317 days of healing

Where would I be if I was still on topical steroids?

It’s a scary thought and an uneasy feeling because I know my dependency ; I couldn’t live w/out it! My flares were spreading from my upper lip, eyelids, all around my neck and to my cheeks and forehead! Allergies were going hay wire and it seemed like anything and everything I was allergic to would cause a flare. The insecurity was wearing on me that I couldn’t eat certain foods or be outdoors in the sun too long because of a possible flare and the sudden change in temperature would bring my skin to act up. I felt horrible inside thinking that people would judge me for my bad skin.

5 years ago an allergist did tests and I was pretty much allergic to everything on the sheet, especially outdoor allergens, cats, dogs, strawberries and even bananas. Family teased that I should just live in a bubble! I did everything to avoid flares-hypoallergenic detergent, hypo-bed sheets covers to avoid exposure to dust mites, hypo-hepa vacuum cleaner, air purifier w/hepa filters throughout the house and of course Hypoallergenic makeup. I would still get flares and so the usage of steroids continued and never did I link the worsening eczema to addiction of TS.

Let’s fast forward a bit and still flaring, any possible triggers would cause a flare and more frequent and no bottom line allergen to why the flares kept reappearing every week. Years later I visit another allergist and results displayed noting close to my first testing 5 years ago and I actually got better. I was astonished! They couldn’t figure out why I was flaring either, but they didn’t recommend immunotherapy, but to take antihistamine if I were to be around dogs and cats. I was soooo confused! How did my allergies get better or how was I not as allergic from 5 years ago, but still flaring? Possible link to a decrease in TS usage? Possibility that the immunotherapy somewhat helped me for 6 months? I’m still puzzled..

Let’s get to the good stuff. The pictures that you’re waiting to see of someone’s TS usage of 10-15 years. 11 months of TSW…Let’s just say month 10 and 11, living the best life ever! I hardly had any allergy symptoms throughout the spring season and the cherry blossoms had little effect on me while everyone else was suffering badly! I have pretty much exposed myself to many things to see how I’d react; leaving the windows open at night, playing in a softball league in a grassy field-no flares! I haven’t had to take any antihistamine for the past 5 months and the itchiness pretty much only appears when I’m 20 minutes into exercising and I get hives around the places I’ve flared the most through TSW. And as my body cools down they fade away. It’s a bit of a nuisance, but I’ll take this any day from the intense itchiness and flaring. I trust my body that this too shall pass as my sweat glands learn to sweat again.

I’m in awe of all the months that have passed and I think back at those times where I was shedding and peeling like crazy! The insane amount of skin that was vacuumed up from a days worth was shocking! Those days are behind me now and I can’t express how much your skin changes and how truly remarkable you will feel! The lichenification is fading slowly and Im able to wear some skirts and short sleeves. I really thought from my usage I would be looking at a couple years at least, but I believe I was one of those who had immediate symptoms of TSW burning red sleeves, nerve pain throughout my body. There was no secret diet, no moisturizer withdrawal nor special creams that has brought me to this point….it was simply “patience”, “prayer” and “family love” that got me through TSW.

What allergist said I was allergic to dogs, well we got a toy poodle puppy and I’m in Love! No allergic reactions-no flares=bliss! I’m getting more involved in the public and had the great pleasure of hosting a couple bands around Misawa, Japan area and got to be their tour guide and I’ve embraced being able to expose my skin w/out embarrassment and shame!

Month 10-11 has been a blast and I encourage you to keep moving forward! It gets better and better! Here are some pics of my face in full daylight and my new baby puppy that I’m not allergic to! Keep on fighting through TSW, it will be something of the past and a story to share of your accomplishments!

I also broke out over a month ago because I was out in the sun sweating and I guess it was a flare, but it all subsided later that evening and it was gone the next day! I basically used baby powder to cool the skin down and got out of the sun! All is well! 🙂

Cherry Blossoms in Tokyo

Embracing the beauty of Tokyo and feeling so alive again and well to travel 8 hours away from home!

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Round 8 of TSW

I can’t believe its been 8 months off of Topical steroids.  I can actually say, “that I have not used any steroids on my body what so ever.”  Not even a little 1% of hydrocortisone, NOTHING!  For those who don’t deem that strikingly shocking, it’s a huge accomplishment for someone who was addicted to topical steroids and thought I needed it to battle little eczema dry itchy skin flares-NOPE!  The feeling is so freeing, that I no longer depend on this devil of a drug.  Each month of healing only gets better and better.  For some it may seem like their skin is not improving, but just let time take its course.  You will hear this over and over that everybody is different when it comes to their withdrawal symptoms and some heal faster or slower, but all and all you are taking the right path to give up this awful drug and the skin will heal in time.

At 8 months, I 

*no longer need advil to cope with pain. I don’t have anymore nerve pains, nor red burning skin

*no longer depend on sleep aids to get through the night. I sleep 7 hours straight and on occasion I get up at 2-3ish to scratch a little, but back to a sound sleep is finally back on track

*I no longer have to carry a tub of vaseline everywhere, and I can go with moisturising once in the morning and at night.

*eyebrows and hair are growing back everywhere

*able to work out, but I still get little itchy when I start sweating, especially around my waist, neck and back of shoulders.  But it starts to subside when I cold down. 

*I can drink coffee w/o having facial redness

*skin is no longer shedding like crazy anymore, I just have little dry areas here and there.

I no longer have to sweep or vacuum piles of skin up every two days or so and freak out over all the skin that has fallen off.
*menstruation cycles have completely changed and hormones seem better.

By far, at 8 months I’ve made so much progress in healing. When at one point I felt that things were never going to end. Now here I am at 240 some days later and it has gotten so much better! I just got back from a wonderful 4 day trip to Tokyo and Tokyo Disney and the sun was shining all day and I didn’t even have a problem with my facial skin at all!  No flares, no redness! I was so pleased and felt so blessed to see the cherry blossoms still in bloom, because living in northern Japan it is still slightly cold and chances of snowfall here and there are very likely, so the cherry blossoms are taking awhile to blossom up here.

I’m still having mini flares, and I correlate it to being close to my Menses every month.  These flares consist of raised red rashes on all my most stubborn areas that seem to bother me when I sweat. I probably mentioned this before, but I never really had eczema in these areas, but maybe a couple times in the 10-12 years of steroid use. My problem areas on steroids where my upper lip and eyelid area and back of my neck. And my face never flares at all! So, for these areas on my body to flare is rather annoying, but I know I must be patient and keep moving forward!

If you’re reading this and you are in the beginning stages of TSW, you made the right choice! And for those that are trekking away month to month, you definitely are making progress and healing even through the pain and shedding! Your body is amazing and you will heal in time!