Tag: CRPS

Organization and Sleep Loss

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

Having a hard time sleeping. My family members and my bowels had me do the stairs repeatedly the last few hours. I am hurting big time. I think I might have to go to the bathroom again as my bladder is sending me weird signals. I went an hour ago so I don’t understand why I would have to go again as I didn’t drink anything except a sip of water to take some pills. It is so frustrating living with Cauda Equina syndrome when your body functions are dictated by guesswork. I think the Imodium has settled the gas and loose stool that I had been having. Don’t know the cause of that. I think it might have been the milk that I had earlier tonight. Sometimes milk causes me to be intolerant. I don’t know why as I can drink a latte fine, hot or cold. Just doesn’t make sense to me.

I did some research into the suicide stuff I learned today. One of the articles that looked promising was just a trial protocol that didn’t have any information on it. That got tossed in the trash. The other article was about evidence based practice that helps suicide prevention. I haven’t read it yet as I was discouraged from the other article/protocol that I read. The slightest things have been bringing me down today. I did see another article from Jobes on CAMS and inpatient treatment. I will read that later. I need to print it out and I don’t want more stuff on my bed as I am trying to clear it off. I was able to clear one corner of my bed. Now I just have to throw my clothes some where. Maybe I will throw them in a hamper and I won’t see them till next summer (they are summer clothes).

I was going through today’s tweets about the suicide summit and found an interesting article about suicide and vitamin D and a protein called hCAP18. I got very excited as I haven’t seen that molecule since my research days. Unfortunately, the slide didn’t say very much and I really would love to know the specifics and how they tested it and where. The slide also said vitamin D receptors so now I am really curious about this article. I tried Googling it, but got no where. I don’t think it’s in print yet. But I want to talk to the guy and see if he can share more information about it. I tweeted the person to see if he has an email or Twitter account that I can contact him.

All this research and I became awake. I also was looking for therapists in my area. I wish suicide was an area where people were focused on but nope, not a category. Some of them didn’t even have mood disorders as an area of specialization, which I thought was odd. Most people that seek out therapists are going to be depressed or have anxiety issues of some kind. I hope that I don’t have to call someone. I am hoping my therapist reads her letter before our appointment. I will be disappointed if she doesn’t have time to read it. I’ll also be really sad because it will just mean that our time has come to an end. I can’t keep playing these “games” anymore. I just can’t. I am tired of struggling with a therapist that is becoming more and more like an airhead or just playing stupid.

While going through my files, I realized I didn’t back up everything like I thought I did. I have a lot of files that need to go on my thumb drive. It sucks because I don’t have the motivation to do it. It won’t take long, but I need to make a new folder and figure out where I am going to place the folder in my old files so that it’s all together. I still need to type up a bibliography of the folder I am collecting for the hard copies of these files so I know where they are. It’s work and I know I have time to do it. It is tedious and I just don’t want to do it. But it needs to be done so I don’t go crazy looking for the damn thing when I do need it. I have hard copy files all over the place. In my room and office. They need a central home where I don’t have to look in three different places to find them. I should organize all my CAMS articles in one place so it’s easier. One day I will do this. Not now at 0100 when I need to sleep.

While I was having bowel issues, I was thinking about how I would kill myself if I crapped my pants again. I have loose stool so it is a possibility. I just can’t go through the humiliation, again. I am already feeling like a loser because of what happened the other day. I wanted to go out today but I have a feeling my ankle is not going to allow it. I might be able to get to Walgreens and pick up my meds, but that will be the only trip. I doubt I can go to Starbucks. The buses are running on a normal schedule despite it being a holiday (Columbus day in the US).

Yesterday was “National Coming Out Day”. And I didn’t come out. I figured why bother. Both of my sisters know I am transgendered yet still call me their sister, instead of brother. There is no way I can tell my mother. I still fear her throwing me out of the house, or her not believing me. That will hurt worse than being kicked out of the house. I just hate myself big time every time I think about it. So I try not to think about it. Then I think, why isn’t there a national coming out day for heterosexuals? That is what bothers me. People just assume you are straight unless proven otherwise. It sickens me. I remember not too long ago there was suicide hotline that was just for trans people and some idiot got all high and mighty saying it wasn’t needed because we were all people. Really? You think it’s easy coming to terms that you are a male trapped in a female’s body or vice versa? Fuck you, you have no idea what the hell you are talking about. Sometimes when you are suicidal you need someone that knows that you are going through to help you through what crisis. Not someone that is straight and has no fucking clue. Because empathizing just isn’t going to be enough when you are dealing with someone’s life.

writing continues

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

Writing Continues

I woke up around 0630 and got to work right away. I worked on my story that I wrote up the other night. I finally typed it up and added to it as I did so. It felt good to be productive before having breakfast and coffee. I had my breakfast but I didn’t have cream so I walked up the street to get it. I was completely exhausted by the time I came back home. Mind you, I wasn’t gone for more than twenty minutes. I am glad I opted for going to going out rather than showering. My ankle is having a fit and a half for walking and going up and down stairs. I almost took a tumble yesterday and in balancing myself, I had to put my weight on my bad ankle. It hasn’t been the same since. But it’s not terribly swollen. It just hurts more.

I worked on my paper. It’s a little more than 500 words but there is plenty of room to work on it. I sent it to my psychiatrist but haven’t heard feedback on it. I am glad to work on something. After I typed it up, I just let it sit for a bit. Because it isn’t finished, I didn’t blog it. I am going to print it out and see how it looks and maybe go over it tomorrow after therapy. Course, it all depends on how my ankle is doing.

I have to go to the mall sometime this week to get some clothes for a wedding I will be attending in two weeks. None of my dress clothes fit me anymore because of the damn weight I have gained. I am going to try looking online first before actually going to the mall. I might have better luck finding my waist and a 29 length. Course if my ankle doesn’t calm the fuck down, there won’t be a wedding to go to.

I am so pissed right now. My fucking cousin called me because my mother had grocery bags. I told him I was busy and he just played it off. That is what pissed me off more than anything, like my writing is just playing. Sorry buddy, but it is my vocation, you jerk. I go down the second flight of stairs and my ankle acts up. I can’t put any weight on it. Fuck. I shouldn’t have answered the damn phone. Then my mother gets out of the car and is in fucking pain. She won’t get out of the way so my cousin can get the stupid bags he refuses to bring up the one flight of stairs. He doesn’t have any physical problems. He just is a lazy fucking bastard. My mother tells me she bought me yogurt. It’s the light and fit kind, which I do not like. So she just wasted her money. Three fucking bags the asshole couldn’t bring up the stairs. I am livid. He does this all the time. He knows I am on disability because of my ankle. Does he fucking care? No. He only cares if I have a few extra bucks in my pocket. Asshole. He really is. Next time I am not answering the damn phone. Fuck them. Now I have to take extra pain meds because I really am hurting. No way I will be able to take a shower tonight. Thank you fucking cousin for the extra pain you brought me.

My therapist hasn’t answered my text and it’s getting late so I doubt there will be a session today. I don’t fucking care anymore. I am too pissed to talk anyway. I might have to take an Ativan to calm down. My neck is killing me from the stress of being so angry and not having anyone to yell at. I think I need a nap. My mother is probably going to call soon as I get to the point of sleeping to see what I want for dinner. So screw that. Hope she doesn’t want me to make dinner because that is so not happening. I can barely fucking stand. I hope I don’t have to go to the bathroom because that will suck having to go back downstairs. I am not hungry anyways. If I get hungry later, I will try and make the French bread pizza. I haven’t had lunch but I am still full from my late breakfast and the coffee killed my appetite.

I hope my ankle is better by tomorrow. I need to get out of the fucking house and seriously focus on my writing. It fucking sucks that I get no support from my family, just my psychiatrist and therapist. How sad is that? Sure, my sisters are supportive. They never interrupt me while I am writing but then, they usually don’t call while I am as they work during the week.

depression and delusions

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

Been reading my blogs from a year ago and found that I was very depressed. I didn’t want to be in treatment. I didn’t want to take my medication anymore. I just wanted to be left alone. I felt like I was a bother to my psychiatrist and my therapist. Then things got more serious. I was in pain and that just sent me over the edge. I became suicidal. Now there was no way I couldn’t see my pdoc or therapist. They wanted to see me despite me telling me them it was a waste of their time. I must have read at least three blogs that said this.

It was after my book was published and I sunk into a deep depression. I don’t remember it now. I just have the blogs to monitor these things. I am glad I have this record because I don’t remember half of what I write. Some blogs were written in the evening. Some were after midnight. The ones written after midnight were more depressing than those written at an earlier time. But then, my moods always get worse after midnight, especially if I can’t sleep. I talk about Hyde in a few of the blogs but not all the time. Hyde is my suicidal alter that comes out when there is a perfect storm: I am in severe pain, deeply depressed, and want to end my life. He likes to write the most morose things. He will write suicide notes. He hasn’t been around much since July. I hope that he stays away.

There was another blog that I read that was “private” I had to throw it away because it was a description of me trying to end my life. I couldn’t justify keeping it so I “threw” it away.

I am in a lot of pain right now and I just realized I forgot to refill my bottle of pain meds that I keep by the bed side. I will have to get up and do so. My ankle is not going to like it but it needs to be done. Because if the pain gets worse and I have to walk the three feet to the bureau, that will be worse. I hate being in pain at night. It is awful. But hopefully my meds will kick in soon and I will fall asleep. I doubt that it will be soon. Foot is also acting up along with my ankle. It’s the trouble twos. I usually can’t rest when both my foot and ankle are flared up. I didn’t do anything. I think it is nerve pain because my toes are throbbing big time.

I read a lot of my blogs tonight. I didn’t notice any patterns or anything in my mood for the months I was depressed. And when I was depressed, the world stopped spinning. It was horrible to read the pain I was in and I don’t mean the physical pain. The mental pain of depression was awful. I don’t know how I got through those episodes without trying to kill myself. According to the blogs, I had extra sessions with my therapist. That must have been what got me through. I wrote that I fired her a few times in addition to cancelling my sessions that she refused to do. In one blog, I wrote that I had pain and she un-cancelled the session. I had to see her. All because my ankle was hurting me. She is a weirdo, but she is my weirdo.

I feel depressed right now because of my pain and that I can’t sleep. It’s after midnight. I feel like I should write. Writing tends to make me sleepy so I can actually sleep, even if it’s for a few hours. I am sure to wake up anywhere between 0400 and 0700 today.

As I have been writing about my second diagnosis of Cauda Equina Syndrome, I have another story to regale. One night the nurse practitioner decided to give me a high dose of Neurontin with my other meds that I was taking. Mind you, I was still recovering from surgery so I still had some anesthesia in my system and I was on some powerful pain meds at the time. She gave me the Neurontin to try and ease the “nerve” pain I was having in my thigh that was weak. I have been on Neurontin before so didn’t think nothing of it. Until I started having delusions. I imagined I was in my bed at home and when the tubes fell into the nursing stations, I thought my mother had fallen out of bed. I couldn’t get up to see her but when I woke up from the noise, I realized I was in the hospital and went back to sleep. Soon after the nurse came in to wake me up as I had to go for an MRI to find out what was causing the weakness in my leg. She was to give me valium so I could be relaxed during the MRI and a pain med so I would be comfortable on my back for the hour. She didn’t know my mental status was impaired until I told her I had to call my mother and find out if she was okay. At 0230 in the morning, I called home to see if my mother was indeed ok. She was and told me to worry about myself. I realized I was dreaming and the nurses went on their way but I still wasn’t myself. The orderly wheeled me to the emergency department imaging center and I had a flashback of when I was first diagnosed with CES. I was stuck in this time. I had no idea what was going on. But I was too drugged to do anything about it. By the time they had me on the table for the MRI, I passed out. When I came to, two nurses were trying to catheterize me because I hadn’t gone to the bathroom in hours and my bladder was very full. They asked me if I knew where I was and I told them I was in the ER (I was actually back up in my room but it was still the middle of the night) and that I had CES again. I then passed out but not before hearing them say something like “he’s gone”. When I finally came to the next day, the nurse practitioner came into my room to talk to me. She said that I had a bad reaction to the Neurontin. I just looked at her and said, that wasn’t a dream? She told me no. I was floored. She was going to put me on another medication and that is when I stopped her. I told her to run it by my psychiatrist first before putting me on any more meds. My psychiatrist must have scolded her because she came back and said she wasn’t going to put me on anything else but to make me comfortable. Results of the MRI showed that I had a fragment on my L3 nerve root and would need surgery again. Oh fun! It would be my second in three days time.

ARGH, Another Pain Day

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

ARGH, another pain day

I woke up this morning and I was fine. I made a phone call to my PCP to find out if my prescription was ready to be picked up and it was. So I set out to go into town and get it. I was feeling okay, not 100%. I am never 100% but felt good enough to venture out. I really wanted to stay home and relax but I wanted my Hawaiian coffee. I stayed at Starbucks for about an hour before heading to town. By the time I finished walking to the PCP’s office and back to the train station, my ankle started up on me. I just missed the 1230 bus so would have to catch the 1330 bus, which meant having to wait a half hour at the station. I was feeling really worn out and just wanted to go home but I wanted to fill the prescription and then not have to go out tomorrow. So as I was waiting in line at the pharmacy counter, my ankle had enough. It screamed and I almost gave out a little yell. I couldn’t believe it. It has never done this before. Luckily, I was called next, then sat to wait for the script. I was grateful to sit down a bit or I would be crying.

I had tweeted Walgreens over the weekend to say I was upset with their customer care. They got the details and while I was at Starbucks, the manager called to apologize. She agreed someone should have called me to tell me what was going on with my prescription (Zofran). She apologized and said that she would call me back when the issue was taken cared of. Apparently, because their system was down, my insurance thought I picked it up and then was trying to refill it so it wouldn’t go through again. They had to cancel out the transaction to let me have my meds. It was complicated and then three hours later when I went to pick it up, it still wasn’t ready. So glad I didn’t go when she said it would be fifteen minutes! In the end, it helps to complain to upper management to get things done. I know some people have problems with the alerts and I keep getting refill reminders more than I get prescription ready alerts. It helps to also have Twitter as a go to for getting customer care. I seriously doubt I would have the meds ready when I came if the manager hadn’t called me this morning. I would have had to wait longer for them to figure the damn thing out and I would again be out of my meds for possibly another day. There would be no way I would be able to wait longer than 15 minutes anyway. My bladder was telling me it was time to go home and my ankle was already crying. It needed to be put up, like it is now. I desperately needed to take a pain med so needed to come home as soon as possible.

I am glad I didn’t buy the Hawaiian coffee because I don’t like it hot. I would have to make it iced and I am just not that talented. I was able to get my Brazil Sertaozinho today. I can’t wait to make that coffee tomorrow. It’s like milk chocolate in a coffee cup. I have had that iced and hot and enjoy it. It’s probably the only thing that I enjoy right now. My mother was confused as to why I bought another bag of coffee. I told her it was different flavors. Really, they are just different places where the coffee is produced. I forget where my Kati Kati is made, but I still have that, household blend, and soon will have Pike’s Place. I am not going to get Pike’s grounded until I am done with the household blend. I have a quarter of a bag left.

I am not planning on doing anything today. I do have to eat something as I really didn’t have breakfast or lunch today. I had a ring ding this morning but I don’t think that counts as breakfast. I am totally wiped so I need to rest a bit before I try and make myself something to eat. While at Walgreens I was able to get some shredded cheese so I can use it for my burrito. I might make eggs. Or I might make a turkey sandwich. I just remembered I bought some turkey breast with my online grocery order. I am so glad I can order groceries online. It is so convenient and doesn’t hurt me. I can order them and have them delivered and I don’t have to carry the bags up the stairs. I just have to put them away. I won’t order eggs again, however. I had to get a credit because two eggs were broken out of the dozen and a half that I ordered. It was something that I feared would happen.

I tried getting a hold of my therapist today but she must be really busy as she hasn’t gotten back to me yet. Now that it’s late in the afternoon, I don’t think she will. I am just feeling really out of sorts and depressed. This pain is really throwing me for a loop. Just when I think I have made it go away, it flares up on me again. It is really bringing me down. I am not suicidal but I wish someone would take me out of my misery. I can’t stand being in pain every day. You would think that I would be used to it by now but it’s not something you ever get used to. Today I went out and did a few things but tomorrow I will have to rest. I might have to rest Wednesday too because Thursday is going to be a long day. I have to deal with my father and then I have my pdoc appointment in the afternoon. I haven’t quite decided how I am going to get to the red line as my father is on the orange. I will have to time it right to get to where I need to go, which means more walking and traveling. I don’t know if my ankle is up for the task. It kills me that I can’t do things every day like “normal” people do. I will have the Friday and the weekend to recover but I don’t know if my mental health will. I am just getting really annoyed that this pain hasn’t let up despite rest and pain meds. Or it has and then soon as I am a little bit active, I am in agony all over again. I am glad I have the energy to do things but paying for the efforts just isn’t fun. It outright, just sucks.