Category: cauda equina syndrome

Saturday Blog 15022020

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

Saturday Blog 15022020

I really haven’t done much today. My only goal for the day was to write a blog. I have been in pain most of the day, which meant having to take gaba. I have a risk for falling when I take gaba during the day and I have to be extra careful when going up and down stairs.

I put a medication on my bed when I got it from the pharmacy and I can’t find it. It has disappeared or my bed ate it. Sucks because I really need it right now. My psychopharm and I had decided to go up on the Invega before resorting to psych admission. Problem I have with admission is cathing. I am not sure what the process is as every floor is different. I am not sure if I will be able to cath or if I will have to have a leg bag. Having a 500mL bag will suck as I know I will wake up in the middle of the night to empty it. I doubt they will allow me to change bags as the tubing might pose a safety risk. The psychopharm did say that if my safety becomes an issue to go to the ED regardless of the cathing issue. My safety is more important.

I hit a rough spot the other night and I texted my therapist about it but got no response from her. I am sure we will talk about it when I see her next week. I had to fool the voices in order for them to leave me alone. This is when I increased the Invega. I am doing okay with the 6 mg. The voices have gone away. The psychopharm said I can go up to 7.5 mg if I need to. The script I am missing is the Invega. I don’t know if I used it or where I put it. It isn’t on my bed. I might have to get a refill to the pharmacy but that would mean borrowing money again as I am broke until next week. I don’t know if my mother will give me it. I already borrowed money off her earlier this month. I keep forgetting to budget money for my meds. Next month I need to have food so I put in a large order of groceries but I don’t think I can afford the $230 cart that I built. I might just order a few things rather than the whole thing. I am trying to get my food stamps increased but with the way the stupid ass president is cutting things, I doubt I can. Hell, they may just take it away from me because I am disabled and cannot work. So stupid. But the poor and disabled are the first groups of people to get screwed in government funds.

What you see is what you get

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders
What you see is what you get I saw this on Instagram and had to share it. It was so funny to me. I made breakfast this morning and then my mother wanted me to go downstairs for some ingredients so she could make something. As I was going leaving my apartment to go to my sisters, I tripped on the mat that was by the door. Fucking thing flared up my foot and ankle because it had to be my CRPS limb. My right one is a little sprained. I talked with my PT and she did say to start off slow and then increase to tolerance. If that doesn’t work, I am to see my doc and get a PT script to see her. I hope it doesn’t come to that. Last night I was having a hard time with the voices. I did send the text to my therapist but have not heard back. I don’t think I will. I am probably going to get yelled at for sending her the text but I don’t care anymore. If I feel like texting I will and if she responds she does and if she doesn’t fine. I have been trying not to text but sometimes I feel like sharing my emotions with her. Maybe I should just get a notebook and write down what I feel rather than text her. I don’t know. I just have so many emotions that sometimes I can’t handle it and need to let someone know how I am feeling, someone that I know will care and not be judgmental about it. I just showered and shaved. It felt good. I feel a little bit better now that I am clean. I am kind of worried though because I cathed before showering and there was a little blood clot in the stream. I am not sure if it is something to be worried about or not. The urine was clear, not bloody or reddish. I just left a message with the clinic nurse. I hope I don’t have to go into town today. I really am not up for it. My right ankle is swollen as I think I sprained or strained it again. I have been trying to rest it as much as possible but the agitation from the voices doesn’t keep me still enough to rest. The voices are quiet and I am just hearing my regular voices. I still have my reading voice so that is good. I did take an increase in the Invega this morning and a PRN of perphenazine. It is helping to keep me calm. The eczema around my eyes are back because of the cold dry weather we are having. The shower water stung my eyes so bad so I just put in the lotion I am supposed to use. I will use it the next few days to calm it down. I hate the dry skin under my lids as it looks like eye crud. My right ankle is all swollen. It is my “good” one. I have to start doing the home PT exercises that I was taught last year when I sprained it. Just hope I don’t have to go back to PT. That will be such a PITA. I was talking to a writer friend about this paper that I am writing. I started off with good intentions and then it all went to crap. I asked what to do to fix it and she said to start over. Fuck. I think I will use some of what I written in a copy and paste thing because there were some good points I wrote. I don’t know if this will be a good paper as I am struggling with it a lot. Not sure it will be a blog or not. I haven’t decided what to do with it. But it has to be written first. So it is back to the drawing room, I guess.

I have a need for solitude

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

I have a need for solitude

This line is in another great Mary Chapin Carpenter song called it. I have been listening to a lot of MCC the past few days and it is because I need some music to calm me down and put me in a good mood. She does this as her voice is so soothing to me.

I’ve had a rough day. Voices won tonight, though I made believe they did. I always have a short supply of nortriptyline by my bed and I pretended I “took the bottle.” They think I overdosed but I didn’t. It was the only thing I could think of to shut them up. I am debating texting my therapist this but I am afraid if I do. I am going to increase my dose of Invega to 6mg daily and see how that goes. I hope I don’t get side effects.

My therapist and I talked today about being depressed and suicidal. I told her that there have been times I haven’t been depressed yet been really suicidal and then she pointed out all the times she has known me, I have been depressed and therefore suicidal. I wonder if she thought because I was in a current depressive episode that being suicidal went along with it? Going to ask her next time I see her. She really irks me. She gave me the option, after I told her I was suicidal and hearing voices, to take a month of therapy off. I don’t get it. Sure she was telling me that nothing was forcing me to stay in therapy. She has that way about her. She was being serious when she said this. And it is true. I am not being forced into therapy. It is all voluntary. I don’t know why it bothers me so much though when she says it.

I have been really thirsty since coming home. I don’t know why other than I really haven’t been drinking much the past few days. I have been bad. Then I drink a ton and go to sleep only to wake up at 3 in the morning having to go pee. It sucks. I am falling asleep as I am typing this so I am going to stop here for the night. I will try and write more tomorrow.

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.