Tag: CRPS

Runaway Train, Soul Asylum

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

Runaway Train, Soul Asylum

This song is the song of my teenage years and more. The lyrics are just so powerful. I know the song deals with runaway children, but when you are in so much pain and want to escape, this song pretty much covers it.

I am snowed in, literally. There is almost two feet of snow surrounding my house. My brother in law is outside plowing with his snow blower. They have not plowed the streets yet. Travel ban is still in effect as far as I know, though they have lifted the ban in the western part of the state.

I thought I would writ this blog and then read my civil war book. Tomorrow seems to be the same. School has been canceled so I am guessing I won’t be having therapy this week. I could really use a session as my mood has plummeted since I edited one of the papers I am using for a “lived experience” contest. I just hate myself so much that I just want to die. I was reading a transgender blog and read that the FTM is going to have surgery in three weeks to remove his breasts. I am so jealous. But then, I haven’t pursued avenues to my transition. I keep trying to get the nerve to tell my mother but I lose my nerve. I know what she is going to say. And the most hurtful part is that she thinks she knows me. Yeah right. If she knew me, she would know that I buy men’s clothes because it fits my identity as a person.

I should probably take a shower today but I don’t feel like it. The shampoo that I have been using just dries out my scalp and makes it itch. I have yet to find a shampoo other than Selsun Blue that deals with the issue. And Selsun Blue isn’t cheap. I got to get another bottle, so add it to my shopping list. I love shopping on Amazon. I usually am able to get things much cheaper than in the stores, and usually a 2 for 1 deal. Plus I usually have free shipping so that is good. I am not a Prime member because it is too expensive, but I think next year I will be. If I am still alive.

I was reading about a friend on Facebook. We became friends while in the hospital last year. She is thinking about entering the hospital’s DBT program to help her. It is an intensive program, from what I heard. I never found DBT or CBT to be helpful for me. The therapy that I have with my therapist is eclectic, meaning there is no specific discipline she focuses on. Mostly we just talk and go from there. She is open to any therapeutic ideas that I have which I like. I usually am not open to her ideas, though I will research them. There was a guy she liked about something, I forget. I think his last name was Frantz. I came across his paper the other day while looking for something else. It was an interesting paper. It probably is the only thing that I liked that she suggested.

Oh this sucks. I am almost out of my pain medication and I still have not received my new script in the mail. And because of the snow storm, mail won’t be delivered today. Fuck! I still have a few pills left but they won’t last this week. And if I don’t get the script tomorrow, it will throw my damn refill schedule off. UGH. I am so pissed. And because of the new narcotic regulations, they can’t fax in the prescription. I am so screwed.

It’s 1435 EST and I just realized I have not had lunch yet. Think I will make some eggs and toast. Then I got to do some reading.

Another Pain Day

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

Another Pain Day

I have been up since 6 this morning. I tried to go back to sleep but I failed miserably. Ankle has decided to be a bitch today. I realized that since I have been in the house for most of the week, I can’t do hills. I went to pick up my niece from her after school program and I was so out of breath from walking up the little hill to my street. I used to do that with no problems. Now it is a problem and I don’t like it. Granted being in pain didn’t help matters. I then went up the two flights of stairs and I didn’t have a problem breathing. HUH?? Why is it I get winded on hills but not the stairs?? Strange.

I didn’t go out today, other than to pick up my niece. I wanted to go to the store and get some cream but I was in too much pain and I didn’t want to waste spoons. I took a shower before picking up my niece and that was pushing it. But I had to change because it has been a few days since I last took one.

Despite the temperature cooling off outside, it is hot in my room. So I have the AC on to cool off. The heat is not helping my ankle. I just can’t stand it being more than 70 degrees in my room. It just feels stuffy. I am trying to stay awake while writing this but it’s difficult as I am so tired. I am in so much pain though I doubt I will sleep. It has been an 8 out of 10 all day today. I don’t see the new foot doc until Halloween. I am trying to schedule an appt with my pdoc the same day but she is being elusive with her emails. I give her a time frame I can see her and she doesn’t respond. She did call in a refill for me seeing as I will run out by the time I do see her again.

I waited all day for a stupid secretary to call me back and she never did. I will have to call on Monday now. Just drives me crazy when people say they are going to call and they don’t.

God, I wish I did something to have this pain that I am in but I didn’t do anything. I might have done a few more stair climbs than usual because I have had the hungry horrors today but that has been it. I really can’t stand this anymore. It’s driving me crazy. But watch, my ankle is going to “miraculously” be okay the day I see the doc. I am sure that day is going to be a low pain day. OI. And there is a hurricane in the mix this weekend so maybe that is why my pain is off the charts. I don’t know anymore. I have decided that I am just going to do what I do and the hell with the consequences because my ankle is going to do what it is going to do no matter what. I don’t have control over the pain levels any more. Gone by the way side is taking one pain pill a day. Now it’s 4-6 pills a day. And sometimes, that isn’t enough. There is no getting ahead of the pain because the pain occurs so out of the blue like it is hard to gauge when you are going to have a flare up. Surprisingly, I am not suicidal throughout these pain episodes. I think if I were, I would have to be hospitalized. But then, I wonder which side of the fence I would be hospitalized, medical or psych? If I am suicidal because of pain and if you take the pain away, then I am no longer suicidal. It’s a tough call. I think there have been times I have wanted to page my psychiatrist because I don’t know what to do anymore and I am staring at a bottle of pills. Then there will be other times where I just wish I was dead. There is no medium. There is no one I can commiserate with. No one understands. You tell them you have an injured ankle and they immediately ask “how did you do that”? I have no answer because there was nothing I did that caused this. Least not that I know of. And that is the frustrating part. Maybe I just have CRPS and that is the price I have to pay because I have “evil” thoughts. I don’t know.

The other day I read that some where in Michigan, a body was found at a shopping center. It reminded me of a twisted short story I read by Lawrence Block years ago. There were these two brothers that would vacation together. It seemed normal. They both planned to go to a different state and do some vacationing. Except toward the end of the trip, they would kidnap a lady at a shopping center and do their business with her then kill her and leave her in the woods or some remote place. Creepy story because it had a realness to it. That is what I love about Lawrence Block’s books. He just recently had one of his books turned into a movie. I haven’t seen it yet because, again, it is a twisted story. There are these two guys that love to mutilate women’s breasts before killing them. But they kidnap the women for ransom first. I have read the book at least three times. It is a good book, but I don’t know that I can see what I have read.

Totally out of spoons

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

Totally out of spoons

I am so spent. I did too much today and now I am paying for it. I just had my meal, a bowl of cereal. Now I can hopefully relax as I am hurting.

I had to do some stuff for my father, surprised? Tomorrow I get to do the same things I did today, minus going to his house. He must have called me like 6 times today. He is in pain and the medication doesn’t seem to be working. I told him he can take two medication but he refused. Let him be in pain then. I am tired of dealing with him today. Tomorrow he will be seen by his doctor and hopefully they can give him stronger pain medication. I don’t care about that right now.

I have to conserve my energy (spoons). I have a long day tomorrow as I have to deal with my father and then I will be going out to dinner with some friends in the evening. At noon, I am supposed to have therapy but I am not sure I will be home for that. I haven’t quite decided what I am going to do after my father’s appointment. I know I probably will go home so I can rest, but it all depends on what time the appointment ends. I hope that we aren’t there all morning. That will just suck.

I was not in a private space to really talk to my therapist today. She kept going on about how many spoons I have lost even before I went to see my father today. I had a productive morning, all with no coffee on board. I was hoping to have a cup when I got to Starbucks. But for whatever reason, the coffee sucked today, even the blonde roast didn’t taste right. I wasted my money today for the first time. I am so disappointed. I hope tomorrow is better, I am going to need the coffee to get me through the day.

My therapist was funny today. She called me a geek and I think complimented me on being very “Bostonian”. LOL I guess I said “wicked” too much today and it just got to her. I was glad for the light conversation, as like I said, I wasn’t in a private space so talking about my suicidality or self harm urges were out. I actually haven’t had any urges to cut since Sunday. We however briefly, talked about it today. I some how developed a pimple on one of my scars and it was triggering me to cut. It was very itchy and course, when I popped it, made it really angry. I really thought about cutting for the first time in months. I kept thinking about how to make the scar “better”. I know this doesn’t make sense, but it really was how I was thinking that day. I almost had to call her Sunday to talk me out of it or to contract for safety.

I am looking forward to going out to dinner with my friends tomorrow. I am going to go even if it will kill me. I will just bring my cane and I should be fine. We are going to go to one of my favorite restaurants so I really don’t want to miss it. Plus, I haven’t seen my friends all year because of my stinking pain. I don’t see them often. The last two times we were supposed to meet, I couldn’t go because I was on bed rest. I really am looking forward to seeing them, we have a lot of laughs. So even though it will hurt me, I am going to see them anyways. I will take my pain medication with me just so that I can mingle. Luckily, there won’t be too much walking involved once we get there. My friends live south of Boston, almost near the Rhode Island border. I have to take the commuter rail to get there. I am going with my friend, who cordially invited me and will be treating us to dinner. He does this at least a few times a year, usually when it is my friends’ birthday. He is nice like that.

I think I am going to have to take a strong medication to kill this pain that I am in. I have been at an 8 on a scale of 1-10 for the past hour or so and obviously, my regular pain meds aren’t touching it. I didn’t think they would. I just did too much today. I was on my feet for more than 20 minutes, I walked long distances, and generally ran out of spoons by the time I even got to my father’s house. And there was one errand that I forgot to do, and that was mailing my therapist’s letters. Totally forgot to grab the envelope before leaving and didn’t remember until I got to Starbucks. I’ll have to remember tomorrow to do it because the rest of the week I will not be leaving the house. I need to recharge my spoon counts.

Saturday Blog 9

by Midnight Demon, posted in chronic physical pain, sports, writing

I watched college football for the first time this season. I didn’t think I was going to wake up early enough for it because I usually forget. Luckily, the game was on the cable network so I got to see it on my living room TV instead of the small kitchen one. It was OSU vs Navy. I had a hard time rooting for either team because both are my favorites. But in the end, I went for my most favorite team, OSU.

I forgot to take my morning meds again. It is way too late now to take them as I will be taking my night time meds in a few hours. This sucks. I also have not taken my blood pressure at all today and I am afraid to because I know it is going to be high. So I will skip that too.

After the game, I was very tired for some reason. So I took a nap before my bladder woke me up, angrily. I forgot that I drank 32 ounces of fluid before taking my nap so I was FULL. Not a good thing when you have CES. I am still wearing a pad because of my menses so if I leaked, I didn’t care.

I have to take a shower today. I am all icky and stuff. It looks like my menses are finally going away, which is a good thing because then I can restart my hormone pills. I just have to remember when I stopped the pills. This sucks that I have to stop the pill every three packs. What good is it if I do that?? Three months off is not enough time to forget the awfulness of being in the wrong body. And then have to deal with it again, three months later, just sucks.

Since I woke up this morning (around 11 or so), I have been eating constantly. I finally stopped around the time the game ended. I am now bloated. I don’t think I am going to have anything else to eat today. If I do get hungry, I will just have a bowl of cereal.

Ruby De La Rosa is pitching tonight for the Red Sox. I don’t want to even watch or hear the game. Ever since the Sox traded away three good pitchers, I stopped watching or listening to the game. I would, however, keep track on Twitter. Or if I really cared, I would go the website and check out the score. But usually they would have a lead and then blow it. Such is the story of the season. This year’s sox just cannot hold on to a lead for nothing. The only team that we seem to be able to beat are the Blue Jays. Tonight is a much more competitive team, the Tampa Bay Rays. I hate that team. So if I happen to sleep through the game, so be it.

The agitation that I was feeling yesterday is gone, thank goodness. I guess, all I needed was sleep, even if it took a few Ativan to get there. Right now I am just feeling sleepy. But it’s not even eight o’clock yet so I can’t take my meds. I mean I could, it’s not like I am on a schedule or anything like I was when I was in the hospital, but if I take them too early, the chances of me waking up in the wee hours of the morning is greater. I have done that before and I woke up at midnight or 1 am. Not good because then I have the energy of three people and I don’t know what to do with it.

I didn’t work on any writing today. I didn’t even have a cup of coffee today. I have a feeling the coffee is what is causing the jitters that I get. So as my writing award for next month, and seeing as I can’t afford Starbucks, I will try to make a Starbucks award for my writing next month. That is, if I can afford it. I am going to try and promote my book this month so I have a few dollars on the side. I sold 3 books this month. I want to try and sell 5 next month. That is going to be a huge task. It would be easier if I had a printer but I don’t. My sister does but she doesn’t have ink for it. I am screwed. But I can still hashtag away at Twitter every day a couple of times to try and sell my book. If I had the money, I would take an ad in a professional psychology journal promoting my book. I still have to mail my editor her copy of the book, which I will do on Tuesday. Monday is Labor Day so post office is closed. I am still debating if I should send my book to be reviewed by the American Association of Suicidology. I want to so bad but I don’t want to be criticized either. I have a lot of personal information. But they didn’t give me a lot of information to put in the book. “Just send two copies to this address” is all I have to go on. And I have the package all sealed up and ready to go. So if they needed me to sign the book or include my address in the book, too late for that. I just hope that I don’t have to be a current member because I let my membership expire. Dammit, the things I think of now.

My foot is killing me. The pain meds that I took earlier have had no effect on it. I am so tired of being in pain all the stinking time. I just want to chop my foot off right now. Sure it will be bloody and messy but I don’t be in pain, well not the type of pain I am experiencing right now. I think I will feel another type of pain but I am hoping that will go away with time. And if I happen to bleed out, so be it.

I am starting to get worried over a blogger friend of mine. She is having difficulty with her illness. I tried reaching out to her but got no response. She has been blogging saying that she what she is doing and I don’t like it. Even though she doesn’t know it, I think it is a form of self-harm. I just want to help her but if she doesn’t respond to me, that is kind of hard to do. I just hope she is sleeping off what she took and no harm comes to her. I will really miss her if she should die.