Flare (mini-flare)? + pictures

Last week was pretty difficult all around.  It felt like it might have been a week-long flare.  Since I'm new at this withdrawal thing, I'm only starting to get a sense of what a flare is like for me.  It could have been a mini-flare.  I hope not!  I hope that's the worst it gets!

I spent most of the week in bed, as it was difficult and very irritating to move my body even in the smallest or slightest motion.  I worked and taught piano lessons when I was feeling strong, but took time off when necessary (and tried not to feel bad about it).

Emotionally, it was probably the worst that I've felt since starting withdrawals.  I was depressed pretty much all week.  It's not that I wasn't feeling hopeful about the future--because I am hopeful and I know that I'm on the road to healing.  It wasn't that I felt sorry for myself, either--everyone in the world has issues and I don't have any feelings of "Why me?".  As it was, I barely felt like speaking or thinking, even.  I just wanted to be a vegetable--alive, but not required to do much of anything, other than exist.   

There were, however, a few good moments.  On Friday evening (when the following photos were taken), my wonderful friend Kelly came over with her husband and 2 girls for a visit.  For some odd reason, I felt like I was able to cook--so Christopher & I made the dinner together--and everyone enjoyed a nice meal together.  It was a nice distraction amidst a difficult week.  

Then my parents drove in from Pittsburgh and stayed with us all weekend.  They helped with some things around the house (we just moved to a new home last month and still have lots of settling to do).  Their help was so appreciated and it was nice to have them here for a few days.  I felt bad because I wasn't in the best of spirits during their visit, but they're my parents and thankfully they love me anyhow. ;)  Thanks, family!

FRIDAY, 1/31 (4 days ago)

Morning, post-shower.

In daylight.  The camera made my skin look smoother than it actually was, but you can still see the pinkness covering my face/neck/chest.  You can see a few spots of normal skin coloration (particularly on my nose, ear and along my hairline).

Later that same evening.

SUNDAY, 2/2 (last night):

Much smoother and temporarily stronger. Hope it lasts for a few days?!

My left hand and arms, however, look a little bit worse.

This was last week:

This was last night:

On a sidenote, I've discovered that I enjoy tying my hair up in a scarf.  Not only does it make me feel more comfortable--no hair coming down and touching my neck or face!--but it also covers up my hair (that is absolutely desperate for a cut) in a cute way!

31 Days + Tuesday's dermatologist appt.

One month has already passed since I stopped my steroid usage.  Thank goodness!  That's one month closer to healthy skin!  It's already felt like a huge emotional roller coaster thus far and I'm praying that I can continue to push through this battle with strength and a positive attitude.

Tuesday's appointment with the new dermatologist went basically as expected--no new insights or answers. She does, however, seem to be more caring/understanding than my most recent dermatologist and is open to me making the decisions about which steps I would like to pursue within my own healing process.  So that's comforting.

Although she gave me a prescription for a stronger steroid and for ProTopic, she said (numerous times) that it is completely my choice if I want to get the prescription filled or not.  She said that she understands if I decide to push through without steroids or immunomodulators.  In addition, she did say that she thinks I'd be a good candidate for Phototherapy, which sounds like something I might like to pursue.  (If any other TSW-ers have tried this, would you mind sharing your thoughts on phototherapy with me???)  The other options that she presented (steroids, immunomodulators)..... no way.  Must not/will not mess with any more drugs and prolong the inevitable.  I must let my body heal itself.  I'm not interested in those "quick fixes" and will stay the course that I've embarked upon.

That's basically the news on that front.

Sunday blues.

Well, it's Sunday and I'm feeling pretty depressed this morning.

My sleep patterns haven't been too great this past week.  I haven't been able to fall asleep until 2 or 3am every night.  I've also been particularly itchy during the evening hours this whole week and it doesn't feel like the Atarax is helping anything right now.

So far as my skin goes, today, my face is looking pretty good again.  My neck & chest are so-so.

My arms, however, are much worse and very densely populated with bumps again.  It makes my arms look like I have red, textured sleeves.  There's very little good skin showing on my arms at this point.  The bumps are just so weird and mysterious to me.  Some of the bumps have a tiny white head on them, like pimples but very very small.  If I press on them gently with the tip of my fingernail they expel a tiny amount of clear liquid.  I can't tell if squeezing them makes things worse or not.  I have a feeling that I shouldn't get carried away with popping them (even though it's always tempting to pop things), so I'm withholding.

My legs are also starting to become rashy.  Over the past few days I've watched them go from almost perfectly clear, to patchy in areas.

I'm starting to get worried that my whole body is going to be covered pretty soon.  I was really hoping that the patches would stay sectionalized.  I was hoping that I could still have really good, healthy skin in areas, but it seems like it's not going to stay that way.

Up until this point, my scratching wasn't tearing my skin apart..... but it's starting to, especially on my arms.  I have a few cuts on my arms due to overzealous scratching.

Gah.  I'm just feeling so down right now. I've spent pretty much the entire weekend in our bedroom, trying to stay still.  I'm already dreading the week ahead of me--it's a busy week and I don't feel capable of getting through it.  Every hour, every minute is a struggle right now.  Perhaps I shouldn't think of the whole week all at once.  I should just focus on today--the next hour or two.  I think that's probably all I can handle at the moment.

I don't mean to sound so depressing, but that's my reality at the moment.  It's a difficult day.  Hoping for a better one tomorrow.

Remember that one time: Eczema Herpeticum

I don't have very much news since my last post.  I had a GREAT day on Thursday, but yesterday wasn't nearly as wonderful.  I felt really uncomfortable all day, despite taking even more Atarax than usual.  Oh well.  My chest rash does seem to be dissipating in intensity, however.  The red is fading into a less-angry pink but, like I mentioned before, the rash does seem to be spreading to other areas. :(

Since I don't have much current news to report and, in an effort to document my full skin history over the past 2 years, I want to share some pictures of the awfulness that happened to me back in September 2013 (about 4 months ago).  A little stroll down memory lane... shall we?

----

I had been dealing with major skin issues for quite a while by the time this happened, but my issues took on a whole new "flare" (shall we say?) when I had my first run-in with eczema herpecticum.

What is eczema herpecticum, you ask?  Well.... basically, you get a cold sore (from the lovely "herpes" family).  But instead of that cold sore just staying on your lip (like normal), us lucky eczema folks watch it spread away from your lips and spread into our rashy areas.  And it spreads like a wildfire, let me tell you, traveling through your already-broken, eczematous skin.  Before you even realize what's happening, you have hundreds of cold sores running down your face & neck.

I had never had a cold sore in my life before this point.  Christopher, my husband, started getting them at some point during high school, but he never made a big deal out of them--so I had no idea what they were, really.  I had no idea they were contagious, either (am I dense or what?!).  And I had no idea what they could do to someone (like me) with already-terrible skin problems.

Here's some photos of how it started & progressed:

This picture was taken on Day 2.  I had 3 cold sores show up on my lips the first day, but just thought they were acne or something.  I touched them at various points of the day.  I probably touched my neck right after touching the cold sores (TERRIBLE idea!) which caused it to spread down there.  

This is what my neck looked like that same day.  It was REALLY uncomfortable. At first, I just thought that my normal skin problems were acting up, but by that evening I realized it was a completely different problem all together.  As I took these photos, I started to realize (and Christopher confirmed) that they were actually cold sores.  Google then gave me a second confirmation and explained that it's called "eczema herpecticum" and that I needed to seek medical attention.

This was the very next morning (Day 3).  We were supposed to go to our friends' wedding that same afternoon.  Instead I ended up at the ER.

I could barely move my neck.  The pain is quite different from eczema pain.

This was later that same evening, after arriving home from the hospital.  I was given an anitviral to help stop the spreading.  You can see that my chin was more broken out than it was in the morning.

The next morning (Day 4).  Dry, dry, dry.  And swollen.  Ooooof.

Later that same morning, after moisturizing.

From that point, with the aid of the antiviral I had been given, the sores started to dissipate.  I spent that whole week in bed.

Since this time, I've gotten about 4 recurrences of cold sores.  Each time, I noticed them popping up on my lip the very first day.  I've simply had to get some antiviral pills into my system and cover to sores with Abreva throughout the day.  Both of these things have been able to stop the virus in its tracks and, thankfully, I haven't had to deal with this bad of a breakout again.

Up until this point, I really thought that my rashes were the ugliest, most unsightly things in the world.  This really knocked my normal rashes out of the park.

Spreading rash but still feeling okay!

Last night, around bedtime, my skin went absolutely bonkers--it was Itchfest 2014 like you wouldn't believe.  I got in the shower to try to calm things down (didn't help at all) and noticed that the rash on my neck/chest is starting to spread to my shoulder blades. :(  Nothing major, just starting out with some raised bumps.  It's also spreading down my chest towards my nipples (ouch, ouch, ouch).  Behind my knees also became very itchy.

As I showered amidst the itchiness, I looked down at my inflamed skin (it looked soooo red) and thought "Oh no, this must be the start of a flare.  This is it.  Tomorrow is going to be miserable."

But, actually, just the opposite has happened..... today's turned out to be pretty easy!

I only moisturized once this morning (after my shower) and my skin hasn't felt dry all day.  My face feels almost normal, actually.  WEIRD.  I don't remember the last time my face felt even remotely normal.

I mean, my skin is obviously not perfect.  It looks irritated and red.  But, I actually had a few moments today when I completely forgot about my physical discomfort!  It was like Heaven!

Since our iPhoto library is ridden with hundreds of terrible "selfies" of my skin.... I took a very rare (perhaps the first ever) "Happy Stacey" selfie today:

The good days must be documented and remembered!

How things are going + a few of my tactics for survival.

Well, it's been 24 days without steroids and I am feeling okay.  Better than I expected, actually. Compared to the last time I attempted TSW (about 1.5 years ago), this time seems so much easier for some reason.

I feel like moisturizing is imperative for me.  Last time, I went about TSW without moisturizer (as a few TSW-ers were touting the benefits) and it was absolute hell.  The dryness & cracking was absolutely unlivable.  This time, I don't care if moisturizing slows down my healing (as some people say it will).  I want to be able to get through every day as comfortably as possible!  I work two jobs and absolutely NEED to be able to look & feel the best that I possibly can everyday.  I was not able to work or do anything last time when I wasn't moisturizing.

My moisturizer(s) of choice: after a warm shower (twice a day), I slather my entire body in coconut oil and then seal it in with Aquaphor (however, I do not use Aquaphor on my arms, which I'll explain).  In the past, I tried many other moisturizers, but this seems to work best (and is the least irritating) for me.  It's REALLY greasy, though, and I have to wait about 20 minutes until I'm able to put clothes on over top of it (the clothes still get very greasy though :( .)

Occasionally, I'll retouch my skin with either coconut oil or jojoba oil when I feel my skin getting dry throughout the day (particularly my face & neck).  My arms are covered in bumps and moisturizing them actually seems to irritate them more, so I only use coconut oil on them twice a day (and definitely not Aquaphor).  It usually helps to open up the skin pores with a little bit of warm water even if I'm just touching up a small area of skin.

One other "moisturizer" that I think is helping me: after my evening shower, I wrap my head in a towel and leave it on my head until I fall asleep.  If possible, I try to keep the towel on my head all night as I sleep.  My hair stays wet for most of the night.  I feel like this extra wetness on my head helps me stay moisturized.  (I could be way off base here, but I honestly feel like it helps with the dryness).

I also sleep right next to a humidifier.  My hygrometer currently says that the humidity in the house is 16%!  That's really low and really dry!  A humidifier is absolutely necessary.

Help with the itch: I've been taking Atarax (aka Hydroxizine) 10mg multiple times throughout the day.  It's drowsy effects only catch me off guard occasionally nowadays, but it generally isn't making me feel sleepy anymore.  It doesn't take the itch away entirely, but it definitely takes the edge off (thank God)!  I don't really like the fact that I'm dependent on this drug, but.... gotta do what it takes!  I know that I absolutely cannot stand the itch if I don't take it.  So, I'm taking it and not worrying about it!

Here's two photos from today:

The bumpies and pimply-looking/rough texture is mostly gone at the current moment.  My chest is smooth-feeling but still flakey.

My hand looks... like a 90-year old woman's?

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!