Feature #15: Tanya Kong

tanyaTanya Kong

Age: 33

Career: Lawyer

When did you cease using topical steroids: I’m not sure exactly, it’s been over a year now.  I stopped after searching ‘eczema’ on the internet and Instagram and discovered the hashtag #tsw. I remember having one last prescription of steroids in my cupboard at that time, and telling myself once that supply ran out… I wouldn’t go back to the doctor.

What type did you use: Can’t say I paid attention to the names, but mostly a mild to medium strength brand. Often would just pick up the over the counter 0.5% hydrocortisone, but the last prescription I remember was from my family doctor –  500ml lotion bottles of 1% hydrocortisone with 2 refills.

What is your favorite product for comfort? It’s varied over the year or so. I hate using anything that isn’t natural. Right now coconut oil is working really well, which is weird as before it would make me extremely itchy. My skin seems to be taking it much better. If I put anything else on it – I get unbearably itchy, including any creams touted to be for itchy or dry skin with no fragrances etc. But of course, above and before anything else, this whole process has inspired me to learn SO much more about the body, how it works and how I can help my body with supplements, good food and nutrition. I find a big part of this struggle is the mental anguish, the insecurities, depression, anxiety, lack of motivation, loss of hope…Going to topical therapies is one method to quell the pain, but the biggest difference has been eating the right foods to control my moods and keep my energy up. I make a smoothie every morning and throughout the day supplement with daily doses of goat’s milk kefir (prebiotic), DHA and fish oils (skin texture, brain and nerve function), hemp seed oil as a source of omega 3 and vitamin E (skin, brain and nerve) ashawaghanda herb (stress and anxiety), ionic magnesium citrate (waste removal, relaxation, sleeping and quelling inflammation), maca herb (better mood, stress relief, sex drive), blueberries (skin and brain function), raw cocao (source of magnesium and zinc – helping heal the skin), zinc citrate (heals the skin), turmeric (calms inflammation, improves mood), chlorella (remove toxic metals from the blood), raw honey (can be mixed with anything in warm water – improves bioavailability of herbs and supplements– i.e. helps body assimilate and process these supplements so they work better!)

What is the hardest thing to deal with during this condition? I’m a lot better than I was. It’s been an incredibly challenging year. It’s difficult to relay to others the pain, and garner the understanding and empathy for someone who itches constantly, shuns their new reflection, and feels shame and embarrassment in public. The pain, distraction, stress, and anxiety can be unbearable. I’m a private person, and I don’t like to burden people with my personal problems, and I do believe we all have some kind of struggle to endure – whatever the form. But I think what makes this most difficult is explaining the complexity of my pain. Most nights have been a push, a call to god to be strong and power-through the unbearable itch, the soreness and missing out on life and being normal. Any woman wants to feel pretty, sexy and powerful in their own skin. Skin is a reflection of health, vitality, and sensuality. It communicates feelings and emotions through touch. To lose confidence, and self-worth; to see my bright light fade and watch myself and my face, neck, chest and arms deteriorate over the last year and not have the strength, energy or stamina to see the people I love and adore, then watch friendships I turned away from for fear of appearing frail or being viewed as ‘unpretty’ fade over time has been hard. BUT, I refuse to look at this as a loss! I’ve learned so much about my body and I’ve discovered the most real and authentic sources of love in my life. I thank it. Sharing this story means one step towards our collective evolution in accepting that the body is an intelligent biological system that knows how to heal itself.  Prescription drugs that suppress symptoms have the potential to wreak havoc on the body, more havoc than we ever imagined and often much worse than the original ailment. We MUST give credit to and appreciate the merciful intelligence ingrained and innate in our cells. Our body can heal itself, if we appreciate it for everything that it is, and allow it!

What is the first thing you will do when healed? I’m almost healed now…and slowly but surely, I’m feeling more and more comfortable going out, showing off my glowing personality and gaining back my confidence. I’ve had a few good days recently and have felt overwhelming joy over not itching in public and being able to present myself with confidence and positivity. I’m a wonderful person with much love to share when I’m not wincing in pain!

Depression Reversal

Ever thought about our stomachs affecting our thoughts and emotions?

“There is a huge and growing everyday body of evidence connecting the health of the gut to the health of the brain. In fact, there’s a saying in functional medicine, fire in the gut, fire in the brain, which means that if you have inflammation, parasites, small intestinal bacterial overgrowth, fungal overgrowth, or dysbiosis in the gut, then that is going to produce an inflammatory response that in turn affects the brain and can cause inflammation and a whole bunch of other problems in the brain, and this is not a fringe theory at this point. It’s true that unfortunately not a lot of primary care doctors or even psychologists or psychiatrists are aware of this connection, but that doesn’t mean it isn’t well established in the scientific literature. It absolutely is. And in fact, it’s been known for almost a hundred years going back to some research that was done at Duke in the early 1930s and 1920s connecting the gut and the brain and even the skin in this axis—the gut–brain–skin axis, which I’ve written and spoken about before.”

This podcast goes into a lot of detail about how inflammation, anywhere in the body, can affect our minds (the frontal cortex).

Also, Kresser talks about the HPA axis, or the hypothalamic–pituitary–adrenal axis. If we’ve learned anything about topical steroid dependency, we know that overuse can lead to a suppression of the HPA axis. And then, add chronic, everyday stress to the situation, and you’ve got a system that is extremely overloaded.

The last big subject he touches on is deficiencies in the body that could be contributing to depression. If we are lacking in certain vitamins and aren’t using it optimally in the body (methylation issues) then it can be throwing our balance off.

I highly recommend this podcast if you wish to catch his more in depth explanations on depression and inflammation in the body. What we are eating and lacking in our diet could  the reason we are mentally suffering and struggling to get through certain situations.

Kresser Podcast on Anxiety

Feature #13: Ariana & Hayley

ari-mundAriana Yunda

Age: 30

Career: unemployed due to TSW

When did you cease using topical steroids: August 23 2016 (third try)

What type did you use: I can’t remember every kind. I’ve been using for 29 years: hydrocortisone, prednisone, clobetasol, betamethasone, Elidel, Mometasone Furoate and tons of injected immunosuppresants like Bethaduo and Ciclosporine.

What is your favorite product for comfort? It changes, but lavender essential oil has helped as sleeping aid (I put it in my feet every night),  zinc oxide when oozing and lately a spray called MR. Wheatgrass that I put on my skin when I get out of the shower and reapply every time I feel dry. Any other moisturizer, whether it’s a cream or oil, burns.

What is the hardest thing to deal with during this condition? Having the symptoms of the shivers, the oozing, the no sleep, the crazy diets stopping my life.

What is the first thing you are going to do when you are healed? Jump in the ocean, work out and dance without worrying about my sweat burning. Start working again! I became a therapist in the process 🙂 I want to help others.


Hayley hayley-szabo

Age: 24

Career: Unemployed for two years due to TSW

When did you cease using topical steroids: 17 December 2014

What type did you use: Diprosone and advantan (very potent)

What is your favorite product for comfort? Zinc balm and ice packs!

What is the hardest thing to deal with during this condition? The severity of my facial symptoms, the lack of independence,  having to put my life on hold and the bloody heinous OOZE…

What is the first thing you are going to do when you are healed? I’m going to do everything I had to put on hold! I want to start working again, I want to go back to uni and get my masters, and I want to travel to Europe with my boyfriend!

Interview #6: Maartje Francisco

maartje2016Maartje Francisco

Holland

“You will never get better until you stop trying to get better”

1.When did you start using topical steroids? And why?

I started applying when I was 16, because the doctors said I had children-eczema that I would grow out of eventually. So we used it for my neck and nipples.

2. What was the name of the topical steroid?

Bethametasone (potent 3)

3. Were you ever prescribed more potent steroids? 

When I was 24 I took a allergy-test with the derm and nothing came out so they gave me potent 4, dermovate. To apply on my hands/wrists.

4. How did you find out about RSS?

I’m a typical case of Topical steroid addiction, one day I googled this in Dutch first but I couldn’t find anything. I had a feeling I really needed the TS to make it normal again. For a while. But then it would come back within 5 days or so. I stumbled on the itsan website, saw the animated clip and it was such an eye-opener!

5. What made you feel you had RSS?

My hands and arms would gradually worsen and it burned, was bright red and spreaded like fire. With the dryness after every flare.

6. Were you diagnosed by a doctor? Did you have a supportive doctor?

No, I am a beautytherapist so this was a crazy but educational and inspiring ride for me! I found a great product for my company and skin and the manager in Holland of this product is Chinese and she knows a lot about TSW and the Chinese derms that dó treat this in different ways but without TS.

7. What were your first symptoms?

Itchiness, redness, and burning.

8. Is your family supportive? Friends?

YES! And it is oh so important, my mother is the strongest person I know and I couldn’t have done it without her. My husband, father, sister and kids have been by my side the whole ride. Some friends were interested and asked how it would go sometimes. But as we all know, if you don’t go through this you really don’t know what it is.

9. Have you ever been to a hospital for this? 

I made an appointment with a derm to get UVB Therapy. I got it at home! That was great for winter 2015.

Had a skin infection one time through TSW and I was on antibiotics for one week.

10. What has been the hardest part of this condition?

ITCHENESS! And the lack of sleep and almost no physical contact. But after all, the mental struggles on bad days are the hardest.

11. How long have you been in withdrawal? 

Im 31 months in now, but I stopped counting after 2 years, because it became bearable after that, and I got to do everything I wanted to do again. But I think I’m not healed yet.

12. What do you use as comfort measures during this?

Dermaviduals, my skinbarrier creams.

13. Are you employed? Has this affected your job status?

I have my own business. I worked throughout the whole process but of course it affected everything. But for the better…at the end.

14. Have you gone to therapy/wish to go to therapy because of this condition?

For a while, and it was more in a coach/mindfulness-way than a psychologist.

15. If there is one thing you could say to another sufferer, what would it be?

One day at a time, and time will heal!


Amazing interview! Thank you tons, Maartje!

Feature #12: Carol & Bara

carol-arsenaultCarol Arsenault

Age: 67

Career: Graphic Artist part time

When did you cease using topical steroids: May 2015

What type did you use: I used Ultravate for hand eczema and  clobetasol for my lip

What is your favorite product for comfort? Favorite product was neem cream and dead sea salts

What is the hardest thing to deal with during this condition? Hardest part was the itching, not sleeping, clothes bothering me and the constant thinking about suicide.

What is the first thing you are going to do when you are healed? First thing I did since being almost cured – visit my sister.


Bara Křepínskábara-krepinska

Age: 15

Career: studying book culture in high school

When did you cease using topical steroids: 1/26/2016

What type did you use: I don’t remember what I first used as a baby, but my eczema disappeared, then reappeared with puberty – I used mild steroids like Advantan on and off for 3 years

What is your favorite product for comfort? Hairbrush for sratching, comfortable cotton hoodies and pajama pants

What is the hardest thing to deal with during this condition? It happened the year I was finishing primary school. The hardest part was losing all the months I could have spent with my friends lying on sofa under blanket and eating ice cream. I lost time in my life I can never get back and I’m so sorry for it.

What is the first thing you are going to do when you are healed? I have lots of things on my bucket list! Get multiple tattoos, pierce my nose (and other body parts), cut my hair and dye it crazy colors, wear bold makeup, wear wool, lace etc, grow long nails and do different nail art every day, and take long showers and long baths !

Interview #5: Caroline Langdon

caroline-langdonCaroline Langdon

Adelaide, South Australia

“You are the sky. Everything else – it’s just the weather.” ― Pema Chödrön

1.When did you start using topical steroids? And why?

I was treated with steroid cream from infancy for atopic eczema.

 

2. What was the name of the topical steroid?

My mum thinks the first steroid cream was called Celestone.

3. Were you ever prescribed more potent steroids? 

Yes. All kinds. All strengths. For eczema.

As a young child I had severe eczema and was prescribed mild to strong steroid creams and ointments for different parts of my body. I think from around the age of twelve, I started using it on my face as I’d developed eczema there as well. Mostly around my eyes and mouth at that point. By the time I was a young adult I used steroid creams and ointments on and off, of varying potencies.  On my face and different parts of my body. By this time I knew steroids were not a great option long term and endeavoured to use them sparingly.

I tried all manner of things for managing my eczema naturally (without steroids), via nutrition, supplements, lifestyle, natural creams/potions etc…. but my skin would eventually become completely unmanageable after a few mths if not before. I would need to use steroids again to control my eczema, so that I was able to sleep, work, care for my children and function properly. They suppressed it, it worked temporarily/superficially, that is, until it didn’t. Such a vicious cycle.

4. How did you find out about RSS?

I typed into my computer something like: red, burning, severely itchy skin… and eventually stumbled onto ITSAN.

5. What made you feel you had RSS?

I was desperate to find out what was happening with my skin, it was not like the eczema of my past (though that was no walk in the park, this was much worse). It was often red, itching and burning. It didn’t matter how great my diet was or what else I tried, it kept getting worse and spreading to areas I’d never had eczema before. My asthma and hayfever were super bad on top of it. I’d always been an allergy prone person but I seemed to be allergic to everything! I was getting nowhere with the dermatologist I’d been seeing, except sicker and sicker. My skin was so unmanageable, it was affecting every facet of my life! He had me back on steroids telling me I had eczema urticaria and said, ‘Many people have to manage it with steroids the best they can the rest of their life, you’re not the only one!’ (I think this was meant to be comforting??). He put me on an immunosuppressant drug used for cancer and transplant recipients, which is what they give people with very bad skin conditions too I discovered but I agreed as was desperate.

My immune system was at such a low ebb, I felt so sick and run down and I had skin that was red, burning and incessantly itchy most of the day/night.

I indeed wanted relief but I didn’t want to be taking these drugs for the rest of my life, especially when I seemed to be getting progressively worse, not better!!

There had to be a better answer.

I was in such despair. I started googling my symptoms, things like ‘burning, red skin/ hives/ rash spreading to new areas/ relentless itching/ palpitations/ severe anxiety/ no sleep etc’ and found other people who described EXACTLY what I was experiencing and going through, the common thread having been the use of topical steroids.

Then I stumbled across ITSAN which was such a relief.

I had finally found a site and support group (so many people going through exactly the same thing as me!) that talked about Red Skin Syndrome.   The site linked many studies and medical publications about how Topical steroids can cause this condition in the body …..and people were finding a way to overcome it!!

Stop using them!! Ha, sounds easy right? Not so. If it were easy to stop them, I guess there wouldn’t be so many using them. Hardest thing I’ve ever done!! Also the best thing I’ve ever done!!

6. Were you diagnosed by a doctor? Did you have a supportive doctor?

No I wasn’t but my gp had seen me get progressively worse over time. When I told her that I believed it to be the steroids promoting the condition and shared info from ITSAN and others experiences with her, she found it to be very plausible, though she had never seen anybody else that was in the state I was in personally. She’s an Integrative Medicine GP so she was very supportive in monitoring me, etc. I don’t know what I would have done without her in those first 12 months, for moral support alone!

I had a great naturopath as well. Very lucky in this respect.

7. What were your first symptoms?

Spreading rashes, hives, red skin, burning sensation, crazy itchiness, sore eyes, poor sleep, heart palpitations, anxiety, depression.

8. Is your family supportive? Friends?

Yes, I’m so grateful to those who were/are.

I fell out of touch with many people though (or they with me). Mostly because I could no longer go out and socialise for quite a long time. It’s a very isolating experience in that sense.

9. Have you ever been to a hospital for this? 

In the early weeks of tsw, I was in a very severe state and had come up on the waiting list with the Dermatology Dept at the hospital.

After my previous experience with the dermatologist I wasn’t sure about going but was in such a bad way, thought I should keep the appointment because at that particular point, I felt like I was close to dying, no kidding! I had no idea how, or if the body could cope with this for much longer. Complete head to toe, burning, red, oozing and tremendous oedema. My face and entire body was filled with fluid and leaking it out everywhere at the same time. Nobody who knew me would have recognized me, I barely recognized myself. I walked in, in a knee length cotton night singlet, which was agony in itself. At home I couldn’t wear anything it was so painful. I looked like a maniac, itching insanely everywhere. The nurse at the counter got a cold, wet sheet and threw it over me, it was heaven for counteracting the heat in my body. By the time I was called in to see the dermatologist, I was shivering like crazy. I tried to explain that I had been reacting badly to steroid treatment and had ceased using any creams in the last few weeks.
They deemed me ‘critical’ and that I should be admitted immediately! I asked how they would treat me if this happened and they said with steroid wet wraps and oral cortisone.   I said that steroids were responsible for what had gotten me into this mess and so that was not an option really.

They basically said, ‘Oh well, if that’s not what you want we can’t help you today… but how do you think you will manage this by yourself at home’. I was gobsmacked, I thought they may have been able to provide some help or checking of vitals etc to make sure they weren’t sending me on my way if they were deeming me ‘critical’!

I said, ‘I don’t know, I guess I’ll go to my gp and get her to monitor me, make sure there is no infection, or something..’, to which they responded, ‘oh, your gp won’t be able to do anything for this’.

If you don’t want to be steroid tempted, hospital is not the place to go. I walked out and went home. It was truly the hardest yet best thing I could have ever done for myself.

10. What has been the hardest part of this condition?

The debilitating and painful nature of it, the fact that it unpredictably effects not only the skin but many aspects of the body’s internal and systemic functions. The continuous lack of sleep. The fact that it takes an undetermined length of time to recover from. Hmm, I guess there have been a few hard parts.

11. How long have you been in withdrawal? 

I’ve been in withdrawal since February 2014, so 33mths so far.

12. What do you use as comfort measures during this?

Tsw support groups have brought much comfort along the way.

Baths with Epsom and ACV (apple cider vinegar), icepacks, pressure bandaging, soft cotton clothes and bedding.

Sudocrem and Robertson’s skin repair ointment.

Meditation and drawing.

Good food.

Reading .

Many things but these are the staples.

13. Are you employed? Has this affected your job status?

I have been unemployed throughout tsw. Was unable to work and fortunate to be able to take time to repair my body. Have been doing some volunteer work but am only just recently beginning to seek work again. It’s been a financial drain of the highest order.

14. Have you gone to therapy/wish to go to therapy because of this condition?

Yes, I went to see a psychologist over the first 2 yrs. I found it to be really helpful in keeping me sane. Fortunately for me, he was very interested in nutrition and health, had a good comprehension of the impact prescriptive drugs can have on effecting body chemistry, health and well-being. It was an incredible support at a time when I really needed it, he provided good counselling space for me. He also used hypnotherapy in some sessions to help with pain and itch management. It made a dent.

15. If there is one thing you could say to another sufferer, what would it be?

The intensity subsides.

Time and perseverance definitely has its’ rewards, IT DOES GET BETTER!

Trust that your body has incredible ability to right itself.

Tsw is a lesson in loving patience, with oneself.

That was more like four!


Caroline, thank you! Such an in-depth interview!

Feature #9: Will & Ashlee

will-hannahWill Hannah

Age: 5 1/2

Career: Pre School

When did you cease using topical steroids: October 13, 2015

 

What type did you use: Advantan and Eleuphrat  (high potency)

What is your favorite product for comfort? First two months “Simply Natural Oils” chickweed ointment. Month 3-4 Natural Shae butter. Month four moisture withdrawal. Epsom salt baths and wet wraps soaked in coconut oil for first four months.

What is the hardest thing to deal with during this condition? Will says sensitivity to the elements– wind, sun, rain etc. His mother says he hated zingers and the ‘fire ants’ feeling

What is the first thing you will do when healed? We went camping and swimming in the beach last weekend despite mild anniversary flare. IT WAS AMAZING!!! Living the dream already!!!


Ashlee Coxashlee-cox

Age: 26

Career: I’m currently unemployed due to TSW. I was a track rider/stablehand in a horse racing stable.

When did you cease using topical steroids: July 2016

What type did you use: I used various different types of TS, primarily Betamethesone, Diprosone and Prednisolone.

What is your favorite product for comfort? I find Dermeze Ointment has provided me some relief during TSW. Also cool baths.

What is the hardest thing to deal with during this condition? There are so many negative sides to TSW, it’s difficult to pick just one. For me it would be the utter destruction of my career and sense of living. Not being able to leave the house due to such severe skin for so long leaves its mark.

What is the first thing you will do when healed? The first thing I want to do when my skin is better is take up horse riding again! It’s painful not being able to spend any time doing the things I love.