Friday, February 8, 2013

Day 274: What's Luck Got To Do Got To Do With It?

If my skin were a baby, it would be born now. Nine months seems significant and for some reason, seems like it should hold some kind of finality for this journey. All I have been doing is watching every cell of my skin reddened then flake off, again and again and again, for the past nine months...but it's not done yet. It's no longer the ONLY thing on my mind, but it's certainly the #1 thing on my mind and I am sure I have wasted countless hours thinking about it, reading about it, trying to do something about it, itching from it, and hurting from it.

If you are starting TSW, there is one thing I can say for sure: you will put a time frame on it no matter how many times you are told, "Don't put a time frame on it." You will think you will probably be one of the lucky six month healers. You will think that by doing X, Y, or Z, you will be able to speed it up. You will think that it could not possibly take that long because nothing takes that long nowadays. You will think that if a whole person can get created and built in nine months, your new skin couldn't possibly take that long.

You might not ever verbalize this, you might say you agree that it's impossible to know how long this will take and that you know you're in for the long haul...but deep deep deep down inside, in your heart of heart, secret of secret, you will hope to be lucky. 

I hoped to be lucky. I still hope to be lucky. And at the same time: I am lucky. After years and years of thinking I was just one of the unlucky broken ones, cursed for no rhyme or reason with horrible incurable eczema, I found out that I'm not broken. A little poisoned and worse for the wear, maybe, but nothing that some time (a lot of time) won't (eventually) heal. I'm lucky because my health and skin problems stemmed from something that can be changed. I can be fixed. This is not life long. This is not incurable. This is not permanently scaring. This is not fatal.

This isn't to trivialize the hell we go through, all the miserable hours spent itching and crying. There is something to be said for the anger and desperation and mental exhaustion and emotional breakdowns that we go through again and again while healing from topical steroid damage. When you're at your lowest of lows, it's hard to hang onto the prize at the end of this race. When you think you've hit rock bottom only to fall another hundred feet, it's awfully hard to imagine that you're lucky. You don't feel very lucky. You feel miserable and you wonder if it's ever going to end. Guess what? It will. It will end and that's what makes you lucky.

I'm lucky.

There's a reason why people tell you to not put a time frame on it. It takes as long as it takes. It's done when it's done. And there's not much you can do about that. I thought I would be done at six months, too. I thought I would be lucky and I am. This is not meant to discourage anyone - it gets better the longer you are off topical steroids. Month 6 is better than month 3 and month 9 is better than month 6.

You'll have a better handle on what makes you feel better, you'll have (mostly) accepted that whatever happens will happen, and you'll have (mostly) stopped fighting the process. You'll probably have seen visible progress so you know that even if you flare again or even if you flare regularly, you know the process -- flare then calmer, again and again. But even though it's better, it's not done. Pink is better than red but pink is not the color I'm supposed to be. Dry is better than itchy but dry is not the way my skin is supposed to be. Waking up once or twice a night to scratch is better than being unable to sleep at all but sleeping with no problem is the way it should be. Itchy sometimes is better than itchy all the time but... Better is not done. Healing is not healed.

And so you hope to be lucky. Everyone hopes to be lucky. But you are lucky. You know what the problem is, how to fix it, that it can be fixed.

Whenever I wander onto an eczema website or forum or blog, I am struck by the despair I feel from every one of those posts. I know that probably sounds over dramatic to people without skin issues - after all, it's just skin. It's just cosmetic. To those people, I would say spend twenty minutes reading anything by a chronic eczema patient. It's not cosmetic. It's not superficial. There's pain and itch and cracked skin and rashes and more itching but beyond those physical symptoms...

Eczema becomes you. It's the face you show the show the world, the hand you shake with, the arms you hug with. When you're covered in ugly rashes, you are ugly. You worry about what every new person thinks when they see you, you don't let people get very close because they'll see just how flaky and dry you are, you avoid holding hands or giving high fives, you try to be invisible because all you are is ugly. It consumes you. You waste time and money and tears visiting numerous doctors and dermatologists and allergists, only to be told three things: one, that you have incurable chronic eczema that will never get any better; two, you must control it with topical steroids; and three, you must be doing X-Y-Z if it gets worse.

X-Y-Z are the things that every magazine article about eczema will advise you to change. You take too many hot showers, you don't eat healthy enough, you aren't taking your vitamins, you need to moisturize every two hours, you have the wrong shampoo, you live in the wrong climate, you go outside when it's cold, you go outside when it's hot, you have carpets, you have pets, you must be allergic to something, you get too stressed, you use the wrong soap, you wash dishes without wearing gloves, you swim without rinsing off the chlorine, you use makeup with too many chemicals, on and on. X-Y-Z are all things you have been doing since you became one of the unlucky ones but doctors can offer no better advice than Cosmo for your $170 visit fee.

How could you not feel despair? Hundreds of people that are told day in and day out by supposed experts that they will never get better...but also that it's their own fault. Told they will never get better...but here's a list of things they should be doing if they want to be better.

All the while, they are being treated by the cause of the eczema. They are smearing on the poison that causes the pain, looking despairingly for a cure that will not be found in a pharmacy.

I know it's not my fault. I know I will get better. This makes me lucky.

We don't know how long topical steroid withdrawal will take. It gets exhausting and painful. It's a long night with no sign of morning in sight and yet you hold on, maybe just by a thread, to the hope of dawn. Try not to give too much weight to what month it is or pin hope to a certain date. At the end of the day, the only way out is through. There are no road signs and sometimes the road isn't paved. We know there's a light at the end of the tunnel, even though we don't how far the exit is.

It takes as long as it takes. It's done when it's done.


  1. This is a beautiful post about the TSW journey...thanks for sharing.

  2. It's 3:52am. I'm awake, flaring, swollen arm, itchy neck and hanging on by a thread.
    Your blog is the best that I've found.


  3. I'm going to share a link to this post on my blog tonight. Do you mind? If so, I'll remove it! I just love this post so much!

  4. This is the most beautiful thing I've ever read in regards to TSW. I've been thinking the same thing for months but never could have put it into words. Thank you for giving me the words to help comfort my aching heart. I'm currently on month 9 of withdrawal and still fighting. Thank you again for sharing.

  5. Really beautiful words!