Category: cauda equina syndrome

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.

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.