A major setback

As I’ve made so much progress and months of wonderful skin.  It seems the winter weather has sucked up all the moisture from my face that it possibly had. Not only has the winter wrecked and brought out more of my wonderful dry wrinkly facial skin of where TSW has struck me the most, I had a terrible fall.  Down the stairs an evening out with entertaining some NFL players for work. In Japan, the staircases are not standard nor up to code like back home in the (USA) and if you add a couple of wonderful mixed drinks, wanting some fresh air, and a boot getting stuck somewhere along the way….the only way down is a full flight of stairs……..and yes, you guessed it… 7 stitches to the left side of my eyebrow down,  wiped me out. I took my very first ambulance ride and ER visit with my face gushing with blood. My hubby was out carving ice sculptures in Sapporo, Japan, which is another island, so it was up to my amazing kids and awesome friends to get me on my feet again.  Yaay me! Not really yaay, but more like “OUCH!”  I’m actually really lucky, blessed, fortunate that I didn’t lose consciousness nor black out and I was able to get up to walk and see the next day. My brain is still intact and don’t ask me any algebraic questions because that side of the brain wasn’t working for me anyways! All jokes aside it has been a setback in my skin as the healing areas again needed healing and dryness needed moisture back and stitches to be healed. Just when I was getting into the swing of things. Nope, sadly I was mistaken and so was my poor face.  It had put a dent in me physically, but mentally it has actually made me even more stronger, because these situations in life are brought to you for a reason; I prefer to think this way.  I’m giving myself no choice, but to keep pushing through this bullshit.

Here are some pictures to entertain you. These were taken 3 months ago as I’m so delayed in posting, but all is healing very slowly.  Thanks for visiting Sayonara Steroids blog, your company is appreciated.

stitches

Advertisements

Picture from Months 9-12

PicCollage

18 Months

Sorry, this is an old post, but I’m finally playing catch up. Please be advised that anything you read on my posts are what have worked for me and may not work for the next person. Happy reading and happy healing.

How time flies by…..I know it may not seem like it if you are going through the thick of it right now.  Just remind yourself that you are healing and let time do the curing. Once the body begins to heal from one thing it moves on to make another stronger and you become more accustomed to knowing how to deal with the body changes, withdrawing and the right remedy to soothe it, other than using Topical Steroids as a temporary fix.

Im 18 months in TSW and you’re probably wondering if I’m still experiencing any flares or withdrawal symptoms?  And the answer is “YES!” I wish i didn’t, assuming the length of time I was on steroids and from Dr. Fukaya’s research; a leading doctor in Japan that specialised in topical steroid withdrawal, “it would take 30% of the time I was on steroids to fully heal.” So I’d say for me, 3 years is what I’m looking at to where I will hopefully not have TSW symptoms any longer.

How are my TSW symptoms at 18 months?

In the past 3 months, my most heavily used areas of where I used TS were my neck, upper lip and under my eye brow area is where I experienced my flares, and usually I’d doused these areas the moment I flared. So at 18 months these areas are my most troubled in healing. My TSW flares in these areas are moderately dry flaky and the skin becomes a little reddish, itchy to dryness, but not as flared as it used to be while on TS.  The flares usually appear a couple weeks before I menstruate and become more sensitive when I work out.  I’ve noticed a lot of changes in my skin elasticity and natural oils have greatly improved. TS have damaged my skin layer and the scars from wear and tear of scratching, rubbing and so forth show through.  What helps me to elevate the flaking is pretty handy tool, well it works for me and it may work for you too.  I use a piece of lace material and I gently rub the areas that constant flake. It helps to scrub the dead skin layer that sits on top of the skin and I immediately wash my face or go into the shower and gently exfoliate naturally and more skin will fall off. This has been my routine for awhile during the dry winter season.  My skin is not as sensitive and does not require heavy creams to get through the day. When I was on steroids, my skin was so very dry, Eucerine Heavy cream was my best cream all year around to aid in all over dryness, but my face and my complexion looked splotchy and still it would be very dry at the end of the day.  Month 12 and so forth I started to use SIMPLE facial lotion, because one of the ITSAN veterans started using it on her skin in her later stages of healing. But it stopped working for me in the winter season as humidity dropped tremendously.

8f60e1df453cafdffb7db69fd522-660x660

The winter weather in Japan brings cold wind and dryness to the air, so this was not hydrating enough for me.  So at month 17 I started using Cerave Wash and Cerave PM facial lotion. (better on skin that does not have any tears, cuts or abrasions-it stings) This product has worked wonders for me, because it doesn’t take away the moisture from my face and I’ve noticed the surface of the areas need more healing are getting stronger and less flaky. I remember my dermatologist recommending this years ago, but it did nothing for me then, because my skin was so used to being caked with thick cream and on my body I’ve always used Vaseline repairing lotion and my skin on my body is super soft and has healed up nicely.

81ZGjQ+mY7L._SL1500_imgresvaseline-intensive-rescue-repair-lotion

Past due Anniversary

This time last year I was going through the worst of TSW. This time last year I was hiding in my house in pain, shame and sheer agony of swollen eyes and red skin that was slowly spreading. My face this time last year was flared beyond I could imagine and my upper body, was like some kind of plague taking over; finding other areas to find space to share it’s pain and very red tender skin. Hair loss..Showers were a nightmare, but somehow it was my sad oasis where tears felt natural and releasing what sadness I could before I faced the truth again; that this TSW was really happening to me and I really made the decision to go through this agony. I never imagined a year ago I would go through so much pain, that I wanted to claw my skin off to remove that metallic smell of puss. The itch that didn’t subside unless I felt all the loose skin come off. Finding dead skin all over my sheets, clothes and examining the quantity of skin in the vacuum was enlightening but hopeful no one else saw my disgust. Baths became another home for me to escape and sheer quiet place and my end of the day of work before I scratched my skin to pieces of being so bone dry. I remember wishing the same time last year that each day move faster so that I’d be one day closer to healing.

Many events went on w/o me last year as I battled through TSW. It was a hardship saying no to many invites to parties and special events in my children’s life that would hurt me to the core. Even when I started working at month 4 I avoided eye contact and any close gestures. I just kept visualizing where I saw myself healed in the end and purely hopeful of seeing my beautiful skin again.

14 months later…….

First I want to apologize for not updating. It’s not that I’ve healed and want to forget what I went through. But when I sit down at home to begin to write and tell you of how it’s been going, goes beyond words. I’m not completely healed, as I do get flares on my face and neck, which are the most places that were doused in TS. I’m working through it, as I’ve been very dry and somewhat itchy in these places. I know how to handle it w/o TS and moisturize w/ heavy creams as the skin works its magic. Even through these minor flares I’ve managed to do my very first sprint triathlon, walk my son through his homecoming parade as he was crowned king of his middle school, grow in my workplace and host many famous entertainers and also I’m able to get back into my high intensity workouts, but with the added hives that really annoy the heck out of me, but I tell myself….”let the body do its thing” “this too shall pass!”

It has been amazing to reveal my skin during the summer time as I’ve worked so hard to get it back to tank top ready. At month 7, the dark pigmentation of where I scratched like a mad woman are slowly fading. Once again, letting the skin heal itself. 14 months has brought me great joy and many have noticed and commented of how well I look. Deep down I’m still battling the demons that I don’t look well enough or pretty enough, but boy do I snap myself out of it and embrace the lines and scars.  I’m Topical Steroid free and I still have them in my medicine cabinet and I can’t believe I’ve never wanted to use it in over a year.  SHOCKING!

It’s been awhile since I posted but here are some pictures of the past 3-4 months! Keep working through the process of healing. You will get there….it really takes time….:)  Picture is having hives after being out in the sun and sweating, but it subsided 30 minutes later.

20141101-224939-82179847.jpg

20141101-224938-82178015.jpg

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! 🙂

20140630-204913.jpg

20140630-204902.jpg

20140630-204845.jpg

Cherry Blossoms in Tokyo

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

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


<

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!

7 month flare

8th month