Tag: tethered cord

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.

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.