Feature #33: Mel & Heather

MEL LYNCHMel Lynch

Age: 37

Career: Teacher

When did you cease using topical steroids: October 2013

What type did you use: I used pretty much every sort for over 30 years. Including eumovate, betnovate, fucibet, dermavate, betnovate scalp treatment and lots of courses of oral steroids too.

What was your favorite product for comfort? When my skin was at its worst, I would spend most of my life in the bath. I used Dead Sea salts in my bath and always moisturized. I also used zinc cream to ease redness and swelling. I also found comfort using bandages especially if my skin was oozing.

What was the hardest thing to deal with during this condition? At times the pain was unbearable and I hated being unable to move and being stuck in my bed or the bath all day. But the very worst thing was not being able to hold or cuddle my daughters. My youngest was a month old when I started tsw so I spent the first 2 years of her life being ill on and off. Very depressing but she doesn’t remember! My eldest was very good when I was ill. She is 8 now and doesn’t like to talk about it or see pics of me when I was poorly. It definitely had an impact on her.

What is the first thing you will do when healed? I consider myself close to being healed, the thing we did first was go on a family holiday. I do enjoy being able to take my girls swimming … that was something I couldn’t even do before tsw as my skin would never be clear. Now it’s great to be able to show off my legs!


Heather LeeHeather Lee

Age: 26

Career: Currently in my last year of nursing school

When did you cease using topical steroids: October 2015

What type did you use: Desonide, hydrocortisone, triamcinolone, as well as dexamethasone injections and tons of oral prednisone .

What is your favorite product for comfort? Aquaphor and Zinc Paste

What is the hardest thing to deal with during this condition? I started nursing school at the same time I started TSW, it’s hard trying to take care of patients and having them ask what’s wrong with you. At times I was in the hospital taking care of others when I felt I should be in there myself.

What is the first thing you will do when healed? Travel! I already travel a lot but it’s hard to fully enjoy it with TSW. My dream is to go to Iceland and not be worried about my skin cracking open

Feature #32: Kirk

KIRKKirk Robertson

Age: 19

Career: Self employed Personal Trainer (currently on hiatus)

When did you cease using topical steroids: 29th of December 2016

What type did you use: Eumovate

What is your favorite product for comfort? Dead sea salts

What is the hardest thing to deal with during this condition? Not being able to build my business or build on my plan of becoming a professional natural bodybuilder

What is the first thing you will do when healed? Train with my girlfriend and go out for a meal with my family.  Followed by an overdue night out!

Feature #31: Magda & Elspeth

Magda RoszMagda Lima

Age: 23

Career: Property Manager

When did you cease using topical steroids: April 2016

What type did you use: I’ve only used steroids topically: Hydrocortisone- eyelids, neck , Betamethasone valerate and many more but I can’t remember them all. Immunosuppressants : elidel, protopic

What is your favorite product for comfort? Dead sea salt + Himalayan salt baths, castor oil, calamine lotion- when oozing, tubular bandages

What is the hardest thing to deal with during this condition? The hardest part for me was first 9 months when I was red from head to toe, horrendously itchy and I could not sleep! I am now 12 months in and still having good and bad days, the worst areas now are face, neck and hands.

What is the first thing you will do when healed? Put make up on! Enjoy my life again!


Elspeth JellisonElspeth

Age: 35

Career: Speech Language Pathology Grad Student (Finally graduating May 2017 – Woo-hoo!)

When did you cease using topical steroids: July 7, 2016

What type did you use: OTC hydrocortisone, Dermasmoothe, Clobetasol .05%. Also used Elidel and had 3 or 4 short bursts of oral steroids. This was all during a year and a half period.

What is your favorite product for comfort? Safe Soda (Pharmaceutical grade sodium bicarbonate). I started using this around 8 months TSW and it really changed my life. Funny Youtube videos also saved my sanity during my toughest periods of TSW.

What was the hardest thing to deal with during this condition? The hardest part of TSW was the feeling that I wasn’t even me anymore. I was in so much pain and so sad all the time that living felt like a chore. I also hated how I felt I couldn’t be there for my husband and son the way I wanted to be.

What is the first thing you will do when healed? My skin has already improved enough to accomplish my first goal which is to enjoy a vacation with my family. This weekend I’m going to go get a dog, which I’ve wanted to do for ages but haven’t felt well enough to for a long time. I still have some left to go on my healing but I’m grateful to be able to enjoy life again.

 

Feature #30: Meghan & Kristen

Meghan PicklesMeaghan Pickles

Age: 13

Career: Student

When did you cease using topical steroids: Feb 2016

What type did you use: Hydrocortisone 1%, Betamethasone, Avantan fatty ointment

What is your favorite product for comfort?  Epiderm, Tubifast Wet Wraps, safe soda bicarb of the bath and the body, Queen Bee Balm (Bee Skin Recovery)

What is the hardest thing to deal with during this condition? Enduring the worst pain of my life, oozing skin, shivering and feeling freezing cold even in hot temperatures, the skin snowing and rejuvenating every three days to raw skin, the intense burning, constant dilated capillaries that leave the familiar red mask of TSW, the lack of support from specialists and then being threatened we would be reported to child services for refusing steroids! Losing most of my friends.

What was the first thing you did when healed? I went to a BBQ for 2 hours, I was free, I was out of the house without wet wraps, I went shopping and tried on new clothes instead of staring on in pain watching my friends do what I couldn’t do. I lost nearly a year out of school, but now I’m healed and it’s all over.


Kristen BKristen B

Age: 21

Career: ECE/ Nanny

When did you cease using topical steroids: Feb 19th, 2017

What type did you use: Hydrocortisone, Ellidel, Protopic

What is your favorite product for comfort?  Ice Packs, Aquaphor, burning my arms when itchy

What is the hardest thing to deal with during this condition? Having to re-home some of my pets, the draining of my self-esteem, having to go to bed with multiple ice packs and a fan since I can’t fall asleep otherwise, and the financial hardship having to spend tons on remedies.

What is the first thing you will do when healed? I plan on working out, eating whatever I want and not having to worry about a flare, go out with my friends, play with all my animals again that are making me flare up, and just enjoy life in general again.

Feature #29: Michelle & Laura

Miche;le Li.PNGMichelle Li 

Age: 25

Career: Data Scientist

When did you cease using topical steroids: July 2015

What type did you use: Elocon in childhood, other hydrocortisone creams of various strengths for eczema around eyelids and lips, and immunosuppressants (elidel, protopic) in my teens.

What is your favorite product for comfort? A balm I make using shea butter, jojoba oil, cocoa butter, peppermint essential oil and eucalyptus essential oil.  The essential oils are very cooling and help relieve the itch…sometimes.

What is the hardest thing to deal with during this condition? The hardest part about TSW is the roller coaster of flare-ups. Sometimes you think you’ve beat it, but another flare-up will come, in a different part of your body. It’s really hard to keep a positive attitude when that happens.

What is the first thing you will do when healed? I’m doing everything I want to be doing! I’ve made a big effort to keep chugging along, advancing in my career, traveling, and doing as much as I can without causing my body stress despite my flare-ups… But maybe, going camping and not having to worry about infections or having a good nights rest would be the first thing I do once I’m healed.


Laura MathiesonLaura Math.png

Age: 29

Career: Unemployed due to TSW and anxiety

When did you cease using topical steroids: 28th May 2014

What type did you use: I only ever used steroids topically, these include Hydrocortisone, Betnovate, Fucidin H, Fucibet and Elocon. There are many more but I can’t remember them all. Other treatments I have tried include Traditional Chinese Medicine, hypnotherapy, UVB light treatment, homeopathy. I was still using steroids when trying these other therapies in the past.

What is your favorite product for comfort? At the start of withdrawal i used tubs and tubs of 50/50 ointment. Later I found Dead Sea Salt baths very soothing. I’d use zinc infused bandages when oozing. Later into TWS (about the 2 year mark) I started using Elaj, and I still use it to this day.

What is the hardest thing to deal with during this condition? The hardest part for me is the anxiety and depression; not wanting to be seen by anyone and shutting myself away from the world.

What is the first thing you will do when healed? The first thing I want to do when I’m healed from TSW is hold down a full time job long enough to save enough money to go travelling for a few months.

Feature #28: Kayla & Kleidy

Kayla.pngKayla Clarke 

Age: 26

Career: 3rd year resident of Naturopathic Medicine

When did you cease using topical steroids: Dec 19 2016

What type did you use: Betamethasone valerate 0.1% on and off for 18ish years

What is your favorite product for comfort? A big fuzzy blanket, a hot cup of tea, and cannabis salve

What is the hardest thing to deal with during this condition? Acceptance. For a long time I couldn’t accept what was happening to me. I thought (being in Naturopathic medicine), I would be able to find a quick fix. Not the case. I can support my body where it needs help, but in the end, I have to let it do its thing.

What is the first thing you will do when healed? Hike up a mountain and get all kinds of sweaty.


Kleidy Sevillakleidy sevilla

Age: 10

Career: Grade 4 student

When did you cease using topical steroids: June 2016

What type did you use: Prednisone, elidel, hydrocortisone in different strengths

What is your favorite product for comfort? Only product I can handle is vaseline, love icecream to keep me cold because I’m hot all the time. Also love to hear music to calm me down.

What is the hardest thing to deal with during this condition? Not being able to have a good night sleep. I’m always tired.

What is the first thing you will do when healed? I am going to wear a bathing suit and go to the swimming pool.

Feature #27: Donna & Whitnee

Donna MDonna Marinkovich

Age: 42

Career: Mum and recently back to my old life (especially since skin is so much better) but part time, art dept for film/tv in NZ

When did you cease using topical steroids: December 15th 2015, as soon as I had read the ITSAN site.

What type did you use: I wish I’d paid more attention but mixed in there was hydrocortisone, elidel, elocon sporadically on and more so off for over 30 odd years.

What is your favorite product for comfort? Ice packs particularly at night for the itch. I didn’t use any products during the early months (1-6) as did moisturizer withdrawal, but since my skin took a turn for the better I have been using Avene products, namely the spring water spray and Xera calm moisturizer.

What is the hardest thing to deal with during this condition? Physically – the insane itch can drive you pretty crazy, the trance of the itch-scratch cycle is all consuming. The skin flaking. Just the general pain, discomfort and constant awareness of how your skin feels so foreign and sore and alien. Mentally – not knowing what’s really going on, the doubt about whether you’ll ever get better (you do though!) As the healing is not linear, eventually one day you may have calm skin, but the next it feels like you have regressed again with no rhyme or reason, so you have to dig deep to accept and just surrender to all this on some level. I am still trying to practice this 15 months in. Trust is a big one, that your body knows what it needs to do to heal. I am humbled by those whose journeys with this are really tough.

What is the first thing you will do when healed? I couldn’t wait to hold my baby against my bare skin and not have it make me uncomfortable or anxious or itchy. The healing was so slow to unfold, but I felt elated when I saw glimmers of my ‘old skin’ again, and so grateful for my body and what its been through. It was awesome to not feel super self conscious of going out in public and showing my face. To feel the anxiety ease off a bit. And every time I settle from a flare, even though it’s only for a day or so, I am still grateful my body can get there and hopefully will one day stay there.


Whitnee SpringfieldWHITNEE

Age: 25

Career: Creative Designer – had to leave work due to TSW

When did you cease using topical steroids: 01.20.2017

What type did you use: Hydrocortisone, escalating to daily use of Betamethasone and Elecon. Also had 3 month course of oral steroids and Tacrolimus

What is your favorite product for comfort? Avene Cicalfate Restorative Skin Cream has significantly improved my face and neck which were super tight, dry and flakey with slight oozing

What is the hardest thing to deal with during this condition? Due to debilitation I have had to move across the country to live with my mum to care for me. This means I don’t see my fiancé often and we have had to postpone our wedding. I miss him terribly.

What is the first thing you will do when healed? Marry the love of my life and return to my passion as a live performer (singer songwriter).