My body is my temple and I will give it love...

I have stumbled onto something life challenging not only for my health but for my mental and emotional well being. For years, I had no idea my body was dependent on topical steroid creams and ever since I was a kid with mild eczema, I have been slathering it on my face and parts of my body. That is what all my doctors told my mom to do. So we listened. And when I was 18 going to dermatology appointments, they told me the same as well. Little did we know that you are definitely not supposed to use steroid creams on the same area for more than two weeks. TWO WEEKS. Otherwise your body can become dependent on it and other side effects like adrenal suppression, atrophy, and thinning of the skin can occur. Doctors never told me this. I take that back. They told me when I kept expressing concern of steroid use that the only side effect would be thinning of the skin. But never did they tell me how detrimental it could be if my body starts needing it. 

This is something I have been battling for a big chunk of my life. My eczema got worse after I hit puberty.  I was always ashamed of this condition and never wanted anyone to know. When I was in middle school to high school, it definitely turned me inward and I knew it was something I needed to face one day. After years and years of struggling just to keep my eczema at bay, I realize now I've been using it cumulatively for over 10 years! I did have some good years with great skin! From the years 2006-2013,  I no longer wanted to use steroids because I figured that couldn't be good for my skin. So I stopped using it and soon my skin was glowing. I practiced bikram and vinyasa yoga for about 7 years, I was eating 80% fruits, veggies, meats, nuts, grains, drinking nothing but water, ate more organic than processed foods, and stopped eating fast food all together. Of course I do love food, anyone that knows me knows ya girl can EAT (haha I don't believe in deprivation). I ate good and sometimes I ate bad but nonetheless for those 7 years, I never felt happier with my skin!! 

In July of 2013, I left California and moved to the Philadelphia area for a new experience and simply for love :) I was sad and knew I'd miss my amazing family and friends but this was what I wanted! The first few months were a blast. No skin issues. But then my eczema came back after all these years and with a vengeance. I started getting red marks down my neck (was not rashy and didn't look like normal eczema), it appeared on my arms and I had weekly-- red, dry, flaky skin on my face. I believe certain environmental factors triggered my body to work extra hard and since I was rarely using steroid creams, My body didn't sufficiently have enough to keep my skin at bay. Steroid creams basically suppress your blood vessels, which also affect your adrenal glands. It produces the cortisol hormone that your body is supposed to naturally produce. So if cumulatively I have about 10+ years of steroids in my system, you bet my body started withdrawing in a new environment that it was not familiar with!

For months my fiance and I tried everything. Hypoallergenic materials. Filters, humidifiers, lotions, creams, blood tests, seen allergists... nothing really helped, nothing was wrong with my health. My tests were all good and that made it so perplexing. When I realized I had an tube of desonide cream (topical steroid) , I started using it every couple days for about a month. The rashes would get better quickly but returned after a couple days.

That is when my boyfriend found ITSAN.org (International Topical Steroid Awareness Network) and my heart sunk. I realized I had to stop using steroids. Plain and simple. Easy enough. Okay.... no.... faaaaar from an easy withdrawal. Thousands of people are apart of an online community called ITSAN and are all in this hellish journey but at different stages and severities. I believe that even if I am going through all the terrible symptoms, ITSAN saved my life. Because once I flush all the steroids out of my body, once my body learns to rework itself on its own, I believe I will be a much healthier person than I was on topical steroids. And here's hoping my eczema will be gone for good.


Symptoms of TSW (topical steroid withdrawal) collected by Stephanie of Home Apothecary: 

* Intense redness that can cover the entire body at times
* Red “sleeves” on limbs
* Blistering and cracking of skin
* Skin that radiates heat, blisters from heat; ice/cold water therapy needed
* Raw skin that is tremendously painful
* Skin that tears easily when scratched, thin skin
* Skin burns in water during certain stages
* Extreme shedding of skin
* Continual intense itching throughout most every stage – described as “to the bone”
* Edema (swelling of body parts) e.g. legs, hands, feet, ankles
* Stinging sensation, nerve pain
* Sticky/watery ooze from pores with a metallic/odd smell:
o Serous Exudate = a fluid with a high content of protein and cellular debris which has escaped from blood vessels and has been deposited in tissues or on tissue surfaces, usually as a result of inflammation.
* Change in body odor
* Skin that turns an odd “purple” color during certain stages
* Skin that thickens / wrinkles during certain stages, “elephant skin”
* Inability to regulate body temperature
* Inability to sweat, then in later stages sweating profusely
* Chills, shivering
* Alopecia (hair loss) on all parts of the body – e.g. head, eyebrows
* Swollen eyes / dry eyes / itchy eyes
* Eye sight changes / blurry vision / steroid induced cataracts
* Swollen lymph nodes – most common in groin and head, but can be all over body
* Joint pain
* Insomnia
* Loss of appetite / weight loss
* Diarrhea / constipation / nausea
* Adrenal fatigue
* Loss of energy / exhaustion
* Depression / anxiety / irritability / moodiness / panic attacks
* Mental “fog” / inability to concentrate
* Recurrent skin infections; impetigo / staph / herpeticum
* Skin bumps, pustules, lesions, blisters
* Skin discoloration
* Changing nail color, peeling nails and nail ridges; also nail bed infections
* Low libido
* Change in menses/menstrual cycle
* Steroid induced warts
* False allergies / high IgE’s
* Initial blood test results that lead to suspected serious conditions/syndromes/diagnoses that are ruled out following further tests/examinations

I am 6 months into this withdrawal and I've probably experienced 90% of the aforementioned symptoms. On that sh**** note, here are some images during my detox..

 Month 1 chest was burning, itchy, weepy, and nerve pains present

My TSW emergency kit: 

• Stephanie's Home-apothecary Lemongrass balm (Her incredible son is going through tsw) and she makes helpful and soothing balms for tsw folks. The Home Apothecary  (note I am currently not putting moisturizer on 90% of my body. I only use the moisturizers for my arm joints and neck/chest area)
• Good ol vaseline- I know this is controversial but sometimes it is all that sits comfortably on my skin. Plus it creates a barrier
• Bordeaux's Butt Paste- I know diaper rash cream but it has zinc! So good for healing cuts and wounds
• Tea tree oil mixed with water- helps infections
• ice packs- I have about 5 in my freezer ready to go. I needed it all the time the first 1-4 months 
• Dead Sea Salt- great calming of itchy or burning skin. I loved baths in the beginning. Add a bit of lavender or coconut oil for more calming effect. 
• bandaids
• Masking tape- believe it or not I found that taping my nails with a few layers stops me from breaking my skin while asleep at night. It's tedious but worth it. Some use fabric tape. 
• Ibuprofen 600 mg (only used it for first 2 months then stopped) for pain
• 2 baby aspirin (81mg) for pain
• hydroxyzine (atarax 25 mg) antihistamine, sleep aid, anti-anxiety
• Curcuramin (turmeric spice in capsule- great natural anti-inflammatory) but purposely didn't use it for too long
• Meditation- having a mantra also helps 

Vitamins/Supplements 

• vitamin B12
• vitamin D3
• Omega-3 fish oil
• vitamin C
• L-Carnitine
• probiotics

 
I want to make this so very clear. This health condition is not your ordinary eczema case where the rashes are just itchy and uncomfortable. Steroid-induced eczema (particularly when detoxing from it) is HELL. In all my life, I have never gone through anything like this before. Simple atopic eczema?! That's nothing compared to topical steroid withdrawal. This is REAL. And all I can do is take it one day at a time. Moment to moment... waiting for a break.