walking in the mud today

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

Walking in mud today

I had an appointment today with the behavioral psychologist. I didn’t want to leave my house as I had a bowel accident soon after waking up. I lost control and was feeling shitty, no pun intended. I felt really down and anxious. I left when I had to, remembering that I had to go the opposite way I go for my medical and therapy appointments. My mother needed something mailed so I decided to take the block to the main street rather than walk to the end of my street to cross it. I felt like I was walking in mud the whole time. My legs felt so damn heavy I didn’t think I was ever going to reach my destination. I wasn’t short of breath or anything. I just was so damn tired. To get to this appointment involved a lot of walking and by the time I reached the psychologist’s office building, my right ankle was tender and tired. The appointment went well. I have one more appointment with him and that will be our closing one. I won’t have to see him again after that. My feet will be glad.

I came home and basically collapsed. I was hungry so I had the peanut butter and jelly sandwich I had taken out of the freezer. It was the Smuckers kind that was all ready made. I like them because they are already made and I don’t have to stand to make a sandwich. I then went up to my room and tried the past several hours to think of something to write. I had the title, which usually is my stopping point. I was thinking of the blog since I was walking in mud but sort of lost my words once I wrote it out. I had some things I wanted to tell my neurosurgeon but I forgot those, too. His nurse practitioner had called me before my appointment with the psychologist and told me losing my bowels was more evidence I had a tethered cord. But she wasn’t worried about it. Fuck. I have to suffer another five fucking weeks? I don’t want to be incontinent with my damn bowels. I want to ask the neurosurgeon if waiting is a good idea. I can’t imagine that as my nerve damage is getting worse that waiting five fricken weeks is a wise decision. I hope the doc reads the message and not the unit secretary or that NP I spoke to today. These nerves are fragile and I just feel like if I have to wait, I am not going to get function back. I really don’t want to cath and be in diapers the rest of my life. I will end up killing myself if this happens.

Saturday blog 08022020

by Midnight Demon, posted in blogging, Chronic pain, chronic physical pain, CRPS, depression, mood disorders, recurrent major depressive disorder, suicide

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…

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

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.

Upcoming surgery & other things

by Midnight Demon, posted in depression

I met with my neurosurgeon this week. He went over my MRIs and said he thinks I have a tethered cord because there isn’t a huge disc causing my symptoms. A friend asked if it could be Arachnoiditis, clumping of the arachnoid nerves. I didn’t see any such clumping on my MRI and neither did the radiologists or my surgeon but I asked him anyways.

I haven’t been sleeping well so when I got home the day of the appt, I laid down and passed out. I woke up four hours later to empty my bladder and then write some emails to let some people know what the surgeon said. The surgery will have me under and through EMG they will know what thing to cut to release the band supposedly causing all this. I told him to look at my L3-L4 disc to make sure it was ok. I need to make sure I don’t need another surgery later on.

I met with my pcp yesterday and asked about top surgery. He said the surgeons a BMI of 35 minimum which means I have to lose another 20 pounds. I am not happy about this because it feeds into my loss of appetite stuff. I kind of challenge myself as to how long I can go without food and it could be days now before I can eat something. I do regain what I lost soon as I resume eating again. It has been the same five pounds past few months. I gain and lose it. Now that I have it in my head to lost 20, I really want to lost 35 and be around 165 just to give myself some extra room.

My pcp seems to think it would be easy. But it is not. Meds are fighting against the hunger strikes. Adding the nortriptyline and mixing it with gaba has been my downfall. I may still be a size mens 38 but holy fuck wearing a size 40 today made me feel I wearing balloon pants on. They were so loose as I had to keep picking them up. I do have a few pairs of pants of 38. I am going to have to alternate them so I don’t wear the crotch out. That has been my downfall with pants is wearing that part out.

This week is over for appts. I’ve had four and will have four next week. Next week I see the behavioral medicine psychologist and my urologist. Other two are therapy and psychopharm. I asked my psychopharm about TMS or ketamine and she said next step would be ECT. Fuck. I value my memory. That has been the one reason why I have not given in to this treatment. I most likely would have to be hospitalized for initial sessions. Surgery date has already been set. Between now and then I am going to try and lose weight not gain a psych admission. I told my therapist yesterday (had two appts yesterday, therapy and pcp) that I was suicidal again. She asked what was my risk and I told her. She then asked what to do to keep me safe. Other than transplanting the thoughts out of my head, I have no clue. I don’t plan on acting for a while. I didn’t tell her my plan date. There was no need. She was writing down everything I was telling her which annoyed me. I get she has to but doesn’t mean I have to like it.

I made some progress with my mother about bathroom privacy. I told her if the fucking door (said without the f word) is closed, someone is in there and to not open the door. Apparently she has walked in on my nephew a few times. She laughed about it. Laughed! WTF is funny about violating someone’s privacy?? The door’s lock mechanism is shot. It needs to be replaced but things don’t line up right because the goddamned door isn’t on the track right. We have a sliding door which I guess can also be called a hidden door. I call it a sliding door because that is what it does. It slides open and closed. Sliding. She has not walked in on me since that conversation. She did deny that she has barged in on me. And the therapist wonders why I have anger in my voice when I talk about her. JFC.