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.

Covering all our dreams with rust

by Midnight Demon, posted in depression, mood disorders, recurrent major depressive disorder

Covering all our dreams with rust

I hear this lyric in a song by Mary Chapin Carpenter called “On and on it goes”. I have been in pain since I came home around 1 pm. I didn’t want to leave my bed but I forced myself to. I wanted to keep at least one of the two appointments I had today. I missed uro because I just couldn’t get up. The depression is getting worse. I can’t do early morning appointments anymore. I just can’t wake up for them because I am not a morning person. It takes a great effort to be up by 0900. That is if I sleep. I did sleep. I just didn’t want to get up because I had the why bothers.

I have been in a rotten mood all day. I don’t know why as baseball Spring training started today. But my mind hasn’t been on baseball. I’ve been in so much pain and the depression is taking more and more joy from my life. Psychopharm NP wants me to think about ECT. I would but it would probably mean another hospitalization and I couldn’t go for that. I am serious about dying this time around.

I posted on twitter that I needed to lose 20 lbs for top surgery. My pcp thinks it will motivate me to lose weight. All it did was motivate me to die. I feel really stuck right now as I have hairy breasts and no means to get rid of them any time soon until I lose the weight. I might lose some weight while I am recovering from back surgery. I just got to be careful not to gain it back.

I am supposed to see my therapist tomorrow. I really don’t want to leave the house. My legs are killing me and the thought of walking all around the hospital campus to get to the building she is in, makes me so tired. Wish they still had the loop shuttle but they don’t anymore. The shuttle traveled to the various buildings around campus. I used it when it first started but that was more than 10 years ago. I haven’t seen it since my back surgery in 2006. It was a nice service to have.

My left calf, ankle, and foot are beyond painful right now. I have been trying not to move too much but soon as I settle down, bladder needs to be emptied. Driving me nuts. Yesterday I went to the ED because I thought I had Cauda Equina Syndrome again. I lost control of my bowels and it freaked me out. The NP for my neurosurgeon said it just provided more evidence that I have tethered cord. Surgery is in 5 weeks from now. Guess I will have to be in a diaper until then so I don’t shit my underwear. I feel so awful. Then when everything came back normal, I felt even worse. I feel like I am wasting everyone’s time. I asked my psych if I made the right choice and she said absolutely. I felt slightly better. She would have told me flat out if it was the wrong choice. I just wish I didn’t live in fear so much with my body malfunctioning. It is so hard to know what is and isn’t wrong. Hate going to the ED but they are the ones that will know if something is really wrong or not. Rather have them say so than me worry over it, losing sleep and such. The exhaustion I am feeling now is because I’ve had so many appts the past few weeks. I had 4 last week and 4 this week. Been walking so much my right foot/ankle is acting up again. I really need to do the exercises again. Just hope it isn’t so weak that I have to start all over again. Been 7 months since I stopped physical therapy. I haven’t kept up with the home program. I haven’t even used the brace. Might tomorrow as it is supposed to rain. Weather has been awful with the barometric pressures increasing and decreasing.

I told my therapist I would make every effort to see her tomorrow but I am in a lot of pain. I wish I could have a ride there. Speaking of rides, I got to call tomorrow to set up an appt with them. It would be one less thing off my mind if I have The Ride in place so I can use them to go home on days I am really tired or have a lot of appts. I imagine I might need it after my surgery because I am sure my blood counts will be low and I will be anemic.

I will try and write another blog tomorrow after therapy or to say I didn’t go. I want to try and write at least every other day or 5 days a week. It has been hard because the depression just wipes me out and I feel so terrible I can’t get my thoughts coherent enough to write. I hate it.