What's the cause, anyway? (A long tale with many uncertainties).

I have so many thoughts to share surrounding this whole ordeal with my skin.  Before I get into too much, however, I first want to talk about why my skin problems even exist in the first place.

So, what's the cause?  To put it plainly, I don't know exactly.  I have some ideas and theories, but I can't be totally sure of the exact cause.  Perhaps (and I tend to think) it was a combination of a lot of different things.

-LET'S START WITH CHILDHOOD AND GO FROM THERE-

As I mentioned before, I have had issues with my skin for my entire life.  Growing up, I had normal eczema--small patches of inflamed skin on various parts of my body.  Nothing too wild, mostly manageable.  There were a few times when it was so bothersome, that my childhood dermatologist prescribed some creams (we don't remember what they were, but we assume/know they must have been steroids).  I would use the creams for a couple days and magically my rash would be gone.  I never had to use the creams for more than 2 or 3 days.  And I probably used them once or twice a year, if that.  The rashes were very mild.

In high school, I saw a dermatologist on a semi-regular basis, but not for my eczema.  I had some issues with acne.  Again, nothing outrageous.  I never had need to take any of those strong drugs (like Acutane).

Throughout college, not once did I see a dermatologist.  I believe I applied over-the-counter Hydrocortisone 1% cream on occasion, but that was even pretty minimal.

My next eczema issue popped up about 4 years ago, after Christopher & I got married.  I had just moved to Philadelphia and started working at a coffee shop.  Due to the nature of working in the food industry, I spent at least an hour washing dishes everyday and--in between making espresso drinks & assembling sandwiches--washed my hands at least 60 times every day.  I ended up with some pretty terrible eczema on my hands.

Steroids to the rescue!  (Triamcinalone, to be exact.) It took about 2 weeks for my hands to heal & then I continued on by wearing dish gloves at work.  Fairly soon after that, I found another job and didn't have to worry about it anymore!  My hands were healed and I was fine!

-AND THEN THE REAL PROBLEM STARTED... WITH SKINNY JEANS-

About a year later, it was fall and skinny jeans were really "the thing" to wear.  So I jumped on the bandwagon (late, of course).  I looked cute in my new jeans (obviously...), but I noticed that my legs became a little bit irritated from the tight clothes rubbing against my skin all day, everyday.  But, in the name of fashion, I continued wearing them despite the discomfort.  I'd put some moisturizer on my legs every morning before dressing but, by the end of the day when I took them off, my legs were super itchy and flakey.  I continued wearing skinny jeans (and irritating my legs) almost every day for more than a year.

Why didn't I stop wearing skinny jeans?  Why didn't I do something more than simply moisturize once in the morning?  I look back on it now and feel utterly stupid.  I didn't take it seriously.  I tolerated the discomfort (like I always do) and ignored it.  By that point, my legs were pretty ripped up.  Every time I'd pull my pants down to use the bathroom, I would scratch at my legs for minutes, doing even more damage!  I didn't even wear shorts very often that summer because my legs looked absolutely awful.

-ARE CATS ANOTHER COMPLICATION?-

It was around this time period that we had this amazing thing happen in our lives--a pregnant stray cat showed up at our doorstep and we ended up having 5 kittens born in our home!!  It was the most wonderful time--I can't imagine anything more exciting (besides a human baby, perhaps)!  Before this even came about, we had already been living with a cat for over a year (his name's Random & he's the sweetest cat on earth).  Despite my childhood cat allergies, I managed just fine with one cat.  And then I managed just fine with 7 cats.  I would experience a stuffy nose/sneeze-fest about once a month but, really, had no other symptoms.  Fine.  Just fine.  The same story continued on for the next 6 months as the kittens grew and we found homes for each of them.

But my skin continued to get worse.  Was it simply because I let my legs get so bad from the skinny jeans?  Was the rest of my skin just starting to catch up with my legs and get weaker over time?  Was the cat dander starting to inundate my broken skin as it got worse and worse?

-THEN MOLD ENTERS THE STORY-

Or was my skin exasperated by the mold in the basement of our apartment?!  Yes, lots of mold. We lived on the first floor of a house and did our laundry in the basement all the time.  We never noticed the mold.... were we blind?!  It had always smelled musty since the day we moved in on July 15, 2009.  But we didn't notice it until my skin had a huge reaction one evening.

One night, right before my brother & sister-in-law were coming to town to visit, I was in and out of the basement all night.  I did about 4 loads of laundry that night.  I was running upstairs and downstairs all evening--unknowingly exposing myself to mold every time I went down there to switch the loads from washer to dryer.  The mold spores were probably swirling all around the basement with the vibrations of the machines all night and I was walking right through it with broken skin on my legs.  I had no idea it was even there (it wasn't for another few days that we finally discovered the horrendous mold).

-MY WHOLE BODY BREAKS OUT-

I went to bed that evening in my clean sheets, but my body was convulsing with itchiness all over.  I could barely sleep all night and ended up taking a hot shower in the middle of the night to try to calm my skin.  It helped ease the itch, but the next morning, I woke up and my skin was visibly irritated and inflamed in spots all over my body--my legs, my neck, my face, my arms.  I had never, NEVER experienced anything like it before.

And so I went to an Urgent Care doctor and they prescribed a 2-week dose of oral Prednisone.  During this period, we had found the mold, contacted our landlord and he promised to get rid of it (and he did).  We left town the following week for vacation and had a glorious time--my skin felt amazing on Prednisone.  We went mountain biking (very intense) and I experienced no symptoms at all.  I made it through our vacation quite comfortably until the very last day.  I took my last (and smallest) dose of Prednisone before we left our vacation spot to come home. The whole drive home, I became increasingly more itchy.  My rashes were already coming back with a vengeance.

By the time we arrived home that evening, my arms were already torn apart again.  To add to it, our apartment was COVERED in fur from the cats (we had someone watching them, but didn't ask them to vacuum).  I barely slept that whole night.  Itch, itch, itch.

The next day, I made an appointment with a dermatologist.  They, of course, prescribed topical steroids (Triamcinalone, again).  Yup.  Cleared the rash completely.

I used the steroids for 2 weeks, as instructed, but this time, I couldn't stop using it.  If I stopped using it for more than a day, the rashes would suddenly come back.  The rashes were so uncomfortable, so I kept using the cream for weeks and months afterwards.

-WHEN I FIRST LEARNED ABOUT RED SKIN SYNDROME-

A few months later, I came across "Red Skin Syndrome" (otherwise known as "topical steroid withdrawal") on the internet.  I saw pictures of people who had used steroids longterm and who were now paying a huge consequence for it (taking 1-2 years for their skin to heal from the steroid damage).  Even though my steroid usage had been pretty minimal up until that point (and I couldn't be sure that I actually had Red Skin Syndrome), I knew that the steroids were not actually "healing" me.  They were simply masking my symptoms.  So I decided not to use them anymore.

Well.... that led to a HUGE EXPLOSION a few days later.  It was an ENTIRE BODY RASH EXPLOSION, to be exact.  Unimaginable skin rash covering me from head to toe.  Completely red.  Completely raw.  Every inch of my body.

Did I have "Red Skin Syndrome" at this point?  Was my skin already addicted to steroids? I don't know the answer to that.  I do know, however, that I had a "rebound effect" from stopping steroids.

I lived for about 2 months completely covered in rashes.  I continued going to work for a portion of that time and then I was completely bedridden for a period of about 3 weeks.  And that's when my mom contacted Dr. Rappaport (one of the few dermatologists in the entire country who acknowledges that Red Skin Syndrome is real!) and asked if there were any like-minded dermatologists in Philadelphia.  He gave us the name of a doctor and we went to see him that very day.

-DIAGNOSIS: NOT RED SKIN-

Well, my skin WAS red.  Very red, in fact.  But, the dermatologist said that I was not suffering from "Topical Steroid Withdrawal."  It was purely atopic dermatitis that I was experiencing.

So?  One shot of Kenalog and a few bottles of Triamcinalone... and he sent me home.

And, boy, did I LOVE the relief that the steroids brought me.  By that very evening, my rashes were already starting to feel less irritated.  And, within a few days, the redness was starting to fade little by little.  GOD, THANK YOU.

-BUT HOW LONG AM I GOING TO KEEP USING STEROIDS?-

It's been about a year & a half since I was told that I do not have Red Skin and I have been using steroids ever since that time.  If I hadn't learned about Red Skin Syndrome, I'd probably be slogging my body with them every night without a worry in the world.  Instead, I've been trying to use steroids as minimally as possible during this time.  I saw the awful stuff that people have had to endure with topical steroid withdrawal.  I have tried to be so cautious with my own usage because I knew the side effects.  I'd try to go without them as often as I could (usually only lasted between 3-5 days).  My rash would, of course, come back every time.  But I kept trying to wean.

The odd thing is that, ever since I went back on steroids, the eczema is affecting mostly my face, neck & arms.  I NEVER had eczema on my face or neck before.   My legs (which were my original problem with the leggings) are almost completely clear.


-WHERE I'M AT NOW. AND WHAT'S DIFFERENT THIS TIME?-

Now, I'm finally at the point where I believe "If my skin wasn't addicted to steroids that first time.... then it almost certainly is addicted at this point!" (1.5 years of usage later).  And I still believe that the steroids are not a "cure" and are only masking my symptoms.  So, I'm steroid-free once again.  And soooooooo not comfortable.

But, what's different?  Well, to start, we're living in a new, completely renovated house (as of three weeks ago) and it's completely mold free.  Second, our cats are "on vacation" and staying with Christopher's family for the time being.  This is the most awful thing in the world, emotionally, but if cats play ANY part in my skin, they are not currently a factor.  Also, I no longer wear skinny jeans (just leggings that don't irritate my skin in the slightest)!

-HAVE I CONSIDERED ANY OTHER CAUSES?-

Some people reading this might wonder if I've skipped over any other potential reasons for my problem.  I haven't done absolutely everything possible, but... I've seen allergists, I've gotten extensive blood testing done, I've tried every diet on the face of the earth, I've done liver cleanses and colonics, gotten room ionizers, shower filters, drinking water filters....  I've done a lot and have seen no positive effects from any of it yet.

This doesn't mean that my skin problems don't have another cause.  I just don't know what it is yet, if there is!  I'm definitely open to the possibility of some unforeseen something causing this.

But, in the meantime, I do not want to use steroids any longer (did I mention that I break out into cold sores now when I use steroids?) for a variety of reasons.

I'm going to see a new dermatologist next Tuesday.  Hoping, of course, that they will be able to shed some light on, well, anything.  At the very least, I'm hoping that they will accept where I'm at and what I'm doing (with the steroid withdrawal).  I'm not expecting a whole lot, quite honestly.  But it would be nice to have a doctor by my side as I try this out!



***Update (1/22/14)***: one thing that I forgot to include in the story.... a couple months after my first attempt at TSW we found out that our cat had somehow gotten fleas!  I now wonder how much this played a part in my attempts to heal the first time around!