Wednesday, June 7, 2017

TSW to Dr Aron's... ZERO regret and I gained my LIFE BACK!!!

Good grief!  I don't even know where to start.  I stopped blogging because, honestly, I didn't have time.  My life has been so full and back to normal along with my skin that I haven't had anything to blog about.  I don't take photos of my skin anymore.  I don't have updates.  I'm just back to living my life without thinking about my skin.   Skin no longer dictates everything I do.  Showers feel great.  I sleep through the night without Benedryl.  I have energy.  I am eating more foods!  ALL good.  How?  Well, some of you are going to cringe when I say this and quite frankly I just don't care.  I spent my WHOLE TSW experience trying to bring hope to the people who were in the depths of hell.  Showing them where I'd been and how much healing I'd experienced.  But, truthfully, after nearly 2.5 years of TSW hell, I could no longer convince anyone, including myself, that time was going to heal me.  I needed to get back to my life.  I needed to focus on my kids and my family.  I needed SOMETHING.  Enter, Dr. Aron.

If you'd asked me at the beginning of TSW if I'd EVER go back on steroids, I would've SWORN I never would.  TSW gave me a steroid phobia.  Steroids were the reason my skin was nearly killing me.  Steroids were the reason I was in so much pain.  Steroids were the reason for it ALL!  Well, after 2.5 years of NOT fully healing...Of constant flares.....  Of avoiding EVERYTHING due to my skin....  Of being miserable.... I finally decided to try something else.  Anything else.  Anything that could possibly give me my life back.

On a calm night in May I was up late,as usual because my skin was in pain, and I started really looking into Dr. Aron. I almost signed up at the very beginning of TSW, but couldn't quite pull the trigger.   His theory on bacteria being the leading cause of the mess made sense.  I weighed the possibility of TSW being inevitable and me possibly having to go through it all again, and I decided that I would try immunosuppressants if it were necessary some time in the future.  I also knew that Duplimab was in the works, so I had that to fall back on as well.   I had clung to the idea that TSW heals everyone!  Everyone will be eczema free!  Well, I just honestly don't think that's even realistic.  I also started to see my TSW heroes STILL miserable, depressed, and suffering after 5 plus years.   Still taking on the responsibility of bringing hope to others through their blogs and taking blogging "Breaks" because they couldn't share "hope"... because, at 5 plus years, they were feeling hopeless.  NO!  NO NO NO!   That, to me, was not something I could deal with.  So, on a calm, rational night, I took the plunge and purchased Dr. Aron's.

On June 5th, 2016 I received my prescription.  I scheduled a doctors appointment for my doctor to fill the prescription and dove in head first.  I mixed the ingredients how they said.  The chemical smell made me nervous.  I had a rush of adrenaline as I put the mix on my fingers.  I said a little prayer, and applied.  It stung.  It burned, but this was NOT a surprise as my skin was in a perpetual state of brokenness.  And I mean PERPETUAL.  Like a Groundhog Day of painful showers and having to ice my neck for 30 minutes after each one.  I think about those days now and fight panic attacks.  The INTENSE itching.  The oozing smell.  The pain.  I am not even going to waste anymore words on this because you can search my blog and SEE the intense suffering for yourself. Some days I wonder if the suffering was even necessary, but I don't let myself go down that road.

After 3 days I was sleeping fully though the night without waking.  Up until that point, I hadn't slept through the night fully in 2.5 years.  I woke up itching EVERY night.  The sweat from sleeping made me itch like crazy.  EVERYTHING made me itch!!!  I hadn't slept longer than a 4 hour stretch in MONTHS and before that it was 2 hour stretches.  I was a miserable.  Dr ARon's fixed that immediately.  I remember waking up after my first full night of sleep.  I had this weird nervous feeling.  I realized that feeling was energy from having truly RESTED.  How depressing.

After 3 days I could shower!  Showers were no longer EXHAUSTING.  They took everything out of me!  It was so awful!  Well, after just days, showers felt amazing.  I remember standing in the shower with tears of joy streaming down my face because it felt like a shower.  A beautiful, warm shower.  No intense itching.  No intense burning.  No knife like cut feelings.  Just wet warmth.  I had suffered for 2.5 years.  Even avoiding showers for an entire year due to the HORRIBLE pain.  You read that right, I didn't shower for a YEAR.  I am so mad even typing that.

After a few weeks I could sweat without feeling the heat flare!  Oh the freakin heat flares!  I would know I was sweating before I was even sweating because the itch would start.  The slightest raise in heat would cause my body to slightly perspire and the sweat would sting and burn all the broken skin.  OMG it was miserable!  I couldn't work out, I couldn't walk in the heat, I couldn't do anything without feeling like I could just itch my skin off.  UGH.

After 10 days I looked like I'd lost 10 lbs because the swelling had gone down so much.  You could see my chin again.

It took much longer of the wrinkles to subside.  That was months, really.

After 6 months I went on a date with my husband to a work Christmas party and TRULY felt beautiful.  My skin played a huge roll in that.


Well, so here we are.  At my 1 year Aron-aversary.  I have never regretted the decision.  NOT ONCE.  IT has been the best decision of my life.  I would do it 1 million times over.  OVER AND OVER!  It has given me my life back.  I am a human again.  I don't have a lot of recent pics, but here are a few pics I sent my husband and a few from JUST now while blogging at my mom's house.


You guys, I KNOW what you're going through.  I have been through it!  I understand sticking with TSW!  And I understand the fear of going back on steroids.  I support whatever you've decided!  If you have any Dr Aron questions, I am going to be making a post on questions and my full experience.  I had major Post traumatic stress.  Anyway, leave any questions in comments!  And Talk soon, friends!  

Until then, I will be enjoying swimming and sweating and sleeping and anything else I avoided for so many years!

Saturday, June 4, 2016

Where have I been???

I looked at my blog the other night and realized I hadn't blogged in 7 months.  I've kept photos going, but I just haven't blogged them.  This wasn't a conscious decision, but after really thinking about it, hrere's why.

1.  As a long term TSW blogger, there is a sense of hope you feel you need to pass on to fellow readers.  I spent a LOT of my time in the early  hell months reading bloggers who were doing SO much better and their positive posts were just so inspiring.  I would say "Wow!  They are healing SO well at 14 months, I can do that!"  Well, over the last several months, there's really no progress to report.  In fact, it's either been a slow decline or stagnant crap.   I can put makeup on and without drawing attention and can go about  my life, but my face looks a bit swollen and pretty wrinkly still.  I look puffy.  I have gone on living my life, but there is DAILY pain.  Daily reactions to EVERYTHING.  Daily flares from something.  Daily grief from TSW.  ALL showers are still exhausting and I have to ice myself after every single one of them.  When I tell my 6 year old daughter that I need to take a shower really quickly, the first thing she says is "do you need to icepack?"  Seriously?  This motherf***ing disease is still dictating my life.  I am still in bondage over this bullcrap.    I recover much faster, but it's still an ordeal in month 28.  

2.  I'm back to living my life.  I am back to working (photography) so all my computer time is spent editing.  I don't really have time to dedicate to the blog.  And when it's just a reminder that things are still crappy, there's not really a desire to take time for it.

Anyway, sorry for the absence.  I am still not totally caught up, but I'll get caught up when I have time....

Thanks for following.

Day 762 - Day 791 Topical Steroid Withdrawal Month 26

(4/1/2016 - 4/30/2016)
(Day 762 - Day 791)

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