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.

#1

yes

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. 

yes2

“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. 

yes3

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. 

yes4

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

 

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 # 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 #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