Tag: disability

Sunday blog 23062019

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

Sunday Blog 23062019

I woke up with minor back pain that has only gotten worse as I moved around. My mother hasn’t been feeling good so I made her dinner and that was my breaking point. I can barely move and I can’t lay reclining on my back because my CRPS foot goes bananas. I am so uncomfortable. I did some more stuff today. I cleaned out a tub drawer that has come sheets in it. I washed them so I can put that back clean. They have been in there for quite some time so needed to be washed again.

I had a hard time sleeping last night. Around 330 I was listening to blaring music. Apparently, I was hallucinating because no one else heard it. I had texted my nephew to lower his game. He said the neighbors were arguing. I told him about the music and he said there was no music playing. Fuck. I almost always become psychotic when I am really stressed out. Seems last night I was stressed. I was up till after 4. I honest have no clue what time I fell asleep. I woke up briefly when my med alarm went off but I didn’t get up to take my meds. I took them around noon when I woke up. I honestly didn’t want to but my bladder said I had no choice. I still get the feeling that I am going to lose control when I stand. And today with the back pain I had pain going down my leg. I immediately started having intrusive memories of when I had cauda equina syndrome (CES) the first time. This time is slightly different as the back pain is mostly on my left side where the pain is going down into my left leg. This is the same leg I have the CRPS. I hope I haven’t shifted a disc or something. I am hoping it is just sciatica and nothing more.

My sister was out of the house so I had a peaceful day. We barely spoke to each other when she came home. It was strained but polite. We were worried about my mother as her speech was slightly slurred. I can never tell if it is the beginning of a stroke or her sugar about to crash. The symptoms are similar and I get freaked out. I had called my other sister to let her know because I didn’t want her to come home with an ambulance at the door. Then she would have gotten mad that I didn’t call her. She got mad because I called her and she wasn’t home. WTF I can’t win with these people. I think I am doing the right thing and it is wrong.

My CRPS foot/ankle have been feeling like it is being stabbed since I got up. It was probably because of not taking my ER pain med in the morning. I have no idea why I didn’t take it before going to sleep like I usually do. Maybe I just wanted to get up to bake cookies. I really did want to make these damn cookies but fucking back said no. I could barely stand more than five minutes without it flaring up. I am sad I didn’t make them but I am at the hosp on Thursday so I can bring them by to my psych if I make them on Wed when I don’t have any appointments. I have three this week, my psych, PT, and the therapist.

I finally broke down today. I started sobbing and couldn’t stop even though I tried. I really hope I don’t ugly cry tomorrow. I really don’t like crying but this is so damn devastating. I am so fucking angry at the institution. We both got screwed by them in our respective departments. I got forced on disability and she got forced out because she didn’t want a lower position. I really don’t blame her. I blame the fucking place for kicking her out after 30 fucking years. The fricken profession is short of child psychiatrists and they kick out a good one?? Makes me so fucking angry. I half don’t want my care there anymore. Too many bad memories there. But I really have no where else to go just like my home life.

Because my back is almost out, I am not risking a shower. I set my alarm an hour before I have to leave so I can possibly shower. I hate that the appointment is in the morning but I guess it is better than later. I just started drinking. I had taken my pain meds and within a half hour, my MP3 player played Eric Church’s Mixed Drinks About Feelings. It hit me hard and I felt like having a shot. Then I wanted another. I might have a few more. Then I took my night meds. I am in a don’t give a fuck mood. I am in too much fucking pain to care if I get drunk. Honey whiskey is so damn smooth. Hard to just have one shot anyways.

We don’t have to talk, I just want to hear your voice

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

We don’t have to talk, I just want to hear your voice

So I am going to try and crank this out as the Sox are playing and Luke Combs, Lady A, and Matt Snell continue to break my heart. This maybe long as there is a lot of stuff to talk about since I haven’t written in a week. So grab some coffee or something.

I’ve been battling a UTI (urinary tract infection) for the past week and a half. My pcp did not consult with me on antibiotics so the first course of treatment did not work. I finished on Sunday and Monday I had the foul smelly, cloudy urine again. I had called the pcp office but it was late in the day and no one got back to me. Tuesday I was able to get a hold of the idiot RN and told him my symptoms. I had an appointment with the new therapist and hoped he would get back to me as I was passing blood at this point. My results came back early afternoon but I got no call from my pcp or provider letter. So Wed I am hurting really bad. I am passing blood clots, blood, and mucus and it was extremely painful doing so. Bladder pain was terrible and I kept losing control of my urine as the urges to go were not to be messed with. At one point I waited a bit too long and thankfully had a diaper on because otherwise I would have had a puddle on my rug as I couldn’t even open the door before losing it. I was getting pissed (no pun intended). I called the office and the RN said that I did have infection (ya think) and my doc called in a prescription. Again my doc DID NOT CALL ME! I asked which one and I said I have no effect with that one I need to be on this one. Wed all I had to eat was some Ramen noodles. I didn’t want to eat or drink anything. Thursday I slept all day. I only ate when my protein bars came in. I had wanted to be up before my night meds but I wasn’t so the med alarm woke me from sleep. My mother too had called which annoyed me more than the phone alarm. I had flank pain but it was minor. I had 2 doses of antibiotics. I emailed my psych to ask her if I should go to the ER as I thought I was dehydrated. We fiddled with how much I was to drink but in the end my stomach only took 3 oz (90 mL). I then felt nauseous and I went to bed. My psych wanted me to get in touch with her today. I said ok.

5 am this morning, I woke up with worse flank pain and felt really lousy. It still hurt to pee but I wasn’t passing clots or mucus. I emailed my psych about this and went back to sleep after taking some Tylenol. I just figured it was nothing but maybe soreness from not eating and drinking anything. When I woke up to my morning meds, my psych had emailed back that I should contact my pcp as flank pain is not something you get with a UTI. Shit. I knew it wasn’t but I really didn’t want to go to the ER. I wanted to bake cookies. So I emailed her I would go to the ER as I wasn’t contacting my PCP again to talk with his idiot RN. I have no idea why good doctors have idiot staff. When I got to the hospital, I called his office just to let him know I was in the ED. Within fifteen minutes my PCP calls me and I tell him what was going on. He said that was the right thing and sent me on my way. ED ran tests but in the end it was to drink more (I laughed at this) and keep the course of antibiotics. OK. On the way home, I sent a message to PCP asking him to do some more urine tests to make sure the damn infection I have is fucking gone. I then sent one to my psych. She responded by asking what did they say. I told her and then asked if she wanted me to call her over the weekend. Our last weekend. I haven’t heard back, yet.

On Monday 17 June, I met with my psych. She told me some very bad, horrible news that has left me feeling numb but really angry at the institution we worked at. Her department wanted her to step down from whatever position and she said no. So they terminated her, June 30th is her last day. My last appointment with her is June 24, this coming Monday. I still have not processed it but I tried on Wed to write something. I knew it had been more than a few days since writing a blog. For the first time in almost 7 years, I lost my words. I couldn’t even begin to write about this and still am tearing up about it. I have been thinking about her and all we have went through. Wed night I wrote her something then couldn’t sleep. I didn’t go to bed till I don’t even remember the hour. Must have been late/early as I slept almost all of yesterday. There is no way in hell I could write what the last 26 years have been like in a paragraph or even in one long blog. I wrote two pages until my brain and emotions were fried. Then I kept fine tuning it. Adding stuff, fixing, punctuating, grammar, you name it. After the third go round I said fuck it and sent it to her with a PS saying that this might not be grammatically correct or something to that effect. In the email, I told her to open it at her leisure, maybe with a few tissues and I would bring a box on Monday.

She said I would be assigned another psychiatrist in the adult department, which so far I haven’t. She wants to have a Lamictal level drawn the next time I see my PCP so if he responds to the urine tests, I will ask him then. I have been preoccupied with her leaving and the UTI that I forgot. I tried not to break down though I did shed some tears. She asked if I could come in next week and I didn’t know what to say. She just shook her head yes and I said ok. The end of June is coming and it would be our last time together for a while. She said she is trying to find some other academic home and then when she gets sets up she plans on calling me. She said her email and phone number wouldn’t change (I am not 100% that is true. I know with me, I was cut off the day they let me go. They might have different stuff for MDs.) I thought of making her my marinara sauce, which I am still planning on doing on Sunday. I wanted to back cookies for her. I am hoping to do so tomorrow if I don’t have an all nightery with pain or emotions. Last night, I realized not only did I not have a copy of my second book on ANY of the 8 thumb drives I had, I also no longer have roots holding my tree up. It was a story I wrote that I don’t think I ever published on my blog. It was about my therapist and psychiatrist keeping me here. One of the roots said goodbye for reasons I still don’t know what they were. Now the other root is leaving me and I have nothing holding me up.

Tuesday was a bigger nightmare as I was supposed to meet with a new therapist. I was so fucking nervous because I knew if she didn’t want to take me on or I didn’t like her off the bat, I would have NO mental health services at all, none! So I went to the appointment and she asked me a shit ton of questions. I carefully worded and didn’t elaborate on anything that would lead to my suicidality. Least not until she said I was discharged from the psych unit and I immediately wanted to die. She asked if I was suicidal. I said no and then asked what would I end it when I leave here. I said no. Throughout, she kept on saying my psychiatrist terminated me and I must feel abandoned. When I asked where do we go from here, she asked what did I want to do, like she had no interest in seeing me ever again. That felt so welcoming. Mind you, when she went into the waiting room she called for someone with my birthname. So we didn’t exactly start off the right foot. I told her I had a three session rule and then I would decide if I would stay on or not. Though, if at three sessions I didn’t, there was no where else for me to go. She asked who I would call should I get suicidal and I said my psych and then it dawned on me, she wasn’t going to be there anymore and fuck, I damn near lost it.

I wrote to my psych and said the therapist said I feel abandoned and I said I didn’t. My psych responded saying I may feel that way. I wrote back I would if this was good bye and it is more of a see you later, or is it? She never responded back. Later that day, Luke Combs came out with the song, Even though I am leaving, and I just about lost it. It was perfect to all the stuff I feel about my psych. This cannot be goodbye.

If I don’t write next week, please know it is most likely due to emotional overload and cannot find the words to the hurt or whatever I feel. I see the therapist Thursday.

Problems fixed, sort of

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

Problems fixed, sort of

Yesterday I got a notification, again, saying that my bank was invalid to receive royalties from my books. I haven’t been paid since Feb. I have been in contact with Amazon about it. I was to receive a response May 19th, but didn’t hear anything. I emailed them again a day or two when I was home from the hospital. They still didn’t have an answer for me. I had re-entered my information and it still was “invalid”. Today I finally got a response that whatever the issue was, it was now fixed. I should receive my royalties in the next pay cycle, which would be the end of June, I hope. I don’t think it will be much as I haven’t sold that many books. Maybe 1 book per month, though while I was in hospital, a few patients bought a copy of my memoir. I had 3 sales, which is the most I have had in a while. I won’t get royalties for these sales until next month (which won’t be more than $10).

My UTI is clearing up though the urinary pain pills I took are still making my urine orange. Because of this, I am unable to tell if my urine is clear or cloudy. It is dark, but think that is because I barely had anything to drink yesterday. I slept all day and wanted to today but forced myself to get some coffee and eat something. I had a pop tart. I am so off kilter today for some reason. I keep losing my train of thought and remembering how to spell words. I really have to think which sometimes is just blankness.

I had to move the stuff in front of my window because rain was coming. Then I decided to put my recycling in a bag and my back said fuck you. I still did it but now I am still hurting. I hope it goes away so I can shower. I had a box of trash bags but I can’t seem to remember where I put them. I am so frustrated. I needed to find my ethernet cable as my wifi is slow with the internet. I can’t stand waiting for a page to load. The ethernet is a little bit faster. I don’t have cable or FIOS (type of fiber cable). It is too expensive. I looked into cable and for every box you needed for TV, there was a price for it. The bill would be more than $200 and I can’t afford that. I might look into a different service provider. My nephew was telling me there was a company that just did internet services that was cheap and had high speeds for downloads/uploads. I am going to see about it.

I haven’t been eating much past few days. Yesterday I just had a bowl of cereal and then went back to sleep. Today I had coffee as I had a headache but it didn’t clear up the spaceyness I feel. I had a pop tart with the coffee but couldn’t finish the second one. I am hungry but I don’t know what to eat. Have a few options, either an egg and toast or Ramen noodles. I don’t think I have anything else that is appealing. I have the deep dish pizza from Red Baron but it has lost their appeal. Doesn’t help the last few times I have made it, I didn’t make it right or burned it. I got to go to the grocery store as I am running low on my Gatorades. I sort of got used to taking my meds with water but like to take it with something sweeter. I also need coffee as I got just one bottle left of the iced Starbucks. My K-cups have been used either by my sister or nephew. I am not happy about this as they don’t replace it. Hoping Saturday I will make a marinara sauce as I have been craving spaghetti. I might get the premade meatballs while I am there. Only trouble is they don’t reheat well. I will eat them cold though.

Tues I have an appointment with a therapist. I am kind of worried though. I had some questionnaires to fill out. In the appointment box, it says “triage.” I am not sure if this appointment is for an evaluation or not. I don’t want to be evaluated and told I need to wait to see someone else or if this is just because it is our first appointment or what. I am already nervous about this and now I am more nervous. I have waited nearly three months to see someone. I would fricken hate if this is just another “you need a different level of care so here is a referral number.” I will lose my shit if this happens. Then when I calm down, I will not go back to therapy. I will just see my psych and that will be all. I see my psych on Monday and will tell her this. I am tired of being turned away from nearly every therapist within a five mile radius of my house.

more thoughts on my blog

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

More thoughts on my blog

A reader emailed me and I thought about what she said. This is my blog and last time I checked, calling someone stupid wasn’t breaking any laws. So on this note, I have decided to keep my blog open, not password protected. If that monitor person wants to continue reading my blog, there is nothing I can do to stop them. I do know that my stats seem to go up when I post so even if I don’t know who you are, I know you are reading.

I’ve had a horrible day so far. My middle sister has been cleaning my mother’s room. When I got out of my room to take a shower, she said that I had to go through my stuff so she can move her things there. I also had to move the stuff in the living room so she can also move her stuff there. I took my shower and found that the shampoo bottle that had a pump on it, she threw away because the bottle was empty. I was so fucking pissed. I called her an asshole and she got pissed. I don’t care. I am tired of her thinking she is the only person living here and has to make the house the way she wants it to be. I got really suicidal after our exchange. She just doesn’t realize how upset she gets me, like I don’t matter at all. Yesterday she left crap on the stairs, which made it hard for me to go down. I really don’t want to fucking fall and she doesn’t get that my balance is off. She also placed a bin right at the bottom of the stairway, which I kicked out of the way. I got so mad. I texted her, in a neutral way, and got no response. I have no idea if she has blocked me or what but every text I send her, she doesn’t respond to anymore. I sick of her shit. I emailed my psych to let her know what was going on. After the disaster of a family meeting via phone, I really don’t know how to get through to the dumbass. Yet she has the audacity of calling me selfish. Such a projection.

After my shower, I made something to eat. My foot started bothering me but I still did what I had to do. By the time I made it back to my room, it flared up big time. My foot and ankle are competing as to who is going to hurt more. I so want to nap as I have been up since 0630 but I really don’t want to. Will be hard to anyway as there is so much light in my room due to my window being open. I have a hard time sleeping when there is light in my room.

Never had a nap. Just had dinner with my mother. I made hot dogs and beans. My foot wants to fucking kill me. I hate it when simple things cause me pain. You think I was walking miles. Speaking of walking, I really need to get my AFO (ankle foot orthotic) adjusted as my foot keeps slipping. I think I have a bit of atrophy plus with the weight loss, I don’t think it is fitting right. I hate that I gained about 10 pounds while in the hospital, mostly because I was eating three meals a day, but they were huge dishes. I tried to eat a salad with chicken or just a turkey sandwich but it wasn’t always possible because I would forget to fill out the menu for the next day. Sometimes I would skip breakfast as they served eggs at least every other day and I don’t like them. I rather make it. I am just picky like that. The rest of the days they had French toast, which wasn’t bad but it was filling. Since being home, I have been having much smaller meals at least twice a day. Yesterday I just had steak and then a protein bar because I was in too much pain to go downstairs to make something. I forgot how painful stairs were.

I got to fill my med boxes for the week. The doc in the hosp increased the Lamictal and I think it has finally improved my mood somewhat. I kind of feel like what I was before I was in the pit of doom. I am just more tired and on a “day” schedule. I went to bed early, or tried to before pain kept me up till at least 1 am. Then I woke up around 630, only because I had to pee. I am glad I woke up because I leaked. Both my pjs and underwear were wet as I didn’t wear a diaper. I bought a much comfortable brief style while in the hospital because they didn’t have a good kind. I should have brought my own but didn’t think I needed them. Now I know better.

Neil Gaiman’s Good Omens came out the end of May. I got it free because I am an Amazon Prime member. I downloaded the episodes to my Kindle, but I still haven’t watched it yet. I keep meaning to but pain has been a chief distracter. Usually watching a movie or something helps but I don’t have the attention span lately. I can watch short videos and then I get bored if it is more than 10 minutes. I think the only thing I can watch for longer is the Rachel Maddow show. I haven’t watched it in a long while because it was just annoying me. She seems to say the same thing in three different ways over and over. Then she goes on only to come back to the original question or point. I had to take a break and haven’t watched since. Maybe I will watch one episode of Good Omens later tonight, if my pain doesn’t get worse after I do my med boxes.