Healing Topical Steroid Withdrawal More Challenging than an Expedition to the North Pole…

Deems me, after reading this article: http://www.denverpost.com/Sports/ci_26096487/Eric-Larsen-of-Boulder-defeats-his-own-will-on-way-to-North-Pole.

I read this article initially with interest in the amazing strength and courage it took these two explorers to head out in cold, desolate weather and location that I would never want to attempt. But it’s okay to live vicariously through others’ experiences.  Then, as a I read, the words the explorers used to describe their journey resonated with all the emotion and doubt and perseverance I read about daily on our Topical Steroid Withdrawal support group forums. This puts TSW into perspective in my mind:   TSW is more challenging…. much, much more challenging from all – physically, mentally, and emotionally – perspectives. 

The highlights: 

“Larsen sounded dejected in his late April satellite phone update, telling followers to “take the hardest thing you can possibly imagine and do that for 40 days, then make it twice as hard and keep going.”

Hmmm… Topical Steroid Withdrawal.  40 days?  Seriously.  IF ONLY it were only 40 days of the hardest thing you can possibly imagine times two.  Try nine months or eighteen months or two or three years, Mr. Larsen.  I don’t think he’d start his journey… do you?  Congratulations to ALL of us for even starting this journey.

“I tell people I cry my way to the North Pole,” said Larsen, describing a monotonous grind that saps spirit and body. “It’s such a struggle with optimism. It’s one of the most difficult expeditions on the planet that no one knows about.”

YES.  We cry, scream, rant… then cheer, cajole, make deals with ourselves, celebrate little successes that are huge.  OPTIMISM… such a medium size word for an idea that keeps all people healing from the terrible havoc wreaked on the body from steroids going in their darkest hours.  The pictures on the healed page we sometimes visit several times a day… and if we don’t physically visit them, we visit those pictures over and over and over again in our mind’s eye.  The doctors… a mere fraction acknowledge our pain and suffering and healing.  Not having the support of those people who are supposed to be helping us heal further hurts the optimism and doubt cycle.  Family and friends and acquaintances who get tired of not seeing us better just sort of drop out of our lives… or worse, leave in a storm of judgment.  People know our plight… they just choose to ignore it when it gets too messy and long to endure with us.

north pole 2

Desolation of the North Pole – Courtesy of Google Images

“It is a pinnacle. I will continue to receive e-mails about the North Pole expedition even if no one is successful for the next five years,” Aggens said. “The information we send out pretty much says if you want to do this expedition, think again. This is reserved for people with significant previous experience and fully understand what they are getting involved in, and even those guys have a high rate of failure. It is the hardest expedition on the planet, hands down.”

Wow.  The dermatologist support in this community is infinitesimally small so far. The doctors who do support us face ridicule and derision from their peers when they “dare” publish something detailing the known side effects they are seeing more of daily.  And yet, here we are in our community, with over 5,000 people who a) have finished or b) are in the midst of or c) starting this incredible journey that takes amazing strength of physical, emotional, and mental endurance for years.  And with 1% more joining daily despite the known rigors of the journey. AND, we will all get there.  Varying amounts of time, joy, and heartache, but we will get there.

“Personally, I would have given up if it wasn’t for Ryan,” Larsen said. “If he would have said, ‘You know what: I’m not feeling this,’ I would have said, ‘We are out.’ What do I have to gain for being here again?'”

First of all, we would all be still going down the path of more and more steroids or immunosuppressants and worsening and failing health had it not been for a pioneering, fledgling organization named the International Topical Steroid Awareness Network (www.itsan.org).  Thank you, ITSAN.  Second, without support of our new worldwide friends going through the same thing, we would not have the determination and faith to start or continue this journey in the midst of it – thank you to each and every person in our various support groups.  Third, our close family and friends who stick by us through thick and thin of this life changing experience. Thank you for your steadfast support.  And finally, for those of us with supportive medical (western and alternative!) providers by our side – thank you for caring, listening, and offering whatever help you can.

“Those nagging doubts persist through every expedition. It’s part of the quest, suppressing urges to quit. For Larsen, burying doubt becomes easier when the mission is bigger than himself.”

“It’s part of the quest, suppressing urges to quit.”  Powerful statement, that is.  That is truly what over half of Topical Steroid Withdrawal healing is – the ability to suppress the urge to a) call a doctor and ask for the “magic creams” again and succumb or b) avoid the “magic cream or pills” when the doctors insist they are the only thing to improve your condition.  At this point you are faced with trusting the doctor who has supposedly been trained to know or putting your faith in all the pictures and stories you read about people whose skin lives mirror your own and keep that faith.  Eventually everyone maintains the faith.  It may take them a couple of starts after running into bears in the woods or shifting ice, but eventually, they persevere and keep their eye on the ending they expect their life to be.

“Burying the doubt becomes easier when the mission is bigger than himself.”  What are you doing to create a mission for TSW that is bigger than you in this moment?  If you are early on in this journey, maybe you can only imagine this right now.  If you are a little further on, or in between flares, is there something you can do that fits with your personality or abilities?  See this post for another way to make this bigger than you:   https://healingtopicalsteroidwithdrawal.wordpress.com/2014/09/02/empowering-ourselves-through-volunteer-work/.

north pole landscape

North Pole – Photo courtesy of National Geographic

“This expedition is a good platform to talk about important things, and we all need to be reminded that the world is an amazing place and we all have the ability to go out and discover it on whatever level we choose,” he said. “We just need to do it.”

Topical Steroid Withdrawal is a great platform to talk about important things… especially the amazing power of the human body to heal itself from outside imposed hazards.  Every single person needs to be reminded to try and give natural healing like diet, exercise, sleep, and supplements a little more time to work… because they ultimately will make the body more powerful if you give the body and brain the power to heal itself.  Drugs, on the other hand, used to mask symptoms till they maybe go away, or maybe require another drug, eventually cause the body issues it must adapt to.  Years of this chronic adaptation to outside forcing can eventually cause dis-ease in the body.   Healing Topical Steroid Withdrawal is a slow, arduous, soul-wrenching, optimism challenge and journey, but the results are worth it.

A quote good for all TSWers by Amy B. Scher (found by someone in the forum recently!): “Armed with my positive attitude and inherent stubborn nature, I keep my mind focused and my life moving forward. I stop to rest, pout and even cry sometimes, but always, I get back up. Life is giving me this challenge and I will plow through it, out of breath with my heart racing if I have to.” 

Lastly, but certainly not least, this post is dedicated to all people healing from TSW or caring for spouses, kids or parents healing from TSW.  Most especially my fellow TSW Moms and Kids.  My husband, oldest son, and yes, even to me… who have done this journey together with the purpose, each and every day, to get the youngest member of our family to a fabulous state of health.  And my youngest son healing from TSW… my hero, who has taught me so much through this journey.


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