1 Year Update!

Hello everyone!  I have been very lax about posting on this blog and it has been time for an update for a while.  I just realized that yesterday I passed the ONE YEAR mark of being steroid free, so this is timely!

January 23, 2013 was the day I eliminated topical steroids from my life.  My blog took a turn from trying to chase down what was causing my “eczema” to documenting the progress of healing from topical steroid withdrawal.  In addition to my blog, I began keeping a regular diary in Microsoft Word to have an additional uncensored place to vent about my skin, my moods, my emotions, the divorce I was going through, etc.  It’s really interesting to look back at my private diary and see the raw emotion and frustration that was centered mostly all around my skin.

In an excerpt from a few weeks after I stopped topical steroids, I vented about the things that eczema had taken from my life.  I lamented not being able to wear whatever clothing I wanted since I needed to cover up all my rashes; the fact that I had to give up “vanity” girly things like wearing perfume, dying hair, and wearing jewelry so as to not irritate my skin; and I mourned the fact that I felt completely disgusting, un-sexy, and un-confident, and nothing like my old self.

(Almost) one year later… My skin remains mostly healed from when everything cleared up this summer.  My hands sometimes get a little bit cracked and dry, but that’s probably more due to the fact that I wash my hands a lot at work and the fact that it’s very very cold outside right now and EVERYONE’s skin is probably dry, eczema or no.

My legs have also been a little bit more itchy and rashy than they were a month or two ago, but again, I think this is due to the cold dry air outside and then wanting to be in the warm air or taking hot showers inside.  Overall I’m pleased with my healing because the winter months used to wreak absolute havoc on my skin.  Interestingly enough too, my body temperature regulation is such where I don’t really get super cold anymore at all.  For the past 2 or 3 winters after being outside, I would have to rush inside and warm myself by a heating vent.  I suspect this was also due to the steroids but I didn’t realize it.  I have barely sat by the vent once this winter so far, and in fact I happily march around the house sometimes in SHORTS!

This past month I have had some really fun times that I thought I could never enjoy again when I had eczema and TSW rash so badly.  I had written about my Victory Shirt, and how I would know I was truly healed when I could wear this sparkly little top with complete confidence.  I got the perfect chance to wear it at some New Year’s Eve festivities with friends.  I went out, I drank, I danced, I flirted quite shamelessly with guys, I got complimented, I looked and felt great, and I had a blast.  Anyone that has gone through TSW has to permit me a little bit of vanity here, I’m not a vain person but we all want to feel and look our best and it’s wonderful when you can be in that moment, and even more poignant to appreciate it when you know how bad things used to be and everything you had to go through to get here.

I also started hanging out with a guy that I’m sort of interested in, and one of our hangouts was to work out and then go in the hot tub.  THE HOT TUB!  A year ago, or even 8 months ago, there would have been no way that I would have let anyone see me in a bikini because my skin was so bad.  My skin still has slightly better days than others (maybe stress related too) and I wouldn’t want anyone to be scrutinizing my skin really closely because I have a lot of scars (not all from TSW, just from years of eczema), but that was another huge indicator that all is back to “normal”.

And you know what else?  I think I can finally say that I am completely and utterly over my ex-husband and am no longer emotionally affected by the fact that I got divorced.  I never thought I would say that!  Physical and emotional healing is such an amazing process.  I have come to the mature and wise mindset that I am thankful I was married, I am thankful for the times I had with him, and I’m thankful that I got to be in love for the duration I was, as I think it is going to set the stage for an even more awesome and fulfilling love for the future if I find someone.  And if I don’t find someone, I am okay being fabulous and single and independent because I just KNOW this is going to be a great year for me!

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!

Tagged , , , ,

My Post-TSW Skincare Routine

Please excuse the very long absence from the blog world.  I have been meaning to make a post-TSW skincare routine post for a while, and then just kept putting it off.  In all reality, this blog will probably have posts that are way fewer and farther between, since now (OH HAPPY DAY) I don’t need to keep documenting progress of my skin, because I am healed and back to normal!  But, I am still here reading the blogs of others with TSW, and still here to give support and encouragement or just answer questions on TSW, skin, eczema, or life in general :)

So what do I use these days for general moisturizing, cleansing, skincare, etc?

BODY:

COCONUT OIL

If I want to use some type of moisturizer on my legs and body, coconut oil is really the only thing I use these days. I like the idea of using something completely natural and smelling like a tropical island. Some days I forget or just don’t want to be all greasy, and then use no body moisturizer at all… I don’t think coconut oil is a dealbreaker, now my body’s skin seems to retain oils whether I remember to moisturize it or not!

If I have any little bumps or tiny rashy spots on my legs, I use the lovely Calendulis cream from The Eczema Company.

If I have any little bumps or tiny rashy spots on my legs, I use the lovely Calendulis cream from The Eczema Company.

FACE (nighttime):

I wash my face once a day (at night) with Paula's Choice Optimal Results Hydrating Cleanser.  I used this cleanser all through my TSW days too.  It is very gentle and mild and leaves my skin feeling refreshed and clean.

I wash my face once a day (at night) with Paula’s Choice Optimal Results Hydrating Cleanser. I used this cleanser all through my TSW days too. It is very gentle and mild and leaves my skin feeling refreshed and clean.

After I wash my face, it is time to exfoliate to get rid of any dull skin.  In general, I use Paula's Choice BHA (beta hydroxy acids) exfoliant.  I have tried both AHA (alpha hydroxy acids) and BHA, but for me personally, I think I prefer the BHA's effects better.    Sometimes I will switch it up and exfoliate by giving my face a gentle scrub with very finely ground oatmeal.  Chemical exfoliants are best NOT used in TSW...they will sting.  Using oatmeal very gently is okay, and is a nice natural idea for healthy skin too!

After I wash my face, it is time to exfoliate to get rid of any dull skin. In general, I use Paula’s Choice BHA (beta hydroxy acids) exfoliant. I have tried both AHA (alpha hydroxy acids) and BHA, but for me personally, I think I prefer the BHA’s effects better. Sometimes I will switch it up and exfoliate by giving my face a gentle scrub with very finely ground oatmeal. Chemical exfoliants are best NOT used in TSW…they will sting. Using oatmeal very gently is okay, and is a nice natural idea for healthy skin too!

After exfoliating for the night, I use an antioxidant serum, again from Paula's Choice.  I used this through TSW as well and it never stung or gave me any bad effects.  I dab this gently under my eyes and then on other areas prone to eventually show aging, like my forehead and smile lines.

After exfoliating for the night, I use an antioxidant serum, again from Paula’s Choice. I used this through TSW as well and it never stung or gave me any bad effects. I dab this gently under my eyes and then on other areas prone to eventually show aging, like my forehead and smile lines.

Lastly for my nighttime routine, I use grapeseed oil as a moisturizer, putting a few drops of it over my face.

Lastly for my nighttime routine, I use grapeseed oil as a moisturizer, putting a few drops of it over my face.

 

FACE (morning):

I don't wash my face again in the morning... I don't feel like I need to, since it's not like it got dirty in the night with me sleeping.  I splash water on my face and sometimes gently go over it with a washcloth.  Then I use the Antioxidant Serum again around my eyes, and a few drops of grapeseed oil.  My moisturizer every day is Vanicream SPF Sport 35 sunscreen.  This is the best sunscreen hands down - I used it through TSW and it was one of the few things that never made my skin burn or sting.  It goes on smoothly and keeps my skin feeling moisturized all day without being greasy or oily... plus I'm protecting myself from the aging effects of the sun!

I don’t wash my face again in the morning… I don’t feel like I need to, since it’s not like it got dirty in the night with me sleeping. I splash water on my face and sometimes gently go over it with a washcloth. Then I use the Antioxidant Serum again around my eyes, and a few drops of grapeseed oil. My moisturizer every day is Vanicream SPF Sport 35 sunscreen. This is the best sunscreen hands down – I used it through TSW and it was one of the few things that never made my skin burn or sting. It goes on smoothly and keeps my skin feeling moisturized all day without being greasy or oily… plus I’m protecting myself from the aging effects of the sun!

Makeup wise, I LOVE LOVE LOVE these Tarte SmolderEyes eyeliners.  They come in a bunch of colors and they literally do stay on all day and are smudgeproof.  I have sweated heavily in them, and yes, they did fade a little, but still remained intact... very impressed.  I usually line my lower lid in a brown or purple, and sometimes line the upper lid too if I'm feeling fancy.

Makeup wise, I LOVE LOVE LOVE these Tarte SmolderEyes eyeliners. They come in a bunch of colors and they literally do stay on all day and are smudgeproof. I have sweated heavily in them, and yes, they did fade a little, but still remained intact… very impressed. I usually line my lower lid in a brown or purple, and sometimes line the upper lid too if I’m feeling fancy.

I wrote a whole post on this stuff because it's that good.  Tarte Amazonian Clay mascara is wonderful and comes off easily with makeup remover or (my preference) grapeseed oil.  It's not technically waterproof, but I've sweated heavily in it without it smearing.  Two coats of this and I look awake and ready to greet the day!

Tarte Amazonian Clay mascara is wonderful and comes off easily with makeup remover or (my preference) grapeseed oil. It’s not technically waterproof, but I’ve sweated heavily in it without it smearing. Two coats of this and I look awake and ready to greet the day!

So clearly, two of my favorite (and skin-friendly!) brands are Paula’s Choice and Tarte, and I know I’ve mentioned both of these brands in other posts on my blog.  I was not compensated in any way for promoting these, I just think they are two wonderful brands that are gentle on skin and free from irritating ingredients like added fragrances, etc.

One thing that I was really worried about with post-TSW skin was that my skin would be healed, but would be exquisitely sensitive to everything, more so than before.  I am very pleased to note that the ‘sensitivity’ of my skin seems to be what it was before I ever used steroids.  I guess I could truly test it with something I reacted badly to, previously, like aloe…. but since I’ve found a routine that works so well for me, I’m sticking to it.  :)  If you’re out there still trucking through TSW… have hope!  There is light on the other side!  Normal skin awaits!

 

 

 

Tagged , , , , , , , ,

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.

DSC00914

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!  :D

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)!

Tagged , , , , , , , ,

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.

I

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!

Tagged , , , , , ,

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!

 

Tagged , , , ,

Asthma Medication Rant

Like many other ‘eczema’ sufferers/atopic individuals out there, I also have asthma and have had it since childhood.  My asthma is very well controlled with the help of the wonderful pill Singulair.  I almost never have to use my rescue inhaler and my daily activities aren’t limited – I can generally do high intensity exercise with no trouble breathing.

Singulair used to only be available in a brand name form, but recently (within in the past year), drug companies have been given the green light to go ahead and produce this medication in a generic form, with the same active ingredient, montelukast sodium.

This past fall, I received the generic and when I tried it, my eczema got worse and I got puffy eyes.  When I stopped taking the medication, these effects went away.  I don’t think this was just a fluke because I then tried it again and got the same results.

At the time, I filed a claim with the FDA and also called the drug manufacturer to get a list of the ingredients.

This is what is in generic montelukast sodium tablets:

Each 10 mg film-coated montelukast sodium tablet contains the following inactive ingredients: hydroxypropyl cellulose, hypromellose, iron oxide red, iron oxide yellow, lactose monohydrate (128.6 mg), magnesium stearate, pregelatinized starch, sodium lauryl sulfate, sodium starch glycolate, and titanium dioxide.

Basically mostly a bunch of colors and fillers, but the one thing that worries me is seeing Sodium Lauryl Sulfate, or SLS, in the list.  According to the Environmental Working Group, SLS is suspected to be an environmental toxin and has strong evidence of being a human irritant.  I don’t have the focus to get all science-y in my blog like one of my overseas TSW buddies, Miss Kitty Fantastico, although I’m sure this subject is just begging for some graphs and diagrams, but hell, let’s briefly give you a bit more evidence why this SLS stuff probably sucks for all of us.

Let me present a few studies to you where healthy controls were compared with atopic controls being exposed to SLS.  Atopic folks were found to have a statistically significant response with irritant dermatitis.  Here is another article that is pretty comprehensive and cites other scientific research.

So, okay, these types of studies are all over the place, we know that SLS isn’t the greatest thing to be using in our products like shampoos and hand soaps, ESPECIALLY if we have a compromised skin barrier due to eczema or contact dermatitis.

But if I’m actually ingesting this stuff, how does that bode for me?  I find it very ironic that, on the Material Safety Data Sheet for SLS, it says, “Hazardous in case of ingestion.”  Then we read under the Toxicological Information, in part:

Special Remarks on other Toxic Effects on Humans:
Acute Potential Health Effects: Skin: Causes mild to moderate skin irritation. May cause allergic reaction (dermatitis) Eyes:
Causes moderate eye irritation. Inhalation: Material is irritating to mucous membranes and upper respiratory tract. May cause
allergic respiratory reaction. Ingestion: Causes gastrointestinal tract irritation with nausea, vomiting, hypermotility, diarrhea,
and bloating. May also affect behavior (ataxia, somnolence), and cardiovascular system. Chronic Potential Health Effects:
Skin: Prolonged or repeated skin contact may cause allergic dermatitis. Ingestion: Prolonged or repeated ingestion may affect the liver. Inhalation: Prolonged or repeated inhalation may cause allergic respiratory reaction (asthma).
Oh great!  Nausea, vomiting, diarrhea, and bloating?  Not my idea of a fun evening.  Maybe I should be glad I *only* had puffy eyes and rash.  And does anyone else find it ironic that in the last sentence it mentions this chemical may cause asthma, but it’s an ingredient in the very medication used to TREAT asthma??  No wonder you can find accounts all over the internet of people that took the generic Singulair and had their asthma actually get worse.  Do I believe everything I read on the internet…. no, but one can certainly see why lots of people might be reacting to this medication.
My insurance recently told me the lovely decision that “We no longer will cover brand-name Singulair because of the cheaper generic version available.”  After spending enough time on the phone to grow a couple gray hairs and insisting to every customer service rep and pharmacist that the brand name is medically necessary for me and that my doctor is aware it’s a drug that needs to be D.A.W. (dispensed as written – meaning, Don’t give me the generic stuff, this girl needs the real thing), the only thing I can do now is file a letter of appeal to the healthcare company.
If the letter of appeal has no effect, I have two choices.  I can pay out of pocket for brand-name Singulair, which by my calculation, is over $3.00 for a pill PER DAY.  At this rate I could be forced into poverty, but boy, will my lungs be clear and healthy, which will bode well for me when I become homeless and have to live under a bridge on the freeway and be subjected to repeated onslaughts of car exhaust.  [Please keep in mind this post is written slightly tongue-in-cheek, so don't feel like I'm a charity case with a "poor me" attitude... I'm not :) ].  My other choice is to simply stop taking ANY pill form of asthma medication and just rely on my inhaler if I need it.
I’m of the mindset “If it ain’t broke, why fix it”, and being that I’ve taken brand name Singulair for nearly 10 years, I’m naturally suspicious of what could happen if I cease taking it.  Now back relating to TSW, I have read some hopeful things on the forums and such about people whose asthma got MUCH better once they healed from their steroid usage.  I believe this is perfectly credible.  I saw my own suspected food ‘sensitivities’ and seasonal allergies completely disappear now that I’m healing nicely from TSW.  However, I had asthma well before using any sort of topical steroids, so for me personally, I feel like they are not intertwined, but who knows.  Maybe the only way to tell is to do a test for a week or more where I take ZERO asthma pills, and then go back to the Singulair while I still have the buffer of about a month’s supply left, which is likely what I’ll do.
I’d love to hear anyone else weigh in if you’ve reacted to generic montelukast as well, if you’ve also experienced the hassle of trying to get insurance coverage for Singulair, or if you just have any thoughts or recommendations on this situation in general!
Tagged , , , , , , , ,

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!

Tagged , ,

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!  :D

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?

 

 

Tagged , , ,
Follow

Get every new post delivered to your Inbox.

Join 112 other followers