Saturday Blog 08022020
I didn’t get much sleep last night. I went to bed around 5 and then woke up around 0845 to pee and I have been up since. I got my haircut but I have yet to make my dirty gravy that I want to make. This is in preparation of my upcoming surgery. I want to have some gravy so that I can make some quick meals when I need them. I plan on making some burritos but I got to get bags that are freezer quality. I have to buy the bags my next pay period.
I was telling a writing friend about the trouble I am having with this essay I’ve been working with. She said to start over. That isn’t a bad idea. Or I could just cut out the parts that are gloomy. But I feel that if I am able to write what keeps me here then the bad stuff will be minimized and counteracted. Not sure if that is the right word or not but works for now.
I am so damn tired. I wanted to take another shower as I had my haircut but I am hurting too much. Ankle and foot are smarting big time and I know standing for 10 minutes isn’t going to help matters. I really don’t want another painsomnia episode. I also had some delicious mac and cheese my sister made. I know that is making me tired as well. I hope I can sleep at a decent hour and not wake up in the middle of the night to pee. That is the sucky part of having a bladder that is dysfunctional. I hate that I am having to empty every couple of hours because I get the urge to go. I am not sure if this is “overactive” or not. My uro wants me to be on a medicine to calm the bladder so that it isn’t crazy but I still found myself going every 2-3 hours which drives me crazy. I am going to talk to her about it when I see her on Wed. I just hope the appointment doesn’t go longer than planned because I rescheduled my psychopharm appointment to an earlier time that day. The uro nearly always runs late. But she is thorough so it is definitely worth waiting. But if it comes to an hour late and I still haven’t been seen, I am rescheduling because I don’t want to miss my psychopharm appointment.
I just got an inkling to call my father as I haven’t heard from him in a while. He has been dead nearly four years now. I miss him, something I never thought would happen. I was not happy with him at all. He abused me so severely I am still in therapy for it. The new therapist hasn’t heard his tales. I will bring it up sometime during next session. I am sure she will “love” him.
News broken and…
I broke the news about my having surgery and my mother burst into tears for god knows what reason. Even after her breakdown she didn’t know why she cried. She obviously doesn’t want me to have surgery. She doesn’t understand and my youngest sister tried to get her to. I don’t know how much of it was because she couldn’t hear or just couldn’t tolerate talking about it. My middle sister was adamant I was being selfish because I didn’t think of my aftercare. She doesn’t want to take care of me so I will have to have home services if I need it. Fuck. So will have to set those up as well as meal plan as I will be on my own and as much as I like Ensure, I really don’t want to be on a liquid diet while I recover. I will have to make sure I order some. I already have a $200 grocery tab going. Not sure I will have $40 for a case through Amazon.
I just googled the surgery and it is approximately four hours or more long. Fricken crazy. I wonder if I will have to shave my back. I got a lot of hair back there. The testosterone has made me so damn hairy. I hope I will be okay with everything. My sister was thinking of all the disasters that could happen. Thanks but I am already imagining walking in the hospital and being wheeled out. I have no idea what will happen if that happens. I might have to go to a rehab hospital for a bit but the house is not handicap equip and unless they give out loans to make the house accessible, I am not sure what would happen. Granted we are adding rooms to the house so I could take one but I would need an elevator to get to the second floor or some kind of lift.
I went to Starbucks today to try and write an essay and it didn’t happen. I got into watching traffic and social media. I should not turn on the WIFI but I did and well, 145 words got written. That was it. On the way home my foot acted up and two hours later I got the worse pain spasms ever. I was screaming they were so fricken painful. I just wanted to die. The voices started to ramp up during this time so in between screams I am hearing orders to kill myself. I couldn’t move so I just sat there being tormented. Once the pain meds kicked in, I was able to go downstairs for dinner. The voices are still murmuring in the background but not as troublesome. God they were so fricken loud. One of them is still trying to break through but I am ignoring him. He is eventually going to get pissed at me and I hope not because that will mean I have to listen to him and that will mean hospitalization. I wish I could get hospitalized without my family knowing where I will be going. Sucks I have to tell my mother where I am all the fricken time. I am 44 I think I can handle shit on my own like I have since I was 15.
Today is the official day I got diagnosed with cauda equina syndrome. You can google it or check out my blogs about it if you want. I am not going to say more about it. Because my psychiatrist and I first met some time this month, I think today is perfect to pick for our anniversary. I just sent her an email with my thoughts on it. Figures I would have a flare on my left ankle/foot on this day just to spook me. Having this kind of pain, numbness, and loss of function is what sent me to the ER, on my psych’s urging. She knew then something was terribly wrong and then when the residents called her, she told me at 4 am that I had this horrible condition. I still am and never will be 100% recovered. This is why I am hoping against hope that my surgery doesn’t have complications and that I can walk out the door instead of being wheeled.
Walking too much
Yesterday was my first double header since being sick. I am not 100% well so I was really tired when I got to my second appointment. I am glad the two buildings were close to one another but there was still some walking involved. Therapy was a little rough. I am experiencing so much feeling and she doesn’t put up with much in between stuff. She likes to stay on topic and squeeze shit out of me when I don’t want to. I have hid from my feelings for a long time so this is completely new to me, to have a therapist that actually wants to work on feelings and stuff. I talked briefly about today’s appointment with her as I didn’t want to be stepping on people’s toes. Everything is a gray area all of a sudden. I feel like I am seeing psych sub specialists for things that I used to see one person for. Yesterday’s events exhausted me and what the cold didn’t do was make me exhausted enough to sleep. My nose kept running and I felt like I had a leaky faucet for a nose most of the night. Same tonight. Then my bladder kept me up with its constant shit of having to be emptied. I also been having loose stool so I been trying to void on my own rather than use the catheter. It’s the only way for me to go.
Today’s appointment talked about boundaries and for the first time I felt like I wasn’t asking too much by wanting privacy in the bathroom. It has been giving me such anxiety so we creatively came up with ways to say I am in here so my mother doesn’t barge her way in. One is fixing the lock on the door. It has been broken for so long I honestly don’t know if it can be fixed. It will require YouTube and google or I might have to get another mechanism or part to have a working lock on the door. Most people would know someone is in the bathroom and respect their privacy however those rules don’t belong with my mother, least when they concern me. Going to try these things first before actually having to talk to my mother which isn’t going to fly with her.
Yesterday I had sent my psych an article about trans youth and suicide. She recognized the name as one of the residents where she used to work. She then asked me if I thought about coming out sooner would have changed the course of things. It got me thinking and I am still thinking about things because I realized last night, despite twenty-five years passing, I am still suicidal and I am pretty much in the same boat as I was emotionally as I was then that I am now. What is going to keep me here is what is going to make the difference. I sent my therapist a text last night of the question and she responded this morning that it was a good question. Last night I started jotting things down of what has happened and if I do have something this time around that I didn’t have back then. I am not sure I will still be around. My mind has been going and planning this for a while and maybe this time I will succeed. But I think I need to know if my therapist cares if I am to continue to be here. I think that is why I am getting angry with her is because the voices have been saying a lot of stuff about her and I just been listening to them. My messages aren’t being answered when I send them. She doesn’t respond to my texts usually. If I am supposed to work with her, I need to know she gives a shit, that I am just not someone to just fill a spot because she has an opening.
If I sleep tonight, it will be a miracle. Ankle was already hurting before I left the house. My legs are killing me from the walking around the Government Center area I was in today. It would have not been a big deal if I was “normal.” Being disabled really sucked. But I am glad I saw the psychologist today. I feel better knowing I was validated.
Not a good day
I woke up around 2 am to pee. I was up for a bit and felt like I should see my therapist today so sent a message to her. At 2 am. She sent me a response asking why I sent it at 2 am. So I didn’t see her. I feel like I should cancel tomorrow but I won’t. Voices are going bananas. The German voiced one is back. I have no idea what he is saying as his accent is so thick. I know that he wants me to die as that much is clear. So now there are three male voices. I thought I was getting better and this shit happens. I was able to get an appointment with the therapist for the 6th, the day after I see the neurosurgeon. I sent her a message saying that I was feeling suicidal and voices were bad. Haven’t gotten a response to ANY of my messages so I don’t even know why I fucking bother.
My mood has been low all day. I just want to sleep but I can’t because of the voices going around and around. I managed a shower and it further exhausted me. I wanted to shave my face and pits but it never happened. I just washed up and that was that. It took me forever to dry off as I was so tired afterwards.
I managed to have some lunch. I had some chili. Past few days I have just been eating cereal. Special K came out with a honey oat multigrain that is the bomb. It is so good. I really like it. It is cold today but I don’t think I will be going out. I was thinking about maybe heading to the Boston Public Library to do my research for my book but I am so damn tired all the time I don’t think I can do it. I can barely take care of myself. I still got a cold but it is finally going away. I just have a stuffy nose left over. Been taking 10,000 IUs of vit D. It seems to be helping a lot. I just wish this fatigue would go away. I am not looking forward to two appointments tomorrow. There is an hour in between them so not back to back. It is just going to be an exhausting day.