Community Compatibility: We Don't All Just Get Along

Audio of this post can be found HERE.

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!

A Deep Breath, and an (Unintentional) Test Fall

Last night, one of my housemates had some painting to do. He and his girlfriend cosplay, and, with a convention coming up this weekend, he was running out of time to finish up all the elements of his character.
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.

A Low Place, and a Long Letter

Dear Reader,

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?

Bentonite Clay? Guinea Pig Time!!

A few months ago, I stumbled into an article hailing the merits of bentonite clay, especially for skin. After a lot more research, I purchased a bag of bentonite clay powder, along with some rosehip seed oil and shea oil, from an online store.

It's been sitting in my spice cabinet ever since.

However, after a particularly hard two weeks (huzzah for bronchitis and being put on a prednisone taper), my skin was a mess. Since I have a grand total of one day left of prednisone, I decided that now was the time to suck it up and try out bentonite clay.

I chose my right forearm for the experiment, since for some reason my forearms got the brunt of the breakout, and are covered in red irritation. I mixed one part clay powder with 2 parts water (I used 3, actually, since all 2 did was turn the bentonite into a clumpy, half wet half dry unmixable mess). Mixing the clay was no picnic- it's a very thick consistancy, and you can't use a metal utensil because the metal does something to the clay (I'll link some articles if this  turns out to be an effective treatment), so I used a big plastic bowl and a whisk made of a nonstick material. When all the whisk did was give the clay mixture somewhere else to stick, I switched to a wooden and silicone spatula, which more or less did the trick.

Then, I applied a layer of clay to my forearm, wrapping my forearm in plastic to keep the clay moist (see pictures below).

Now, I feel a bit like poorly wrapped leftovers, but at least the clay is still moist, and isn't getting everywhere while it does its work. 

It's been ten minutes, and I think that, after another five, I'll remove the compress.

So far, the bentonite hasn't caused any irritation that I can feel- the skin under the plastic, however, is starting to feel pretty uncomfortable- if this works, I'll have to find a different way to do things so the rest of the arm isn't just touching the plastic.

Okay, it's 10:33 a.m... at 10:38, I'll remove the clay and see what effects it had, if any.

Here's hoping!

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.

'Round and 'Round..

Over the years, it's occurred to me more than once that a lot of health problems- mental as well as physical- carry the risk of the person with that problem falling into a vicious cycle.

This is, in my opinion, especially true of people with depression.

In addition to my eczema, I suffer from a plethora of health problems (which I'll go into some other time). Some are scary, some are painful, and all are inconvenient. However, while eczema wins the prize for biggest obstacle from me living the type of life I want, depression isn't that far behind.

In a perfect world, in my perfectly organized life, I'd have this down by now: taking a short shower to start my morning and a rinse every night before bed, changing my sheets every other day, moisturizing constantly, and keeping my environment under control- complete with a well placed humidifier, an air sanitizer, no dust, no clutter to attract it, no trash, everything meticulously organized and stored properly.

My reality, however, is very different. Frankly, my place is a mess. I have clutter everywhere- a mixture of clothes, shoes, textbooks, notebooks, art supplies, dishes, medications, lotions, and paper trash dominates every surface- except, of course, my closet, which is empty. My bathroom is in a similar state- except the clutter in my bathroom is- well, stuff that you normally keep in a bathroom, so I suppose that's a minuscule plus.

I own one and a half sets of sheets, no air sanitizer, and my humidifier has a filter that apparently needs to be washed or changed- I'm not sure which, and I have NO idea how to do it in any case.

And the worst part of all of it is, there is dust everywhere. It coats everything, and is impossible to escape from. And what's the cause of this dust, you ask?

Here's a fun fact, for those of you that don't know it. A primary component of dust is dead skin cells.

Among the symptoms of my eczema is that I'm always 'shedding'- my skin cracks, peels and flakes, and I lose a ridiculous amount of skin compared to the amount a person with normal, functional skin would lose in the same amount of time.

Dust is my number one allergen.

And the principle cause or origin of all the dust in my environment right now, is me.

Talk about one of life's cruel jokes, right?.

Like I said, eczema, while certainly the most dominant and detrimental of my health problems, isn't my only one. I also have asthma, and intestinal troubles; I'm developing new vision problems, and problems with my thyroid. In addition, I'm diagnosed with depression, ADD, anxiety, and bipolar disorder, all of which are treated and, for the most part, under control.

'The most part'- that's a pretty potentially damning phrase, I agree. What I mean is that, while my bipolar disorder is under control, there's only so much you can do about depression, ADD, and anxiety. But, for the purposes of this post, I want to focus exclusively on depression.

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!