Tag: CRPS (formerly RSD)

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.

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.