More From Sufferers

Hey Preventables,

I wanted to make another blog just showcasing some of the things that are being posted in the groups. This PREVENTABLE condition is causing so much pain and suffering. All I wish to do is play a role in ending the overprescription of topical steroids so this pain can end. Please consider donating to this cause either through the project PayPal (preventable.doc@gmail.com), or through the donation link on the front page.

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Way too many of us get laughed at in a doctor’s office. How inconsiderate, especially if we are bringing FACTUAL resources with us written by other doctors.

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This is so much more than a skin problem. Our mental health comes into play and we need all the support we can get.

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Doctors are prescribing these drugs to be used on places the very drug itself says NOT to be used on. There needs to come a point where the “DO NOT USE PAST 2 WEEKS…. unless prescribed by your doctor” needs to be abolished. Just because the doctor says to do it, doesn’t mean the warning on the label goes away.

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I, personally, did two sets of tapering oral steroids. My skin gradual got better on the pills, but as soon as it tapered off, I went right back into this mess.

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How unfair this that? Even when there is proof, a doctor is going to deny it? It makes absolutely no sense.

NEW10

So many people who don’t believe in this say they think its outrageous that people are doing this and should go back to the drugs if they are suicidal. When will the thinking start turning towards saving people from this by actually prescribing these drugs correctly/actually finding out the cause of the patient’s problem instead of continuing to endanger patients and call them crazy for ceasing to use a drug that is literally destroying them from the inside out?

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I saved the best for last. This hits home for so many sufferers.

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This is not about bashing steroids. This is about showcasing how overprescribing these drugs are ruining people’s lives in every way imaginable.

Feature #22: Zuzana & Kara

zuzanaZuzana 

Age: 32

Career: Work at a help desk, but now on Maternity Leave (but may have had to quit due to TSW if it wasn’t for Maternity Leave)

When did you cease using topical steroids:  Sept. 17, 2016 (Previous tries — 10/15, 12/15, 3-6/16) Also ended Cyclo (an immunosuppressant) 300mg in January 2017

What type did you use: Dexa- and betamethasone ointments, Hydrocortisone and methylprednisolone shots, 1 round of oral steroids – Prednisone in 02/15

What is your favorite product for comfort? Vaseline + ichthamole and zinc oxide, tea tree oil for scalp, Probiotics, gluten and alcohol free diet. When I use the bath: Dead Sea salt, Epsom salt, ACV, tea tree oil, but now I just shortly shower

What is the hardest thing to deal with during this condition? Insomnia – the nights, hair loss, how itchy and oozy it is, being scratched to death and not being able to do anything about it, to care for my baby, to wear clothes – People thinking it us just a rash and telling me not to scratch – Being a burden to my family – Skin and smell is everywhere

What is the first thing you will do when healed? Take my daughter to the pool as she loves water and to swim, enjoy life again, live again and touch my dogs again.


Kara kara-headshot

Age: 38

Career: Attorney and COO

When did you cease using topical steroids: September 30, 2012

What type did you use: Cloderm

What was your favorite product for comfort? Dead sea salt baths, castor oil

What is the hardest thing to deal with during this condition? Disfigurement of my face and anxiety about seeing people, especially at work because I was a trial attorney at the time.

What was the first thing you did when you healed? I got dressed up, took off my glasses, and went out to a nice dinner at a winery with my boyfriend. A couple of months later I also cut off my hair, which I had been hiding behind during my recovery.

Feature #21: Danny & Fleur

Danny Brooks.jpgDanny Brooks

Age: 24

Career: Was a sports staff member for RCCL

When did you cease using topical steroids: Oct 20th 2016

What type did you use: A large variety of tablets and creams over several years

What is your favorite product for comfort? Cetroben (heavy moisturizer)

What is the hardest thing to deal with during this condition? Around the 2 month mark I developed loads of tiny blisters all over my feet which burst when I walked making it incredibly painful to stand and walk until they eventually healed after about a week. (also happened on my hands)

What is the first thing you will do when healed? Reapply for my job as I loved my short time working on cruise ships!


Fleur Rose Blanchelorraine-blanche

Age: 10

Career: n/a

When did you cease using topical steroids: Nov. 13, 2016

What type did you use: Used Betnovate on and off since October 2015 for patches of eczema behind the knees and inside of elbows.

What is your favorite product for comfort? Calendula talc when skin won’t tolerate ointments. When it can, I like Egyptian Magic cream

What is the hardest thing to deal with during this condition? The flares with oozing, (they scare me), the itch is worst part now , also having to give up dancing and pulling out of a show in February. I miss my friends, school and gymnastics.

What is the first thing you will do when healed? Playing my instruments and dance lessons.

In Our Shoes

I have been wanting to do something like this for awhile. It is just an extremely minuscule snapshot of what gets posted in support groups for Eczema, Red Skin Syndrome, or Topical Steroid Withdrawal.

Many professionals, who are meant to care for a patient, fall (very) short when it comes to speaking about adverse affects with steroids. It is egregious the way some patients are treated in a doctor’s office.

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To be laughed at is already demeaning towards someone who is ACTUALLY trying to inform you of a very serious and highly factual condition, but then, as a professional, negate that it is real… this is where the problem lies. We are told to trust in our doctors and that whenever we have a question or concern, they are who we should be going to. BUT, what if our professionals don’t know it all? Red Skin Syndrome is not a joke and certainly isn’t a laughing matter. To be completely written off and spoken down to while the patient was the one who really knew the truth, is astounding. We should not be having to stick up for ourselves at any medical facility. We are going through enough physically and mentally. Most don’t even try to go to doctors anymore because they are tired of being made fun of when they should be getting the care they deserve and need.

Preventable: Protecting Our Largest Organ will help doctors understand the seriousness behind this condition and how they have it in their power to stop this from ever happening again. 

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“They told me I would have to use this for life.” And we are called steroid phobic because…?

How outrageous to tell a patient that THIS is the only way to help them. It states it clearly on the inserts that this SHOULD NOT be used for long periods of time. To tell a patient that the health of their skin depends on this drug forever is not only an ill educated prescription, but a lack understanding of what these are truly capable of doing.

Preventable: Protecting Our Largest Organ will help disseminate correct information about topical steroids and what they are doing not only on the surface of our skin for long periods of time (even 2 weeks!), but what they are doing to the inside of our bodies as well. 

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Here in lies the problem with Western medicine. They have ONE go to when it comes to skin ailments. Most will stick to that one trick. You most certainly have a chance of getting better without steroids. The problem is that they are taught that only one method, which is meant to help mask symptoms, not offer a healing change towards the cause of your symptoms, works. Now, we do have a few other options, but in my opinion, they are still either so new we don’t have any knowledge on the damage it could also be doing and/or we know the drug is dangerous and comes with risks just like steroids do. But I see in so many posts how doctors asks patients ‘why did you bother coming in if you weren’t going to take the steroids?’ We are paying for their services and care and yet are being treated as if we’ve wasted their time. Perhaps we were hoping for more than just ‘here are some steroids’. It just simply is not acceptable anymore for this to continue to happen.

Preventable: Protecting Our Largest Organ will shatter this opinion of topical steroids are the only method to treat eczema. We have so much new technology and medical advancements that we have the power to truly find out what is causing our skin to lose control. We can test for allergies, irritants, gut problems, stress issues, autoimmune disorders… we can’t go on just nonsensically masking our problems with a medication for long periods of time that can actually cause us detrimental harm in the long run. 

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Again, this type of condescension is not helpful nor is it particularly kind.

Other posts I tend to see are heartbreaking, ones crying out in desperation as to why this is happening to them. They are losing their jobs, their relationships, their family… ALL from a preventable condition.

This has got to end. And we can do it. If anyone feels moved by this project and wants to help this type of suffering, please visit the sponsorship link above for a tax deductible contribution, or visit the donation link above if you do not need a tax receipt. 

Donate Here

 

Interview #10: Kline

klineKline (and Loren, Kline’s mother)

Lake Tahoe, California

What doesn’t kill you makes you stronger!

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

Kline started at 4 months old for baby eczema.

2. What was the name of the topical steroid?

Desonide and antibiotic compound.

3. Were you ever prescribed more potent steroids? 

His eczema kept spreading and getting worse What kinds? I think dermasmooth was the highest potency we used.

4. How did you find out about RSS?

Google.

5. What made you feel you had RSS?

He looked just like everyone else…red sleeve and all.

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

We saw Dr. Rapaport at 6 weeks off topical steroids to confirm it. Yes, Dr. Rapaport and some homeopathic and chiropractor.

7. What were your first symptoms?

Full body flares.

8. Is your family supportive? Friends?

Yes.

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

No.

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

The length of the withdrawal and watching your baby suffer and not be able to help them or speed it up.

11. How long have you been in withdrawal? 

Started February 21, 2012, 4.5 years ago. Kline is still in withdrawal but living his life and much, much better…the itch and skin is managable but not perfect.

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

Popsicles, ice packs, lavender oil, EPROMs salt, Shea butter with essential oils, gauze and tape.

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

I had to take a night job because Kline couldn’t go to school.

14. Has this affected your Kline’s education? He had to redo kindergarten

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

Yes, I think we all have PTSD and depression from this terrible life changing ordeal.

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

 

Take each moment by moment ..don’t get your hopes up on a time frame for healing, expect more flares to come. And ask for help! You are beautiful and strong and can do this!!!


Thank you so much, Loren, for taking the time for this interview!

Feature #20: Rachel & Rachel

rachelRachel 

Age: 24

Career: Unemployed due to TSW

When did you cease using topical steroids: November 2015

What type did you use: Triamcinolone and desonide cream daily for over 10 years. Prior to using prescription strength creams I used over the counter hydrocortisone per my doctors’s advice for the majority of my childhood.

What is your favorite product for comfort? Icepacks for inflamed skin and A&D for cracked lips.

What is the hardest thing to deal with during this condition? It’s impossible to choose just one. The endless itching and full-body aches are absolute hell. The loss of confidence, self worth and freedom are close seconds to the physical pain.

What is the first thing you will do when healed? Grow my hair out and swim in the ocean.


Rachel Feerachel-fee

Age: 41

Career: Stay at home Mum

When did you cease using topical steroids: November 22, 2013

What type did you use: Hydrocortisone, betnovate, eumovate, fucibet

What is your favorite product for comfort? Epaderm cream, mainly Vaseline and Aveeno in the bath. Aloe vere gel for hives.

What is the hardest thing to deal with during this condition? For me the pain, bone deep itch, the burning and constant shedding was a nightmare. Not being able to wear clothes, cuddle my kids leave the house took its toll emotionally. The insomnia was also quite depressing as there was no escape from the pain.

What is the first thing you will do when healed? My healing has been gradual but I have enjoyed and cherished everything in my life especially doing the school run again, going on my son’s class school trip, watching their nativities again. Also just being able to get up and out of the house easier without a two hour bath. I’ve not been swimming yet but is on the list of things to do in 2017. Finally, because I was ill when I turned 40, I am organising a charity fund raising party for Itsan on May 20th 2017 to raise money and celebrate life!

Feature #19: Liz & Joana

liz-kingElizabeth King

Age: 40

Career: Unemployed due to TSW and fibromyalgia

When did you cease using topical steroids: June 13 2015

What type did you use: Honestly can’t remember them all.

What is your favorite product for comfort? A bath with sea salt, apple cider vinegar, and Aquafor. I also take LDN which helps.

What is the hardest thing to deal with during this condition? The pain (physical and emotional) and shedding.

What is the first thing you will do when healed? Swim in the ocean!


Joanna Hinzjoanna-hinz

Age: 31

Career: Unemployed due to TSW

When did you cease using topical steroids: May 2015

What type did you use: Fucicort, Elomet, Hydrocortizone, Elidel, Protopic, Elocom

What is your favorite product for comfort? Beeswax/Olive Oil, Lavender essential oil as a sleeping aid, apple cider vinegar

What is the hardest thing to deal with during this condition? 

It is very difficult to narrow down only one part which was the hardest since the condition affects all parts of your life. I will just try to say what I feel are the top three hardest things:

* Being bedridden with your life being on hold and the disconnect from the outside world due to physical non-functionality, chronic pain and anxieties, while everyone around you is chasing their dreams and continues with normal day to day life

* Having no relief or break ever and months and months of sleepless and itchy nights, the suffering which goes with it during those hours of no sleep; while my body needed all the rest to re-gain strength and energy for my next day of trying to cope with responsibilities as a mother and wife, with no family support as I do not live in my home country.

* The way the condition affects a previously healthy mind in the worst ways possible and messes with your perception of the world around you, yourself, your loved ones, bringing the darkest and most negative thoughts you never knew existed before.

What is the first thing you will do when healed? I will love pursuing my career, enjoy the warmth of sun rays on my skin, go to the beach and swim with my son in the sea, go back to my passion of being physically active: working out, dancing and yoga.

Interview #9: Mattiel Brown

mattielMattiel Brown

Atlanta, GA

“All Things Must Pass” – George Harrison

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

When I was about seven years old, I used Desonide cream very sparingly for eczema around my mouth and ears. This was not the period where I became addicted to steroids, though. I was fine as a teenager and only experienced very occasional, small spots of eczema.

2. What was the name of the topical steroid?

Desonide .05% cream (and I also used some Protopic)

3. Were you ever prescribed more potent steroids? 

Yes, but I didn’t use the whole tube and not for very long.
Triamcinolone cream. Used for small spots of eczema around mouth.

4. How did you find out about RSS?

Video of Dr.Rapaport’s interview on youtube.

5. What made you feel you had RSS?

My eczema was spreading to places that I’d never had it before – my neck started breaking out, my back… it was just a sign that something was NOT normal.

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

Diagnosed with eczema, told that it was a very hard disease to treat. I did not have a supportive doctor until I met a “naturalist” doctor named Dr.Maziar Rezvani in Marietta, GA. He helped me through the later stages of my withdrawal after I explained the situation to him. Very supportive doc.

7. What were your first symptoms?

Rashes spreading to unfamiliar areas, very sensitive skin, burning, swelling eyes, yeast infections, and after using Protopic I started to get styes in my eyes and even a cyst in my arm. These were all very strange symptoms to me and a sign that something was not normal.

8. Is your family supportive? Friends?

Yes, my mother and boyfriend were extremely supportive and believed in TSW after I explained the situation thoroughly.

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

No.

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

Physically, it was very difficult. But mentally – I was really a wreck at about one year into my withdrawal and I had to see a counselor. I was in a very, very dark place and couldn’t sleep, hated having to go through the day, and was in a lot of pain – I was so depressed. Worst experience of my life was the mental toll this took on me.

11. How long have you been in withdrawal? 

April 2014 / August 2016. I would say it took 26-28 months for me to say I’m definitely healed.

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

I got a prescription for muscle relaxers to help me sleep.

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

I am employed and I stayed employed during my whole withdrawal. The only time I took off was two weeks last summer to collect myself mentally when it was getting really tough.

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

Yes, I had to see a therapist. It helped me a lot – just to have someone to talk to and to see their outside perspective.

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

This will be one of the hardest things you will ever have to do in life. Period. It will end, but it is a long, difficult process and you will need support from friends and family (and hopefully a doctor). It’s a very hard situation to explain to other people (especially traditional dermatologists), and it’s even hard to understand what your body is going through when you’re suffering from it. And as hard as it is to believe, you will look back on this experience as a tiny fraction of your life. A period of your life that REALLY sucked but it ended. It DOES end.


Thank you for such a terrific interview, Mattiel!

Feature # 18: Alexandra & Brooklyn

alex-lgAlexandra

Age: 32

Career: Unemployed due to TSW (I loved my job working with kids with autism)

When did you cease using topical steroids: July 18, 2014

What type did you use: I used for 30 years. So many I have lost track! All types, continuously upped the dose until I was in the ER constantly!

What is your favorite product for comfort? SALINE! I put it on a 4×4 disposable cloth and sponge bath myself or use it whenever my skin is burning, itching, or I am otherwise worried about infection or just want to clean my fingers without pain. I don’t go anywhere without it. It is my life line. Haven’t used soap in years, only SALINE.

What is the hardest thing to deal with during this condition? Hardest part is not being able to move or skin will crack. Very anxiety provoking. Also doctors upon doctors telling you you’re crazy.

What is the first thing you will do when healed? When I am healed I am going to live out my purpose of raising awareness and helping others heal from all sorts of physical, emotional, spiritual ailments.


Brooklyn Staffordamanda-stafford

Age: 15

Career: Student

When did you cease using topical steroids: August 2015

What type did you use: Many different the last year mostly clotrimazole/betamethasone, Hydrocortisone(2.5%), Triamcinolone(0.1%), Epiceram( non steroid) clocortolone,(0.1%), prednisone 10mg, desonide 0.05%, UV therapy in 2014 for three months.

What is your favorite product for comfort? My favorite product to use during TSW was my moms home made Shea butter and Jojoba oil.

What is the hardest thing to deal with during this condition? The hardest part of TSW for me was going to sleep at night because I felt closed in and anxious.  Also walking around was hard. My body would be in constant pain and I was dry, sticky oozy all at the same time. Sometimes the mental aspect was worse then the physical.

What was the first thing you did when you healed? One of first things my mom did for me when I was better was give me a make over at MAC. It was nice to wear make up.

Feature #17: Mireya & Sara

mireya-pinedaMireya P.

Age: 25

Career: AR Retention Specialist

When did you cease using topical steroids: April 15th 2016

What type did you use: Triamcinolone ointment

What is your favorite product for comfort? I love the Aquaphor ointment, Shikai Tea tree shampoo and conditioner (cured my scalp), and garlic. I used to take baths with Dead Sea salt or Epsom salt, ACV, tea tree shampoo and garlic (gave me so much relief and prevented infections).

What is the hardest thing to deal with during this condition? The hardest part of TSW is how unpredictable it is and not knowing if or when it will be over. Missing time with my loved ones and not being able to sleep!

What is the first thing you will do when healed? Spend the day at the beach with my loved ones and eat my favorite food.


Sara Evanssara-evans

Age: 26

Career: I co-own a Kombucha & Dairy-Free Ice Cream shop with my partner, but haven’t worked since August due to TSW.

When did you cease using topical steroids: August 20 2016

What type did you use: Triamcinolone 0.5%

What is your favorite product for comfort? CBD oil & Hanna Andersson pajamas

What is the hardest thing to deal with during this condition? The hardest part of this journey is the time I have lost. The itch disappears, pain fades, skin heals, but time is something you can never get back.

What is the first thing you will do when healed? The first thing I want to do once I am healed is lay in the sun with my pets.

Interview #8: Stephanie Miller

stephamie-millerStephanie Miller

Brooklyn/Queens, NY

‘At the end of the day, we can endure more than we think we can’–Frida Kahlo 

‘Be easy, take your time. You are coming home to yourself’—Nayyirah Waheed

 

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

I think it started when I was about 6. I was definitely in elementary school at the time. I developed regular eczema when I started a new school, and my parents took me to the dermatologist. That’s when they started to give me ‘rash medicine’ as my family always called it. I never went to bed without putting “medicine” on my skin.

2. What was the name of the topical steroid?

I don’t remember the first potency they gave me, but I do remember they kept prescribing more potent ones as my body became ‘immune’ to the less potent ones. That’s what the doctors always said was happening…*eye roll*. I remember having tubes of all types of steroids all over the house, especially the tiny tester ones. Doctors would always give me handfuls of those.

3. Were you ever prescribed more potent steroids? 

Yes, I used every topical steroid under the sun until they prescribed Clobetasol when I was 14. During the summer before high school, my family moved to a new town, and I remember my skin getting better. Between high school and college, eczema was never an issue. I may have put dabs of steroids on my skin every now and then, but it definitely burned out as doctors said it would. However, during the summers between college, I started working at a summer camp in my old hometown. Within 3 weeks, my eczema came back. But then, when I would fly back to Massachusetts where I went to school, the eczema would go away. By my fourth summer at the summer camp, my eczema returned ferociously. I went to the dermatologist where they immediately gave me Clobetasol and Protopic. They said use the Protopic regularly, and the Clobetasol occasionally. Well, the Protopic didn’t work…so I used Clobetasol…and boy did that work wonders. I am pretty positive that’s when my addiction started. After that summer, I moved to NYC. It was September 2011. My skin was still a major struggle, but I didn’t let it stop me. I had my tube of Clobetasol just in case. For the record, I used it as prescribed….”twice a day (morning and night) for 2 weeks”. Usually I would only need it for a week, then my skin would clear up! But, as the story goes, when that week or 2 weeks of using the cream ended, my “eczema” would come back with a vengeance within 2 to 4 weeks. I thought I was allergic to the city, but I loved it too much to leave. From 2011 to the beginning of 2015, that was my struggle. My right palm suffered the most, but I would also get small patches on my arms, my torso, and legs. I knew I shouldn’t be using steroids long term, so I tried to avoid it. I would only use it when my skin became unbearable. The relief was always worth it even if it only lasted a month, 2 weeks, or less.

4. How did you find out about RSS?

Back in January 2015, I used topical steroids for the last time, and my “eczema” came back within a week and started to spread to places I had never seen it before… and it was spreading fast—the backs of my hands, big patches on my legs and arms, my left palm. That was a huge wake up call. I decided to take control of my “eczema”, and went on the autoimmune protocol diet for 6 weeks. I was promised that I would see great healing after a month, but my skin only got worse and worse. As I was doing research on ways to heal eczema naturally, I kept coming across ITSAN. When I initially learned about it, I was in denial. I was convinced that if I kept up with my diet, I would heal. Well that didn’t work. I stayed on a pretty strict diet for 5 months, and my skin only got worse.

5. What made you feel you had RSS?

As I continued my research, ITSAN kept popping up on Google. Once I actually looked at the pictures closely, I knew instantly that my skin looked EXACTLY the same. I also remember looking at Briana’s blog, and her pictures looked like my skin!  It was surreal. I thought I was looking at my own hands, my own legs, my own arms. Then I distinctly remember watching the animated videos that ITSAN made…that story was my story….I stopped breathing and burst into tears. I felt a huge weight lift off of my shoulders. I remember watching Dr. Rapaport’s interview immediately after and felt a huge sense of relief. I WAS GOING TO BE ECZEMA FREE. The journey would be hard, but I WOULD HEAL.

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

Nope and nope. I diagnosed myself.

7. What were your first symptoms?

Spreading red rashes that began to cover my hands…and I mean my whole hands. Also, within 3-4 weeks, I had the infamous red sleeves and pant legs.

8. Is your family supportive? Friends?

I don’t live near my parents, so they didn’t have any control. They were emotionally supportive from afar, but I do think they would have questioned my choice if they actually witnessed what I was going through. Now that I have made a ton of progress, they are very supportive of my decision. My friends were supportive, but I kept very quiet about it for the first 4 months. I didn’t start owning the condition until month 5 or 6. Even while I was suffering during the worst of it, I was so disconnected from my body, that I wasn’t feeling anything. I covered everything up and numbed myself as I continued with my life9. Have you ever been to a hospital for this?

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

Oh yes. Back in May of this year, 2016, I was 15 months or so in. I was still suffering terribly from my anniversary flare. It had spread full body, which was a lot worse than my initial flare. At the very end of April, I suddenly felt a strong pain on my right side…right under my armpit. Within, 2 hours I got a fever of probably 102. I went home, tried to sleep it off for the next two days, but my fever wasn’t breaking and the pain kept spreading. On May 1st, I went to urgent care. They took my vitals and said I had to be rushed to the hospital. I was going into septic shock. They took a ton of blood, hooked me up to antibiotics and fluids. I don’t remember the chronology, but essentially within a day or two, they found strep and staph in my blood. My lungs were filling up with fluid, and my right breast was infected with mastitis. They also gave me a hydrocortisone IV, which I was very hesitant at first…but at that point, I just wanted them to save my life. My skin cleared up for a week! Woohoo! It looked strong and beautiful. Looking back, I’m grateful that I agreed to it because the nurses were taking my blood multiple times a day. That would have been even more of a nightmare if my skin was still flaming red. However, after the first week of clear skin, the redness and rashes started to creep up on me and grow, which proves that it was the steroids that caused all of my problems. Anyways, I was in the hospital for a total of 17 days. I had reoccurring fevers for most of the two weeks because my body was still trying to fight the infection. I’ve made a full recovery though!!

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

The rebound flare definitely. By January of 2016, I thought in my deepest heart that my skin was only going to get better. By February, my anniversary flare started to spread. By April, I was in an almost full body flare. I didn’t struggle with that at all during my initial one. The days when you wake up and know it’s only getting worse are the hardest. You never know when you’ve reached the abyss before you turn a corner and start to heal. You just have to breathe, suck it up, and do whatever you can to stay comfortable.

11. How long have you been in withdrawal? 

I’ve been at it for almost 21 months. Unfortunately, now I am struggling with the fact that since I got the hydrocortisone IV in the hospital, I’m technically not 21 months into my withdrawal. I’m almost 6 months steroid free. But, I’ve been suffering for 21. I started my initial withdrawal unknowingly in mid January of 2015, and I’m doing really well right now.

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

Anything to make me laugh. Last year, I re-watched all 10 seasons of Friends. The Office is also another comfort show.  I also realized how important my close friends are to me, and I recognized that they are the ones that make me feel human. That was also a major psychological struggle during this journey. Since you’re physical self is such a mess, you feel inhuman. Your body doesn’t feel like yours. For the past 2 years, my limbs have felt like these other disgusting creatures that I have to nurture. They’re not mine….they’re not mine…

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

No, fortunately this hasn’t affected my job status, except when I was in the hospital. I’m a nanny, and the family was very understanding and allowed me to care for their child however it suited my needs. Fortunately, my face was never severely affected, so I was able to hide my condition under long sleeves and gloves.

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

No…but I need to. I’ve done this completely alone. No caregivers. I’ve had friends to talk to and cry to…but I’ve been able to pretend that I’m fine. I talk about it as if it hasn’t affected me…but it has…and it’s been really fucking hard to face it.

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

It’s a gift. Fucking trust me. Your quality of life will transform. It will develop on its own time. Healing is not linear. It’s not it’s not its not. This, my love, will only make you stronger. YOU. ARE. A. WARRIOR.

Just be. Listen to your body. Don’t beat yourself up about anything. There’s no right way to heal. You have to trust your gut and take action on your own time. Everyone’s journey is drastically different, and we can’t compare. The only things that remain true amongst all of us are…and I mean all of us…the story, the symptoms, and the moment you realize you have RSS are all the same. And it’s one of the most empowering discoveries you’ll ever experience.

Oh and take pictures, especially at your worst. You won’t regret it. You’ll forget how much pain you were in, and the pictures are a reminder that you are a fucking warrior. Don’t ever underestimate that.

Last, but not least….

You are loved.


You are certainly loved, Stephanie! Thank you for a lovely interview!

Feature #16: Paula & Jane

paula-pPaula Perris

Age: 30

Career: Mother, Wife, Health Care Assistant up until TSW. I was in collage studying social care.

When did you cease using topical steroids: 15th June 2016

What type did you use:  Methotrexate, UV light theraphy (hand PUVA) prednisolone, Dermovate, Bethnovate, immuovate, fucibet, protopic, Elcon…

What is your favorite product for comfort? I always go back to silcock’s base but also use coconut oil, dipolbase, and cotton gloves.

What is the hardest thing to deal with during this condition? Not been able to touch my children without being in pain and the long sleeplessness nights.

What is the first thing you will do when healed? Take my children to the beach, hold their hands, LIVE and of course raise awareness!!


Jane Cavallajane-cavalla

Age: 43

Career: Art educator

When did you cease using topical steroids: March 2013

What type did you use: Mostly Betnovate RD, but have had orals and stronger ointments throughout my life.  Injections as a baby!

What is your favorite product for comfort? My own homemade shea butter and jojoba butter balm

What is the hardest thing to deal with during this condition? Itching, itching deep bone itching! Severe dryness/elephant skin, lack of sleep, no life outside of TSW, impact on family  and depression

What is the first thing you will do when healed? I am starting to have days of healing now, on good days – I can wear black!  Wear make-up, go out with friends and enjoy my life again, be more present as a mother, and consider the possibility of meeting someone.