Category: cauda equina syndrome

Agony of Despair

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

Agony of Despair

I had therapy today. I gave her a letter I wrote the other night when I was in a suicidal frame of mind. She said that my treatment is basically in limbo as I am not sure what the recovery is for after my surgery. There may be a way for me to have a telehealth connection but my insurance doesn’t cover it and she has to fight to get it covered. So I maybe without therapy for a few weeks or more depending the outcome of the surgery. She will be able to see me while I am inpatient but I am not anticipating a long hospital stay. Most I will be in for is a week as they like to kick you out soon as you are stitched up. My recovery is going to be at least through the weekend but again, depends on a lot of factors. What I am thinking may not be accurate but I do know I will be there at least through Sunday, if not Monday. I will need home care and/or rehab services as there is no one to care for me at home so my stay may be longer than Monday.

While we were talking she was joking and then I was joking and then she jumped on me to make sure she was saying was understood by me and I just lost it after that. I broke down and I am still reeling from it. Talk about something stupid setting you off. I didn’t allow many tears to fall but I felt like an elephant had jumped on me after the tears stopped. My chest felt so damn heavy. I told her the psychopharm wanted me to think about ECT and she said no one should be bringing up anything to me right now with the surgery that I am facing. She was looking out for my well being and I appreciated that. She is a really good therapist and I am glad to have her in this point in time. I think I will be able to get some work done but it is going to take some time.

Today is the anniversary of when I first attempted suicide. No one knew and I did a bad job of it but I entered the world of self-harm in the process. The goal was to dig into my arm to sever a vein but I never realized how many layers there are to get to that level. The following night was as traumatic as that night and the following day I entered therapy. It took a lot to get me to open up because my father had instilled in me the “what goes on in the house, stays in the house.” I was too suicidal in the week after the attempt. I just started cutting and it was how I expressed my emotions as I didn’t have words for them. I still don’t. That is what went on today. I felt a jumble of shit and just broke down when I was being hammered by questions. My therapist didn’t allow me to jump ship and if I did she lead me back to where I was. I had an anxiety attack that kicked everything off. We were talking about surgery and the next thing I know I am crying. On the way home I wanted to drink so bad. I was thinking about gin and how drunk I would get but those feelings have passed.

I was telling my therapist about how my blog writing has dwindled and writing in general when she picked up the letter I wrote and said no sir. I guess I have to have some kind of person in mind while writing in order to get the words out because once they start flowing, I can go on. She did say that I started to get into something while I wrote but then I stopped midsentence. I had no idea what she was talking about. I kind of just went with it because I do that so often now that I don’t even notice. I just know I feel some strong emotion and I move onto something else. A friend who was reading my blog the other night commented on it. I had to laugh. He said at least I was aware of it. I am aware but after the fact not during. It is really hard for me to sit. Hell even while having severe anxiety in session I was talking about the Sox and anything else to get over the feelings. I know I compartmentalize a lot. It happens with trauma. I told her to expect a lot of talking about the Sox all season. She wasn’t phased only with me coming to see her to talk about the sox. HA. I talked a lot about baseball in my previous therapies and I will be damned not to talk about it in this one as well.

Thing that is bothering me is that she wants me to write out stuff, either blog, journal, letter writing, etc. but I don’t think she gets how damn difficult it is for me. There have been moments where I cannot write what I am feeling because I am too jumbled or I just cannot find my words. It is like they are there but I can’t “see” them. What is worse is that the Invega is taking away my voices so the inner conversations I always have are lost. Granted if I am feeling high emotions, they are there because they always are. They always have been. I don’t want to become psychotic when I am feeling high emotions because that will be bad and potentially dangerous to me. The voices tend to tell me to end my life when medication isn’t holding them back so if I am in a high state of despair, I may act on what they say.

I am glad the drinking urge has passed and I don’t feel like drinking. I have a quarter of a bottle left and I seriously thought I would finish it off. It wouldn’t take much for me to become drunk or buzzed from alcohol because I don’t drink normally. I might have a glass of wine occasionally but that is all I will have. I don’t usually drink to get drunk but tonight I wanted to. Glad there was a line at Walgreens to distract me from these thoughts/feelings.

about goals and feeling agitated

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

About goals and feeling agitated

So I got some things done. I got my recycles in the bin. I started another bag. I showered and shaved. I did a pretty good job though I missed a spot here and there. I touched up. I shaved the sides and back of my head. It feels good to feel the baldness. It takes some work and my ankle did not like me afterwards that is for sure.

I got into a fight with my sister. She is just being ridiculous and I think I am going to stipulate that I am not going to talk to her until she gets some help. She has more issues than I do. But her germ phobia has gotten out of control. I seriously want to get her toilet seat covers because she complains every single day about something about the toilet. I don’t understand the obsession when it is your own family members. We share the same germs so I don’t get it. Someone else I can see but family? Come on. Now I am fearful of using the bathroom not only because of cathing but now if I should forget to wipe the damn toilet down after I use it. Fuck. Who the hell does that in their own home?? Fucking ridiculous!! I don’t need this stress. It is almost getting to the point where I am thinking of going somewhere else. I can’t be under this much stress just for living at home. No one should have to walk on eggshells where they live for whatever reason. Just talking about it is giving me anxiety.

I got therapy tomorrow. I cancelled today’s appointment because I just didn’t feel like going into Boston late afternoon. I would if it was my therapist but it’s not so cancel! I am not sure I will reschedule the appointment either. It is supposed to be the last one so I might just forego it.

I fucking screwed up my checking account. I spent too much (on bills) forgetting there were two being paid today so now I will be over drawn. I am screwed. I have no idea what the hell I am going to do as the fees are going to kill me. At least I got my meds and paid the money I owe to the mail order company. My doc will be calling in a script today and it won’t go through unless there is no balance.

I haven’t napped though I tried because I got a migraine around 1500. I tried to sleep but I got agitated. I took some perphenazine to try and calm down before I was bombarded with voices. They came anyways and then I was yelling with them about my sister which just made things so much worse. I know I should be in the hospital but because of my medical issues I just can’t. I am too afraid my needs won’t be met or the orders will be wrong so I will be fucked. I’ve had it happen too many times now and I get annoyed and frustrated and then want to leave but can’t because my safety is an issue or the team doesn’t feel like I am ready to leave. Then I will have to deal with the after math that my family will think it is someone’s fault I am in the hospital. They don’t understand that I have serious mental illness. My mother just thinks I need to talk to her to be “fine”. Mind you she wouldn’t understand a thing I go through no matter how many times I tried to explain it. Fuck, she still thinks I am female and tonight I have been going through horrible dysphoria because of the things on my chest. Knowing I have to lose weight to get rid of them just makes me more depressed. You would think it would be a motivator but it doesn’t work that way with depression. If I didn’t have severe depression, I might be able to get motivated. Right now I am just planning on not eating as I don’t know how else to lose. It worked last year. Only problem is that my appetite is sort of back so it is hard not to eat when I am hungry. Hence why I had burritos at 2 am the other night. I ordered my groceries so I will be getting tortillas to make my breakfast burritos to store. I hope to make a lot. I just hope my mother has enough cheese. I know she has a lot of eggs. I might have to buy a dozen as I will be using a dozen. A friend said the secret is 2 eggs per burrito that you want to make. Which makes sense as when I make one, I use two eggs. But this is all for when I have surgery and I have food for when I don’t feel like making something.

My surgeon’s NP called me today to answer the questions that I had. She explained the surgery to me and that they won’t be removing a lot of bone or anything and I won’t need a transfusion. So I was happy about that. I told her I would need home care and she said I would have to talk to the nurse manager on my case when I am inpatient as they and my surgeon arrange that. It all depends on what I need and how I am after surgery. I keep praying that I walk in the hospital and am able to walk out even if it is with a walker. I haven’t decided if I am going to wear the afo or not the day of my surgery. I think I will be okay walking without it. I will have my sister bring my bag with me later that night so it doesn’t get lost. I just plan on having a few change of clothes and my toiletry bag. And catheters. The NP said the neuro floor is mostly private rooms so that is nice. I will know when I wake up if things went okay or not. Last time things were not okay and I knew right away something was wrong but I didn’t know what as I was out of it. I just worry my CRPS foot is going to go berserk for being laid up and manipulated. I hope I don’t wake up in a flare. That will be friggin awful.

karma returned?

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

Karma returned?

Yesterday, I helped two strangers. On the way home from the hospital where I had my appointments, I noticed I lost my ring. I had no idea where it could have been. Last time I felt it was when I was washing my hands and a part of me wondered if I accidently threw it away with the paper towels I was using as I was adjusting it on my finger. That was the last time I remember seeing it. I should have put it on my other hand where it wasn’t so loose but I didn’t so I thought I lost it. Today I called up police and security of the hospital to check to see if someone turned it in. Someone had. I took the next bus to the station and went to the hosp. While there, I decided to go to the lab and see my friends. It was good to see them. I miss working there. I even had a dream that I had to FedEx a sample to get results by 5 the next day. Weird. I think the lab will always be a part of me, even if they get my name and gender wrong. Some of my friends who follow me on social media know I am transitioning. I wasn’t out to all of the people in the lab so I just had to take it.

I had a good session with my therapist yesterday. I had written her a letter which she said I started off strong and then went off on a tangent. I don’t remember what I wrote so it is possible. I am finding transference with her gets easier as time goes on. She kept my letter and the papers I printed out which were the SSF part A. I told her we can use them and they can be our talking point. It will help focus things. Least that is what I hope will happen. Just hope she doesn’t sort of hold me to it every meeting. My psychopharm is. She pulls out the sheets every meeting. She asks about my suicidality. She has been asking since I told her to. My therapist has too. She wanted to know more details about it but I didn’t want to talk about it. I told her it would be a few months before I was ready to act on my thoughts, though I didn’t say it in those words. I am still not sure I will tell her I was going to kill myself.

I told my psychopharm that if I don’t feel better by Monday, I will consider going inpatient for a while. I really hope I don’t end up back south east of Boston again. That place was terrible. I would really hate having to use catheters there. I would rather have a foley put in so I won’t have to worry about it. I get my order of supplies tomorrow. I plan on packing a bag in addition to trying to clear the alcove space that needs to happen. I hope this bag that I have been trying to find is there and not in the other alcove.

Presidents’ Day blog 2020

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

Presidents’ Day Blog 2020

It has been another painful day except this time it is my leg that hurts. I haven’t been able to do much today. Both legs hurt but the left is worse. I hope I don’t have a DVT. I always worry about that when I have been laying about and not being active too much. Hard to be active when you are in pain. I see my therapist tomorrow and I plan on calling my pcp’s office if it still hurts. I got to call the office anyways as there seems to be a scheduling error. I don’t have an appointment with my psychopharm until March. I thought I had one on the books for the last week of Feb but there isn’t one. I need a refill on my meds for the end of the month so I would like to see her but if I can’t, I will just tell her I need a refill. I got to call my surgeon’s office as they have the wrong medical record number on my paperwork. I think the number is my mother’s.

The last call I need to make is to make an appointment with the public transportation Ride service. It is a pickup service that I may need after surgery because I will be too weak to take public transportation. Once I have it, I will be able to see that pain clinic my pcp wants me to go to. But that won’t be until after my surgery. I don’t want to be changing up meds before then. I just hope that my pain will be taken cared of while I am in the hospital.

I was hoping to go to Starbucks tomorrow but I am out of funds. I’ll have to make my coffee tomorrow. Past few days I have been drinking tea. I still have the iced coffee in the fridge. It is past its expiration date so I hope it still takes good even though it hasn’t been opened. I will see tomorrow.

I got my grocery bill down to $174 even. Hope I can keep that total for a week. I don’t get paid until next Monday. I got a lot of cereal and frozen dinners so I have food while recovering from surgery. I wanted something quick that I didn’t have to stand and cook. I don’t think I will be able to do much the first few weeks after surgery. I have no idea what I am going to do about therapy. I don’t think going six weeks without is a good idea.

The voices are somewhat better. The increase in dose of the Invega has helped stabilize the psychosis. I chatted with a suicide hotline last night because the pain was so bad, I was losing my mind. We were talking and I felt like I gave too much information about being suicidal. They asked me what my plan was and I said that wasn’t relevant as I am not going to act on my thoughts tonight. I can hardly walk or stand so there was no way for me to attempt. They wanted me to let my therapist know I talked to them. I cringed at this. So after the conversation ended, I texted my therapist to tell her. I also asked for an appt for tomorrow and she responded with some times. I think it will be good to talk to her as things have been building up. The stress of surgery is causing so much havoc. The flares have been, too. I just feel so hopeless and helpless when the flares are so bad I can’t stand. It causes me to think of ending things and once I start, I can’t help but plan things. It is my escape and I don’t think that is ever going to change.