Archive | September 2014

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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Empowering Ourselves through Volunteer Work

The past 7 weeks have been hard (originally wrote this August 11). But a light at the end of the tunnel started occurring after a BodyTalk session July 30. A long flare turned the corner. Sleep started happening a little bit again – which had gotten pretty outrageous – L was unable to sleep till sometimes, 5, 6, or 7:30AM! Then he had an anaphylactic reaction to milk on Monday, August 5, which ironically seems to have sped up his healing process at a remarkable, warp speed rate (in comparison to normal TSW healing rates!). He is fine now, I’ll do a blog post on that another time.

Today’s post is to encourage anyone going through TSW to find a way to get the word out about TSW. You see, last year, another caregiver mom, Jill, and I attended the Food Allergy Research and Education (FARE) walk that is held in Denver (and other US cities) every year for food allergy families. I knew of the walk and felt it was beneficial for an ITSAN presence due to it being majorly sponsored by National Jewish Health, who everyone in the US thinks of for eczema, food allergy, and asthma treatment. Here’s us with our informational signs and cards we handed out to people.

Jillian and I at the Food Allergy Walk in Denver, CO 2013, educating food allergy families on the dangers of Topical Steroids.

Jill and I at the Food Allergy Walk in Denver, CO 2013, educating food allergy families on the dangers of Topical Steroids.

This year, with L coming out of a long flare after the one year mark, and then the surprise first time anaphylaxis resulting in not one, but two, epi pen treatments, two ambulance rides – one to the ER and one to the Pediatric ICU for the night – and losing my partner in advocacy to the great city of Chicago, I didn’t know if I had it in me to attend the walk this year. I finally decided I needed to – first to support the great cause (I make a donation to FARE in exchange for getting the table) due to our circumstances this week (the Auvi-Q epinephrine injector saved my son’s life and I found out about it at last year’s walk), and second to not lose a year of awareness for anyone in the Denver area dealing with eczema and looking for answers. I therefore completed my paperwork at 11:48PM Friday night before the walk starting at 8AM the next morning.

When I arrived, at 8:15AM, 15 minutes late since I am still a tired mom who had an itchy TSW kiddo wake up and need me before I left, I got my table. As I’m trying to secure the signs from blowing over, a petite 50ish woman stops and says, “Thank God. You’re here. Finally…[big sigh]” I clarified with a confused, “What?” or something like that. She answered, “I’ve been waiting. My husband died from that stuff. First the skin stuff, then when that didn’t work anymore, prednisone, prednisone, prednisone! All the time. He just kept getting worse, his whole body, his kidneys – they quit and he died.“ “Oh, my, I’m so sorry” I express with deepest appreciation and concern for her story and her husband. She continues, “I’m just so glad you’re here. I’ve been waiting for the day someone tells people about these drugs.”  

Coincidence? I think not. I think that the Universe decided to give me a sign that all the tired and heartachy feelings of late had a purpose. To get me to this walk to get the word out. I know that I met a 40-ish man who he and his wife read the posters and he knows he’s dealing with Steroid Induced Eczema and finally has a cure after living for 8 years on prednisone for a… wait for it… RASH on his FOREARM that… is NOT cleared on topical steroids or oral prednisone! I know that I met a young man who saw that Topical Steroid Addiction/Steroid Induced Eczema is what his step father is dealing with and was going to pass on the information. I know that there were three families with young children who now suspect TSA. I know that I educated at least 100 more families about the risks of topical steroids. I know that a pediatrician for an office in the 5th largest city in Colorado stopped and got the ITSAN information and was going to do more research. I know that another doctor received our information and she talks with food allergy (and thus probably eczema) families all the time. I know that an allergist for a large allergy and dermatology clinic in the area was pissed I was there, yet, said, “Yes, steroid sensitivity, I know all about it” when his friend was chatting it up with me and asked the allergist if he knew what I was talking about.

So this lady’s devastating story of the loss of her husband due to initial topical steroid usage for a rash that continued to get worse and worse and worse was scary to say the least and a travesty on the part of the medical profession that they couldn’t see that the drugs were causing the problem.  And might have been my now 4 year old amazing son had we not discovered ITSAN when we did.  I see children daily whose parents choose National Jewish Health or other doctors who state they will “taper” these drugs for our children, but in the meantime prescribe in what is called an “off-label” prescription practice – under wet wraps, over 20% of the body, more than 1-3x/day, for more than the recommended 2 weeks’ usage. What is truly a problem is that the doctors never inform these parents that these practices increase the child’s risk for serious, adverse, possibly debilitating or life threatening reactions.  And then when the drugs quit working, their doctor’s only response is to switch to oral steroids, or steroid injections, or immunosuppressants used for cancer or organ transplant patients, because obviously, their child is “one of the worst cases the doctor has ever seen”.  

I know that I was meant to be at that food allergy walk, as exhausted and overwhelmed as I was.  My being there made a difference for many.  Not the least of which was for my own mental and spiritual well-being. Making the best of the 14.5 month journey our family continues in supporting our youngest son. Benefiting others so that they may avoid this journey and find one that is a healthier option earlier on.
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So… What are you doing to spread the word about the risks of Steroid Induced Eczema? Some people are writing blogs, for instance: http://beyondtheitch.wordpress.com/; others are posting YouTube videos: https://www.youtube.com/watch?v=bAflPJV-wrI ; some are starting Facebook groups: https://www.facebook.com/groups/848237715204154/; some are drawing artwork and sharing online: http://kimherbst.tumblr.com/post/95604236519/new-personal-piece-that-shows-how-ive-been and http://kbrechtel.tumblr.com/post/86835896978; some are posting the new IMIA symbol in a school mural: https://www.facebook.com/ITSANMIA/photos/pcb.715010991901374/715010671901406/?type=1&theater (see the heart and hands picture); some have started the ITSAN Moms In Action group: https://www.facebook.com/ITSANMIA and http://www.itsan.org/get-involved/itsan-moms-in-action/. (Just a small sampling from the TSW community of people’s efforts to document their TSW journeys.) If you are an 18+ month TSW vet: Please go post your story at ITSAN and check in to offer some words of wisdom or hope!  You are our inspiration and hope for the future!  For other ideas, you can look here: http://www.itsan.org/get-involved/volunteer/. Additionally, you can message me if you are interested in helping the IMIA Moms to complete some of their many, many projects that are being created to help families deal with doctors, schools, other caregivers, and child protective services. It truly is empowering to know that you are helping to prevent more of this from happening.

Feel free to copy, paste, and share this image!  One of IMIA's first accomplishments!

Feel free to copy, paste, and share this image! One of IMIA’s first accomplishments!