It’s 5 am
I woke up an hour ago to pee and couldn’t go back to sleep. So I am writing hoping that does the trick. I had posted in my support group for cauda equina about me having to bring my catheter bag with me to the wake and funeral. I really don’t want to but if I need to go, well, I need to go. I can sometimes go on my own but other times, it is a hit or miss, with a miss being I need to cath. I am so nervous about this. I think I am going to call my cousin later this today to let her know just to ease my mind a bit, though her knowing what the bag is for might cause things to be uncomfortable for all. I don’t know. I didn’t think of that scenario. Fucking stupid bladder!
I did what I wanted to do yesterday. I ended up showering Friday night because I just couldn’t take my hair being dirty anymore. Then yesterday when the pharmacy was open, I went and got my meds. I also got some of my favorite cold brew coffee drinks. They were on sale so I didn’t mind spending money on them but forgot to buy the M&Ms peanut candy. Will have to go back today. I want to go to the Chess Club today. I set my alarm and will be taking my morning meds later than I usually take them in case I am able to get back to sleep. I just checked the bus schedule and, oof, the bus doesn’t run frequently on Sundays. I thought I would be able to leave around 1230 as the club starts at 1300. The bus is at 1155 so I will be a half hour early. Which is fine as I want to check out the coffee shop the club hangs out at. I will see if I can borrow ten bucks from my mother as I don’t have much cash on me. Wish I remembered about the club before buying the coffee stuff at the pharmacy. Oh well.
My foot just exploded in pain for whatever reason. There is a storm brewing in the area so that maybe why. I am not sure if it is today or tomorrow. I just know I am hurting now. I don’t think I will be able to go back to sleep now. The psychosis is still there so much to my reluctance, I am going up to 6 mg of Invega to try and stop the psychosis from getting worse. I just got to worry about side effects and cognitive issues as it might interfere with my writing more. It happened when I was in college. God I hated it because I would read the same paragraph at least three times still not knowing what the hell I read. Oddly, I was taking a neuroscience psychology class at the time. When I told the professor I had to withdraw she understood. I was thankful for that.
I guess my dream of coming off the Invega is not going to happen. Seems every time I feel ready enough to stop taking it, shit like this happens. I know it is always a risk when my mood is getting bad or is already bad. Sometimes the psychosis is not congruent with my mood so there is that. I did check my “issues” and seems the NP took off BPD and just left the Persistent Depressive Disorder, which used to be known as Dysthymia. That does fit into what I have better than recurrent major depression. Either way, I do have a depressive disorder and calling it whatever doesn’t change the fact I have it. My skies are always going to be gray no matter what it is called. I am just glad the BPD has been taken off my record. I have certain criteria but I don’t meet enough to have the disorder.
I am going to try and nap for a bit. I got five hours before I need to get ready. Hope to sleep for at least 4 hours. Wish me luck!
It’s 2 am and I am still up
Pain hit me bad around 2115 or so. My foot has been feeling like it is being crushed all day and still continues to feel this way despite my breakthrough med. But around 215, I started having severe suicidal ankle pain. This caused me so much fucking aggravation. Like the last nerve had been hit. I spoke the other day how I have all the ducks in a row and now they will call come together. I am sick of being and will be taking efforts soon to not be. It won’t be this week but sometime this month.
I am supposed to go to physical therapy in twelve hours. I am going to cancel the appointment mostly because my voice still isn’t there and I don’t want to be talking for 45 mins just for my throat to be sore the rest of the day. I will see if my voice is better next week and then have the eval then.
I sent a message to my psych to see when she wanted to talk, if she wanted to talk. I never got a response so I guess we aren’t talking. No big deal. I can try to talk to her on Tuesday. I sent her a thing she wanted me to write to try and get the therapist up to date on my suicidality. She hasn’t said anything about it so I guess it is ok. I wrote about the background and then how things are now. I also wrote about how I want her to be accountable to things we discuss and have them followed up the following week. I am tired of therapists not following through or continuing what was said the previous week. I have not printed this out. I don’t even want to see the therapist because I am afraid of what will happen. I told her some stuff about how I want to proceed in therapy from now on until the suicidality is somewhat under control. I am not sure how she will take this so I am nervous. I went through this with my long term therapist and things didn’t go well. She didn’t want to carry through on things and that frustrated me more than anything.
One of the things I talked about was the SSF (suicide status form). It is part of the Collaborating, Assessment, and Managing of Suicide (CAMS) framework. It is used to assess suicidality to get a better picture of what the episode it like for the patient. It is individualized for that patient and it really helps the clinician know where the problems or situations are that are leading to this person thinking about suicide. I have made copies of the forms from the 1st edition of the book but have not done so for the 2nd edition. The 2nd edition has the changes of a few things and on the current DSM (diagnostical system of mental disorders). The last message I had with the creator was a month or so ago and he was looking into an electronic form so that it could be easier sent to the medical record. The wonderful thing about the SSF is that it has all the documentation needed in just a few pages for the patient’s record. Right now that is just paper but eventually it will be electronic. I am not sure how that will go or if there will be a 3rd version of the book to reflect this or what. But it is in the works and last I heard would be ready sometime this year.
I don’t know if she would be interested in something she has not seen or heard of. The bottom line is that CBT and DBT (both of which she does) are also evidence based treatments for suicidality. I am not sure if this is true for chronic suicidality but I don’t think that has been studied.
1203 pm: I canceled my PT appointment. I didn’t sleep until after 0500 and with my voice being terrible, I really didn’t want to talk. Now I have the whole day to myself. It is nice out. I have one business I need to take care of before I go. I got to close my IRA account as I haven’t put any money in for years and because it is below the minimum amount, I have been charged every year, dwindling what was there. I figure I better close it before there is nothing and then be in the negative. The interest is not that great either. I just updated my book because I found it and it was only 1 to 2 cents given. I am just worried about how much taxes are going to be taken out because I am not of age to collect it. I went through this once before and it was a hassle. I think it was more because the bank didn’t want to do it than anything. Least that was my impression. Maybe I will go to the square and do it at the bank there as the one near me always gives me a fucking hassle with transactions.
I need to take a shower. I also need to change my bed sheets but that in itself is more tiring than taking a shower. My foot is a 7 right now. I know after the shower it will be up for a bit. Maybe in the afternoon I will go to do the bank business. I already had my coffee for the day so I won’t go to Starbucks. Though I might as someone misplaced or got rid of my reusable cup. I can’t find it anywhere. Maybe my nephew has it in his room. I will ask him when I see him.
Ducks in a row
I’ve been struggling all week. Pain and depression have been an all time mood sucker, increasing the suicidality to the point where the other night, I have things down pat. I am or should be “happy” about this but not really. The fact I can act at any time gives me some relief that when I want to escape, the choice is there. There really is nothing about what if anymore, well there is. I could be rescued or have a change of heart and get help before things take place. I won’t know until that moment. Worse case is I just get sick. I hope that doesn’t happen.
I had therapy this week. I still have no voice from my allergic reaction on the 16 Aug. I saw the folks in laryngology and the PA (physician assistant) said there is some constriction of the things surround the vocal cords, causing my voice to be the way it is. No cancer, polyps, or anything else causing this. I didn’t ask what was causing this as I just wanted to get the hell out of there. She was kind of freaking me out because when she started explaining things, she would shut her eyes and then go off tangent, making me all confused. My appointment was at 2 and even though I was in the room by like 215, I wasn’t seen till 245 and by the time I was done, it was 330. The camera was not pleasant. I had a microphone on my neck and it shifted. As she was trying to get it adjusted the damn fiber cable went further down my throat to the epiglottis, making me gag. I asked what can be done and she basically said time. I asked about speech therapy and she was not advocating for it so I practically had to beg to get referred to it. She said the therapy is booking out in a month’s time so theoretically, my voice could come back by then.
I was expecting this as the folks in the ED said the same thing (well more that I needed speech therapy, not so much it would get better on its own). My pcp pissed me off that day because he wanted me to stop my allergy meds. Even though I said I take it every day and have for years, they think it could be a reason. I really don’t see how all of a sudden this medication would make me hoarse. The laryngologist said the GERD could be causing this but I haven’t had too many episodes for this to happen and when it did happen before the allergic reaction, my voice didn’t change. She recommended some antacid that I am to take at night. It isn’t a kind that I can get at the drug store but online because it is supposedly made with seaweed. I don’t know. I don’t think that is the reason either, unless the ginger caused so much acid production it did affect my voice this bad.
I’ve been in contact with my psych. I spoke with her today. She asked what I was doing and I said I didn’t know as I just woke up and haven’t had coffee yet. She told me to get coffee. LOL She is too funny. Kind of strange that she only recently laughed at my humor and made jokes. Don’t get me wrong, I do love hearing her laugh. I just think it only took 26 years to hear it. LOL She didn’t tell me when she was going to be in an office soon. I haven’t asked because I know she will tell me when she has one. She does want me to write to the therapist about the stuff that is going on. Think I will do that today. I really struggled to talk to the therapist this week because of my voice. It was so shot after seeing her Wed. But then I was up more than 24 hours when I saw her. I was also up most of the day Wed. I just could not sleep despite taking melatonin and Ativan. I was so overtired. I felt like total shit yesterday and still feel crappy today, though much less so. I did a few errands today and my last stop had me weary. By the time I got home about 15 minutes later, my ankle flared up (it was already a 9 to begin with) and I just felt weak. I got some stuff to do in my room (there always is stuff to do in my room). My sister has once again become a tyrant. She said she was going to do stuff this week to clear my room and bring some stuff up. Has not done so but I am guessing tomorrow she will. I hoping she won’t. She is really sending my anxiety up the roof and I have been so hypervigilant that it is hard for me to relax. Yesterday I wanted to sleep but I kept thinking (even though she wasn’t home) that she was going to barge in my room at any second. If I can do two things that will make things easier for access to my alcove, I am going to try. Wish my nephew didn’t move all the stuff to block it even more. Now I got to move it all to the other side of the room where there isn’t much room to begin with. Just overwhelms me to the Nth degree.
I had a few hours sleep. I had another bad night of pain that kept me up. Around 2 I started writing a letter/email to my psych. I told her how frustrated I was with her being dismissed and my anger about the institution. I also told her how difficult it is to call her when I am suicidal and thinking about acting. I had emailed her to find out when I should call her. She always said to call her but I didn’t know when it would be okay to do so. I always feel like when I call her, it should be an emergency as I usually just email her. I only call if my anxiety is through the roof and I can’t calm down or I am in overwhelm mode and need her to help calm me down. I haven’t had a response to the email, yet. I am not sure I will but we will see.
When I got up, I had one coffee, a cold brew. I had to go to the grocery store and the pharmacy to pick up my meds. I did a little shopping and got my favorite ice cream. I was worried it would be soup by the time I came home as it is really hot today. Tomorrow is going to worse. I hate summer. I went home quickly and luckily I didn’t have to wait long for the bus. I was starting to feel shaky when I came home, like I had three cups of coffee or something. I still am feeling jittery, even after I ate and had a soda. I just took some pain meds and my urine retention meds as I haven’t used the bathroom since I got up. I hate that my bladder isn’t working right. I see the urologist next week to find out what is wrong, though I suspect it is the nerve damage that I have. I don’t know if I will have to self cath or not. I hope not. I don’t know if the med I am on needs to be increased or just switched to another one. I did have success with Flomax when I was in the hospital for my second surgery. It really helped with the retention but didn’t always work after the re-do surgery as I was retaining. I remember when I had the MRI I was completely gone. My mental status was out in left field. I was being catharized and it was like I knew where I was but I didn’t. I thought I was in the ER but I was on the floor of the hospital. Least I knew I was in the hospital.
I have therapy tomorrow and I will discuss my past abuse which is going to be really difficult as I am having PTSD symptoms that are really bothering me. I had a medical procedure when I was little and I keep having intrusive memories about it. I don’t know what kind of test they were doing. I just know I was screaming for my mother and they had to restrain me as I was fighting them severely. I was totally freaking out. They had to sedate and anesthetize me. I was so distraught. Then I felt like my mother abandoned me and I was really angry at her. But I couldn’t tell her I was mad at her. I was a kid and you just didn’t say that to your mother. I have no idea if this created the voices. I was talking to them the whole time I was up and my thoughts were really fucked up. I had to take another antipsychotic to quiet them down. They were still quiet this morning and I had a hard time thinking. When they are quiet I find it hard to function. I need the “background noise” as I feel empty when they aren’t there. I also feel alone. They have been with me since I was five.
I am not really feeling anxious. It is more like agitation. I want to keep moving but don’t feel like it. I am really restless. I wanted to write to see if I could calm down as that sometimes works. Last night I wrote like three pages in my journal and it didn’t help. I just got more keyed up.
I really, really hate when you tell someone you are hearing voices and their immediate response is to tell them to shut up, like that fucking works. It irritates me so much. Like don’t you think I have tried that? Fuck. People have no clue what I go through or really anyone who have hallucinations, whether they hear or see them. I really don’t know what the “right” response would be but I know it isn’t “tell them to shut up.”
I think I am having side effects of the trilafon I took last night to quiet the voices. It feels similar to what I have experienced when I was on abilify. I probably need to take an Ativan to shake off the side effects. Living with this shit is so fucking hard. I am so tired of side effect of my medications. I know the risks outweigh the benefits but dammit, I hate the shakiness. I hate the constipation. I hate the brain fog and cognitive impairment.