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?

One Foot Wrong: The Pop That's Changing Everything.

I knew as soon as my foot hit the ground that something had gone wrong; I felt- in fact, I swear I even heard, a popping noise, felt something go bad around my right knee, before agony enveloped me and I fell to the ground, rotating so that knee wouldn't take the hit.

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.