TSW’s Bonus? Shedding Food Fears!

Before I found out about TSW and started the process, I was going crazy trying to chase down the trigger for this ever-worsening, spreading rashy “eczema” that I had.  Before focusing on food, I tried a lot of other things.  Some of them were good ideas; some of them were pretty ridiculous:

  • Changing or eliminating most of my facial and body products
  • Changing my laundry detergent
  • Drinking only bottled, distilled water (as I thought maybe something from the city tap water was to blame)
  • Selling my car (because it was old and had an A/C leak and I thought maybe toxic emissions were leaking into the cabin and giving me a rash)
  • Filing an anonymous OSHA claim with my workplace, thinking that I worked in one of those “sick” office buildings
  • I thought about getting a water filter for the shower but I never got around to it
  • Wearing zero jewelry as I thought maybe I had suddenly developed a severe nickel allergy that oddly would have spread all over my body
  • I drank diluted vinegar 2x daily since I read this could help (it was gross)
  • I went to a homeopath and took a remedy that seemed to make things worse
  • I went to a holistic doctor and spent a bunch of money on multiple appointments and special supplements that seemed to really do nothing

Looking back, these are clearly the frantic scramblings of someone that had NO idea what was going on with her suddenly-haywire skin….but someone that was absolutely desperate to find out.  Then we get into the list of all the food-type things I tried:

  • I went on the elimination diet and then, when that didn’t seem to do anything, the Candida diet.
  •  I considered trying the Paleo diet and the GAPS diet but thankfully I discovered TSW before I had to do any more diet stuff.
  • I was even considering going on this crazy “few foods” diet where you only eat chicken, rice, pears, and a few other foods.  How miserable would THAT be?!?
  • I gave up so many things in succession, or simultaneously, feeling that they were somehow linked to my skin’s condition – coffee, tea, sugar, chocolate, dairy, wheat, eggs, fish, meat, nightshade vegetables, bananas, foods that are moderately related to latex, nuts, corn, soy, citrus, tomatoes, garlic, onions, and there’s probably some things I missed.

Needless to say, being on these diets or avoiding all these foods was HARD.  Even though I didn’t give up ALL those foods at once, there were times when I was avoiding MANY, MANY foods.  The constant reading of ingredients, the not being able to eat in restaurants, the sheer planning that had to be involved in making and packing food, and so on.  It truly made me empathize with anyone who has to be on a restricted diet or give up foods for life.  I lost weight and I didn’t need to lose weight.  I was constantly crabby and deprived.  I felt like food ruled my life and I was afraid of eating anything, even though I did still eat.  My husband got frustrated and fed up with what seemed like a never-ending chase.  I wasn’t fun anymore because I was so obsessed with food.  I never went out with friends because I didn’t want to have to explain why I couldn’t eat anything.  I felt hopeless and futile and like I had developed weird food allergies that I would never be able to figure out.  (You can click on the “Food and Diet” subject link on my blog and read about all the past things there!)

Then TSW entered my life, and I finally had a name and a description for this wackiness that my skin appeared to be possessed with.  And as I entered and moved through it, along with moving through divorce proceedings, I was too weary to obsess about food any longer.  I had been on the Candida diet, but finally – I no longer cared, and I gave up.  There’s only so much one can take.  I went back to comfort foods with gluten and sugar and corn.  I ate food that my mom had made that was full of nightshade vegetables.  I sat alone in my bed and munched chips with garlic and onion.  I drank diet pop and tea and coffee here and there.  I got really daring one day and stuffed myself with pizza and cheese bread to see if anything would happen, since I thought dairy and tomato sauce were my nemesis.

And you know what?  Ever since I started going through TSW, I haven’t been able to truly link a single food to the condition of my skin.  All those theories I had about dairy and citrus and chocolate and bananas making things worse – I really don’t know if that’s the case, because I’ve eaten all of these foods without noticeable incident since TSW began.  And this makes sense, because a few years ago, before my skin started acting up, I could eat anything at all with no apparent reaction.  So it just didn’t make sense that suddenly, in adulthood, I would have developed all these food sensitivities, and it’s an absolute relief to know that in all likelihood, I probably have NO food sensitivities.  This also supports the mindset that it really doesn’t matter what you eat in TSW – sure, many people feel better about themselves when they eat “clean”, and I’m all for doing that, but if I’m itchy and restless and I want some pizza or chips on occasion, I’m going to indulge that, since – in the grand scheme of things – it isn’t going to affect how long my healing takes.

This past week when I was out of town in another state, I ate pretty crappy, as I am wont to do when I am “on vacation” and not near my beloved raw kale and carrots.  But I reveled in being able to eat whatever I wanted, because 4 months ago, entering a restaurant would have struck me with trepidation and self-consciousness.  I had greasy foods like fish and chips, a dish at an Asian restaurant that probably contained just about every big food allergen known to man (shrimp, gluten, nuts, eggs, and soy), and there was even one night that a friend kept buying me rum and Diet Cokes.  Alcohol used to ruin my skin – I would wake up with my face all red and dry, so I really hadn’t had any amount of alcohol in YEARS.  I was afraid to!  So this was another test.  And guess what?  I woke up the next day no worse for wear.  Yes, I did flare on my week away – namely on my limbs and groin area – but I attribute this more to just being away from home and not in my usual environment.  If these things were truly making me react, I feel that I would have more of a “whole body” reaction, and the parts of me that are mostly “healed” – my stomach, hands, neck, and face – did not really have any sort of flare.  Since I’ve been back at home, my skin has been going through the normal process of recovering from a flare – clearing up, redness fading, cuts and scabs healing, the whole deal, so this really was just another flare in the whole grand cycle of things, and not base d on what I put in my mouth.

So I really have to thank TSW for setting me free from the apprehension of food and drink.  Another positive to focus on with this burden we TSW’ers have been given!

Tagged , , , , , , , , , ,

The Itchy Germaphobe Takes A Trip

This week I happen to be a few states away at a professional event thingy.  What this means is that I’m staying in a hotel in an unfamiliar city away from my creature comforts of nice things like my bathtub, my bed, and all my various skin implements and creams.  Don’t get me wrong, even though my skin looked good in the pictures the other day, I still have a lot of rituals and there are still parts of me that are nowhere near healed.  My arms, shoulders, and upper back this week have continued to be itchy and scabby, and develop occasional pimply bumps that hurt and ooze clear fluid when they are poked.  My chest also has some bumps and scabs but not as pronounced.  I tried to take photos of these things but they didn’t really turn out.  I do remember hearing in the newest ITSAN video the other day that people who used TS on their eyelids will have the rash spread to their upper chest, which is interesting since this is exactly what happened to me (and I HAD used a decent amount of TS on my eyelids).

I hadn’t taken any sort of overnight trip in quite some time, let alone a trip with going through TSW, so this stay is making me realize how different I may well be from the “normal” person, coupled with my neuroticism over germs in public places…..

…I walk into my assigned hotel for the week, toting my suitcase, my backpack, a tote bag of snacks, another tote bag of toiletries, and my pillow.  I look like I’m running away from home for good, rather than staying a few nights.  But you never can tell with TSW.  I have no idea how I’m going to look or feel or how my skin is going to hold up with the stresses of being away from home, so I have a bunch of different outfits packed to ensure that I always have a few comfortable choices to pick from every day. 

Am I staying here all by myself?  You bet I am.  Even with perfect skin, I wouldn’t want to spend the night in a hotel with anyone but an immediate family member or my ex-husband (when we were married, that is).  With TSW, staying alone is a necessity.  I couldn’t fathom having to explain to someone why exactly I need to sit and soak in the bathtub for so long to decompress, why I take forever to get ready in the morning, why the night is still spent obsessing and peering and picking and trying not to scratch at my skin.  I’m having trouble sleeping in this strange place anyway.  I’m not sure if it’s the TSW, the stress of being out of my element a little bit, or the palpable reminder that now I really am alone.  This hotel room has a peculiar resemblance to the last one I stayed in, but that time it was with my husband back when I assumed we were happily married and would always stay so.  So taking up an entire bed by myself isn’t an indulgent luxury, but an eerie, unsettling loneliness.

I have brought my own pillow and pillowcase from home, as well as my own washcloths and face towels.  I have no idea what kind of harsh detergent the hotel uses, and I’m not about to find out the hard way by rubbing their linens on my face and winding up with some potentially worsening rash.  I don’t go so far as to bring my own full bath towels for the body, nor do I bring my own bedsheets, but I have entertained the thought of doing so if it didn’t take up even more space in my luggage.

The first thing I do when I set my stuff down in the room is to take a disinfecting wipe and swab down all commonly touched surfaces that might be harboring germs, like the toilet flush handle, the door handles, and the TV remote.  (About a half hour after I have done this, I realize there are other surfaces I missed, like the sink handle and a few light switches.  I briefly feel panicked and grossed out that I might have missed some germs, but I try not to think about it).

Speaking of germ surfaces, I am immediately annoyed to find out that this hotel has valet parking, and not only do they WANT you to use it, you MUST use it so that they can file your car away in the proper spot per their hotel protocol.  I am extremely particular about my car.  I regularly wipe down the steering wheel, shifter, etc., with a disinfecting wipe so that it’s always clean.  No one else is allowed to drive it because I don’t know what they’ve touched.  I just wiped it down for this trip, and now some valet is going to put his grimy paws all over my clean steering wheel.  My mind gets flustered at this thought and I make a mental note to immediately wipe ALL the car’s surfaces down again as soon as I get it back. 

My germaphobe neuroticism really takes a hit when it’s time to get ready for bed in the hotel.  Even as a little girl, I remember my mother telling me never to take a bath in a hotel room, that it was more sanitary to take a shower (because in a shower, only your feet are in contact with the tub floor, rather than your entire lower half with a bath).  I freeze at considering this quandry – Do I take a shower, which probably won’t be as good for my skin, since I have always taken baths with TSW – (I even brought a plastic container with my Dead Sea Salts) – or do I take a bath, and mentally deal with the fact that my legs, butt and hoo-ha are planted on the tub floor where probably thousands of people’s skeezy feet were?  I am momentarily rattled by this choice, even though the tub looks very clean and I am sure they must do some sort of sanitizing between guests, but I eventually resolve to take a bath and just not think too hard about it.

Of course I have other “rules” when I stay in a hotel room, TSW or not.  Bare feet must never touch the floor, hands must always be washed after coming in from outside or touching some surface that might not be clean, like the outside door handle.  Elevator buttons must not be pressed with bare hands – I either use my knee or the corner of my shirt.  And now that I’m writing all this, I realize I never sanitized my actual room card, and God knows how many germs are lurking on that.

I usually itch and pick at my skin more when I’m away from home, and I’m never sure if it’s due to the actual environment, or because of getting stressed out about all these potential germs.  So yes, I sound like a neurotic nut that wants to live in a little sterile bubble, and I’m okay with that.  This post is written for amusement value more than emphasizing how much I think about other people’s germs on a daily basis.  But then, today in my hotel room, my fears about germs came true in a very gross way.

See, I understand when you leave a hotel room and go out and about for the day, that they might come in and make your bed or give you some new towels.  But this is the first hotel I’ve stayed in where they start rearranging all my toiletries in the bathroom and some of my other personal effects.  The first evening I discovered this, I was a little bit unsettled, but I figured okay, fine.  If anything weird happens, like some of my panties go missing, I’ll be alarmed, but alright, this is their job to tidy up, it’s just a little beyond what I’m accustomed to.

But THEN today………

I opened my tub of Vaseline and I am so disgusted I’m not sure what to do.  SOMEONE took their finger and SWIPED IT THROUGH MY VASELINE.   I KNOW this isn’t from me because I’ve never, ever been in the habit of digging my finger through Vaseline.  I delicately take a little bit off the top and don’t make a giant frigging track in the stuff.

But I don’t even know if I feel like complaining to the front desk.  It seems so ludicrous to haul a $3.00 tub of Vaseline down to the desk and make a stink about how someone violated it.

The bigger question is – if someone manhandled my Vaseline…. WHAT ELSE IN MY ROOM HAVE THEY TOUCHED?  I guess I’m done using Vaseline for the week.  I can’t wait to be back home in my OWN BED among my OWN BELONGINGS that no one else touches!   UGH!

WHO DOES THIS?!?!

WHO DOES THIS?!?!

Tagged , ,

TSW – Over 4 Months Down, Feeling Great!

Hello friends!!  It is time for some long-overdue progress pictures.  This past Thursday I surpassed the 120 day mark, meaning that now I am in the 5th month of TSW!

I feel very blessed and very lucky to have made the progress that I have done so far.  And I almost hesitate to say TOO many good things about how my skin has healed, because 1. there are so many people struggling mightily at this point in withdrawal still, and 2. I don’t want to “jinx” myself and be like “Look at me, I am nearly healed!” and then break out in some crazy late flare.  I don’t want to make my progress something that makes other people feel bad, or minimize their own suffering.

I hope if you have TSW and you’re looking at my pictures for the first time, please do go back and compare them to earlier ones and see that if I healed, you can heal too, and what’s more – YOU WILL!  I didn’t do anything extraordinary – no special diets, no special creams – I just tried to keep my skin comfortable WITHOUT USING STEROIDS.  I also want to re-emphasize that I had crappy skin over much of my body ever since last summer that kept coming back even with very sporadic steroid use – I was probably going through TSW then and didn’t realize it, and only got the really “hallmark” symptoms like the red sleeve, swollen glands, chills, etc., when I completely quit steroids.  So one could surmise that I’ve actually been in TSW for longer than 4+ months.  That’s part of what I attribute to my relatively “quick” healing time so far – it actually would be more like 11 months or a year, if memory serves me from the time my skin really started going more downhill.  That or perhaps God was like, “Let’s give this girl a break, she’s already going through an unwanted divorce and there’s only so much a person should have to endure!”  🙂

I’m not completely healed, but most of the issues with my skin now are just blotchiness or hyperpigmentation, not active open rashes or scabs.  Because my limbs are still scarred and/or blotchy, I feel the need to at least wear 1/2 or 3/4 sleeve shirts and pants in public, but I’m hoping I can feel confident about baring my limbs by the middle or end of summer.  I still do itch sometimes, but nothing too crazy.  There are long stretches of time that I really don’t think about my skin much at all.  It doesn’t completely rule my life anymore, and that is such a relief.  To the pictures!  (some are before and after for comparison).

    My stomach is, for all intents and purposes, normal looking! I can tell it has some hyperpigmentation, but it might be something only I notice. Now that this skin has healed, it is soft as a baby's butt. I sneak my hand under my shirt sometimes, not to itch wildly at my stomach like before, but to marvel at how soft and silky it feels.

My stomach is, for all intents and purposes, normal looking! I can tell it has some hyperpigmentation, but it might be something only I notice. Now that this skin has healed, it is soft as a baby’s butt. I sneak my hand under my shirt sometimes, not to itch wildly at my stomach like before, but to marvel at how soft and silky it feels.

My lower back has some hyperpigmentation and scarring.  This picture makes it look better than it looks in real life, but I guess I could always get a "tramp stamp" to cover it up if I get desperate.  Kidding.  No offense to those with lower back tattoos.

My lower back has some hyperpigmentation and scarring. This picture makes it look better than it looks in real life, but I guess I could always get a “tramp stamp” to cover it up if I get desperate. Kidding. No offense to those with lower back tattoos.

My upper arms and forearms are my worst area, although this picture makes them look less blotchy than they really are.  I had a lot of random scabs and tiny pimple things on them lately that gradually disappear.  Today they were really itchy, but I scratch away contentedly, knowing I'm not damaging them and they'll heal in time too.  I think I'll feel truly healed when I can wear t-shirts and tank tops again confidently in public.  This might be the last area to heal because my arms were one of the places I used steroids the most.

My upper arms and forearms are my worst area, although this picture might make them look a little less blotchy than they really are. I had a lot of random scabs and tiny pimple things on them lately that gradually disappear. Today they were really itchy, but I scratch away contentedly, knowing I’m not damaging them and they’ll heal in time too. I think I’ll feel truly healed when I can wear t-shirts and tank tops again confidently in public. This might be the last area to heal because my arms were one of the places I used steroids the most.

 

My face and neck are almost back to what they were before I started using steroids.  My eyes sometimes get random blotches around them, and the skin there has some healing to go yet, but again, this is one of the first areas I used steroids, so I would expect it to be one of the last to heal.  I can get away with barely any concealer now, and I can wash my face like a "normal person" instead of having to do this whole elaborate olive oil and then oatmeal scrub to get rid of all the dead, flaky skin.  My face and neck feel extremely soft.  I no longer use Vaseline on my face except a little bit on my lips and under my nose at night.  That was a progress milestone since Vaseline is so greasy... it's nice for my skin to retain its own oils now and not have to smear that glop on it!

My face and neck are almost back to what they were before I started using steroids. My eyes sometimes get random blotches around them, and the skin there has some healing to go yet, but again, this is one of the first areas I used steroids, so I would expect it to be one of the last to heal. I can get away with barely any concealer now – my face has ZERO concealer in this picture!!!  And I can wash my face like a “normal person” instead of having to do this whole elaborate olive oil and then oatmeal scrub to get rid of all the dead, flaky skin. My face and neck feel extremely soft. I no longer use Vaseline on my face except a little bit on my lips and under my nose at night. That was a progress milestone since Vaseline is so greasy… it’s nice for my skin to retain its own oils now and not have to smear that glop on it!

 

This is an example of some of the scars on my legs that remain from scratching and scabbing.  I have started wearing shorts again sometimes if I'm alone and exercising outside, but I am self-conscious of these scars and not ready yet to wear shorts to somewhere like the gym where others could see them up close.  These will heal and fade too with time, I am sure!

This is an example of some of the scars on my legs that remain from scratching and scabbing. I have started wearing shorts again sometimes if I’m alone and exercising outside, but I am a little self-conscious of these scars and not ready yet to wear shorts to somewhere like the gym where others could see them up close. These will heal and fade too with time, I am sure!

BEFORE PICTURE:  This is my right leg back in the fall.  I had a bunch of tiny bumps all over my thighs and I thought it might be staph - honestly I wasn't sure WHAT it was.  This is before I knew about TSW!

BEFORE PICTURE: This is my right leg back in the fall. I had a bunch of tiny bumps all over my thighs and I thought it might be staph – honestly I wasn’t sure WHAT it was. This is before I knew about TSW!

BEFORE PICTURE: Here is my right leg super covered in red blotches.  This is probably late fall or early winter - again, before I knew about TSW.

BEFORE PICTURE: Here is my right leg super covered in red blotches. This is probably late fall or early winter – again, before I knew about TSW.

AFTER PICTURE: Here are my legs today!  The scarring is mostly on the sides so you can't see it here.  I have lots of old scars that are small, but I'm probably the only one that notices.  I still get itchy behind my knees, but that area isn't ripped up anymore and my legs have come a long way in healing!

AFTER PICTURE: Here are my legs today! The scarring is mostly on the sides so you can’t see it here. I have lots of old scars that are small, but I’m probably the only one that notices. I still get itchy behind my knees, but that area isn’t ripped up anymore and my legs have come a long way in healing!

 

Tagged , , , ,

7 Things I Love and Hate About Eczema, and a Song About TSW

This post comes courtesy of my blog-friend The Allergista, who wrote a post on 7 things she loves and hates about her allergies.  I thought it was such a great idea that I wanted to do my own post on it, while still crediting her, of course!  If you haven’t visited her blog, check her out!

HATE:

  1. I hate that my self-esteem and self-worth is often linked directly to the condition of my skin.  I can be confident and vibrant, but a lot of the time I just can’t see that if my skin isn’t letting me feel that way.
  2. I hate that I haven’t been able to donate blood in almost half a year, because I didn’t want people seeing my arms and elbow creases and thinking I had some horrible disease or was a drug addict.  (I’m getting there though!  Today they are almost clear!)
  3. I hate that I can’t wear whatever I want, whenever I want to.
  4. I hate that it takes a lot of planning to go anywhere.  (Will my clothing be comfortable?  Do I have the appropriate creams and lotions just in case?  Do I need to take an allergy pill in case I get itchy?)
  5. I hate having scars all over my legs and arms.  Hoping they fade some more with time, since I didn’t used to have them a few years ago before my eczema started getting worse.
  6. I hate having to be paranoid about reading ingredient lists on body products and that I can’t just try any new lotion or makeup that I want, for fear it will royally bother my skin.
  7. I hate that other people don’t seem to understand eczema and aren’t more understanding of the huge impact it can have on daily living.

LOVE:

  1. I love that I’ve found new style options (hello, scarves!!) that I may not have otherwise embraced.
  2. I LOVE that as my skin has healed, I have felt very renewed and thankful.
  3. I love that I have matured and realized that my beauty and self-worth doesn’t come solely from my appearance.
  4. I love the nightly ritual of soaking in my bath with my Dead Sea Salts.
  5. I love that I’m so much more aware of the ingredients in cosmetics and facial products and now I know what products really work for me and won’t irritate my skin.
  6. I love that I no longer feel imprisoned by my food choices and have discovered many new healthy foods, while still maintaining the balance of having something indulgent to enjoy every now and then (like pizza).  I tried giving up almost every food under the sun before I knew I had TSW and was convinced my skin was probably “allergic” to dairy, soy, tomatoes, and coffee, among other things.  Now I eat these foods carefully in moderation with no problems!
  7. I love the friendships and support and encouragement that I’ve gotten through this blog!  I have met so many wonderful people that I never would have encountered without having eczema and TSW.

Now for a song about TSW.  Another great blog-friend, Amanda over at Celiac and Allergy Adventures, had a post recently how a popular Linkin Park song was clearly about eczema.   I realized that the song “Forty-Six and 2” by Tool, one of my favorite bands,  is totally spot on with the process of TSW and being renewed.  Here are the lyrics:
My shadow’s
Shedding skin and
I’ve been picking
Scabs again.
I’m down
Digging through
My old muscles
Looking for a clue.

I’ve been crawling on my belly
Clearing out what could’ve been.
I’ve been wallowing in my own confused
And insecure delusions
For a piece to cross me over
Or a word to guide me in.
I wanna feel the changes coming down.
I wanna know what I’ve been hiding in

My shadow.
Change is coming through my shadow.
My shadow’s shedding skin
I’ve been picking
My scabs again.

I’ve been crawling on my belly
Clearing out what could’ve been.
I’ve been wallowing in my own chaotic
And insecure delusions.

I wanna feel the change consume me,
Feel the outside turning in.
I wanna feel the metamorphosis and
Cleansing I’ve endured within

My shadow
Change is coming.
Now is my time.
Listen to my muscle memory.
Contemplate what I’ve been clinging to.
Forty-six and two ahead of me.

I choose to live and to
Grow, take and give and to
Move, learn and love and to
Cry, kill and die and to
Be paranoid and to
Lie, hate and fear and to
Do what it takes to move through.

I choose to live and to
Lie, kill and give and to
Die, learn and love and to
Do what it takes to step through.

See my shadow changing,
Stretching up and over me.
Soften this old armor.
Hoping I can clear the way
By stepping through my shadow,
Coming out the other side.
Step into the shadow.
Forty six and two are just ahead of me.

Tagged , , ,

TSW, 112 Days

In just about a week, I will have 4 MONTHS down and be entering my 5th month of TSW.  For anyone just starting out or considering starting, the journey seems very daunting, but once you start and keep taking it one day at a time, you get to a point and you look back and are amazed by how fast time has flown.  Kind of like running a marathon.  If you really think about the magnitude of that 26.2 miles, it’s enough to psych you out.  But once you have prepared and are actually running the thing and sort of zone out and keep putting one foot in front of the other, you look back and are amazed how far you have come.  (On a side note, I think running a marathon was excellent preparation for TSW! – learning to endure, pushing through wanting to give up, finding tactics for encouragement, etc.!)

If I could assign a percentage to how healed I am, I would say I am more than 50% healed.  (No pictures today because this is just a quick post, but I will post more soon).  The skin on my legs, thighs, groin, back, and stomach is back to feeling like “normal” skin again for the most part – relatively smooth and soft to the touch.  I have a lot of hyperpigmentation on my inner thighs, stomach, and lower back, plus scarring on my legs and lower back, so I’ll be anxious to get into the sun when it’s warm enough to be in the pool, and see if getting a bit of a tan will even things out.  I never thought I would feel comfortable in a swimsuit again when I started TSW and was almost completely covered in red rashes, but from the chest down I would be okay with wearing a bikini in verrrrry dim light… LOL.

My arms are a little different story – this past week they looked just like those of a heroin addict – I had little round scars and scabs all over them.  These seem to be diminishing and healing.  It is SO tempting to pick at those, but I already have a lot of scars on my arms and I don’t want any more.

My face and neck have stayed pretty consistent over the past days – still slightly blotchy or red in a few areas, but overall pretty okay.  I thought I was looking good, but then I saw a picture taken of me this weekend and I was struck by how “dead” and tired I still look in the eye area even though I was smiling and supposed to be looking happy.  Maybe this isn’t the fault of the TSW, I’ve had a lot of negativity going on with the divorce (maybe I will post about that upcoming) so it could be that I just couldn’t genuinely smile at that point!

So my face and neck have been decent with the exception of last night…. I took my bath and got into bed and my face began to itch wildly.  Mainly between my eyes and around my eyes, and parts of my neck.  These are places that have been red anyway.  I tried not to itch but it was maddening – hearkening back to the days just a few months ago where I couldn’t stop scratching MY ENTIRE BODY.  Finally I gave up and just started rubbing at my eyes, knowing this wouldn’t end well.  I could already feel my left eye puffing up, and when I looked in the mirror, sure enough both my eyelids were getting puffy and underneath my left eye too.

There are only two things that could have caused this – unless it was just a rogue TSW thing.

One, I have been using Bio-Oil on some scarred areas on my legs and arms.  This stuff really does work to help heal new scars, but it doesn’t work on old ones.  I have been wary of using it until I was more healed because it does contain fragrance, but I’m not using it on my face.  The Bio Oil could well have come in contact with my face and irritated it.

Two, the areas that were so very itchy were also areas where I had put a light coat of Vaseline.  Now I think the entire eczema and ITSAN community is mixed and divided on Vaseline, myself included.  I can’t make up my mind if it’s good or bad.  But I’m going to try not using Vaseline tonight on my face at all and see if that makes a difference.

So once this happened and I see my eye puff up and I can’t stop itching, I got up and took a washcloth and gently wiped the itchy areas with cold water (to remove any Bio Oil or Vaseline residue) and then I put on my Avene Tolerance Extreme cream that I use.  I instantly felt better but since now I was all awake and irritated, I took an allergy pill to sleep and hopefully to make my puffy eye go away – it’s been months since I had to deal with puffy eyes, so having one again is disheartening.  This morning my left eye is still puffy and red underneath, and the lines under it are more prominent, but hopefully it will go away.  I hate looking asymmetrical and this eye is the thing I’m consistently most self-conscious of, but I guess I should be glad it’s only ONE eye and not both, so I still have a “good side”.  🙂

Anyway this post is a little all over the place but I just wanted to give a quick update, more coming soon!

Tagged , , , , , , , , ,

Reflections on 100 Days of TSW

I made it to triple digits!!!

celebrating-womanhood1

I have to say that around the 90 day/three month mark is when things really started taking a turn for the better for me.  I overall just FELT better and more like myself, even if I didn’t have huge, vast improvements.

Right around 90 days I experienced another flare cycle (my third one), but each time, the flare-up has been successively less severe.  I measure the “flare cycles” by the areas where I probably used topical steroids the most, cumulatively – knee and elbow creases, and on/behind shoulders (and also my groin area – it got really bad, though I never used steroids here).  These are the areas that ebb and flow in regard to flaring, then getting dry and flaky, then getting white and smooth and clear, and starting over.

My face, neck, and stomach, for the most part, have taken a trajectory of simply slow improvement with a bit of flux here and there, rather than the same flare cycle.

I didn't really get the crazy peeling skin like a snake, my skin was more flaky, but I like the flakes because that seems to mark the end of a flare and the start of a calm period for me.  Once I rubbed all these flakes off my neck and moisturized, it was good!

Late April.  I didn’t really get the crazy peeling skin like a snake, my skin would mostly just have a ton of tiny flakes like this, but I like the flakes because that seems to mark the end of a flare and the start of a calm period for me.

I am really happy with my progress so far!  Besides the pictures in this post, here are some more observations of healing, compared to, say, about a month ago.

  • A month ago:  I had to wear a scarf to work every single day because my neck was so red and raw.

    This is how my neck USED to look.  Great improvement!

    This is how my neck USED to look in the beginning of TSW.  Compare this pic to the one with just the little flakes above. Great improvement!

  • Today: I can choose to wear a scarf because I WANT TO – not because I have to.  Thank goodness for this, because spring is here and the other day it was like 80 degrees, a scarf would have been maddening.  I can wear any neckline of top that I want, as my neck only needs a little bit of concealer to smooth out the slight redness in parts.  And I can wear necklaces again too.
  • A month ago: I was constantly tugging my sleeves down over my hands and wrists because they were so ripped up.  I would hide my hands in meetings or if people would talk to me – it became like an automatic reflex.
  • Today: I can actually have my hands completely exposed and be okay with it, even wearing 3/4 sleeve shirts and bracelets and watches again.  Yes, no one is going to ask me to be a hand model any time soon, and my forearms still have many little round scars or scabs, but these and the uneven skin tone on my hands is only apparent if you’re really up close.  I can’t wear short sleeves confidently just yet but I will get there too!
    My hand near the end of March.  It was rough, red, dry, and scabbed.

    My hand near the end of March. It was rough, red, dry, and scabbed. I had really red hands at some points, but I don’t have a picture of those.

    My hand, a few days ago.  Looks almost normal!

    My hand, a few days ago. Looks almost normal from here!

  • A month ago: My earlobes were cracked and oozing and flaking.  I always made sure my hair was covering them so no one would notice, and wearing earrings was completely out of the question.
  • Today: I can wear earrings again!  My earlobes are still a little flaky in the mornings, but almost normal.  I have heard that nickel is a common “allergy” among TSW people – that is, when they get the patch test or allergy test, nickel shows up on there frequently, so I have been very careful about not wearing “cheap” earrings, I only wear one pair of studs that is hypoallergenic.  Actually, this jogs my memory – I used to be able to wear any type of earrings, I had a bunch of cheap ones, and then my ears started getting sensitive.  I didn’t link this with TSW until thinking about it just now – it has to correspond since it happened around the same time and had to be a result of my skin getting hyper-sensitive all over.
  • A month ago: Most of my face was very red.
  • Today: There are still areas that sometimes are quite red – namely around my eyes (I expected this, as I used TS around my eyes – bad move, no one should ever do it!!) and some patches on my cheeks and jawline – my left side has always been worse than my right.  BUT, other parts have almost completely cleared.  My entire forehead was red, now it’s nearly clear.  I had a huge clearly marked patch on my face’s right side, and it has vanished.
Here I am looking sad and red, with my entire forehead, all around my eyes, and into my cheeks all red.  Oh and hey, I just realized that the way I blacked out my eyes makes it seem like they are uneven.  I promise you I do have symmetrically placed eyes, as if I didn't have enough issues with TSW.

Here I am looking sad and red near the end of March, with my entire forehead, all around my eyes, and into my cheeks all red. Oh and hey, I just realized that the way I blacked out my eyes makes it seem like they are uneven. I promise you I do have symmetrically placed eyes, as if I didn’t have enough issues with TSW.

Here I am looking way less red.  In this picture I look almost normal.  I do still have some red patches but wow is this an improvement.

Here I am looking way less red. In this picture I look almost normal. I do still have some red patches (you can see my cheek and neck are a bit blotchy) but wow is this an improvement.

  • A month ago: I didn’t have much energy and felt like I was just in “survival mode”.  If I managed to be able to go to the gym or get outside and exercise, that was a stellar day.  The only exercise I could really do was walking, or MAYBE running or weight training once in a great while if my skin didn’t hurt too much and I was in a decent mood.  Really I just wanted to sit in bed or sit in the bath constantly.
  • Today: I have a consistent energy level!  I feel energetic and motivated on most days and I WANT to work out on most days.  It also helps that it doesn’t hurt to move anymore, as opposed to when my knee and elbow creases felt like the worst sunburn and just walking was painful.   I realized my “old self” was coming back the other day when I woke up at 3:45 AM, scratching (it’s not the crazy deep itch of bad TSW anymore, just a dry skin type itch), and my first thought was, “Well, I’m wide awake, maybe I could go for a run.”  I didn’t run, in case you’re wondering – I may FEEL like I can do boundless physical activities like start training for another marathon, but I need to not overdo it and harness that energy into productive workouts that build up gradually and don’t burn me out or overtax my recovering adrenals.  I do get really tired after exercise, so I am cognizant to not rush into doing too much.
  • A month ago: Sweating would make me go crazy, itching and ripping at my skin.
  • Today: I can sweat and although it does still make me itchy sometimes, it’s not completely insane, and my skin has become more resilient so I really don’t damage it if I DO itch.  I still haven’t done any TRULY really sweaty activity, which I’m a little nervous about trying, but I will try it soon and see what happens.

When you’re in a period of healing (or one of the lucky ones completely healed), it is somewhat easy to forget about the tears, the sleepless nights, the constant clawing at yourself, the flakes everywhere, and the feeling of being trapped as a prisoner in your own body.  That’s why I have this blog – I want to move on, but I don’t need to forget – because knowing how bad I was makes me appreciate how I am today.  My only regret with TSW is that I didn’t start it sooner!  If I had started back in September when my skin first began to act up, I would be around the 9 month mark by now!

I could write more but I will stop here.  To all my fellow TSW warriors, encouragement and hope goes out to you.  It does get better!

Tagged , , , , ,

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!

Tagged , , ,

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

Tagged , , , ,

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.

Tagged , , , , , , ,