Saturday, November 2, 2019
The Truth About Pain
One thing that's always bothered me about how people who don't suffer from chronic illnesses talk to those of us who do is the way that the 'Don'ts' talk about pain. Specifically, learning to ignore it.
I could never truly figure out why, or at least put words to it, until one night about 5 or 6 years ago when I ended up in the emergency room.
I'd been out at my favorite dive bar, and my back had been hurting all night. Every few minutes I would run to the bathroom. I was annoyed, and sore, and had never experienced anything quite like it before- a pain that grows almost so gradually that you don't notice until it's excruciating. I remember a family member picking me up and driving me to the hospital, trying to drive as gently as possible because every single bump or jostle made me scream in pain.
I was taken back pretty quickly- at least, I think I was- everything was pretty foggy thanks to the horrible pain. I wanted someone to knock me out- anything to make it stop. Finally, they put an IV into my arm and injected me with Some sort of painkiller. Almost immediately, the pain eased- and just as quickly I was out like a light.
That instance made something crystal clear to me that I had, on some level, always known:
Pain is really fucking exhausting.
I'm talking truly, mentally and physically exhausting.
So when people talk about getting over the pain or ignoring it, I always end up wanting to yell at them. Because, while it's true that pain IS a neural response- sensory receptors in our body send a message to our brains which process the sensation which we perceive as pain- it's not a voluntary one.
Think about it this way- pain is a way that the body has developed to tell you that something is wrong. But it's not like a comprehensive system you can just override with a few simple commands. The pain response is more like the anti-theft alarm on an older model car. Whatever sets it off- be it someone kicking the bumper or actually breaking in- the ultimate response is the same: the alarm sounds. Now, there are only a few ways that the alarm stops. You can damage the car, you can temporarily disable the alarm, or you can wait for it to reset (or speed up the process yourself).
Leaving off the car alarm analogy, my point is that the body's pain response CANNOT actually be ignored- if you are in pain, it takes up some of your mental capacity. YOU may not be thinking about it constantly, but it is constantly running in the background- that response triggering those receptors over and over and over, making your brain work a bit harder. Making you use more mental energy.
I recently tried to explain the premise of this blog post to someone. "But that's not really true," he argued "Because some people can get over it." For 'proof' of his concept he cited a football player famous for getting hurt- a lot - and getting right back in the game. Comparatively, he drew my attention to another player famous for getting a relatively minor hand injury, who was out of the game for a few weeks.
There are several problems with this comparison- but it, itself, brings me to my other point: Not everyone deals with pain the same way. The wonky and wonderfully frustrating thing about the human body is that there are subtle differences in the way we experience pain- and in the level of energy it takes to process it.
In fact, the comparison between those two players highlights the very problem of disregarding that fact- one person is not 'lesser' than the other because their pain tolerance is perceived to be lower. You cannot, and should not, compare the way one person performs while in pain to the way another does.
It comes down to a technique that we learn early in our lives as a way to relate to each other: comparing our perception and experiences with those of another person in order to establish a connection with them. It's a crucial lesson for a child because it introduces the basic concept of empathy. "You are like me, so I can relate and should act accordingly- I should treat you the way I want to be treated because you are the same as me."
But the important thing to remember is that that is a very simplistic version of empathy.
The advanced version that we must use in order to form full fledged adult connections with each other which are not harmful or dismissive is this:
"You are like me, and, even though we are not the same, I will respect what you are going through without judgement by comparison."
To people who don't suffer from chronic pain: Please be mindful of how you speak to the people in your lives who do. Exercise empathy. Pain isn't voluntary, and turning it off isn't a choice. Overall, remember that telling someone who is in pain to get over it or ignore it is unhelpful. All pain is valid, and everyone is different. Stop telling us how we should deal with it.
Monday, September 16, 2019
Now With Sound!
Hi everyone!
I just wanted to provide a quick update and let you all know that as of today, every post from 2019 on will include a link at the top to an audio version of that post. This is done in an effort to increase accessibility. I will also be tweaking the blog style and structure over the next few days or weeks to make it easier to read and view.
If you have any suggestions for ways that I can make things easier for you or anyone else to enjoy the blog, please do not hesitate to reach out- I'm always willing to learn!
Also, if there are any particular posts in the archives of this blog that you would like the audio version to, please shoot me a request, and I will record them for you.
Community Compatibility: We Don't All Just Get Along
One of the things that makes life with chronic illness difficult (at least for me) is the struggle for community. Though these things we go through are incredibly personal, it helps some of us to be a part of a group of others who know the struggle. People tend to think that just because you have the same disease, you'll all have the same mindset for dealing with said disease. This could not be further from the truth.
For example, I just recently joined a Facebook community for people who have eczema. It's a rather large group- thousands of members, actually. So far, it's been rough to be a part of it - and not just because of all of the posts which give me vivid flashbacks to growing up with severe eczema as a child, and then a teenager. Actually, what's pushing me away is the mindset of the majority of the people.
I am someone who absolutely hates unsolicited advice. I have a very negative reaction to it, because I've been subjected to an inordinate amount of it (especially regarding my health issues) for my entire life. That is why I try my hardest to never give advice unless asked (or given the okay). That's just who I am, and frankly, nothing alienates me faster from a conversation than unwanted advice - especially from people who do not know my specific situation.
This is a mindset that the majority of people in this group do not share or respect. People are bombarded with advice, from practical to absolutely ridiculous, on every single post- whether they asked for advice or not. It's, frankly, daunting.
But even if we ignore that glaring social faux pas, a big part of compatibility with a community comes down to sharing the same ideals and, to an extent, similar views.
Example: If I swear exclusively by the miracles of modern medicine to deal with my skin problems, I probably won't find a lot of connection in a group devoted to holistic health solutions for eczema.
Conversely, if I were only interested in natural remedies for my eczema, I would feel very out of place in a group which follows the progress of the newest medicines and treatments becoming available.
In either of those situations, despite the core trait that we share, we wouldn't, at the end of the day, have much to talk about.
I guess what I'm trying to say is that community is important- but a supportive community where you feel listened to and comfortable in is essential. Life is hard enough without our support systems being stressful, too.
So for me, at least, the search begins again! I hope that everyone looking for a community finds one that's an excellent fit.
Until next time, friends!
Sunday, September 15, 2019
Aaand We're Back!
Hello everyone!
It's been about 3 years since my last entry into this blog. Frankly, and possibly ironically, I find that the times that I'm struggling the most with my chronic health issues, and therefore have the most to say, are also the times that I least want to write about it.
Regardless, if you're reading this, I want to give you a quick update on my personal health situation, and then share some news about this blog and what to expect in the weeks - and hopefully months- to come.
On a personal note, the past few years have been rough, health-wise. I've had a few surgeries, way too many trips to urgent care and hospitals, and a new diagnosis. Throughout it all, of course, the thing that remained irritatingly constant was the eczema. I tried a few new treatments for that, too! But more on all of that later! On to the big reason that I'm writing this:
Someone recently said to me that it is human nature to fear what we do not understand. But I counter that that is an incomplete idea. It is human nature to fear what we do not understand- and that is what drives us to try to understand everything. We are curious creatures- we never like to be in the dark for long. In the spirit of that, I'm revamping Scritch to be an open exchange about chronic illness. I'll still be primarily focusing on my life with the chronic illnesses I struggle with- after all, that was the foundation of this blog, and I would never dream of writing for another group of people when I have no idea what they're going through. But I hope to tweak the structure to include a little more education and exchange of ideas, highlighting different views on symptom control and bettering quality of life. I'm pretty excited about this, and, even though the idea is still new, I hope once I can iron out how to do it, it can become something great.
If you're still reading this, thank you! I hope you'll continue to visit, and join me on this very uncertain journey.
Tuesday, February 9, 2016
A Deep Breath, and an (Unintentional) Test Fall
He was using spray paint, and decided to do it outside, in the backyard. He'd hardly begun before it started to sprinkle.
Meanwhile, I felt the urge to take a walk. With a word of sympathy for his bad luck, I bundled up, pulled a hood over my hair, shoved my cell phone and inhaler in my pocket, and started off into the cold, rainy night.
Rain has never really bothered me. Sometimes I love it; I still find being out in it therapeutic at times, but since my fall, I had been afraid of it.
My need overcame my fear, though, so along I went, making steady enough progress through the neighborhood, sticking to the streets with the most lights on...
Eventually I ran out of those, though, and my leg was getting tired, so I retraced my steps back towards the house.
I got there, walked through the door, and was met with the strong smell of paint. It went into my lungs and I immediately knew that this wasn't a good plan, so I told him the paint was getting to me, and went back out.
I realized I had nowhere to go.
I didn't feel like walking again.
I didn't really feel like being alone.
There was nowhere dry to go.
Shrugging, I settled myself on the front steps, trying to pull my coat down so that I sat on it, instead of the wet concrete. It didn't work.
After a few minutes, my ass was numb, my pants were wet, and going inside and facing the paint fumes seemed a much better option than staying out.
This turned out to be a mistake.
I walked in and the fumes were much stronger. I started coughing, as they entered my lungs, threatening to choke me.
I made a beeline for my room, trying to hold my breath as I walked through the kitchen/dining area, where my roommate had been doing his thing. I almost made it, but right at the turn towards the backdoor and the tiny hallway that led to my room, a cough caused the breath to whoosh out of my body, which immediately tried to replace it...
Coughing so hard I thought I would retch, I jerked open the door to the backyard and barreled outside.
I didn't make it very far.
Earlier that day, the ramp which had been installed for my move home from the hospital had finally been dismantled. Finally, the brick 'deck' with stairs down to the actual patio and backyard were exposed.
It turned out that they were also incredibly slippery.
I made it about two steps before wiping out- going down in a spin, (with all my weight banging into my bad knee and leg) to lang solidly on my back, inches from the muddy grass.
Incredible pain shot through me, extreme protest by my body for putting it through this type of thing, but there was no 'wrongness' like the day I broke my leg. A small part of me relaxed at that, but she wasn't at the wheel, and the rest of me Was Not Happy.
"F---!" I shouted, then- "Goddamnit!"
I lay there, not moving, rain falling on me, cool drops hitting my face and neck, for a minute before two of my housemates appeared over me.
"Did you break the other one?" one of them said
"Shut up." I snapped, still biting back more expletives as my leg continued to yell at me.
I finally moved it, cursing as I did. I sat up, carefully. Still no huge amounts of pain from anywhere else, no feeling of wrongness.
With great difficulty, I stood, and made my way inside. My leg threatened to give out on me- even the feeling of the fabric of my pants on my knee hurt. A black mood settled over me. I was embarrassed. More than that, I was royally pissed off. I had had enough happen that day, and the fall, the subsequent consequences, were too much to deal with on top of it. I stomped (figuratively) around until I was finally able to make my bed, strip down, dropping my muddy, wet clothes in a pile on my floor, and curling under the blankets, without doing any of my skin routines.
It's the next day, and I regret that last decision. My skin is worse, of course. Especially around my eyes.
My leg is angry too, still- the muscles in the back of my knee are so tight and painful that I can't fully straighten it. I'm limping again, too.
There's at least one good thing about this though. The way that I fell, I really could have- and probably would have- broken another bone. Maybe more than one. It was very fortunate that I was able to take the impact with my knee, and rolled onto my back without my limbs flailing. Yes, I hurt. Yes, I'm limping. And that's incredibly annoying.
But I'm not broken again. And I very, very easily could have been.
So, there's something I should remember to be thankful for, at least.
Thursday, February 4, 2016
A Low Place, and a Long Letter
I stumbled onto your account and I have to say that every post you make, I identify with. I know you have your own story, but I wanted to share mine. You don't have to read it, of course, and I'm really sorry if it's horribly inappropriate. I just figured that maybe you'd understand.
I've had moderate to severe eczema since I was a baby. I grew up with the constant itching, pain and discomfort, the sting and burning agony of certain lotions and topical treatments sinking into my skin, and the far too constant steroid tapers. In my late teens, I was put on immunosuppressants- Cyclosporine and then Cellcept. They worked for awhile, and I basked in my smooth, breakout free skin that didn't react to everything I touched. All too soon, they stopped working, though, and my eczema returned with a vengeance. At times, it covered 80% of my body- once or twice it was so bad that I was almost hospitalized- my entire body was a mass of weeping, red raised skin, often infected.
I would end up going to the doctor, of course, or an urgent care center, and always the doctors put me on a long taper of prednisone, starting with a pretty high dose, gave me creams and sent me home, where I could only curl in a ball, wrapped in soft flannel in my bed, not moving, hoping that the itching, burning, bleeding would stop soon, that the steroids would start working so that I could function again.
The cycle continued. Medicated creams and ointments, something triggering a reaction, and, when I failed to get that breakout under control, ending up on prednisone. Once, a doctor at my local urgent care asked me when my last steroid taper was, and I realized that I'd already been on at least 6 rounds of it so far that year. He cautioned me that prednisone couldn't be used that much- that it had to be a last resort, because constant use did cause long term problems- like lower bone density, for example, and loss of skin elasticity (which had honestly already begun- I already had deep, ugly purple stretch marks on my upper arms, inner thighs and stomach). I'm ashamed to say that I didn't listen to him- or, at that moment, I did- but the next bad breakout caused his words to fade into the background. I had a life to live. Prednisone worked. Nothing else seemed to. My breakouts escalated so quickly that they needed treatment.
Besides, I'd been taking prednisone since I was a little girl. Not as often back then, but I certainly remembered the awful taste of those little white tablets, not to mention the crankiness, the occasional manic episodes, and, above all, the compulsion to eat- that little voice in my head telling me 'we want this' even though my body wasn't hungry. But those effects were the only ones doctors warned me about- no one had even hinted at long terms problems. So, I suppose I was still stuck in that mindset.
Of course prednisone wasn't bad for me. I'd been using it forever.
Then, this past October, I stepped off of a high curb with a locked knee and ended up with a compression fracture in the tibia of my right leg. Two, actually, as it turned out- one of each side, high up near the knee. I needed surgery, had two plates and several pins put into my leg. The nurses, doctors, techs, all asked me "So you fell, right? You fell and felt the pain." "No," I answered, over and over "I stepped off of the curb, felt a horrible pain, and then fell." The surgeon told me that I should have my primary care doctor order a bone density test.
I was in rehabilitation for a few weeks, and stuck in a wheelchair/using a walker for a few more.
Now, I can finally walk again without a cane.
And I finally got the test done.
It turns out, my bone density isn't normal. It's lower than it should be.
Now, I look at my body, at the deep purple stretch marks that seem to cover it, the heaviness that prednisone-fueled overeating has caused, the deep scars on my leg, and the eczema, that persistent eczema, all over, always there, even on my eyes so that they are stuck shut most mornings, even on the bottom of me feet so they itch in my shoes, even on the most private parts of me, and I hate what I see.
I think about my bones, I wonder what I can do, what could cause the next break? Will it be the simple stage falls I used to love to do? A fracture from the kickboxing I had planned to start? A snap while I'm running in my neighborhood, or if I trip while walking?
Eczema, the treatments, and the choices I've made have ravaged my body.
I didn't know any better, not really. But that doesn't matter, because there's no going back now.
I'm only twenty-six years old.
Where do I go from here? I try to think about that every day. Every day I look for an answer. But I can never find one. I get unsolicited advice all the time from people who mean well but have no idea what it's like. I get lots of looks, judgement, unkindness- people moving away from me as if I'm contagious. I feel like hiding my face- I never want to go anywhere, even though I hate being alone. Any thought of trying to date is instantly dismissed; who could be attracted to me, as I am?
I have no answers, myself. Only questions that I can't ask anyone in my life, because none of them know where I'm coming from.
What is there to do?
How does anyone get past this?
Why, no matter what I do, can't I get better?
Tuesday, October 27, 2015
One Foot Wrong: The Pop That's Changing Everything.
Outwardly, I screamed, lying there, grasping at my leg in the intense, gentle and cautious way you do when you know you've seriously messed yourself up, but are afraid that touching it will make it worse.
"That's not right," I remember exclaiming between the stream of profanity as my mind raced to process all the signals my body was sending me, the internal damage assessment. "That's wrong- that shouldn't be like that."
Facedown on the cool floor of the parking garage, I waited, trying to breathe, for the ambulance my friends called to come.
They checked my leg for telltale signs that usually show up in a break almost immediately- mainly, swelling and bruising- but neither were there. Still, when they moved my leg, I shouted out.
Even as I struggled with the pain, I scolded myself for the reaction- after all, all I'd done was stepped off a curb. My foot had landed normally, more or less- just the position of my knee was wonky (poor timing, bad judgement as far as the height of the curb); it had locked straight when it should have been bending. It was a move I'd made before and, while uncomfortable, had never resulted in damage. So, I figured, I couldn't have done anything too serious. Perhaps I tore something, perhaps I tweaked a nerve or- popped my knee partially out and back in wrong. I don't have a lot of knowledge as far as the anatomy of my limbs, but I was mad at myself because I kept thinking 'You couldn't have done anything that bad, and yet here you are, handling what seriously isn't even the worst pain you've experienced so poorly. You're being a wimp about this. Get a hold of yourself. Calm down.'
The paramedics gently and carefully loaded me into the ambulance and set off. Every time my leg jolted or moved, it continued to send signals- not just of pain, but of wrongness. Things weren't moving together as they should be. There was a sense that one part was moving out of sync with everything else. It was an extremely disconcerting feeling.
That was two days ago, and now I know that that feeling probably means that something is actually broken.
When I had stepped off that curb, the pop I felt/heard had been me fracturing the tibia of my right leg. Not a standard fracture, either. It's called a compression fracture, and it basically means that my bone broke- but also kind of crunched inwards on itself.
Because of the type of fracture, I'm going to need surgery. More specifically, I'm going to have at least 1 metal plate and a few screws put into my leg. It's possible that I will need a plate on either side. From what I understand, the surgeon won't know precisely until he opens me up.
So basically, I stepped off of a curb- that's literally all - and managed to break myself in such a way that I'll actually need reconstructive surgery that will add hardware to me which will be there for the rest of my life. I stepped off of a curb, and ensured that for the next six months, my life will stop.
I won't be able to have a job that requires any regular commitment.
I won't be able to even put weight on my leg for the first 3 weeks, at least.
It will be 6 months before I will be able to walk without a cane again.
I won't be able to have classes.
I can't finally learn to drive.
I can't go many places.
I won't be able to spend any real time without my leg elevated.
I'm trying really really hard to find a good outcome, but it's still early and all pretty overwhelming. But sitting here in my hospital bed in this sweltering room, I have little else to do but think...So this is probably far from the last post on this topic.
It's a big change; a huge change, a kick in the teeth when there's already so much to fight.
But I guess for now, I'll just have to see what happens next.
I have a feeling that my posts aren't going to be particularly well written over the next few weeks...So, sorry, reader, if you are out there, but as always, feel free to stay if you'd like.
Monday, January 19, 2015
The 'What Do' of Changing How You Eat: (Smeeps Crosspost)
For awhile now, I've been trying to plan my food for the week ahead of time, and do shopping and cooking and all that jazz.
I have, for the most part, been unsuccessful. Today, on that theme, I found myself writing a post about the difficulties of changing the way you approach food when you frankly have no idea what the hell you're talking about. It occurred to me that this post - surprise- is health related! So, I figure this is a great time to exercise my right to cross post.
The post can be found here.
You want a quote? Well, I thought you'd never ask!
"I, like many people in the world, eat too much junk. I eat out too much, and my food choices need a serious overhaul- I know this. I am aware of it every damn time my stomach gets mad at me after a bad choice, or when my mental energy is shot, or I'm hungry even though I JUST had a really heavy (and probably fattening) 'meal' not an hour and a half ago.
The thing is, I desperately want to change that, in the moments of clarity in the storm of chaos that encompasses life management when you have chronic health issues and a generally 'work in progress' life, I dream of healthier food choices and how they'd change things."
Thursday, August 14, 2014
Bentonite Clay? Guinea Pig Time!!
Monday, July 14, 2014
Once More, With Feeling
It's just after midnight, another weekend gone, and I'm lying in bed in my cluttered room with Lucy, as she contentedly snuffles around with a black and orange duck toy left unattended by another of the household canines.
As I watch her, playing a sedate game of 'tug' as I grab the duck, my hand under the blanket, and she tries again and again to free it, my heart is calm. For these few moments, the world has shrunk down to encompass the goings on of a placid game of tug of war.
She wins. Comes and sits, staring at me, expectantly. I don't know what she wants, so I just guess- I reach out and I stroke her; her silky ears, her soft, warm head, her neck fur which, like the rest of her curls has been cropped off in an attempt to give her some comfort in the coming heat, down to her chest, where I slip my fingers under the straps of her harness and scritch her there. She sighs, her chocolate eyes sinking closed slightly. I talk to her softly, tell her how much of a good girl she is, and how much I love her.
I realize that I tell her that a lot.
I wonder, and not for the first time, whether it's weird how much I care about this being who I can't even communicate with. I don't know what she wants, what her favorite way to be scritched is (if she has that one place that will turn her into a puddle, I haven't found it), or what she really likes to play with (the search for the ultimate toy is ongoing).
I'm not sure what her facial expressions mean, or how often her tail should wag. I don't even know how much to feed her since she's 10 pounds bigger than breed standard (not fat, but genuinely larger built).
Mostly daunting, though, is the question of whether or not this beautiful girl is happy.
It may seem strange to some people, how much I care about this mystery being in my life. But the truth is, as much as I don't know, sometimes she's the thing that makes the most sense.
Thursday, May 1, 2014
'Round and 'Round..
Or, how depression works with my skin.
Having skin that hates you is pretty damn hard at times, to say the least; one of the biggest problems comes from when you can't move without pain or discomfort- when your skin feels tight and raw, or you've gotten a mild skin infection all over and it's hot and itchy and painful to the touch. A lot of the time, a bad breakout makes you feel like your nerves are wrecked. You're hypersensitive- you feel everything (and not positive feelings), about ten times more than you should.
And when your skin hurts or burns or causes you intense discomfort whenever you move, well- moving is the last thing you want to do.
One of the best images I've seen for the 'vicious cycle' of eczema is depicted in a blog I will hopefully be linking to a great deal more, which I am aiming to introduce properly later on today.This is the image from the blog:
I actually made my own little chart, to try to describe the basic aspect of the vicious cycle. I made it on creately.com, but it still looks like it's in editor. Why, you ask? Because you have to register in order to save your projects.
Thank goodness for screenshots.
And that's my life in a nutshell- a vicious cycle that goes 'round and 'round.
Well, the battle continues, as ever.
Fingers crossed that I get my wish and am able to come back shortly with a nice surprise!
Cheers!

