to work on clearing my bed for the week as I have nothing scheduled the rest of the week. It would be good to change my sheets.
After therapy, I had an hour before I had to leave to get my 2nd vaccine shot. I took public transportation to the hospital and back. I was seen really quickly at the vaccine clinic. I was in and out in twenty minutes. I then went to the square and got a caramel macchiato. I had a half hour before the bus was to come so I just sat on a bench and drank it. It was peaceful at the station. Not too many people were there. I was already feeling pretty tired. I brought a Powerade bottle with me to drink so I would stay hydrated. PT was torture. She had me do one of the machine and within a minute or two, my CRPS ankle flared up. I went as slow as I could possibly go. I didn’t care. I was exhausted and just wanted my bed. Afterwards she worked on my legs to get the knots out. She accidently put too much pressure on my nerve injured thigh and I screamed in pain. She avoided the area the rest of the session. My legs felt better but I got up too quick and got dizzy. She had me drink some water and rest. I then realized I had not eaten all day. I ordered Kung Pao chicken on the way home from PT. It was so good. I really love this dish.
Today I have been tired because I was up in the middle of the night again. I woke up at 1 to pee and had trouble getting back to sleep. It could be a side effect of the vaccine as well but I am going for my long day yesterday and being up in the middle of the night as a reason why I am so exhausted today.
I don’t know if I will listen to the entire game but I am going to listen to the first couple of innings. They are facing the Braves, which has been on a hot streak. We have been on a losing streak so will be fun to see what happens. I love baseball so much. I am keeping track of games lost/won again on Twitter. Right now their record is 29-19 and we are in first place.
I got a craving for donuts so I ordered them. Now I am happy because I haven’t had donuts in more than a year since the pandemic started. I am going to try and take my night meds around 7 but it might be earlier. I am just so damn tired but if I go to bed now, I most certainly will wake up before midnight and be up all night.
Since Wed’s appointment I have been feeling exhausted. It was a long test and not much came from it except that the doctor switched alpha blockers. I see the NP in a month to see how things are going and if I am voiding. She was very worried about me not going for 18 hours and had me promise to cath if it should happen again. My legs have been sore the past two days and it has been hard to walk. I need to take a shower and haven’t had the energy to. I also need to shave. I got my haircut on Wed and have not taken any selfies because my hair isn’t spiked like I want it. Yesterday I was supposed to get the vaccine but I was just hurting too much. I didn’t sleep because of shoulder pain and my legs were horrible. I just wanted to rest in my bed. Today I had groceries delivered and that took a lot out of me. I was able to take a nap. My appetite has been low the past few days. I have been eating but very little. I had my biscuits with my coffee today and just now had a bowl of cereal. I think that is all I am going to have today.
My neck has been awful all week. I canceled PT yesterday because I hurt too much with my legs. I hated doing it but walking hurt so much yesterday. I am in a lousy mood. Surgery didn’t help me like I thought it did and that is really hard to take. I had a hard time emptying my bladder. The stress of the test left me feeling really tired. I sent a message to my uro to find out if it is the same thing that is wrong, that the bladder neck muscles aren’t working right. I told her I was thinking about botox. I just wanted to research it a little before I said yes.
I had groceries delivered today and then when they were in my room, I just collapsed. I was able to nap for a couple of hours. I need to shave and shower today but I don’t think it is going to happen. My legs just feel really sore. Even though I just woke up from that nap, I feel another sleep is needed. So I probably will be taking a nap before I go to bed for sleep. I don’t care. I am just so bloody exhausted I can barely keep my eyes open. My mother just called to say dinner is ready. I am not hungry so will pass. I just want to lay down and sleep.
A blog about being blah
I am feeling really depressed and blah today. I woke up late, around 1330. My neck has been hurting me since last night. I put some heat on it while I was having my coffee. It is really warm out today so I was sweating with the heat. I didn’t feel like going out. I don’t feel like doing anything today. I should shower but I don’t even have the energy for that. I still need to do my meds for the week. I’ll do that after I write this blog.
I put in my appointments for the month in my calendar. They are mostly PT appointments. I have a few sessions left and then I am done. She has done as much as she can do for me. I am glad I am not waking up in pain anymore with my shoulder anyway.
“rather die than live in fear”. I got this quote from somewhere, probably Twitter and it has been resonating with me the last few days. It has increased my suicidality. I would rather die than live in fear with my family. The resentment and disrespect is sometimes too much for me. The gender dysphoria sets in and I wonder why I am the way I am. I question who I am and wonder if it is worth it. I just feel so worthless at times that I wonder if it would be better if I was dead.
I see my therapist tomorrow and will be bringing this up to her. I don’t know if we are ever going to start work on the pain workbook or not. Seems to be always something in the way of us getting into it. I am having some serious pain right now in my leg. My ankle and shin hurt so bad. It is getting hard to write. I hate CRPS so much. All it does is take, take, take. I can’t remember the last time I had a day without pain. Now I got the shoulder and neck thing going on for god knows how long. Just something else I got to live with. Been living with this pain for five months now. I think it can be called chronic pain. Just add it to my list of why I should die.
My neck is acting up again. I just took some Zanaflex to calm it down. All my muscles are tense in my shoulder and neck. Stretching my neck from side to side is still hard to do. It hurts so much. I have been trying to keep off my phone so I don’t aggravate it further but it has been hard. I don’t know why the neck has flared up. It takes so much to calm it down and I don’t see my PT till later this week. I have been working really hard with the exercises and stretching that have been given to me. I just can’t seem to calm down the tension in my neck and shoulders. The pain is so bad it depresses me every time because I can’t do much when I hurt. All I do is lay down and stay as still as possible.
I woke up this morning with a strong urge to pee around 745 so got up and did my business. I was thankful no one was in the bathroom because I don’t think I would have been able to hold it. I came back to my room and took my morning meds. I then went to lay down to go back to sleep when I got a sneeze attack. I must have sneezed like 10 times in a row. It really woke me up so I decided to have coffee. I had my belVita biscuits and my mother called them cookies. I don’t care. I have been eating them nearly every day for weeks now. I have bought different flavors and really love the Golden Oat. They keep me full for a couple of hours before lunch anyway.
Yesterday I didn’t want to do a damn thing but that was not meant to be. I had an early morning bowel accident which caused me to have to shower to get clean. I felt really bad but I just couldn’t hold it as it was such soft stool. I then was in charge of making sure my mother took her walks around the house. She didn’t no matter how much I threatened her. She had her sewing to do and that is all she did.
Today my mother is expecting the home RN and PT to come. I will stay so I know what she hears is what is said. Her blood pressure was on the low side. I hope it improves by the time the nurse gets here. I really don’t want to have her in the hospital again.
I can’t wait to get my haircut next week. The top of my head of hair is so uneven. I want to have it short and spikey. I am hoping to get my haircut after all my appointments next week. I have to go for urodynamic testing and then go for an EKG. I just messaged my psychiatrist to make sure it is ordered so there won’t be a problem. I don’t see it on my upcoming procedures.
I still have not gotten my stimulus money. I wonder if I will get it next week with my SSD payment. I can finally order my groceries from Stop and Shop. Still haven’t decided if I am going to get a new mattress or not. I bought a new foam topper and it works wonderfully. It stays on the bed like it is supposed to.
I am so tired today. All I did was have coffee. I am in pain so that is probably why. My back started hurting while I was taking my mother’s blood pressure. I can’t stand hunched over for too long. My leg is bothering right now. Damn hamstring. I wish I could find a stretch that worked for the pain. I have a couple of tennis balls under my leg right now and that seems to be helping the pain some. I can’t roll it because of the foam topper. I am just glad I have some relief. It is cold today and windy so my room is like 66 degrees. I should shut off the ceiling fan…