Monthly Archives: April 2013

TSW, 85 Days – Thoughts on Healing Time

WHEN WILL I HEAL?

That’s the question on everyone’s mind going through TSW.  Although I wish I knew when the “endpoint” would be, just like everyone else, it’s probably good that we DON’T know, as maybe that would be discouraging.

I have accumulated various perspectives on healing time from the ITSAN forum and from other TSW blogs:

The general consensus seems to be that an adult going through healing will take at least a year.  Anticipating a shorter recovery than this may be setting yourself up for disillusionment, unless you were a very short-term user/used very mild creams.  Although having complete healing in a year doesn’t necessarily mean that you’ll have a whole year of hell – the symptoms may become more mild and tolerable well before that, but not have 100% healing.

I have read comments from people on the forum that are nearing a year or even longer (18+ months) and they are STILL flare-y and miserable.  However, these are often people that used strong steroids on large areas of the body for a long time.

Regarding steroid strength, my blog-friend Louise from the UK has just posted a great, informative post about topical steroid potency.  The potency of the strong steroids is shocking!  Safe to say that someone who slathered Clobetasol all over their face is likely going to have a rougher time of it than someone who used hydrocortisone sporadically.

This post is a little bit all over the place, but before I ponder factors on my own healing time, I have been thinking that I actually was going through TSW a bit back this fall, before I knew what was going on.  I had overall crappy skin on my face from September 2012 through January 2013 (and late January 2013 was when I began official withdrawal).  I would get a few sporadic (and DRAMATIC) “breaks” where I would wake up with smooth, nearly flawless clear skin on my face for a day, and then the next day it would start to regress and get bad.

Because, try as I might, I couldn’t trace these breaks or flares to anything specific that I was putting on my face or ingesting (with the exception of finding out that Aloe and Beeswax highly irritated my skin), I can only think that this had to be a form of TSW.

In addition, I think that my use of steroids in the last 1-2 years is what “sent me over the edge” of addiction, so to speak.  I had used steroid creams sporadically starting about 6 years ago, when I was 20.  If memory serves me, I had mostly problem-free skin from about 21 to 25 years old.  Keep in mind that I did still have eczema, so I’m sure I had the odd flare-up, but I was nowhere near as obsessed with my skin as I am now – there was no reason to be, it was manageable and controlled!  Therefore I believe that I wasn’t “addicted” before, but because the skin seems to remember the cumulative use of steroids, the more recent instances are what sent me into full addiction with spreading rashes over much of my body and now withdrawal.

One common guideline for healing time can be found on the ITSAN FAQ page.  One of the foremost doctors that has been involved in topical steroid research believes that it takes 10-30% of the time you used topical steroids to be fully healed.

This is tricky to think about, especially for someone like me who didn’t use them constantly for days at a time.  Does this mean 10-30% of the 6 years from when I first started using them?  Or 10-30% of the total time I used them, which would probably only add up to about a year?  It really has to be the first one, because if it was the second one, I could be mostly healed by now at about 3 months in, and I am not.

Therefore, it appears that I am looking at 6-18 months of healing time.  Another blogger I talked to who is much farther along in TSW than me has noted that the skin has 7 layers that the body has to repair, and you are looking at multiple weeks for the body to regenerate each layer.  So let’s say it takes 5 weeks to regenerate all 7 layers, then that would be 35 weeks, or close to 9 months.  This really makes a lot of sense, because let’s say you have very, very damaged skin and it takes 12 whole weeks to repair one layer.  Then that would mean 21 months (or more), which is an accurate timeframe that hardcore users have taken to be fully healed.

Some other factors to consider are the use of oral steroids, use of steroids in childhood, using topical steroids on areas that have very high absorption rates (like the face, eyelids, or groin), and cumulative use.

For me personally, I do remember being given a dose of oral steroids once in childhood for a bad asthma attack.  I also was very sick with Mononucleosis in the winter of 2010 and I *believe* that I received some other kind of steroid shot, but I’m not certain what it was.  However, to my knowledge, I wasn’t on stuff like oral prednisone or anything like that.

I also never used topical steroids in childhood, and I never used them for a long, cumulative period of time.

However, the big strike against me is that much of my topical steroid usage was on areas with very high absorption – my eyelids/eye area and my face.  So it will be interesting to see how exactly this plays out.  Summer is coming and it is my very favorite season – I want to be able to enjoy it and wear summer clothes and even bikinis and go swimming and running and everything.  Hopefully I heal enough to do at least some of that while summer is still the season.

Re: skin progress – I am entering another “calm phase” and it is such a relief to not be itching constantly.  The TSW journey is nothing less than hellish and discouraging (and I didn’t even have the awful time of it that some people have – I wasn’t completely debilitated and I could still work at my desk job), but entering another healing phase feels like a gift.  Don’t lose hope, my TSW friends!

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TSW, Day 82 – Punished for Doing Nothing Wrong

I just walked past a newspaper that was lying on the table and that headline is what caught my eye, “Punished For Doing Nothing Wrong”.

It made me stop and think.  THIS is exactly why TSW hurts so much, emotionally and physically and mentally.  Because all of us, in good faith, accepted these steroid creams prescribed by doctors.  We just wanted to manage our eczema and get it under control.  It is not our fault we’re in this predicament of feeling trapped in our itchy, red, bodies feeling hopeless that they’re ever going to emerge looking new and fresh and healthy-skinned.

If I was a drug addict, who had consciously chosen to pollute my body with heroin and meth and crack, and was now reaping the repercussions of withdrawal, then sure, in many ways, I probably deserved what was coming to me.

But that wasn’t me.  All I was, was an atopic girl with a history of mild eczema who didn’t want to have rashes.  I was even one of the few that would literally sit down with the folded medication info that comes in the box and READ the whole thing!  I wanted to be informed about what I was putting on my body.  But it never says in those pamphlets, “Hey, if you use these for more than a few days, your skin may get horribly addicted and you’re going to have to deal with a huge variety of disgusting, unsightly, maddening symptoms that are a whole lot worse than plain ol’ eczema”.  Nowhere in the printouts for Desonide, Protopic, Elidel, or Mometasone furoate does it say these things, or even HINT at the notion that your skin can get addicted and then go through a withdrawal.  I can tell you this because I READ ALL OF THEM.  And most doctors never tell you this either.  And this is why we’re all here.

I guess I am continuing to get better, even though it’s so true what they say, that it’s like watching hair grow.  TSW now is still unsightly and completely annoying, but a little more tolerable.  If I’m alone or in bed, I still itch almost constantly on some days, and I still have to have all my limbs covered (and my neck, on most days).  I just want to wear what I want to wear, instead of having TSW dictate my personal style (or current lack thereof, lol).  I still have a “skin curfew” where I need to be getting ready for bed by 8 or 9 pm at night or I get stressed out and itchy.  I constantly want to sleep a lot and eat a lot.  With the eating, I’m not sure if my body really needs many extra calories as it rebuilds, or if I’m just seeking to fill an emotional hunger.

Anyway, some of you nice blog friends wanted a pic of my new short hair, so here you go 😀  I have concealer on in this picture so my face looks good!  I just feel the need to point out I don’t have skin this clear yet naturally!  🙂

haircut edited

 

 

TSW, 11 Weeks – How to Undo Your Good Progress In A Day

Here is how.  Sit through an 8 hour work day at your boring job with the world’s most annoying co-worker popping up like a hedgehog every few minutes to talk at you, go to your ex-husband’s house to drop something off and stir up all THOSE negative emotions of the house and life that was taken from you, sit through a 3 HOUR class at school that involves a bunch of other students droning on about boring subjects in presentations, then endure a long drive home through torrential rain where you can barely see the road, plus thunderstorms and constant lightning, in a car with sub-par tires.  Being away from home for 15 hours doesn’t do any favors for my skin; I had the hugest scratch fest when I got home and had to take an allergy pill to try and knock myself out so I wouldn’t be itching at myself into the night.

The good news is that my skin also seems to be getting more resilient.  When I scratch, I still can do damage, but not as much.  Wounds seem to heal faster too.  I’m also thankful that my eyes haven’t felt so dry and tight in some time.  It no longer is uncomfortable to smile and laugh.  Even though my eyes still look kinda tired, I don’t have so much of the ‘triple eyelid’ anymore and they are overall looking better.  Honestly if I look okay from the neck up, I can deal with that, even if my body is a scratchy red mess.  Between that and my new short haircut, I actually feel somewhat attractive again.  Oh yes self-esteem – welcome back, it’s nice to see you after so very long!

So now I have hair like the below picture.  I feel so much better not to have hair touching my face and not looking so damn frumpy!!  Now I can’t really hide anything behind my hair, but I’m okay with that; my face and neck are more pink and blotchy than red now, and concealer does pretty well at hiding that.  Having short hair makes me feel powerful and ballsy, just what I need to get through TSW.  Instead of thinking of myself as the “Little Red Lobster”, I shall now think of myself as “Little Pink Badass”.  🙂

Short-spiky-pixie-haircut

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Day 74 of TSW – More Pictures

I’m less than a month away from entering triple digits of beating the terrible Topical Steroid Withdrawal!

On this past Monday, if I had any doubts about being in the second flare stage, all those doubts were erased.  My legs were so tight and burning that it hurt to bend, hurt to walk, hurt to have clothing touch them, and the same with elbow creases.  I had the “elephant skin” on my inner thighs as it was so dry.  The oozing was back and was making my clothes stick to me.  I had been thinking about signing up for an upcoming running race but on this day, all the activity I could do was gimp stiff-legged to the restroom and whine in pain to myself.

But, I was pretty optimistic with this flare, because after the last slow progressing flare, things got better and I had a day or two where I felt really great – tons of energy and barely thinking about my skin, so I knew that would be coming again one day.  And the more I go through the flare cycle, the closer I am to being healed!

Friday I had a small milestone, it was the first time in WEEKS that I went to work without a scarf or high-necked top on to hide my neck.  I did put concealer on it to help out a bit, but I realized that as long as someone wasn’t right up close, you could barely notice the fine flakes or the uneven color.  Of course, then on the way home I got stuck in a 90 minute traffic jam, so I started itching at my neck and undid a bit of that progress.  Oh well, I will get there!

Here are a couple pictures from the past week.

Evidence that the second flare was underway.  All previous progress with this area being clear was gone, but this time around it was more just red and not so itchy and scabby as before.

Evidence that the second flare was underway. All previous progress with this area being clear was gone, but this time around it was more just red and not so itchy and scabby as before.

Shoulder ripped up early April

It appears that an angry tiger climbed into my bed at night and attacked my shoulder. This was taken earlier this week – now the area is smoothing out and the scabs are mostly gone.

You ever wonder what your hands will look like when you're 80 years old?  Probably like these paws, just with liver spots.

You ever wonder what your hands will look like when you’re 80 years old? Probably like these dry, rough paws, just with liver spots.

Previous picture of my stomach rash.

Previous picture of my stomach rash.  This was taken in the early days of TSW.

Stomach is not so angry-looking!  It's now just discolored and dry.  I often find myself snaking my hand up under my shirt during work and itching it absentmindedly.  The line in the middle is my 'normal' colored skin.  Hmm, it looks like I tried to paint on some abs or something.

My stomach is not so angry-looking! It’s now just discolored and dry. I often find myself snaking my hand up under my shirt during work when no one is looking and itching it absentmindedly. The line right down the middle is my ‘normal’ colored skin.

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It’s Only After You’ve Lost Everything That You’re Free to Do Anything

Its only after

(Thank you to Wayne at this blog for the above quote from Fight Club.  Wayne stopped by my blog a couple weeks ago as someone else that had been through divorce, and this quote was one of the most helpful things anyone could have said.  It kept rolling around in my head for weeks and I knew I eventually wanted to do a post titled with it).

[And now by saying I’ve lost everything, I don’t want it to sound like I’m completely destitute.  I have a lot of things I haven’t lost.  Friends.  Family.  My health, apart from the bastard of TSW.  My job.  My faith in God.]

But I’ve lost a lot of things with my impending divorce and TSW.  These things have robbed me of my husband – someone I dearly loved and someone who was my best friend.  I still love him and I still want to be friends, but the way he’s reacted to me makes it very clear that all love is gone on his end and seemingly all friendship too.  He told me he doesn’t want to hear any communication from me apart from what’s legally necessary.  I’m facing the stark reality that I may never see this guy again.  Someone that I shared so many things with has vanished, only kept alive in my life by photos and memories.  My wedding anniversary is coming up – a few months ago I THOUGHT I would be spending it taking a cross-country adventure together to celebrate our years of marriage.  This year I will be spending it in divorce therapy class – oh the irony.  My self-esteem has been taken from me.  The whole future that I had predicted for myself has been shattered.  My very self-worth and identity are often in question during this state of flux, as I sift through the pieces of who I was and who I THOUGHT I was, to get down to the inner core of my being and what I WANT to be and DESERVE to be.

When I got engaged and knew that I was going to take the vow of being with my husband until death do us part, I thought my life would take a certain planned trajectory.  Marriage, home ownership, perhaps some kids eventually, a few nice vacations, keep working at my job, get caught up in the general mundane doings of everyday life.  This trajectory was simultaneously comforting in its predictability, but now I realize it was also off-putting in its constraints.  Society and my family had certain expectations of me in my role as a wife, and these may not have been expectations that I was best able to fulfill.

I thanked God for my husband and my comfortable life every day.  I didn’t always verbally say “Thank you”, but there was always a general appreciation for being very fortunate.  I had someone to love, the money to live adequately, the resources to pursue higher education, the financial luxury of not ever being in need or want.

But just because something is comfortable and we feel satisfied doesn’t mean that it is the best thing for us.  It’s comfortable to sit on the couch in sweatpants all day and watch TV, but like this situation, comfort often means that we are stagnant and we are not growing and developing into the pinnacle of ourselves.  There have been DOZENS of days with TSW that I wanted to lay in bed doing absolutely nothing, but doing too much of this really wouldn’t be helpful.  It was more of a triumph and boost to my endurance that I persevere through going to work or school, even if it was uncomfortable.

When I look in the mirror and see my ravaged skin, the scars and marks on my body from what seems like a lifetime of scratching, scabbing, and shame, I see the potential in the person underneath.  I see what I was and what I can be.  Staring into my red, blotchy face, I see the same brown eyes that have looked out at the world for 20-some years.  They stare back at me bravely, wiser now, having seen loss and heartbreak and what feels like moving from a childish state to one of an adult.  The person I am has not changed.  I am the same Me behind those eyes.  I am a product of how I choose to react to the events around me and I choose to be an optimistic warrior.

A few weeks ago I was clinging to the shred of hope that maybe my ex-husband would change his mind; wanting nothing more than to get a text, email, or call from him saying, “I’m sorry.  I want you back in my life and my marriage; I love you; will you forgive me?”  Now I know that was delusional.  I have to be honest with myself.  I didn’t want to face the fear of being alone, so I clung to the happiness of the past like a drowning man on a sinking ship instead of just letting go and swimming into the abyss.  I was making up a new reality for myself that didn’t exist and would never have existed, because it was…. COMFORTABLE.

Now, even though I’ve been overwhelmed with all the soul-invading emotions of grief, sadness, fear, frustration, rage, and self-doubt, I’ve also been opening my heart to the welcome rays of hope that are Optimism, Perseverance, Faith, and Relief.  Now my life can take any trajectory it wants and honestly, that’s pretty exciting.  I’ve been making a mental list for myself of the kind of person I want to become – physically, mentally, emotionally, and spiritually.  I don’t need to cling to a husband or a failed relationship to become a whole person.  I may still regress and get sad and I may still long for the past, but I have a vision for myself and I’m ready to set forth on achieving it.

I close with a quote from one of my favorite books, Atlas Shrugged.

“Do not let your fire go out, spark by irreplaceable spark in the hopeless swamps of the not-quite, the not-yet, and the not-at-all.  Do not let the hero in your soul perish in lonely frustration for the life you deserved and have never been able to reach.  The world you desire can be won.  It exists…it is real…it is possible…it’s yours.”

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