Tag: CRPS (formerly RSD)

Don’t dream it’s over

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

Don’t dream it’s over

I heard this song today and am reminded that despite a long road to recovery, I am still stuck with the condition known as Cauda Equina Syndrome (CES). Today I talked a lot about it in my interview with the 1st years of medical school. There were like 5 or 6 students and three physicians in the room, one of whom was the person that interviewed me. He knew nothing about CES as he didn’t ask me one red flag symptom. He was an older gentleman so I am sure that he never heard of such a syndrome before. My psychiatrist was grateful I brought it to the students. She said she owes me one. But I don’t really know what that means. I just laughed because it was fun doing the interview.

My therapist read the last blog post that I sent her. She said that I summed up my traumatic experiences all in one paragraph. This left me feeling like “what is she talking about” so I had to read it. I always feel like my writing is cathartic so once the words are in a word doc or a piece of paper, they quickly lose their power in my memory banks. The paragraph was powerful and I couldn’t believe I wrote what I did. It made me wonder if I am ready to face the trauma I have endured over my lifetime, just one piece of it anyways. It is something that I have not discussed in great detail, not even with my therapist. But there is a song that keeps reminding me of what I went through and so it is on my mind a little more these days.

I have a beef with my doctor’s office. I saw my PCP’s Nurse Practitioner (NP) for a blood pressure check. My blood pressure is still in prehypertensive range. Not good. So instead of playing with the new blood pressure med I am on, she decides to add another medication. WTF. She was almost a half hour late so I couldn’t argue as I had to meet with my psychiatrist, and even my psych was like why am I being put on a third medication for the same condition?? I emailed my doc’s office to sort this out. I am not going to take it because it also acts as a diuretic, something I don’t need to be on. I already have issues with my bladder leaking and me being on something that is supposed to make the kidneys work better just isn’t going to fly with me. I also said that in the email, about the leaking piece, not about it not flying with me. I have enough problems and don’t really want to start wearing pads or diapers. So far I have been lucky to avoid them, but I think on days that I am going to be out more than a few hours, I might have to consider wearing them. I would use pads but they just don’t fit in boxers. I really feel bad for men who have to use tighty whities for pads. Least that is what I think they would have to wear. But I hate them as much as some men do.

I was talking to a friend today about a CES issue. She didn’t reassure me and said that I should talk to my neurologist about it. I haven’t seen her in over a year. And this issue I rather not be apart of my medical record. So now I am conflicted on what to do. I don’t even know if going to my neuro will help me with the issue. Course the easy thing is to stop doing what I am doing to cause the issue and problem solved! But I don’t know if I am having more nerve damage or not by ignoring the issue. What worries me is that I have a disc that is touching the nerve root of my issue. It isn’t compressing the nerve root so no one thinks I should have surgery. Although I am not advocating for more surgery as I most likely will need a fusion, I think that might be why I am having my issue. Either that or my nerves have suddenly have become awakened and now I just got to deal with them. Either way, it doesn’t look promising to me and it is an especially embarrassing topic for me. If I do see my neuro, at least I won’t have to mail her my book. I could just hand it to her!

The thing about my neuro is that she is great and all but her office staff sucks like yesterday’s garbage. Making an appointment is always a hassle, getting through to the office is always a hassle and then if I don’t have the copay, they cancel my appointment. Last time, they told me the wrong day of my appointment and I got charged for it. I have not paid it because they screwed up, not me. If they didn’t change the original appointment to begin with, none of this would have happened.
It has been a month now that I have been on an antidepressant. Since that time, my suicidality has decreased dramatically. I might not be euphoric, but I am doing okay. I don’t have mood swings like I used to. My sleep is still wonky but it’s better than it has been. The only sucky thing is that no matter what time I go to bed, I am always up before six. And on days like today where I had to be all over the hospital between my two appointments, it sucks. Even though I worked there for fourteen years, I goofed and made a wrong turn, thinking it would take me to the building I needed to go. NOPE. No access from the 2nd floor. It sucked because I then had to walk back to where I came from to go outside to get to the building I needed to be in. Lot of walking today. And my ankle is thanking me, oh so kindly. NOT.

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.

pain and sleep ramble

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

Got things done today

Last night I started the process of changing the bedding and sheets on my bed. See, half of my bed I use as my “office”. It has books, journals, my laptop and a couple of other items. So clearing it off was the real problem to changing the linen. Once I did that, I got the comforter off the bed and washed it. I knew it would take a couple cycles to dry in the dryer. I already had a set of clean sheets. Trouble was that today after I took my shower, I didn’t want to do anything. I had a rough night sleeping and thought a shower would wake me up. It had the opposite affect. But once the comforter was drying, I knew I had to change the sheets. I forced myself to do it and it went quicker than I thought it would. Usually I only have one clean set of sheets because I always put the clean sheets somewhere and forget where I put them. But the last time I washed my sheets I put them in my bureau where it wouldn’t get lost and hopefully the clean smell would stay on it. Score for me.

This is hard because it always hurts my back when I do change the sheets. It would be easy if I didn’t keep my bed as an “office” but it is easier to work from my bed than from a desk. I know sleep docs would have a fit if they knew. But I won’t see them as I know my problem with sleeping comes from my mood disorder than any other cause. Last night, I slept a few hours and was up at 0230. I wrote a nice blog, something about demons and that is all that I remember of it. I was in a lot of pain when I wrote it and also was a little drugged up with my pain meds. But I had to write. It was the only way I would get back to sleep. Around 7ish, I was finally ready to call it a night. I wish my sleep schedule would be normal but when I am in pain, all bets are off. And I was in so much pain last night it woke me up. Then I started getting cramps in my neck that just wouldn’t allow me to go back to sleep. It was a really bad night. Probably the worse since being home from the hospital. And I was so angry at my treaters. Angry that they had kept me alive. Angry that I was in so much pain and couldn’t sleep. Angry that I couldn’t vent with someone because it was 3 in the morning. I was so WTF at everything.

I am to have a lunch date with my aunt this week. But I don’t think it is going to happen because I have my appointment with my PCP this week. It’s an appointment I am not looking forward to. My blood pressure is still borderline high to high at times. It seems to be worse in the evening. I don’t know why. I will mention that to him as well. He isn’t going to be happy with me because I gained a few pounds while in the hospital. I have been trying to work it off but it’s been so difficult as all I want to do lately is sleep because my nighttime sleep schedule is so fucked up. Maybe I will go for a walk tonight. It can’t hurt. Well, I suppose it can. I just never know what will jack my pain up. Sometimes it is over activities. Sometimes its doing NOTHING but resting. I just don’t get it. I know that if I go up and down the stairs more than a few times, I will hurt. My ankle just doesn’t like the normal flexion it is supposed to have. But I really have no idea why I woke up in excruciating pain last night. I am so baffled. I know part of it is because I was sleeping on my left side (I usually sleep on my right). But I was in a deep sleep and for me to be woken up in severe pain, I just don’t get it. I wish I could talk to some doctor about it to help me figure it out. My PCP is useless when it comes to trying to figure out my pain. But then, he is not a pain specialist. And the pain specialists don’t have any answers for me either. So I am stuck with figuring it out on my own. I need to become a pain expert and study pain but the brain is so damn complicated. I am lucky if I remember the structures of the brain. I can’t even remember the amygdala from the gyrus. It has been too long since I looked at it and its pathways. My memory is not the same as it once was. I used to have photogenic memory. Now, I am lucky to remember things such as when I had lunch or breakfast.

They say not to use the word “demons”

by Midnight Demon, posted in bipolar, chronic physical pain, depression

They say not to use the word “demons”

In recent news about suicide, attempt survivors are asking that the word “demons” not be used and that the real “thing” be used. I forgot the term as it was many days ago and I don’t have that much of an attention span that I used to have. It got me thinking about my blog as the word “demons” is used.

I don’t really care what these people say, I am still going to have my blog and though I don’t talk about the “demons” in my blog, I mostly talk about how I feel, which is often suicidal. These suicidal tendencies often come out in the middle of the night, when I can’t sleep, and when I am in pain. I would write some horrible stuff and get a lot of people concerned.

Tonight the “demons” are out. I am hating everyone that has kept me alive the past few weeks. Though I could kill myself now. It doesn’t make a difference with the time frame. I am in excruciating pain and just want to end things. I am so tired of fighting pain. It used to be just psychological that the fight was about. Now, it is both physical and psychological and I am sorry but I can’t keep fighting both. It is too hard. I know that I will feel better in the morning, when I get a few hours of sleep. But right now I could write an email to my psychiatrist and tell her how much I hate her for keeping me alive. I could text my therapist with the same hate. But instead of doing that, I am just going to blog until I fall asleep.

What makes my life so special that I can’t commit suicide? Robin Williams was special. He did the deed. So do a lot of people, every year. They say that 39,000 people will take their life in a year in the US. And the number of attempts are in the hundreds of thousands. Or maybe it is a hundred thousand. We just won’t know because it is so underreported. Many people survive their attempt and often don’t seek medical attention afterward. It is so hard to kill the human body. It boggles my mind when I hear of homicide, though. Seems like that should be higher than suicide but it is not (and please correct me if I am wrong).

But aside from the global effect of Williams’ death, I still feel like it is my turn to die. I really don’t want to live knowing I am going to be in pain the rest of my life. It’s too much of a burden to think about. But I am lucky that all I need are a few pain pills to ease my pain. It doesn’t get rid of the pain entirely, but just enough that it takes the suicidal feelings away. I just took these meds but it takes a half hour or more to work. Chronic pain is a big risk factor for suicide. I know because I live with it every day. My treaters know that. That is why I am hating them at this moment. My foot is throbbing up a storm. I don’t know if it has to do with the weather change. My body can’t tolerate huge gaps of temperature changes. But I have no control over that and I am not about to move to another state. Yes, moving to California might help my pain but it will be isolating because I have a few friends there and most of my family are here. Isolation and being suicidal do not mix. That is why I stay at home. It is a preventative factor for my suicidal brain.

I don’t know why I am up at 3 in the morning. I woke up in pain and still my pain meds have not kicked in. The “demons” are still around me, wanting me to try and take my life. But that will involve getting out of my cozy bed and I am too tired and in too much pain to do so. I guess you can say I am too lazy to take my life. So I write about it instead. I won’t write about the methods that have been swirling around my brain. But one of them include the method Williams chose. He is a brave person. It takes a lot to kill yourself. I am not giving him praise, the media has already done that. But I am happy for him. People in the hospital didn’t understand that. And maybe you might not either. I am happy for him because HE is no longer suffering. HE succeeded where I am a failure. His suffering has ended while mine is still going on.

He died as a complication of depression. I like that term. “Complications of depression” yes, I like that term very much. But I doubt it will be used for my death. The throbbing has escalated. My foot is now on fire. And there is no extinguisher in the world that can put out the fire. So I take another pill. I hope that I am sleeping soon.