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.


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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.


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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!

20 comments:

  1. Hey Jen , great to hear that you've finally found a solution to your tsw hell. I've been using your blog to provide me with moral support along my tsw journey. I'm currently 18months in and although I'm healing I've hit that stagnant point which you've described. For the first year of tsw I barely had any symptoms just a few red patches on my face. That was until I tried moisture withdrawal. At first it seemed to help but after a few weeks I started to flare ..badly...the oozing began and it all spread across my whole body. Fast forward to now and I can barely take showers without feeling excruciating pain. I had to quit my dream job that I just landed and I'm pretty much housebound. Not just due to the physical pain..but the embarrassment of being seen in public with this horrible illness..im stuck between choosing to continue on this path or jump back onto steroids. From your experience with the dr aron regime have you had any flares since you started? What exactly is involved in the regime? Are you taking the same amount of steroids everyday? Or did you start off with a lot and gradually reduced with the intention of eventually coming off it? Sorry about the tonne of questions but as you can see I'm in a desperate situation and any help would be much appreciated :)

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    1. Lots of applications at first and then less and less. It was miraculous. Life changing. The oozing was THE WORST!!!!!

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  2. hi Jen I am glad u r doing better. I too am curious as to the dr. Aron regime and am looking forward to more details about it. I am actually doing so much better but I don't consider myself fully healed yet.

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    1. I'll post more later! My life has been so full I haven't had time!

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  3. When you started using fucidin + betamethasone last year how many times a week were you applying steroids? Now that you've been using topical steroids for a year, how many times a week are you using steroids?

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    1. Initially, 5 x a day. The steroid was slightly stronger than over the counter. And it was bacitracin. The 5x a day lasted like 4 days. Then weened. At a year in every other day or so. Depending on what I'm exposed to.

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    2. Got it, thanks! I'm 4 years into tsw and trying dupilumab. Topical steroids really messed up the skin on my neck, my neck is still my worst place. I don't understand why some people get burning with steroid use and others do not.

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  4. Hi Jen! Wow what a story. I am beyond happy for you. I have been following your blog and I know what your going through, having gone in and out from severe eczema for so many years. Please blog about your Dr. Aaron story and method as I am very interested in it. I am also very happy about all the breakthrough treatments that are coming out for eczema like dupixent and eucrisa cream. My hopeful that one day eczema will be a thing of the past. Thank you so much for sharing your experience with us. Blessings always!

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  5. Yes , waiting for your Dr. Aaron story also. :)

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  6. I think you are only postponing the inevitable due to your body accumulating more steroids. I would venture a guess that you will find eventually yourself right back where you initially started, except much worse condition. When you post your skin is healed after being off ts for a year or so, and have your life back WITHOUT steroids, it would have some meaning. We all can take ts, and have our life back. But, once we stop using, the rebound hits. Many of us had no choice but to stop because the steroids quit working! Duh!

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    1. I hear what you're saying, but those people posting about healing after a year aren't the norm. I don't have 5 years to give to "see if I heal". Hell, I saw people 8 years and still miserable. I'm mad that I wasted 2.5. It was a WASTE. Absolute insanity and unexcesart. This whole disease has so many unknowns. I eat impeccably and did it ALL by the book. You name it, I did it. And I wasn't healing. I was miserable. And not living my life. Cancer is cured faster. So to tell people that YOU are right and THEY are wrong is ignorant. The experts don't even agreee. And no, just topical steroids doesn't give you your life back. You MUST address the bacteria. I use slightly stronger than over the counter steroid diluted in lotion and antibiotics and use less and less and it works the same. I had to use more and more on neat steroids and the spreading eczema was hit and fire. That indicates t me that there is now healing. And "duh!"? You really just said "duh"? As if you are the authority on this topic and we are all stupid? That's just arrogant and rude. You are NOT a doctor. And you may not be right. Meanwhile, in washing my hands and swimming and sweating without a thought. No side effects. Using less and less. Gracefully healing. And living. Who wouldn't want it this way?? Duh!

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    2. I'm sorry if I offended you. It wasn't my intention. I never said anything about who is right or wrong. I have my own opinions and you have yours. Nothing wrong with that. If I had known how bad this was going to be I would not have done tsw because of my age (old), but instead would have allowed the doctors to experiment away. However, if I had taken THAT route I would likely be far worse off right now. There is little doubt in my mind on that. My setbacks in tsw since the end of my first year have been at my own doing. Like trying ts twice, and my biggest mistake of all, last fall trying a course of oral ts. I could have avoided that last mistake if I had read Dr. Rapaport's site. He was the ONLY one out there that had written about it. Unfortunately, I discovered his info on that particular idea after it was too late. Now there are two people warning about what can happen if one were to take oral steroids in late stage tsw. Still, not near enough, but better than one I suppose.

      I mostly go by logic and common sense. No, I am not a doctor and don't pretend to be. I also am not an authority of any kind. I only share my experiences and my findings on tsa/tsw for others to learn from so they can make better decisions than I made. Kind of like 4 years ago when everyone thought using moisturizers was the best way to find comfort. I debunked that BS idea via logic, common sense, reading studies on how the skin functions, followed by true experience.

      I feel it important people don't find hope in using steroids to heal skin which steroids damaged. This is what doctors do. What's truly important though is information. Information like your experience with Dr. Aron and all info people can contribute. People have to make their own decisions and the more info to draw on the better. I spoke up to offer your readers a different point of view and other info, not to argue. I only want people who read your post to also be aware of what Dr. Rapaport says on both subjects, Dr. Aron's regime, and the new drug Duplimab, since your post sounds so encouraging.

      I am a past patient of the main doctor of the Duplimab studies and have personal experience with this man. The same man who told me 4 years ago that I have chronic eczema and I would have to be on steroids for the rest of my life. When I refused I was offered Protopic. We all know how Protopic turned out. He wouldn't acknowledge tsa/tsw what-so-ever. However, I recently went back to him and he now acknowledges tsa/tsw and offered me a far safer alternative, which I also refused.

      When I cleared my skin last fall with Prednisone I didn't post about how great I felt and what a great drug it is. Show me one single person who has done Dr. Aron's regime and has been completely off ts for at least one full year with no residuals. Then I would be a believer. The logic side of me says there is no possible way that will happen unless it is someone who had a minor tsa/tsw problem. Those people heal quickly with tsw anyway.

      It's not just me that feels this way. Again, be sure to read what Dr. Rapaport says on the subject. I also have personal experience with him, and trust his 40 years experience far more than most anyone. Especially Dr. Aron. Dr. Rap is THE only Doctor in the US who has enlightened people as to what is going on with their skin and steroids. He has successfully treated over 4,000 people with tsa, and claims every single one fully healed. I wouldn't trust a doctor pushing steroids as much as him unless he has a similar track record, which he does not.

      Not trying to rain on your parade. Just want your readers to see other points of views. I truly wish you the best.

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  7. Read up on Dr. Rapaport's red skin site and learn about Dr. Aron, Duplimab, and other important matters you are overlooking. http://www.red-skin-syndrome.com/

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  8. Jen, with all due respect, one thing that caught my attention was you said you had spent the last 2.5 years miserable. I can understand about the first few months but not all 2.5 years. So, I skimmed through your past posts and it became obvious. You were further irritating your skin the entire 2.5 years by applying moisturizers and other things like Eucerine Restoraderm and make-up. My hell lasted only a few months after I stopped smothering my skin with crap and allowed it to function as intended. I have not been miserable my entire 4 years of tsw, other than during some wicked anniversary flares, and a couple of self induced screw-ups, like taking Prednisone last fall, which nearly undid 4 years of healing. I've been able to function a half assed normal life for the majority of my tsw.

    You also took hot showers. Medical science states clearly that hot water strips oils from the skin, so you were aggravating your problem with those as well. Thus the reasons for so much hell. If you had stopped smothering your skin early on like many others did, you would have had a completely different experience. One can not treat a compromised skin barrier as though it isn't compromised.

    It's very apparent from others experiences, not just my own, that those who stopped putting stuff on their skin suffered very little in their mid and late tsw stages. And, those who continued putting crap on their skin suffered the most, and still are suffering as a result.

    Also, you had focused on diets and food very heavily. A clean diet always helps but does not cause one to heal faster from the damage ts do to the body. It took me years for my mind to grasp this. It is as Dr. Rapaport says. Diets don't speed up healing for tsw, period.

    TSW is slow long drawn out process, likely due to serious damage in the body from it relying on ts for so long. Four years ago nearly all unsuspecting people searching for answers ended up doing what people on Itsan was advocating at the time, which was moisturize for "comfort". This idea is completely 100% misleading at best. Moisturizing hypersensitive, skin barrier compromised skin in tsw is one of the the worst things one can do to themselves. It not only causes substantial increased itching, but also slows open wounds from healing, which causes more unnecessary pain, itching, and grief. The skin can't function properly when smothered with moisturizers.

    I haven't even mentioned the well known skin barrier destroyers in many skin care products and what damage they do to the already hypersensitive, skin barrier compromised skin. But no need to because studies prove even the most natural moisturizers still inhibit the skin from being able to function as it should, as well as damages the skin barrier with long term use. Which, in turn makes healing a very miserable experience as you found out. Healing without applying anything to the skin makes for a relatively easy (comfortable compared to "with") recovery. At a minimum, it allows one to function with little suffering comparatively.

    My information is based on science, past studies, my own experience, others experiences, logic and common sense. These are not "conspiracy theories" as someone on Itsan suggested one time. I'm not taking my time here to try and educate you as you have had access to this info since you began tsw and obviously chose to ignore it. My posts are for your readers because I want them to know that using steroids is not the answer to stopping using steroids! If people want to use them that's their decision, but, I want to provide as much info as possible so people can make GOOD decisions for themselves, and not have a situation like Itsan 4 years ago where everyone depended on what a small handful of people said, rather than researching what others say.

    Dr. Aron's methods are NOT the answer! For better info on this guy please read what Dr. Rapaport says about him and his methods.

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    1. I don't have time to respond now, but I will. But I feel like it's important to note that people using dr Aron's WANT THEIR LIFE BACK. We no longer live in a steroid phobic mindset. I am NOT concerned at this point whether or not I stop steroids. I have zero side effects (was experiencing TONS with the traditional steroid method) and am using less and less with equal success. But MOST importantly, my life has been AMAong the last year. You are much older than I am. You could potentially spend the rest of it in TSW. And for what. What would the harm be in PROPER steroid usage if you never had to think about your skin again. Never had to live in fear of a bogus and senseless "anniversary flare." That is NO way to live. What would the harm be in using minimal steroids for the rest of your life if you finally had relief? You have your priorities and j have mine. I could die tomorrow, and all my kids would remember is "mom couldn't do this and laid around a lot with ice packs because of her skin". No thanks.

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    2. I totally understand where you are coming from, believe me. I would have stayed on ts for the rest of my life if I hadn't reached a point where they no longer worked. I had no choice.

      Proper ts usage is a must if one is to use them at all. Prednisone was a life saver for me several years ago in getting inflammation to go away from two past surgeries when nothing else worked, so I'm not anti-steroids as I know they have benefits if used judiciously. Like any drug.

      I guess it really depends on several factors with the main one being how much ts a person has used, what strength, and for how long. I was put on Betamethasone ointment, a super potent topical steroid, 600 times stronger than over the counter ts. If I had been put on low potency ts, I highly doubt I would have reached the point where they no longer worked for me. But, then again I really don't know. A lot of my siblings and relatives use low potency ts with little apparent problem. They have to keep using, but I can imagine they can get away with it since they started out at the bottom end potency wise, and they try to use as little as possible.

      I was unfortunate to see a doctor who put me on the one of the most potent ts that exists. Even more unfortunate that I was told to apply daily even when the rash disappeared, to keep it away. After 20 years of very minimal use, rashes started breaking out in odd places like the palms of my hands. Places I never had eczema in childhood, like I did on my arms and legs.

      Worse yet, during those 20 years I was under the care of at least 5 different doctors as time passed, and not a single one warned me about what I was using, or how to PROPERLY use it. They all refilled my script without question and without cautioning me as to the risks.

      After discussion here, and your last comment, I have to say that what you are doing makes more sense to me now than it did before. I just wanted your readers to have as much info at their disposal as possible. I'd hate to see people read posts like yours and do the same thing without hearing other points of views first. I'm all for people doing what they feel they need to do for themselves, as long as they do their homework and not take my word, or anyone else's word as gospel. I've witnessed and experienced far too much suffering caused from listening to others and not digging deeper to get a better understanding. The more information the better. It is far better for people to read everything available and form their own opinions. We can't blindly follow anyone's advice or opinions as we have all found out the hard way. Peace.

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  9. Thank you for sharing this... you are right. What a relief.

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  10. Cognitive Dissonance is the state you are in jennifer. Dupilumab would have been the more wise option. You are ruining your Th2 levels.

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    1. I'd love to hear more about this theory.

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  11. Wow, Cindy are you a Psychiatrist/DR? or a know it all? How are you so sure Dupilumab is either affordable or safe? It is very new and the side effects are yet to be told. Also it costs thousands of dollars a month and even most insurances would be hard pressed to cover it. Jennifer wanted her life back. That's the beauty of life, we all have free will. Its great that she can share another option.

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