Tag: chronic physical pain

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.

Saturday Blog

by Midnight Demon, posted in blogging, chronic physical pain, depression, transgender, writing

Saturday Blog

I have decided to create a blog called a Saturday blog because I will write it on Saturday. Today I am really struggling. I feel like crap. I woke up early, had breakfast, and then went back to sleep. My ankle was bothering me so I had some pain killers that knocked me out until my fricken crazy cousin kept calling my house and my sisters looking for me. He was under the impression that I had a doctor’s appointment today and he was going to take me to it. I had told him I did on Monday as he wanted to get together for lunch. Monday is kind of a busy day for me. I have therapy in the morning and then see my pdoc in the afternoon. I also have to get there early to sign up for state insurance as I will need it come June. I will just take the financial worksheet that medicare gave me and see if that will suffice for income.

Although my sister told me that I don’t need to file taxes because I am under a certain amount, I feel like I need to. This is the first time in my entire adult life that I won’t be filing. I won’t be getting anything back but I just feel like I should file just in case. I know SSD filed for me and I don’t really have to file but I know I should file my state taxes but I don’t have a printer to do so. I am very anxious about it. I would go to H&R Block like I did last year but it cost me $150 (USD) to file and I don’t have that kind of money nor do I think I should pay that much when I am getting nothing back. I think I have to file my state because of the new law about health insurance. You have to prove that you have it for the fiscal year or you get penalized. I have to file paperwork because of my disability status. I rather just go through H&R Block just so I don’t have to deal with it and they know the taxes better than I do. I hate filing paperwork. I wish I could file electronically but its all complicated now with the different forms. I don’t have W2 but forms. It’s all confusing to me.

Still no fricken word from the editor. I am starting to go out of my mind. I so want to publish this book and be done with it. But like I said in my previous blog, it comes with fears. But I think I am strong enough to deal with it. For the first time ever I feel comfortable in my own skin. I still don’t like it when my mother calls me “she” but I am getting used to it. I don’t think that is ever going to change. I might feel like a he but I am never going to look like one to the outside world. It is really depressing if I think about it. I try not to but this morning I was and I felt suicidal. It didn’t last too long but it was still there. As I told my therapist the other day, if I had a chance to kill myself I would. I just still believe I would be better off dead. I mean, I am never going to be a man. I am stuck in this fricken woman’s body that I completely hate. And because I am a dickhead with money, I will never have the money for surgery to remove my damn things on my chest. I have thought about going to Mexico or some other country to get my breasts removed but then I thought, what if I developed an infection because the surgeon just wanted the money or I am left badly scarred. But then I have thoughts of doing it myself and what kind of job would that be? I know there is an organization in my area that deals with LGBT issues. But I am so afraid that if I make that step, there is no going back. And I also am afraid that I will have to make that commitment to myself. But I am just not there yet. I am afraid that they will have these weird requirements to get the hormones and stuff. Like I will have to lose weight or work out to build muscle but I don’t want to do stuff like that. I am not a weight builder. I never was interested in building muscle I just want to be flat chested and grow a beard and a full mustache. But no matter how baggy my shirts are these things on my chest always sticks out. I know it is worse with my weight and I am trying to lose but it is just so hard. I want to try and lose another fifteen pounds but that will take some doing. Trying to control caloric intake is so difficult, especially when you love sweets and potato chips. I try not to buy but my mother does and there goes my will power. Like this morning I had chips while making my egg sandwich. Granted I was looking for pizza from last night but there wasn’t any left over, or if it was, I don’t know where my mother put it in our full fridge. She has a bunch of left over food and I just don’t like eating leftovers.

So tonight, my crazy cousin invited me over for dinner. I am debating taking a shower. My ankle has already yelled at me once today for standing too long. I don’t want to take more pain meds today because I will just go back to sleep. I just had a cup of coffee so I am awake now. But take a couple of pills and I will be down for the count. He is making sausages and potatoes. I haven’t had that in a while. I try to stay away from sausages because my cholesterol is a little bit high right now. But I know it is high because I have not been as mobile as I have been. Soon as the weather becomes nicer, I will start a walking regimen. If I can tolerate walking around the block a couple of times, I might venture further out. But it all depends on how I do. So far I know my limits and it all depends on if I am in pain or not. I know I have to wear my AFO more. I don’t like wearing it but it’s the only way I can walk without feeling more pain than without it.