Tag: CRPS (formerly RSD)

books and pressures

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

Had a hectic day today. I walked 0.8 miles and I feel pretty good about it, though my ankle disagrees. I have been up since 5. I made breakfast, showered, and had coffee all before 8 am. Which left me an hour and half to play my game and decide what to wear. It was cold and rainy today so I wanted to be warm but not too warm because I knew I would be walking. I hate sweating. Luckily for me it stayed cool and I didn’t overheat.

I think one of my upcoming blogs I am going to do a book review on “Managing Suicidal Risk” by David Jobes. It has been a while since I last read it and by chance I found it today while looking for something else. It is my autographed copy of the book. I will send the link to the author as well as post it on Amazon. It won’t be too long of a blog but will describe the essence of what it is to manage suicidality.

I will be ordering two books tomorrow when I get paid. They are books I normally wouldn’t purchase but I need a change of what I am reading. I still haven’t gotten through the book on the civil war or Andrew Solomon’s book, “Far From The Tree” (FFTT). Both books are lengthy, over 500 pages. In fact, I have a little over 500 pages to read for the civil war book. He just keeps dragging out the year 1861. And I am not the type to skip pages so I am plugging along as much as I can without getting annoyed. It took me 276 pages to get to the civil war alone!! If you want to read this book that discusses the economic ways of the war, Battle Cry for Freedom is for you.

FFTT I haven’t touched in almost two months, since I left the hospital. It made for good reading for nights when I couldn’t sleep and because I had a single, I could keep the light on until my meds kicked in or I got sleepy enough to go to bed. It is a very interesting book about disabilities in children and how their parents deal with it. Mostly I am reading about the families that are well off enough to have their child go through expensive treatments. He doesn’t seem to talk about those families that are no so well off and struggle to make ends meet. However he does talk about the organizations for the different disabilities he discusses.

Overall, today has been a productive day for me. I hope that tomorrow I am not too sore because I really want to go to Starbucks and work on my coauthored book. I think if I get out of the house a little bit every day, even if I don’t want to, it will help me in the long run. Trick is ACTUALLY getting out of the house because it is so easy for me to roll over and go back to sleep. But I have a few errands tomorrow so I’d like to leave the house and do it rather than stay at home with the laptop.

For two days straight now, I have crapped my pants. I am so disgusted because I thought I got everything after my BM today. But nope. I must have passed gas or something to make the stool come out. I am purchasing diapers online so I don’t have to worry about the funny looks in the store. Turns out that if I buy them online and spend $25, I get free shipping. So I am throwing in some batteries too. We need “real” batteries, like Duracell, for our carbon monoxide detector. My mother refuses to buy the good kind and so buys the cheap brand. We have had to replace the batteries twice so far this year, over the course of 6 months! It is annoying!! I am hoping on days that I am out of the house for more than four hours, I can have protection and save my underwear. Luckily, I didn’t leak today or I would really be hitting the gin.

I came home and thought I was “relaxed” as I haven’t done anything strenuous in the first hour I was home so I took my blood pressure to see what it was. Not a good reading, 145/100. I am upset with myself. I will be monitoring it from now on because yesterday at my doctor’s appointment it was high. I thought I had my blood pressure under control but I guess I don’t. Fucking pisses me off that I have another thing to worry about because it’s not like my body is going to tell me I am running high. I have to use a machine to do that. Now I really have to try and lose weight so I can bring my pressure down some. I wish I could decrease my stress levels but dealing with my father is not going to do it, especially if he is going to have surgery in the upcoming weeks. So I have to monitor my pressure to keep myself in check. If it gets any higher, I will have to inform my PCP. I can’t be letting it skyrocket.

Been up since four

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

Been up since Four

I have been up since four in pain. I took something to calm it down hoping I would go back to sleep but that doesn’t seem to be the case. I slept four hours before I was rudely awakened. I then had breakfast with my mother. We both had the same thing, an egg McMuffin. She made hers her way and I made mine my way. I then hoped to get some sleep but I had a cup of tea and that woke me up. I have been going since. I walked to the store to get some half and half for tomorrow’s coffee, but they didn’t have it. I was bummed so I walked a little more to get some exercise.

I have been playing my game since this morning. The only thing annoying is that the mouse seems to have a mind of its own. I can’t seem to place down crops with it going all over the place first. And trying to drag the homestead is torture. I literally have to hold on to something on the stead to move the board around.

I really wish baseball would play tonight. But it doesn’t until Tuesday. I can only figure they planned it that way so it doesn’t interfere with the NFL games (American football for my UK friends). All this rest is no good for the players, in my opinion. They will play like shit once the game starts.

Today has been a cool day but I still have my ceiling fan on. It’s a little stuff in my room as I keep the door closed at all times. I do this so I don’t hear the noise downstairs of my mother playing her dice game or the TV that is on close to full blast. My mother is deaf so needs things to be loud.

Today while on Facebook, it suggested my consultant as a friend. I couldn’t believe it so had to go to the profile to see if it was truly him. It was. I didn’t friend him because of professional boundaries, but thought it really cool of him to be on social media finally. Now if only I can get him on Twitter.

It has been a while since I last talked to him about stuff. I sent him my book, autographed and everything. I felt like he should have a copy as he has a chapter in it. I don’t know if he read it. He hasn’t written back to me about that. Come to think of it, neither has my psychiatrist really. She did say that is was very personal, which it is. Maybe it is too personal. I just know I haven’t sold a book in a month and that means that I will probably get charged a fee on my checking account. I just did some promoting via Twitter and a Facebook group. I don’t know if it helps but it is worth a shot. Self promoting is a big thing and you need energy for it, especially when you don’t have an agent. I emailed one back in September but never heard back so I don’t think she picked me. Oh well. Her loss, right? Right.

I know I should be working on my co-authored book but my ideas are running low and I think they are stupid. Plus I don’t know what to write exactly because there are no guidelines to really help me. And my co-author isn’t being to helpful with her general ideas about things. I need things to be specific. I am a condensed writer so I cut out the heart of the matter and just get right to the point. I already wrote 17 pages, which is a start but when I was editing, I realized I repeated the same thing three times!! So the best written lines stay and the rest get deleted. That is going to be so hard! I think the third set says it best though. I just have to work on the beginning a little more. Maybe if I write like I did my book it will help me. Like write the introduction, chap 1, etc. it will give me some sort of goal. I don’t know how we are going to mesh this. We haven’t talked about that because she has other fish frying right now. She hopes to publish on of her books sometime in 2015 so I have been giving her some leeway on our book. She wants to have it done by 2016 for the AAS conference. I don’t know if I will be able to attend. It is in Chicago and I would love to go as I love Chicago but my finances are nothing. I’m struggling as it is and saving money is not possible. I was hoping my book was going to be more successful than it has been but it’s not. I feel like a failure because it’s not. People tell me that at least I got a book done. Yea, but I care if they read it because what is the point of writing a book if no one is going to read it??

This week is going to be a long one. I have two doctor appointments for my father. I am going to be wiped out by the end of the week. I am hoping to keep my therapy appointment but it might have to be on the bus or at the train station. Those are my only alternatives as I have to be near my father’s house around 12:30 pm to get my sister’s car so we can get to his appointment on time. I am going to have wicked anxiety about this. Course, just thinking about it now is giving me anxiety. I might cancel the appointment just so I don’t stress myself out. Dealing with my father is going to be stressful enough as it is.

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.

it’s 0230

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

It’s 0230

I woke up around 0230 and I can’t seem to get back to sleep. So I decided to write for a little while.

I made it through the night not drinking. I am really tired but I can’t seem to sleep. Avoiding alcohol was huge tonight. Though I think that if I did drink, I would still be sleeping. Oh well.

My ankle is hurting me so I have taken some pain pills. One more day before I see the new doc about this. I am not too hopeful he is going to find anything wrong with my ankle. But I am scared that I will be placed in a boot. Just in case, I am bringing my old one with me. You never know what he will do. I partly hope that he orders another MRI to see what is going on with my ankle, to make sure nothing has changed since the last one. I know I won’t be having an injection and I will make that clear. I just don’t believe in them and they only work 50% of the time so why chance it. I don’t like those odds. I rather be on oral steroids than have an injection. And I will bring that up to him as well. A friend of mine was telling me that I could have adhesions in the ankle after all this time. I don’t like that idea either. But we’ll see what this doc says. I just hope that it hurts enough when I see him otherwise, I am seeing him for not. I don’t want to be in excruciating pain, but just enough for him to see what I am going through. I have a “rest day” today though with me being up this early, I am not sure how much I will be resting. Sometimes I sleep a few hours and then I am up and others I am sleeping till noon.

I don’t have new answers for the doc. Just the same, single question, “what is wrong with it”? Three years this has been going on and three years, no one can give me a direct answer. If it was a case of tendonitis, I have done everything to make the swelling go down and yet soon as I move it, it flares up again. I can’t be immobile. I also can’t run the risk of wearing a boot around the house for fear of falling down the stairs. Even without the boot, I run the risk of falling because I don’t know where my feet are. There have been a couple of time in the last few weeks where I missed a step or over shot a step and nearly toppled over. If I wasn’t hanging on to the banister, I surely would have fallen. That is the problem with CES, not knowing where your feet are. I am usually good about where they are but when I am tired or when I just wake up and need to go to the bathroom, that “sense” or mindfulness is not always there. My bladder and holding the contents in seem to take priority. Oh the joys of CES, Cauda Equina Syndrome. It messes with your proprioception (where things are in space relation) of things. I have this for a long time. It hasn’t gotten better. I just compensate for it really well. But throw in fatigue and that compensation is out the window.

Having a huge boot on my foot won’t help the proprioception much. It will actually make things worse because I won’t be able to feel my foot. Hence why I do not want another boot. I hope I am getting ahead of myself. Thinking of all the possibilities that he could do. I could be placed in a cast. I have before to be kept immobile. I am not working so that doesn’t see like a big deal. When I was working it was a big deal because I had to get around the place. My boss yelled at me because I had to call out but then I showed him the big brace I was wearing and that quieted him down some. I understand that you don’t want your best employees to call out, but when they can’t walk around the lab, they are pretty much useless, especially when a doctor tells you to stay off your foot for twenty-four hours.

All these things can happen. Or nothing at all. Less than 24 hours to find out what the verdict will be. And hopefully, my anxiety will be less.