Sunday Blog 28 April 2019

Sunday blog 28 April 2019

I had slept most of the day and woke up not knowing the day of the week it was. I have been having an awful last few days. Yesterday I spent the day in bed because I didn’t go to sleep till 4 am. I got into a fight with my sisters around 1330, which flared up my pain and sunk my mood so low I didn’t think I was going to survive. Today I am in the same awful mood. I had met with my psych Friday and she said I needed to be in the hospital but I told her I didn’t want to be. She stressed the word “need” again. I gave an explanation that I was not sure I could trust my family with my things while I was inpatient, I didn’t think it would help matters, and would only annoy me all the more. I remember my last hospitalization caused me more pain than it helped alleviate. Hell, the night before I got discharged, I was in a wheelchair as my ankle went out me. I had so many flares because even though there were no stairs, things weren’t exactly close. It was a walk to get from my room to the kitchen or group room. Walking several times a day hurt me and my pain flared up at night. I won’t want to go through that again, especially when I don’t have my meds by the bedside. I will be at basically the mercy of the nurse to dispense what she/he could. I also doubt with the new laws in place, I can get my pain medication like I can. I don’t even know if psych hospitals can prescribe pain meds anymore. I really don’t want to be admitted to find this out then be screwed for three days until I can be discharged.

Plus with my mother constantly being in the living room now, it woud be extremely hard for me to leave without her knowing. I mean if I bring down a big backpack it will raise some eyebrows. So I won’t be going in. I swore the last time I was discharged the only way I would be admitted would be if I failed at an attempt. I am close to attempting any day now but I only stop because I put time between me and the attempt. I am hanging off a thread right now and I don’t know when that thread is going to break. I got into another row with my mother. I had wanted to go through some stuff in my room but after that argument, my ankle pain returned. Seems like whenever I get frustrated and angry, my pain increases lately. Stress can cause a flare when you have CRPS and I have been stressed to the maxed.

I am seeing the social worker tomorrow. She is just a social support right now until I see a therapist, whenever that may be. I have so many worries right now. My friends have been great listening to me but I worry I will be too much for them. I am worrying the crap out of my psych. It was one of the first few things she said when I saw her on Friday, not like I haven’t given her anything to worry about. I sent her a message last night that I wasn’t going to email her anymore yet I wanted to today for some reason. I held off. I think I am just going to write on paper what I want to send her and then it will be out of my system. I don’t remember half of what I tell her and often have to read the sent message as I am not sure I sent her something and what it entailed. I know when it is bad when she calls me when she gets it. I paged her the other night around 9pm because my mood was horrible due to pain being really bad. I just have not been in good space since the end of March. Honestly have no idea why or how I am still alive as my suicidality has been up and down like the weather. I seriously thought last night I would end it. Only thing keeping me from doing it was being in my room. I know that sounds dumb but as much as I have animosity toward my family right now, I don’t want them finding me dead. My middle sister really needs to stop going off about me in front of my mother. I don’t understand why she just doesn’t say what she wants to in front of my fucking face. It’s not like I can’t hear her. She is screaming so I can hear her. Just because my door is closed doesn’t mean sound doesn’t go through. I am so sick of walking on eggshells in my house. I am damned if I do and damned if I don’t. And the stress of it is causing me so much pain. I think the new dose of the pain meds is helping now that I remembered to switch out the lower dose for the higher dose. I woke up one morning and was wondering why there was a blue pill in my box rather than the red one. I am such an idiot. Today was probably the first time in forever I woke up without serious pain. I am in pain now but I think it is only because of the earlier argument with my mother. Hope eventually I will stay at a 2 or 3. I know the pain meds won’t 100% take my pain away but at least it will be tolerable.

I am going to pack a bag just in case I need to go in the hospital. I am not sure where I will keep it. I don’t want to lock it in my room where my sisters can’t bring it to me if I don’t go in on my own. I got to be more vigilant about locking the door when I leave so no one does go in my room. It is my only haven right now. If I do decide to go into the hospital, it will have to be after Wed when my next shot is scheduled. I don’t want to risk missing a dose due to stupidity on the floor. It might take more than a day for all my meds to be worked out (hoping my pain meds won’t be one of them). I just hope one of my pillows can be packed in the bag. Hospital pillows suck.

bunch of worries

Bunch of worries

I woke up at 6 am because of a headache and my foot hurting me. Always nice to wake up in pain, not. I couldn’t go back to sleep. I kind of wanted to but yesterday I did and I felt like shit after so I decided to stay awake even though I am sleepy.

I see my PCP today. I have swelling on my leg that has now spread to my shin. It is hard as a rock and if you press on it, it is painful. I am not sure my increase in standing and moving around is the cause or not. It sort of feels like it did right before I was deemed disabled by my work. With having nothing to do, I rested it and the muscles/tendons calmed down but the pain in my ankle and foot remained. I have no idea if CRPS is spreading up my leg or not. I have raised the issue with my neurologist who blew me off. I also have a new swelling just above my ankle. I am worried about all of this. Plus my review of my LTD paperwork that I will be giving to my new pcp to fill out makes me nervous because he doesn’t know me well (only seen him one time) and here I am telling him what to write, or at least giving him stuff about what my symptoms are and everything.

I had my appointment with the social worker. We talked about things and a little about my suicidality. She asked me an odd question. She asked how do I think I will die, whether it be peacefully or what down the line. My first thought was “are you kidding me?” Did she hear that I was suicidal and currently contemplating when I will carry this out? I told her I will die by my own hand. I don’t know when that will be (hopefully soon but didn’t tell her that part). She then asked if I will see her next week. She gave me the option to cancel. I guess she doesn’t want to be committed to seeing me as she is just filling in until I have someone, which I am not sure when that will be. She has told me the psychiatrist for the practice has taken my information and is seeking out a psychologist for me. In the meantime, I am planning my death because it is what I do. Doesn’t mean I will act on it. I just like having it because it has always been my back up plan. She understands that it is an escape for me.

After my appointment with the pcp today, I am to call my psychiatrist. I have no idea if I will. Last time that she wanted me to call, I was so upset that I didn’t want to talk about it (it was with my previous PCP, who was a dipshit). So we will see how it goes. I weighed myself yesterday and if the goddamn scale is right, I have gained about eight pounds in a few days time. I haven’t had a bowel movement in more than a week now. I hope that isn’t why my weight has mysteriously gone up. But the scale could be wrong. I will be wearing sweatpants today instead of jeans so I can have a better weight. Of course, medical scales always adds pounds so I am not sure what the hell I am. If it is greater than five pounds, I will be getting a new scale.

I have been finagling the bagel over my bills, which I need to pay tomorrow. I have been going up and down with my grocery bill. I put stuff in my cart and then when it comes down to crunching numbers, I take them out. I had bought stuff to make my chili cornbread casserole dish that I love, but I went to the store yesterday and bought the stuff. I made it for dinner last night. It came out so fricken good! I will have it for dinner tonight when I come home from my appointment.

I hope my psych will be okay in just calling her today. I see her Friday and as much as I don’t want to see her, I unfortunately have to because I need refills on my meds. I also need my medical meds refilled so when I see my pcp I have to tell him. I hope my nerves don’t get the best of me and I forget. I also need to call the stupid pharmacy to see if they have it in stock. If not, I will call another pharmacy until I find one that has it in stock. I only have one day supply left so I can’t wait more than a day to get them in. Just hope I don’t have to go outside my town to get them. That will really suck.

I am getting sleepy. I think I will make a cup of coffee. I don’t know if I want to go downstairs as my mother just went down. She uses the whole kitchen counter to make her breakfast and I have to go around her to get what I need. I hate that. I am grumpy until I have had my coffee. I am not sure if I will have something to eat or not. I won’t be home till at least 5 pm or so as my appointment is at 3pm. I generally like late appointments but it just interferes with the damn bus schedule. Today I have to leave the house at 1230 or I have to wait till almost 2pm for the next bus to the Square. It really sucks that it is more than an hour for either bus to come. I hate the new schedule so much. But because of the stupid extension of the train line, the bridge is out so the bus has to go through a detour to get to the square. It is kind of faster as there is less traffic, unless we get behind another bus (there are two other buses that share the detoured street). I am glad that both buses that come to my street go to the square now, but the times are all screwy. I hope it isn’t going to stay that way until the bridge is rebuilt.

midnight demon writes again

Midnight demon writes again

It is about half past midnight. I just had something to eat. I tried making myself a deep dish pizza for dinner and burned it pretty bad that it was hard as a rock. I lost my appetite and so haven’t had much to eat today. I knew if I didn’t eat, I wouldn’t be able to sleep. But turns out, pain is keeping me up anyways.

The part of my leg that is swollen has gotten bigger. The day before it was the size of my palm. Now it is the size of my hand. It for some reason, became really painful after I had stood for a while to clear out one of the shelves of my bookcase. I went on my bed to relax my back as it had started to spasm. Next thing I know my lower leg down to my foot was in such intense pain, I couldn’t breathe. I started to have an anxiety attack. I couldn’t touch my leg where it was hurting and that was a bad sign to me that made me panic even more. I just lay there trying to collect myself and grab the pain bottle to take a pill. I think that was harder as I had to move to do so. Half hour later, pain was starting to subside enough I could touch my leg and that is when I notice the swelling had spread up my leg. If I was panicked then, I was more so now. I didn’t know what to do. I couldn’t stand and walk anywhere as the pain was so great. Even an hour later when I had to pee it was painful going down the stairs and using the bathroom. I had talked to my niece and lost my voice. I sounded like a goddamn squirrel. No idea why. No matter how many times I cleared my throat, it sounded off. Fucking puberty.

Anyway, I talked to a Twitter friend and she wanted me to go to the ER. I texted my sister, but she wasn’t home. Fuck. There goes my ride. I wasn’t about to take the T anywhere. I took an Ativan and once that kicked in to take my anxiety away, I calmed down a bit. I also emailed my psych to let her know what was going on. I decided to try some diclofenac gel to try and ease whatever inflammation there was and see if it helped the pain. As I was ready to apply it, my psych emailed me back to keep her posted and let her know if I go to the ER. I am hoping I don’t have to because it is Easter and I will have a super long wait for something that really isn’t an emergency. I don’t have redness or broken skin oozing fluid. I just have a painful lump on my leg. I see my PCP Tues and I hope I can hold off on ER visits until then. I started thinking about this. The pain was similar to what I was experiencing prior to my dismissal from work, basically telling me I was disabled and couldn’t work. The time off gave my leg some much needed rest time. I have been walking more than I have been the past few weeks, as well as standing longer than I usually do. I also have been trying to do some balance work my PT wants me to do, which means putting some weight on my left leg. I have no idea if that aggravated the tendon that gets inflamed when I walk too much because I am compensating. I knew if I went to the ER or even an urgent care center, odds were they would just refer me to my pcp for whatever. They might do x-rays and an ultrasound to rule out a blood clot in my leg (highly unlikely) but that would be it. And the ultrasound would be on my calf, not the area where the swelling is so not useful at all. I am sure my pcp is not going to be able to figure it out and I hope that the weight loss/loss of appetite and this swelling is not related.

So the leg pain finally subsided after the diclofenac but then my veins started popping and my foot felt like it was being crushed so I was, once again, in a flare. This is day 2. My thoughts immediately went to why the fuck am I still alive. Then I think of what my psych said and I fucking hate her. Hate her because she wants me to live and she is fond of me. I looked straight at her when she told me this so I know she wasn’t bullshitting me. She genuinely meant what she said. I don’t think that I am meant to do something great. Yes, I could write another book. But goddamn it, I am not a fucking writer. Yes, I write blogs. But that is what I do because it helps me and possibly others. I know I don’t get as much feedback as I once did but fuck, my stats tell me someone reads my blog every day, even if only 8 people do.

Pain has been my nemesis. It causes me to be suicidal in an instant. Then in the morning, I am usually okay and feel better and am no longer want to end my life. But I am not at that stage right now. I am in the suicidal moment where I want to do what I want to do to end things. Except I can’t. As much as I have this fucking deep surging urge to do it, I do not want a family member to find me in that state. It is the only fucking thing keeping me alive at this time. Sure my family pisses me the fuck off so I wouldn’t care if they found me. But something, and I don’t know what, keeps me from acting on my urges. I can think about them all I want, fantasize all I want but when it comes to times like this, I am so fucking on the edge of live/die that I just get so frustrated that I don’t do fucking shit. I just ponder some more. Fantasize some more. Then I am reading a book about wills and realize I didn’t sign and date it to make it official. FUCK! I don’t remember where I put the notepad I wrote the fucking thing on. This is pure agony. The mental agony of going through living vs dying and being in so much fucking pain you want to end your life. This is the life of the midnight demon. Always until the urge to act prevails.

lots of stress

Lots of stress

I have been in a flare since 10 am yesterday. My malleolus (ankle bone) had been feeling like it was being smashed with a hammer. It was unreal. By like 3 pm, I had enough and took something for the pain. I had to call my psych but she said to call after 5. I didn’t want to dope myself up and be drowsy when I talked to her, so didn’t take anything else but the pain pill.

I checked my email and I had something from my long term disability (LTD) benefits. It was there yearly “are you still disabled even though we have determined you are permanently disabled” forms for my doctor to fill out. The problem is, I have a new doc that doesn’t know me or my condition with how bad the pain is. When I see him, I am not in horrendous pain, my ankle isn’t swollen, my veins are popping giving my skin a bluish color, and certainly not being affected by my sock being on. So I filled out my portion of the form. Now I am writing up a word doc of what my PCP should write in the paragraphs and then have him sign it and then fax it to where it needs to go. If he wants to add notes or medical record of events. I did put in that I had a sleep study done which shows that I wake up in pain and also that the bone scan confirmed that I had CRPS in my bones. The whole thing has caused my stress levels to increase which didn’t help my flare.

I paged my psych a little after 5. She called me like an hour later. We talked and she insisted I see my PCP as she was concerned about my losing weight. If it was because I just wasn’t eating, she was okay with that but if it is something else, he should work it out. I am to call her after the appointment to let her know how it goes and I can’t weasel my way out of it. Damn she is being stubborn with me on calling her. She has the “tone” and I have no real choice of going against it.

My pain level was still the same so after I got off the phone with her, I loaded up on meds. I took my night meds around 8 and was hoping to be asleep by 11pm. I was talking with someone on Twitter when my laptop was really hurting my leg. Last night I noticed some swelling near my shin. I have had swelling there but it was more toward the side of my leg not near the shin. And it is a good size swelling. I also have swelling just above my ankle joint that is kind of near the malleolus but above it. Add in the weight loss, and now I am nervous that something is going on. I emailed my concerns to my psych about 10 or so. 11 came and I was going to go to sleep as I was really drowsy but my damn fucking ankle said hahaha nope, not happening. Now I got medical stress on top of my other stress. I have been suicidal on and off with this flare. Mostly, I have been wishing myself dead. It hasn’t worked yet. I have no idea who has the wishing power. Maybe it is in the stars or something. I don’t know. I just know I don’t want to be here anymore but without acting on my plan at the location I prefer, it just isn’t going to happen.

Because my flare was so severe, I couldn’t have my ceiling fan on as the airwaves were bothering it. I couldn’t get comfy either, which annoyed me. If I have airwaves bothering, soundwaves were next. I needed to listen to music as I put on earbuds and the vibration went away. I had no idea how much the sound was affecting my pain. I charged up my Bluetooth headset as the earbud things are too big for my ears so kept popping out. The sucky part of the Bluetooth is that it takes around 4 hours to fully charge and does not work while plugged in, even on a wire. So I was screwed and only could use the earbuds.