Monthly Archives: June 2013

5 Months Down… What’s Next?

As of Sunday I passed the 5 month milestone and I am now officially in the 6th month.  I have been battling (and winning!) with TSW for all of 2013, but I do not think it will continue into 2014!

I don’t know if other people do this, but sometimes I think about how we have especially “good years” and especially “bad years”.  I vividly remember in 2009 I had a really good year.  Among other things, I got into a nice higher-paying role at work, I walked the runway as a model in a fashion show, my brother got married and his wedding day was so much fun, and then I got proposed to, and all the excitement that comes with anticipating a wedding and future in love.

2013, being that it’s half over, will go down in history thus far as a pretty abysmal year.  School stress, work stress, TSW, and divorce plus all the things that come with it, like losing your home and your in-law family.  But can I just say?  DIVORCE SUCKS, HUGE!  Being lied to and betrayed by someone that held my heart for 10 years is actually worse than TSW, I think.  My skin is healing.  I think it’s only going to take me a year or less.  But in 2014 and onward, will my heart be healed?  I no longer talk much about my divorce on this blog since it’s mainly just for TSW and eczema.  I thought about starting a whole separate blog for working through all the issues of my divorce, but I didn’t want the extra work of another blog, and I ultimately decided I didn’t want my most fragile emotions and feelings vulnerably displayed to the public.  Anyway, before I get back to talking about skin – for anyone going through your own personal difficult times, if you’re reading this, we just have to convince ourselves we are stronger than we know.  Everyone who’s “been there” keeps telling us it will get better, and we have so much trouble believing that.  Will it ever get better?  Will we ever feel healed and whole again?  When it feels hopeless, we have to keep the faith that yes, it will get better.  Many days I don’t believe it myself, but seeing my skin heal has been a good metaphor.  If my outside can heal and I thought it never would, I suppose my shattered heart and soul must be able to do the same.

“We either make ourselves miserable or make ourselves strong.  The amount of work is the same.”  – Carlos Castaneda

So yes, I HAVE been working on making myself strong again.  I turn to God an incredible amount, I’m doing a lot of workouts for physical strength, I’m creating artwork which is incredibly therapeutic, and I’m reading empowering books like there’s no tomorrow.  🙂

To the skin updates, with pictures…

Here is my left arm, looking pretty normal and almost healed.

Here is my left arm, looking pretty normal and almost healed.  I would be fine with wearing short sleeves and revealing this arm.

Here is my right arm, full of scabs, looking like I'm a drug addict.  (Well I guess actually I WAS, though topical steroids aren't usually considered on par with injecting heroin.)

Here is my right arm, full of scabs and red, looking like I’m a drug addict. (Well I guess technically I WAS, though topical steroids aren’t usually considered on par with injecting heroin.)  This is what keeps me from wearing short sleeves to work or around people.

 

 

 

 

 

 

 

 

 

 

 

But, the outstanding thing is that my arms and shoulders actually saw the light of the sun this weekend, for the first time in over half a year.  It was over 90 degrees here and I wanted to go outside and get some of that healing sun while I went for a run on a local public trail.  It would have been completely unreasonable to wear long sleeves, so I wore a tank top and figured, to heck with it.  And, I think the sun exposure really did help my skin a little.

I love being warm, so sweating it up running under the blazing sun didn’t bother me, but as I began to sweat, the backs of my knees began to itch wildly and I just HAD to stop and claw at them.  This was a little damaging:

DSC00814

Also went in the pool this weekend, which was another milestone.  I thought I would never be able to wear a bikini again due to all the rashes.  Now that my rashes are localized to just my limbs, I’m ok with it (plus the fact that no one saw me in my swimsuit except my mom, haha.  I’m not romping around bikini-clad in public just yet.).  I don’t know that I would recommend swimming in general for people with TSW.  The chlorine stung the cuts behind my knees and that area felt really dry later.  Then I kept experiencing a burning feeling in that area while I was trying to sleep at night.  If there are no open wounds, it could be okay as long as you rinse off and maybe use some moisturizer if you prefer.

Anyway – Happy healing everyone, hope you all are having a good week!

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Turning “No Ones” into “Someones”

We all engage in negative self-talk, but in my experience, this has become way more prominent during my TSW and divorce.  I’m cognizant that, even though now I have stable self-confidence again, I’ve been catching myself making a lot of mental “blanket statements” that can be really defeatist and depressing.  The good thing is that I’ve started recognizing them right away before they become my inner reality.  And there’s really no reason for my mind to keep making these statements.  If we take the real biggies of TSW and divorce out of the equation, life is good.  I have a lot of people that love and care about me, I have my health, I have a bright future ahead, and I have the faith in God that I have to be destined for some pretty amazing things.

It dawned on me last night that some of these generalizations running through my mind begin with “No one”, and if I just replace that “No one” with “Someone”, the statement becomes a whole lot more affirming and hopeful.  It’s no coincidence that statements starting with “No one” can start to make you FEEL like you’re nobody, but statements starting with “Someone” serve to remind that yes, you ARE someone – someone unique and talented and not like anyone else.

Let’s look at some of these types of extreme statements and see how much better they sound when I turn these “No ones” into “Someones”.

“No one understands what I’m going through.”  –> “SOMEONE understands what I’m going through.”

“No one grasps that my divorce was completely unfair and not my fault.”  –> “SOMEONE grasps that my divorce was completely unfair and not my fault.”

“No one is left in the world that is not evil, but truly kind and loving.”  –> “SOMEONE is left in the world that is not evil, but truly kind and loving.”

“No one will think I’m attractive and want to be in a relationship.”  –>  “SOMEONE will think I’m attractive and want to be in a relationship.”

“No one will fall in love with me again.”  –> “SOMEONE will fall in love with me again.”

I encountered the principle recently that the reality we make for ourselves doesn’t depend on the facts, but how we view them and react to them.  For example, if you’re going through TSW or a breakup or a move to a new place, or some other kind of life change where you’re forced to spend a lot of time alone – this is a fact.  You are spending time alone.  But is this a gift or a curse?  You can view this as “Everyone else has a ‘normal’ life, I’m all alone and this is awful.”  Or you can view it as, “Here I am alone, what a great opportunity to really take some much-needed time for my own hobbies and interests.”  One viewpoint is clearly going to emerge with a positive view on their reality!

“The longer I live, the more I realize the impact of attitude on life. Attitude, to me, is more important than facts. It is more important than the past, the education, the money, than circumstances, than failure, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company… a church… a home. The remarkable thing is we have a choice everyday regarding the attitude we will embrace for that day. We cannot change our past… we cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude. I am convinced that life is 10% what happens to me and 90% of how I react to it. And so it is with you… we are in charge of our Attitudes.”  – Charles R. Swindoll

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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