Tag: disability

Mr. Misunderstood

by Midnight Demon, posted in Bipolar Disorder, blogging, chronic physical pain, depression, mood disorders

Mr. Misunderstood

I have been feeling misunderstood and paranoid lately. Voices have been ramping up as well. I emailed my pdoc but haven’t heard back. Ten bucks says she’ll says “come in” meaning hospital. I don’t want to go to the hospital. They won’t be able to help me feel safe in my own skin. I know it’s just the stress of current events and my PCP leaving that has me stressed out. Every time I am stressed, I become psychotic. This song best reflects how I feel. I plan on getting his album next week when I get paid. I have previewed his songs on his new album and I like the tone of it. I am not a big Eric Church fan. There have been only one or two songs of his that I like. Springsteen is one of them. I forget the name of the other one I like. Something to do with hometowns.

I woke up at 0130 this morning after going to bed around 2000. I took a shower. It was the first time taking a shower since my mother cleaned it and I slipped a few times. I think that is why my ankle is hurting me. I have to fix the laces of my sneakers to the “loop” method that my physiatrist did. My foot kept slipping and I think that is why it is hurting. I also need to get another ace brace as the one I had is missing. It also is too tight because my foot is so swollen. I think that will help. I need to do something to try and keep it stable. I have been bad wearing it, which is why the thing is missing. I know it’s in my room, hiding under something. When I am not looking for it, it will emerge.

I am very tired. I had two caffeinated drinks today, a coffee and a mocha. It’s not helping the tired feeling. I think I am getting a migraine. I have been feeling nauseous the past hour and had a low level headache for most of the day. My vision keeps cutting out on me every so often so I know something is brewing. I wish I could sleep for hours and hours. It’s so painful to be awake these days, either physically or mentally. I really feel out of sorts when I don’t sleep. It makes everything worse, the depression, the voices, the paranoia. I only feel safe if I am in my house. Today, while on the bus ride home, I know the woman next to me was reading my thoughts and cursing me because I was sitting next to her. The bus was crowded and I had to sit. I can’t stand because of my ankle. She doesn’t know this. She just thinks I am fine, like everybody else. I don’t walk with a limp or give any indication that I am disabled. It just sucks that I am treated this way, even if it was the voices saying all this stuff. I bumped into this lady before. She is a high-strung person. Very anxious and pushy. She makes me nervous just being around her. I guess that is why I felt all paranoid around her. But I also felt like every person was staring at me on the bus. I hate crowded buses.

If I have to go in the hospital, which will only be if the voices get worse, I will try to wait till after Thanksgiving, even though the holiday is causing me a little bit of stress. We only have one working stove in the house because my sister’s kitchen is being renovated. Going to be interesting to see what gets cooked and what doesn’t. I doubt my brother in law is going to make his gravy. It sucks anyways but you can’t tell him that. He thinks his cooking is superb, just like my father. Unlike my father, he works his ass off to provide for his family.

Talked with my therapist today about one of the blogs I wrote. It was hard to tell if she was concerned or not. I don’t think she believed me, like the rest of the blog world. I guess that is why I am feeling most misunderstood. If she doesn’t believe me, I don’t know if I can trust her. She kept asking me if I was taking my medication. I am, said it over and over. Then she wanted me to add some meds and I was against that. She asked if I sent the blog to my pdoc and I told her I did but she didn’t respond like I knew she wouldn’t. Maybe she hasn’t read it yet. I never know. I wish I had read receipts for email but I don’t. I used to when I had work email. I sometimes miss the perks of working at an academic hospital.

Today was the first day that things were normal and not strained between my therapist and I. She did bring up getting an adjunct therapist but I told her I really don’t think it will work out. I would seriously need a solid referral to someone that is taking new patients and will be able to deal with my difficulties, as well as take my insurance. I still don’t know how that will work out. I really would love to have sessions with the suicidal consultant I was seeing when I had good insurance. Now he doesn’t take my current insurance so I am screwed. I hate the new insurance but the hospital went with PPOs and I had no choice but to take it. The other plans offered my therapist didn’t take and I didn’t want to get stuck having to get a referral for all the doctors that I see.

I am going to try and go to Stop and Shop tomorrow but it depends on my ankle. Might have to wait things out with the paranoia as well. I hate the feeling of being watched all the time. It sucks.

Doc’s Rant

by Midnight Demon, posted in Bipolar Disorder, blogging, chronic physical pain, depression, mood disorders, suicide

Doc’s Rant

I received a letter today from my doctor’s office. Apparently, he is leaving the practice. I have worked with this guy for more than ten years. Now I got to work with someone I have never met. She is only interim until they find a replacement for my doc, but still, I have to work with someone new in dealing with my pain issues. I hope that she doesn’t give me a hard time about my pain meds and that I don’t have to have a three day supply because she is a “new” doc. My state just passed a law that all new patients on pain meds must have a three day supply of meds before becoming established. If that is the case, I am fucking screwed. I can’t survive a month on three days worth of pills. It’s not like I am technically a new patient as she is in the same practice as my doc but I will be new to her. I don’t know how this is going to work and it’s giving me tremendous anxiety. I feel like I should have killed myself last month so I didn’t have to deal with this bullshit.

I think I am going to have to make an appointment to see him anyways because my left eyelid is extremely itchy and dry. I feel like tearing it off, though I might just scratch it off. I don’t know if it’s dry because I have dry eyes or because I am chronically dehydrated. I know I am dehydrated because my pee is orange all the time. I just don’t drink a lot because I am afraid of peeing myself. I will usually have my 16 ounce coffee and then a 16 ounce drink, usually iced tea or lemonade with lunch/dinner and that will be all that I drink for the day. I might have more if I am thirsty but I never really get thirsty unless I am active. I will have sips of powerade when I take my meds. My night meds I tend to drink at least 4 ounces just to make sure I wash those suckers down. One of the pills I take is the size of a penny and I always have difficulty swallowing it so I always make sure to drink a lot to make sure it goes down. It’s usually the first pill I take so the others follow. I have a weird system of taking my meds but it works for me.

I don’t know what I am going to do with this new doctor. She doesn’t know me and I don’t know her. I tried looking her up on the practice’s website and of course, there is no information at all. I know she has been around the practice for a while because I have been at the hospital a long time before becoming disabled. I just never had her as a covering doc before, even if my doc wasn’t available. I usually got someone else in the practice. I like my doc because he is a good doc. He cares. Now I don’t know what I am going to do. If I don’t get my meds, they might as well sign my death certificate. I will die by suicide. The pain will just be too much like it has been tonight. I should be knocked out but the pain is still keeping me up. I can take another dose of meds in about an hour. I hated that I missed out on my sister’s party.

Someone gave my crazy cousin my number. She immediately asked if I had meds. That is one reason why I don’t keep in contact with her. She is looking for meds all the time, either to take or to sell. I can’t be associated with her. She is so pathological it’s not funny. I especially don’t like her because I told her about my voices and she made fun of me with her boyfriend one time. She is a jerk and always wanting attention. I hope she never calls me. I won’t answer the phone, now that I have her number. Just pisses me off because she used to be my favorite cousin and now she is scum. I am glad I didn’t have to deal with my father tonight. He is the last person I wanted to see today. I had enough of him yesterday.

My new favorite song is by Eric Church, Mr. Misunderstood. It is so fitting because I always feel like I am misunderstood. I even changed my Twitter name to the name of the song. I just hope the new doc understands chronic pain and is understanding. Otherwise, we are going to have problems. I really don’t want to have problems. It will just send me into a tailspin of depression. I am so nervous about seeing this woman. I haven’t had a woman PCP in years, not that gender matters. But the thing is, I just told my doc that I am transgender and that took a lot for me to tell him because I have been keeping it from him for at least three years now. And then he leaves? How am I supposed to process this??

Waking up Early and other things

by Midnight Demon, posted in Bipolar Disorder, blogging, chronic physical pain, depression, mood disorders, suicide

Waking up Early and other things

I have been up since around 0630. I got about five hours of sleep as I went to bed around 0130. I emailed my neurologist last night because I am running low on my medication for nerve pain. I don’t take it often so the refills have expired. Just got a response from her. As I suspected, I need to see her to get the meds. UGH. I hate dealing with her office staff. I could try and get it from my PCP. I see the NP the 26th so I will wait until then. I have enough to keep me going until then. If she doesn’t give me it, I will make an appointment to see the neuro.

I plan on changing my sheets today. It’s something that needs to happen but it always is a pain in the ass to do because of my back issues. I always throw out the back of my hip when I change the sheets. But then, I can stand too long and it will go out on me, too. I still haven’t gotten it checked out. It has been a problem for me for the past year. I took it out last Thanksgiving when I sneezed. It got better but then I sneezed after Christmas and it went out again. I have been in pain ever since. This time I am going to try and not keep so much stuff in my “office” side of the bed. That will make it easier to change the sheets because then I don’t have to keep moving stuff around.

I also want to work on the story I wrote a few weeks ago. I am loaded with good coffee so I hope it makes me want to write. I am trying to avoid going back to sleep so I had coffee. I won’t be going to the Square because I need to pick up my niece later today. But I need to change the sheets first. That is a priority.

I got a lot of views on my paper on the analysis of the song “How to save a life”. And most of the viewing from countries today have been from Ireland. I like that my blog has international readers. It means a lot to me to have readers from other countries reading my blog. Granted the majority of my readers are from the US. But today, Ireland is the top country. It could change over the course of the day. I love watching my stats because it’s fun. I learn through the search engine what readers brought them to my blog and then I can have a post about the search so that other readers, usually those with Cauda Equina Syndrome, can find my blog easier. My all time most read blog is my Knackered post.

I have therapy again today. I texted her with some things that I thought about. I got interrupted so many times yesterday with family stuff that I wasn’t able to write about it. I had started a blog with ideas and rather than sending it to her, I just texted her because it was easier. It was only a few things and it fit on a text. I hope that we can continue the conversation. After 14 years, it will be very difficult not to be in contact with her if we end. Our 15th anniversary date is in January.

Because I am feeling very hopeless and my therapist asked me to, I have put off the date that I was going to end my life. I feel defeated because now I will have to continue to live when I don’t want to. And because of the holidays, I don’t want to end my life then, which means I will have to see my next birthday. It was something I have been trying to avoid this past year. I wanted to stay 39 forever. It shouldn’t be so complicated, but it is. I hate living. It is such a damn struggle all the time. And the thought that I keep having bowel accidents doesn’t appeal to me for living. I have tried to deal with this stuff the best I could but I am so tired. I get no relief from the daily physical pain I have. I am tired of people telling me I need to lose weight when I don’t have the motivation to or the mobility to do so. I wish I could walk like I used to but I can’t. If I could, I wouldn’t be disabled from work. I know my job was stressful and it caused me to be very suicidal at times, but least it gave me something to look forward to every day. It gave me some purpose. Now I have none of that. Sure, I write but other than this blog, I doubt people would buy my book. It’s really depressing and powerful writing that no one sees or understands. It’s not a hopeful book. How can I write about hope when I don’t have any? I just think my death is the only way out of this misery that I am in.

Last night I was writing in my new journal. I was describing what I am saying right now. I might have to go into the hospital because I feel like I am going to snap. One more trigger and I am afraid I might go into constriction and then I will attempt to take my life. But I really don’t want to go there. Just the thought of the bullshit and my meds being split up because they don’t have the right tablet dose keeps me away. I take 12 pills a night. Last time I was in the hospital I had to take almost 16 pills. It was the same medication, but they didn’t have my BP med in a 40 mg tablet so they split it in 10 mgs tablets. That is four pills I had to take. I don’t know if they will have my other BP med in the dose. I would hate to take fucking another 4 pills for that, too. But there is no treatment while you are in the hospital. You just go to groups that are for arts and crafts, mostly. There is no psychotherapy going on in any of these groups or even in the meetings with your case worker. It’s just an adult babysitting system. Someone checks on you every 15 minutes and you talk with staff, which turns out usually to be better than talking with your case worker and psychiatrist. If I go to the unit I was before, that is how it is. If I go to another unit, you just get 15 minutes with the “team” and that is all. Sometimes you meet with your staff person, sometimes you don’t. It sucks. I rather just stay outpatient and struggle than be inpatient. Least I can have my electronics and not be watched.

Having a Crappy Day, Literally

by Midnight Demon, posted in Bipolar Disorder, blogging, cauda equina syndrome, chronic physical pain, depression, mood disorders, suicide

Having a Crappy Day, Literally

I woke up early this morning in pain. I took some pain meds and when I went downstairs to have my nutritious donuts, my brother in law came up with some dishes to be washed. He and my sister are renovating their kitchen and don’t have a sink to use right now. He told me my mother would be watching my niece as she didn’t have school today. Weird because they don’t have school on Monday either because of the holiday. So the kids have one long weekend. Anyways, my mother wasn’t up yet so I said I would watch her until her grandmother came and got her. While I got settled in the kitchen debating on making a burrito, my mother came downstairs and so freed me from having to babysit. HA! I knew I would be toast anyways as I took my pain meds and within an hour, I was. I didn’t sleep very good as I had weird dreams and then my mother screamed my name and scared me to death. Someone was at the door and she couldn’t go down because she hurt her other knee. So I get up and go down the two flights of stairs to someone that isn’t there. My niece had answered the door. Why the fuck she didn’t tell my mother she did is beyond me. I was so pissed I got up for nothing. So I go back up the two flights of stairs and my ankle decides it doesn’t like it so I am in pain again. I take another pain pill and go back to sleep.

I got up around noon or shortly there after. I had to go to the bathroom so I did. And then killed some time before getting dressed and catching the bus to the Square for coffee. I was planning to check out the price of chicken wings so I can make them tomorrow night or Sunday. I got to the Square and did my routine of having coffee and writing in my journal. I then went to the meat shop to check on the price of chicken wings. They only had small packages. I would need at least three or four to make the quantity I needed for the recipe and I didn’t want to spend that much on it so headed back to the bus stop to catch the bus. I then decided to go to Stop and Shop to pick up my prescription and get the rest of the ingredients needed for the recipe. Soon as I was approaching my stop to get off, it downpoured. So I didn’t want to walk in the rain as I didn’t have an umbrella. I knew it was going to rain today but thought I could beat it out. I was so close. So no chicken wings today. I will have to go tomorrow if the weather permits or if my sister or brother in law takes me. I would take either of their cars but I can’t drive them. They are big SUVs and I just don’t trust my peripheral vision to drive them.

So rather than wait in the rain for the next bus, I got off at the station to go home. I didn’t think anything was wrong. I got stuck in the down pour at the station and got pretty wet. Luckily, the bus came before I got soaked. And the bus had the AC on so it was pretty damn cold on the ride home. I just got to my house when it down poured again. I couldn’t win staying dry. Got in the house, changed and then felt like I had to go to the bathroom again. As I got up, I felt sticky and panicked. I didn’t pass any gas or anything while I was out so I was hoping it was something other than what I thought it was. I was wrong. I crapped my pants and didn’t realize it. That just made my day. On the anniversary of my CES diagnosis, I crap my pants. Just fucking wonderful. I really was pissed. I don’t know how long that crap was in my pants. I had no sensation of it until I came home. It’s possible I went while I was undressing. I don’t fucking know. I just know that it sucks. I feel ashamed of myself. I hate my therapist for keeping me here. I could die right now from embarrassment. Sure getting soaked by the rain is one thing but crapping your pants is another. I hate this condition. I should have killed myself 10 years ago so I wouldn’t have to be dealing with this today or any day.