Tag: CRPS (formerly RSD)

total incapacitation

by Midnight Demon, posted in cauda equina syndrome, chronic physical pain, depression

I have been sleeping most of the day. My ankle has been hurting really bad and the only time I left my room was to have something to eat or go to the bathroom. I know I am super dehydrated because I haven’t really had anything to drink most of the day. I had a glass of juice with my supper and that is all I can really recall drinking. It’s late now so I don’t want to drink anything because I will be up all night peeing.

Today was my brother in law’s birthday. I didn’t go to it because I just couldn’t make the stairs. When my mother called to see where I was, she was shocked to know I was in pain because “it didn’t look like it when I got up this morning”. Pain can flare at any time. I don’t have to justify it to anyone. I swear they don’t believe me sometimes, but that is their problem not mine. And even though I spent the day in bed, I am still hurting.

I have not heard anything from the author yet. It’s been almost 24 hrs. I hope I hear from her tomorrow. I better hear from her tomorrow! I have a busy week. Tomorrow I have my pcp appointment, Tuesday I have my father’s appointment and Wed/Thursday is my therapy appointment. I really don’t want to see my PCP tomorrow. I gained some weight back because I wasn’t careful. Plus my mother made cookies, my kryptonite. I have been eating them almost all day even though it killed me to go down the stairs.

I am not taking my meds tonight. Only pill I will take is my birth control. I forgot to count out my meds for the week but that is kind of hard to do when you can’t stand for longer than ten minutes. I should have done it last night when I couldn’t sleep but I didn’t think of it. I usually do it on Sunday mornings when I wake up but today was an off day for me. I woke up late and was in pain and the day kind of got away from me. I read my Lawrence Block books that I bought yesterday and then slept most of the day. Not like it did any good for me. I know it has to do with the weather changes. It’s no longer twenty degrees out so my pain has to increase with the temp increase. I was never like this before my back surgery. Sure, rain hurt my knee whenever it rained but nothing like this. This is total incapacitation. I hate it because there is nothing I can do but rest. If I try to do something, I am rewarded with pain. So I just lay low until the weather equalizes and stays the same for a few days. Tomorrow is going to be interesting.

There’s nothing magical about writing…

by Midnight Demon, posted in cauda equina syndrome, chronic physical pain, depression

“There’s nothing magic about writing; it’s a learned skill”.—Tom Young

I got this quote from a writer’s tip twitter follower. I thought it was poignant as my therapist thinks that I have these skills as writer. She is in awe of my writing. Some times, I have to admit, that I am in awe myself. But writing, I guess, has always come naturally to me. In recent months, all I needed was a phrase to go on. For example, my writing buddy gave me the phrase, “write the pain” and I went off with it and it was a nice piece of writing. I am thinking of collecting these blogs and publishing them into a book. I think they would be a nice short story collection for my next book. But first I need to publish my first book before I start thinking about my second one.

I got a message from my editor that today she will be off as she will be spending time with her family. I just hope when she starts work tomorrow, I am on the list. I am so sick of waiting for her services to start. I know I should start looking for another editor but I don’t have the greenbacks nor would I know where to look. Definitely, not on FB again. And the editors in my area are pretty pricey, like thousands of dollars as they go by word. It would cost me like $50,000 to see my book edited. I don’t have that kind of money, nor should I think that I should pay per word. I think I am just stuck waiting for this editor because I don’t have the back bone to go to her and tell her I need my book edited NOW or I want my money back. I even had a dream where I did this but unfortunately, I woke up before I could see the response. LOL. I am paid in full for services so I don’t know why she is taking so friggin long. I just am so frustrated waiting. It’s like half my life is spent just waiting for people. I have to have gotten my patience back because otherwise I think I would have said something by now. All I do know is that she better be damn good for me to wait this long.

I know for the past few weeks all I have been writing about is my book, but it’s such a big part of what is going on with me right now and it has produced stress for me. And writing about it has helped with my anxiety level.

Today I got a haircut, after two months of not seeing barber. I also dropped off my prescription, only to be told that the doctor needs to change it because they no longer carry the 1 mg pills. I am so annoyed by this. I am glad I am not completely out of my meds but I will if this doesn’t get resolved. I have a few days at best. My doctor is usually good at filling my prescription fast so I am not worried. After this, I decided to go back out and get a mocha. I did some writing at Starbucks. I wrote a letter to my therapist and journaled a little bit. Then it was time to head back home. I got my mother a couple dozen eggs and got myself turkey bacon. I have been craving turkey bacon for a while. I was going to have it tonight for supper but my mother made a type of broccoli soup so I had that instead. I don’t think I could have made the bacon anyways as my ankle has been taxed enough for today. It already became stiff when I started going down the stairs to check for mail. Every time I think I can rejoin the workforce, I have a setback. Tomorrow I have to see my neurologist. That appointment is going to be a waste of time. My neuro has gone holistic on me so is not medically based. But I like her and will humor her as she explains the benefits of chair yoga and the like. She should be a life coach as she tries to incorporate healthy living skills during our appointments. Only doctor I know that does this. But then my doctors are a funny bunch. I have to tell her about the thigh pain that I have been having. I think one of my discs have shifted right as I am getting pain down my right thigh. Usually, all my pain is on my left side, so it is quite unusual to have it on my right. I hope it’s nothing too serious. Because if I get CES again, I will kill myself. I am not going to go through surgery again. I will never be able to work again as I will need a fusion. And so far everyone that I know that has had one, never was able to work again in the capacity they had before surgery. It scares me to think that I might have to have surgery again because my whole lumbar spine is fucked up. I have my L2/L3 verterbraes overlapping one another instead of being in a line and the other discs are all herniated. My L5/S1 is herniated so much it touches my nerve root. But they don’t want to do anything about it. I guess as long as it is not compressing the nerve, I am okay and I am okay with that. I haven’t noticed any weakness in my leg, just radiating pain on occasion, nothing constant. That is a good sign but it is worth mentioning just the same. It has been a while since my last MRI. I don’t even remember when I had it done last. Probably in 2010 or 2009 when my ankle was flaring up big time and we were thinking it was coming from the back. The only thing that sucks is that there was no contrast injected because I am a hard stick. I tried to stay hydrated enough so I could get stuck but the technician couldn’t find a vein good enough for the IV contrast. It sucks having to get stuck but it’s important because the contrast shows the difference between new stuff and old stuff.

My Suicidal Mind

by Midnight Demon, posted in chronic physical pain, depression

Today my therapist asked me if I was suicidal, or specifically, if I was having suicidal thoughts. I had to think about it for a few minutes before answering. And the answer is not so much. I haven’t sat down and thought about killing myself in a few weeks now. I am not saying I am no longer suicidal because that would be inaccurate. If given the chance, I would act on a suicidal plan in a heartbeat. It’s just that I am not thinking about it all the time anymore, 24/7. Then she asked me about my perturbation, press, and psychache, the three P’s of the suicidal cubic model. When all three are at a 5, suicide is imminent. Over the last few years I have ranged from a 4-4-5 to a 5-5-4. Always close to killing myself but not quite there. Granted there have been times that I needed to do something to get rid of the pain so I would self-medicate, usually. But lately, I haven’t been perturbed. I haven’t been feeling press. And my psychache has only increased due to my transgender issues. It varies. Some days it is worse than others.

My suicidal thoughts are also partly dependent on my physical pain. I haven’t had a bad pain flare up in the last few weeks. I had pain today that prevented me from going out, again. Seems I have been waking up in pain the last few mornings and I am not liking this. It just ruins my day. I really wanted to go see my therapist today, and I would have if my stupid foot wasn’t hurting. It makes me depressed big time but it doesn’t necessarily make me suicidal all the time.

I have not been in a dark mood in quite some time. I am fearful that it might come back. I am trying not to be too hopeful about things because I know things are always going to suck no matter what. Like my editor not getting back to me is putting added stress on me. I know that she hasn’t gotten to my book because I am a bad writer, but I can’t help but feel that way sometimes. I am hoping she gets to me this week, after her day off. I am really, really disappointed that I am not going to be publishing the first week of April. I had wanted to get a few books out to the AAS conference in Los Angelas. But now that doesn’t seem likely either.

I feel like I have a fractured ego right now, that one wrong thing someone says to me and I will have a meltdown of some kind. I just feel a pressure building up and I don’t know where the release valve is. Right now things are ok, but I am sure any stress thrown in my direction is going to set me off. I guess that is why I have not thought about a suicidal plan. It would be too tempting to have one in place should I have a meltdown.

Also my therapist wanted to ask me a question about my transgender stuff but we ran out of time. I am kind of glad because we have been talking about that most of the week. I am glad next week we don’t meet three times. She wants to meet with me any time she has an opening. But next week I have appointments for myself and my dad. I am not looking forward to my appointment as it is with my PCP. I also have an appointment with my neurologist this week. That appointment is a joke. She meets with me and just tells me to join yoga. Not happening. We also talk about other stuff. I am going to bring up my neck hurting me and my hand/arm falling asleep. It has been happening a little bit too much for my liking. The weird part is that I will be sleeping on my left side when my right arm falls asleep. I hope I don’t have herniated discs in my neck. That will suck.

Luna’s Gone

by Midnight Demon, posted in blogging, chronic physical pain

Luna’s Gone

I have had this song stuck in my head for most of the day. It is a song by Mary Chapin Carpenter on her Between here and gone CD. I was listening to this CD the other night. Her music is so soothing to me.

Having a rough day. Had to deal with my mother that woke me from a sound sleep so I could put on compression stockings on her. Not a good thing when you only got crap sleep to begin with. I am still pissed and I think she overrided my Tivo to not record one of my shows. I will be very upset and she will hear about it. I hate when she doesn’t let me record my shows. I pay for the damn cable dammit. But I am so sleep deprived, I don’t want to go downstairs and see if she did or not. I don’t have the energy to explode on her.

I have been in pain most of the day. It has been hard walking around because I am having problems putting weight on my foot. It doesn’t like it. And it is the same pain that I have been experiencing last night. My last three toes on my left foot have just exploded and hurt very badly. My big toes feels like someone is trying to cram it into something or make it shorter than what it is. I just know that I am in mega pain and I am not happy about it. My big toe really feels like some one is trying to snip it off too. I love these weird sensations that I get. Got to love nerve damage, NOT.

I figured out that my foot weakness is part of the problem. If I try and work my ankle/foot into normal moves, it becomes fatigued and then it starts hurting. The longer I try to keep my foot in a certain position, the more fatigued it gets and the more I hurt. I don’t even realize I am doing anything out of the ordinary because don’t all people keep their foot in a flexed position while walking or sitting? I think they do. I can’t seem to keep my feet flat on the ground like you are supposed to, mostly because I am short and the chair makes my foot dangle. Anyways, whenever I try and keep my foot in that upward position, my pain goes through the roof. It is not right away, because what fun would that be. It has to come out right before I want to go to sleep.

Last night I only slept for about 45 minutes to an hour when I had a strange, disturbing dream. I dreamt that someone had left me a comment on my blog telling me to kill myself and how to do it. The weird part of it was that it was in my handwriting. Creepy. And it scared me. I told my therapist about it tonight and she doesn’t know what to make of it. So much for dream analysis. She is getting worried because the dream process was so quick. Normally you need at least ninety minutes to reach REM sleep. I am achieving it in less than that time frame. When I see my psychiatrist next week, I will bring it up. Maybe I need to see a sleep specialist or something. I already have trouble sleeping but it’s not because of insomnia or overthinking. It is because of fricken pain. And this pain is just so bad I really just want to chop my foot off. But I don’t know if the pain is what is causing my sleep to be so disorganized. I really don’t know. Sometimes I can’t sleep because I have to write something. I have to either physically or electronically write something to “calm down”. And then once it is out of my system, I can go to sleep. My sleep pattern has been the same for the past three weeks. I sleep in three to four hour stints. It is rare that I sleep continuously straight for six hours or more. I am hoping I sleep at least six hours tonight as I am really tired.