Tag Archives: topical steroid withdrawal

Post-TSW: What A Difference a Year Makes

One year ago, November 2012, things were radically different.  I was still (happily, I thought) married, living with my husband in our nice little house, working full-time and going to school part-time for my masters degree.  BUTTTTT I was also in the throes of my struggle with the demon known as Topical Steroid Withdrawal, though at the time, I didn’t know yet that steroids were at the complete root of my problem.

If you refer back to my March post, “Living with TSW – A Day in the Life Of My Skin”, that pretty much encompassed what my life was like for months at a time.. TOTALLY. OBSESSED. WITH. MY. SKIN.

Let me tell you about what you have to look forward to when you conquer the TSW demon, and describe some things that I do now that I NEVER would have thought of being able to do with TSW.  I wanted to make this post because I noticed I have some new followers lately (Welcome!!) and so I wanted to send some more encouragement out to those that are still toughing it out.  Plus I haven’t posted in forever due to a crazy busy work schedule, and I still want to have this be a relatively active blog.

  • My skincare routine is almost exactly the same every day and is COMPLETELY predictable as far as products and how long I take to get ready.  With TSW, I never had any idea of how bad I would look when I woke up, and so I would wake up extra early to allow more time to pick off all kinds of unsightly flakes, moisturize, put on concealer, etc.  I KNOW now every morning, the same healthy, rash-free face is going to greet me in the mirror…what a relief.
  • I have no problem trying new products on my skin, things with ingredients that I thought I was “allergic” or “intolerant” to before.  I just received a body lotion sample the other day that had both beeswax and shea butter – things I thought were high irritants to me – and I used this lotion on my legs with zero ill effects.  I’m still very cautious of my face and don’t use new lotions or products there, but my body is fair game for experimentation now, to see just how UN-sensitive my skin has returned to since healing.
  • I can and do eat whatever the heck I want without worrying if the food is affecting my skin.  This doesn’t mean that I always binge on junk – I chose to go vegetarian a few months ago (for more moral and personal reasons than pure health reasons) and most of my meals are actually vegan just because I like to eat plant-based and I feel good eating that way.  However, it’s great not to have to chase down various things like bananas, chocolate, cheese, onions, or garlic, and obsess over avoiding them or try to do restrictive elimination diets.  And if I do want some greasy pizza, I ENJOY and think almost nothing of it in relation to my skin.
  • I can go swimming and be in a swimsuit in public.  One of my goals for a while has been to actually learn to swim, so that I can get involved in triathlon races, because I already love to run and bike.  In the throes of TSW, anyone that saw me in a bikini probably would have run for their lives, fearing whatever nasty rash I had was highly contagious.  I actually regret not taking a full-body picture of myself in a bikini when I had raging TSW, and comparing it to now, since the difference is so drastic.  I went from 50-75% covered in grossness to 100% clear.  So now I am learning to swim and I happily splash around un-self-consciously in the pool.
  • I don’t have to carry tiny mirrors, tweezers, and little tubes of moisturizer everywhere I go, and I am no longer obsessed with constantly checking my skin out in the mirror.
  • TSW doesn’t dictate what I can do for a job anymore.  In my current job, I now work in the fitness industry.  I get up-close with all kinds of people and I speak with them at length… it can be an intimate type of job and one where you can feel like you’re perpetually on display.  Because you’re a fitness professional, people are looking to you as the picture of health, which means having a good body and nice skin.  I had been offered this job for MONTHS, but I never could have done it confidently before because of my skin.  I truly feel for anyone that has TSW and has a job where they have to interact with the public.  TSW made me stay a LOT longer at my previous (unfulfilling and not very challenging) job, because I didn’t interact with the public there, I could hide behind my desk and just talk to my co-workers.
  • TSW is not going to be the limiting factor in stopping me from [someday] dating, getting close to guys, or being in a relationship.  Emotionally I feel I’m nowhere near ready to do that yet, but if and when I am, my skin will be no issue.  And I really have no skin qualms about someone seeing me in any state of undress, besides the usual little body-conscious things that probably 99.9999% women think about themselves (“I have to suck in my stomach” or “My arse could really use a bit of a lift”).

If anyone else that is post-TSW has any thoughts to add on contrasting their own personal then and now, I’d love to hear them!

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Calendulis Cream from The Eczema Company – Great for Healing!

My fellow blogger, Jennifer, very kindly offered to send me some Calendulis Cream to try from her online store, The Eczema Company.  Jennifer has a wonderful blog simply FULL of great resources for eczema and food allergies.

Her online store is just as great…check it out!!  There are creams and balms!  There is soft clothing for babies and kids with eczema! (The onesies that say “Only my smile is contagious” and “Keep Calm and Carry Balm” are adorable).  There are brightly colored mittens for your child to wear at night so they don’t scratch!  (Boy… I wish my mom had had access to this site back in the dawn of the internet in the early 90s, when Ms. EczemaExcellence was but a young girl and had to make do with white cotton socks tied on her hands at night rather than fun and colorful mittens).

It is an unfortunate predicament in the world that eczema exists, but The Eczema Company’s products at least create a more pleasant and less itchy existence.  So when I got the chance to try out the Calendulis Cream, I was excited to see what it would do for my skin – especially since I had first seen it on my blog buddy The Allergista‘s site, and she gave it a great review.

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Jennifer had seen my previous posts, where I said that my skin was overall doing well, but that I still had a few residual spots that would flare and itch a bit – specifically my elbow and knee creases.  She recommended trying this cream to help heal those last stubborn flares.  I have been using it 1-2 times a day (morning and night…. I forgot a few times though so sometimes it was just one or the other) for about the past 5 days.  And you know what??  IT IS WORKING!  😀

The very first day I tried it out, the initial thing I noticed was that it stopped my itching!  I don’t get super itchy anymore, but I would catch myself waking up in the night scratching at my legs.  Since using the Calendulis Cream, I honestly don’t think I have woken myself up by scratching at all.  Then as I continued to use it, the dry, flaky patches on my skin started to heal and look more normal.  Remember my previous post with the picture of those tiny bumps on my leg?  Thanks to the cream, they now are GONE!  What an awesome thing to find a natural remedy with NO steroids or cortisone that actually works.

Below I’ve put a BEFORE and AFTER picture of my right arm – I have a very cheap digital camera that may not do this justice, but hopefully you see that the cream really did make a difference!

If you are interested in trying this cream – guess what?  I have a special offer for you, compliments of Jennifer and The Eczema Company!   You can get 10% off using this code as one of my blog readers: ECZEXC10.  Don’t wait though, if you want to give Calendulis Cream a try – the code expires September 30, 2013.

Thank you Calendulis Cream and thank you Jennifer!!  🙂

My right arm BEFORE applying Calendulis Cream, with mini-flares.

My right arm BEFORE applying Calendulis Cream, with mini-flares (little red areas).

Right arm AFTER about 5 days of Calendulis Cream.

Right arm AFTER about 5 days of Calendulis Cream.  There are no active flares!!  Any red spots you see are just little scars.  (You may notice my skin has some patches that are sort of “bleached” and lighter than my normal skin tone – this is a product of TSW and not the Calendulis cream.  Other areas of my body, like my lower back, and behind knees, have the same lighter-colored patches.  The skin is just getting back to normal after TSW and I’m sure this will even out in time.  As long as it isn’t red and itchy… I’m happy)!

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End-Stage Flares, and Taming the Scratchy Monster Book!

Look at what arrived in the mail to me the other day!  A special package all the way from California!

Taming the Scratchy Monster

“Taming the Scratchy Monster” is a wonderful little book written by Louise Brown, with a foreword by Kristina Ventura.  Both of these ladies have firsthand experience with TSW – Louise Brown has battled bravely through months of withdrawal and is almost healed (Hooray!!) and Kristina saw her beautiful daughter Keira also go through the process and become a vibrant, fully healed little girl who enjoys life WITHOUT having itchy skin interfere!

Though I haven’t had the pleasure of meeting either of these lovely souls in person, I feel an instant connection with each of them since we have the journey of TSW and healing in common.  I only wish I had had this book earlier this year, when I was going through the worst parts of TSW.  We all KNOW that we are supposed to heal, but doubt always creeps in, and even for an adult, this book is comforting to see the hero, Billy, battle the “scratchy monster” by ceasing to feed him with “cream” (steroid cream) and come triumphant through the red, dry, and oozy skin.  The illustrations are captivating and a perfect complement to the story line.  It is also a PERFECT way to explain TSW to other people that might not “get it”.  Kudos to Louise and Kristina for their efforts in this book and spreading awareness of TSW!

As for me, my skin is still doing well!  You can probably gather that because my posts are more few and far between.  I thought I would show you all some pictures of what “end-stage” TSW looks like.  I have a few stubborn areas that keep cycling through “mini flares”, but in the grand scheme of things, this is so minimal compared to full-blown TSW.  Joey Brown on the ITSAN forums has mentioned this too – being mainly healed, but having a few areas that are just hanging on, so I think that is a common thing to expect.

Now with these remaining areas, for me it is definitely a case of “first in, last out”, because these areas are around my elbow and knee creases, and this is one of the very first places I ever had “eczema”.  I had eczema in these zones as a child before I ever used steroid creams, so I might just be subject to having little bouts of eczema here in the future anyway.

I also find it interesting how (for me, at least) these little rashes are asymmetrical.  My entire left arm has been completely healed for a while and just has some slight areas with lighter pigmentation.  My right arm is the only rashy one.  My right leg also gets many more of the little flares than my left leg.  I’ve experienced the “asymmetry” before, prior to knowing I was going through TSW.  I had a very stubborn area around my left eye that was always red, but my right eye was fine.

Bumps on leg

Little pimply bumps on my leg above the knee. They don’t itch, but they are tempting to pick at!

 

Mini flares on right arm.  These get a little red, itch slightly, then go through some minor flaking and scabbing, and then start over again.  One day they should be fully healed, I think!

Mini flares on right arm. These get a little red, itch slightly, then go through some minor flaking and scabbing, and then start over again. One day they should be fully healed, I think!

Another view of arm flares.

Another view of arm flares.  When they are in a healed stage, I just have little spots of discoloration on my arm from the scabs turning into scars.

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I plan to do a post about Post-TSW Facial Skin Care coming soon one of these days – it’s a funny problem to have, that now I have no idea what my actual “skin type” is, since it was masked by eczema for so long.  (It’s not actually a problem at all, but it’s a big contrast between this being my most tiny, miniscule concern, compared to the concerns I had when my face was all wrecked and red and puffy)  My skin makes its own oil and I actually get a bit of acne or clogged pores sometimes!  A far cry from the days when my face was all flaking off and had NO oil!

Hope everyone out there is continuing to heal nicely and seeing improvements!

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Over 6 Months and Very Triumphant!

Well my goodness, how does time fly.  I think I owe all you wonderful people another post, since this blog has been silent for a good few weeks.

With TSW blogs, it’s more often than not a good sign when someone doesn’t post in a while!  As my fellow blogger Louise has written, she is “blogging less and living more”!   And the same is true for me.

I would say that I am currently about 90-95% healed and I’ve been that way for at least a good few weeks.  I never thought I would be able to wear shorts, short sleeves or tank tops in public again, but have done so multiple times over the past month!

What TSW victors say really is true, though it’s difficult to believe in the depths of the rash and the itch and the insomnia.  One day you just kind of realize, “Hey, I’m almost healed!”  You start doing “normal” things again, like exercising consistently, not worrying about food, not being obsessed with looking in the mirror at your skin, and choosing whatever clothes you want.  And you sometimes don’t even realize how “normal” things are now, until you take a look back at the dark TSW past, like maybe you run across some pictures of you in the worst of it, or you find your stash of creams or “TSW outfits”, or you realize you have zero need for Vaseline anymore and almost kinda hate the stuff!

I have made a huge dive back into fitness and exercise in these past few months of feeling and looking so much better.  I was a pretty die-hard exerciser, so when my consistent exercise routine got sidelined for a few months (first with a cold that turned into nasty bronchitis thanks to asthma, and then with the worst of TSW), it was kind of like I had lost part of my identity.  Now I am exercising a BUNCH!  I am running, biking, swimming, and lifting with renewed appreciation for my healthy body and how it has healed and how it can do all these amazing things that we so often take for granted.

Now here is where I want to add a little disclaimer, and I think I have brought this up before.  Some people might be reading this and pout and scoff, “Well!  Ms. EczemaExcellence is all fine and good to write about being nearly healed in 6 months, but there is no way she had that quick of healing!  Most adults take at least a year!”  And to that I say, “Why yes!  Yes, gentle reader, you are absolutely right!”

See, it was around this very time last year, that my skin started getting bad.  I actually remember that one day, I was so fed up that I wrote an angry letter “To Eczema”, stuff like, “Dear eczema:  I don’t understand why you’re ruining my life, you’re so controlling and I’ve done everything to try and get you to go away!  I just want to look normal again!  With the help of God, I banish you!”  Not like I thought this would help, but I was desperate and I thought it might be therapeutic, haha.  And it was just over a year ago that I started this blog, and then continued to embark on the journey of trying everything to “cure” myself, until I discovered TSW and then OFFICIALLY stopped all steroids in January.  But without a doubt, I was going through TSW well before I even knew about it.  And my use of steroid creams from July to January was really sporadic, so this use probably just prolonged my healing a little bit.

All that rambling to say, I know I used the title of 6 months, but it really is more like 1 year.

So what is my skin doing today?  As has been the case for the last months, any lingering “eczema” areas are localized to behind my knees and on my arms.  One day recently I wore shorts to the gym, and after working out on the machines, broke out in this weird itchy, bumpy rash behind my knees (which thankfully only lasted a day).  Clearly there was some kind of contact dermatitis issue, so I still have sensitive skin and have to watch out and be cautious about what I come in contact with.  I also got super excited by Miss Kitty’s post about being able to pet cats, and promptly figured that maybe I also would get lucky and be able to roughhouse with dogs in a blissfully itch-free manner.  Visiting a relative’s dog yesterday, I didn’t even TOUCH the thing and my skin and eyes got itchy, so I know that lovingly petting animals is still, sadly, a no.  (This is fine though, I can still admire them from afar.  In the grand scheme of things, there are worse maladies than not being able to hug a dog or cat).

So, I still do itch and get scabs here on my limbs sometimes, but nothing crazy, more just like “normal” eczema, I guess.  I am waiting for some scars to heal and fade before I truly have “clear” skin, but it’s clear enough for me to live with!  ESPECIALLY because my face and neck are no longer affected and to look at me, no one might be the wiser that I ever struggled with this itchy bastard of TSW.  I have the graphic pictures to prove it, some of which I never even posted on this blog, but even for me, the memory of the sleepless nights and the oozing and all the grossness is distant.  I lived it, and I don’t think I’ll ever forget it, but now it’s all about “What have I learned from the experience of TSW that I can use to help others that might be suffering”.

I don’t post a ton on the ITSAN forum and though I try to make my way ’round the blogs, I don’t comment as much as I’d like, but truly – if anyone needs an encouraging word, you are more than welcome to contact me!   Stay strong, skin friends, you WILL come out triumphant on the other side!

 

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TSW Clothing and My Victory Shirt

When you are going through TSW, the things you can comfortably wear change radically.  Some people can’t bear to have clothes touching their skin at all; some people need to be all wrapped up in layers due to wild temperature fluctuations and chills.  Some people want to wear minimal clothing and have their skin exposed to the air and sun, some people want to be totally covered so their rashes are exposed as little as possible.

I am one of the types that wanted to be covered up, since I continued to work full-time and attend school part-time and didn’t want people looking and asking questions, plus I’m one of those people who is fine with being too warm, but just detests being too cold.

Here are some miscellaneous clothing tips for those in TSW!  Keep in mind these are coming from the perspective of a 20 something female and they are just what worked for me personally, so they may not apply to everyone.  Also, the clothing pictured is examples, and not the specific items I wore.

 

cardigans

I have a couple cardigans that served me very well in TSW. They are lightweight and breathable, and great for layering. Best part is that I could quickly take them off in the restroom at work to scratch frantically for a bit, and then put them calmly back on when I was done. Many of my cardigans also happened to have extra-long sleeves, so they were great for covering up my rashy hands at the time. Also, since you can easily change the look with a cardigan (different tops underneath, add a scarf, etc)., I could get away with wearing them to work very frequently.

 

I was also a big fan of the waffle shirt, when it was cooler outside.  These thermal tops are lightweight but breathable, making them perfect for the temperature fluctuations of TSW whether you be sweating or shivering.  The ones I have are pretty tight fitting to the body, so they also acted as a nice scratching deterrent, since I couldn't roll up my sleeves enough to fully get at my arms and attack them.

I was also a big fan of the waffle shirt, when it was cooler outside. These thermal tops are lightweight but breathable, making them perfect for the temperature fluctuations of TSW whether you be sweating or shivering. The ones I have are pretty tight fitting to the body, so they also acted as a nice scratching deterrent, since I couldn’t roll up my sleeves enough to fully get at my arms and attack them.

 

Those funny tops with thumbhole sleeves are another superb invention that I grew to really appreciate with TSW and the time when my hands looked ravaged.  I have two tops with these type of sleeves and it was nice to just slip these on and not have to worry that my red hands would be revealed.  Plus they are nice at keeping your hands warm when it's cold out.

Those funny tops with thumbhole sleeves are another superb invention that I grew to really appreciate with TSW and the time when my hands looked ravaged. I have two tops with these type of sleeves and it was nice to just slip these on and not have to worry that my red hands would be revealed. Plus they are nice at keeping your hands warm when it’s cold out.

 

 

Exercise-type material shirts are a MUST for TSW.  As soon as I would get home from work, I would shed all my work clothes and put on a long sleeved "tech shirt" from one of my past races.  They can be breathable and loose-fitting and oh so comfortable.

Exercise-type material shirts are a MUST for TSW. As soon as I would get home from work, I would shed all my work clothes and put on a long sleeved “tech shirt” from one of my past races. They can be breathable and loose-fitting and oh so comfortable.  Then I just looked like a really cool athletic runner girl instead of a miserable itchy being.

 

Similar to cardigans but a little more casual, the cocoon sweater is a magnificent invention to be dressed up or down.  I have over a half-dozen in this style and the layering potential is limitless.  I can't wear short sleeves yet due to my scabby, scarred upper arms, which sucks as it's nearly summer, but the 3/4 sleeve length cocoon sweater is perfect for all seasons, even hot ones.  Just layer this over a tank top and you stay cool AND covered up.

Similar to cardigans but a little more casual (I always found typical cardigans with buttons to look a little frumpy sometimes), the cocoon sweater is a magnificent invention to be dressed up or down. I have over a half-dozen in this style and the layering potential is limitless. I can’t wear short sleeves yet due to my scabby, scarred upper arms, which sucks as it’s nearly summer, but the 3/4 sleeve length cocoon sweater is perfect for all seasons, even hot ones. Just layer this over a tank top and you stay cool AND covered up, and no one is the wiser that your arms look like a battlefield.

 

I think I mentioned before in a post that I developed a huge appreciation for scarves while in the throes of really bad TSW symptoms on my neck (oozing, flaking, red, blotchy, patchy, swollen lymph nodes, the whole bit).  I went through a period where I wore a scarf every single day for a good 1-2 months.  Plus a well placed scarf that goes well with your outfit always seems to make people look poised and pulled together, rather than the TSW look of "unfortunate red itchy person".

I think I mentioned before in a post that I developed a huge appreciation for scarves while in the throes of really bad TSW symptoms on my neck (oozing, flaking, red, blotchy, patchy, swollen lymph nodes, the whole bit). I went through a period where I wore a scarf every single day for a good 1-2 months. Plus a well placed scarf that goes well with your outfit always seems to make people look poised and pulled together, rather than the TSW look of “unfortunate red itchy person”.

 

Socks, to me at least, were sort of a quandry with TSW.  If I wore knee high socks like these, I kept warm, but sometimes having that fabric tight against my skin all day would make me want nothing more than to immediately rip them off when I got home from work and attack my legs.  However, short socks meant that my legs were easily accessible, and there was many a time at work when I'd be rolling up my pant legs under my desk and scratching away.  I guess you have to choose for yourself what kind of socks work for you....especially if you have bad TSW symptoms on your feet, which I was fortunate not to have.  You probably want something really light and breathable like bamboo material or athletic socks (not 100% cotton socks).

Socks, to me at least, were sort of a quandry with TSW. If I wore knee high socks like these, I kept warm, but sometimes having that fabric tight against my skin all day would make me want nothing more than to immediately rip them off when I got home from work and attack my legs. However, short socks meant that my legs were easily accessible, and there was many a time at work when I’d be rolling up my pant legs under my desk and scratching away. I guess you have to choose for yourself what kind of socks work for you….especially if you have bad TSW symptoms on your feet, which I was fortunate not to have. You probably want something really light and breathable like bamboo material or athletic socks (not 100% cotton socks).

 

Loose fitting cropped athletic or yoga type pants were another must have.  Really if you have TSW, throw many notions of style out the window and focus on being as comfortable as you can.  I promise, no one minds if you look like a slob for a while.  I liked sleeping in this type of pant, because it made it a little tougher to get at my thighs and scratch them (Normally I wore shorts to bed and that made it WAYYY too easy to wake up with itches everywhere).

Loose fitting cropped athletic or yoga type pants were another must have. Really if you have TSW, throw many notions of style out the window and focus on being as comfortable as you can. I promise, no one minds if you look like a slob for a while. I liked sleeping in this type of pant, because it made it a little tougher to get at my thighs and scratch them (Normally I wore shorts to bed and that made it WAYYY too easy to wake up with itches everywhere).

 

Now we get into the realm of underclothing.  I had really obnoxious TSW oozing and itching right in the groin area.  And it was right where the seam of bikini-type underwear would hit.  I never used TS near my groin, but there are a ton of lymph nodes here and I'd venture to say others of us are probably dealing with similar symptoms near the private areas.  I did two things for this - 1. boy short style underwear worked well since it didn't rub on the oozy itchy areas and thus irritate them more.  2. I recommend getting some underwear that's a size too big.  This way it won't constrict or rub.  (Or you could go commando, but that was never my preference!)

Now we get into the realm of underclothing. I had really obnoxious TSW oozing and itching right in the groin area. And it was right where the seam of bikini-type underwear would hit. I never used TS near my groin, but there are a ton of lymph nodes here and I’d venture to say others of us are probably dealing with similar symptoms near the private areas. I did two things for this – 1. boy short style underwear worked well since it didn’t rub on the oozy itchy areas and thus irritate them more. 2. I recommend getting a few pairs of underwear that are a size too big. This way it won’t constrict or rub. (Or you could go commando, but that was never my preference!)

The last overall thing that I want to emphasize for clothing is that you are probably going to have a bunch of clothing that is ruined after TSW is done, so make sure that you’re not wearing anything that is really important to you.  Yes, it’s gross and unfortunate, but your clothes will probably get stained by blood or ooze.  They will be full of flakes.  They will end up getting smeared with Vaseline or oil, which is very hard to get out.  You will end up wearing the same outfits again and again, and completely stop caring what people think.  Life becomes “survival mode” with just trying to look reasonably human, rather than caring about style or vanity.

I am now halfway through the 5th month of TSW.  Things have been going quite well ever since I passed the first 3 months.  I still flare on my limbs, but every subsequent flare is less intense than the one before.  I’m pretty much still looking like the pictures in one of my previous posts.

My arms are still my biggest trouble spots.  They are full of scars and some scabs and just don’t look good.  Sometimes I look down at them and feel like they look okay, and then I see them in the mirror and realize they have a ways to go.  My left arm is a lot better than my right, for some reason.  They don’t ITCH badly anymore, but they seem to keep developing new scabs which are tempting to pick at.  I haven’t worn short sleeves in public since December and it doesn’t look like I’ll be able to any time soon.

But when I AM fully healed, I will celebrate by wearing my VICTORY SHIRT.  (It’s motivating to have some kind of “Victory Outfit” to keep in mind through the journey of TSW, similar to how someone with a weight-loss goal might buy a beautiful dress in several sizes smaller and keep that in their closet to look at.)  Back in early January, right before I formally stopped all steroids, I was at the mall and found an awesome halter top on clearance.  It’s dark grey with small ruffles around the halter part, and little shiny grey sequins sewn onto these ruffles.  Very cute and sexy and it fit perfectly.  (Tried to find a picture online but could not).  At the time I was still married, and my (ex)husband somewhat rudely asked, “And when are you going to wear THAT, with all the rashes you have?”  (Mean.)  But even though I wasn’t too aware of TSW at the time, I somehow KNEW I would triumph over this damn skin thing, and that one glorious day, I would finally have clear skin and would put on this top, no longer caring that it leaves my upper back, shoulders, and arms exposed to the world.  I don’t care if it’s a month from now or a year from now – I am going to beat this topical steroid addiction into the ground, and when I do – my Victory Shirt will be waiting for me!  😀

Do you have a “victory” item of clothing you are looking forward to wearing when TSW is over?  Any other clothing suggestions of things that worked for you?

 

 

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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!

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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!

 

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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.

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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!

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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!

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