It’s about time!

 💟  I’m so happy that my skin healed so well after enduring the hell experienced for 2-3 years following decades of topical steroid, corticosteroids, immunosuppressants. Except for celiac disease, ALL mystery autoimmune disorders are also a distant memory. What I do remember are many blood draws and interventions, threats to send me to some of the top medical providers in the country because I was dying.

I’m happy to be set free from enslavement to big pharma. I understand the desperation to want a “fix” but after going into [albeit unknowingly] TSW multiple times, once I learned what was happening I was mostly isolated for several months to purge my body of the poison within. I kept things simple. ICE bags to put out the fire and control of itch that tested the boundaries of sanity. I stayed hydrated with clean water, used cotton to make compression wraps over a blend of simple zinc balm [for ooze] and lemongrass balm. No junk food, plenty of protein and as much sleep as possible but we know how fleeting that can be at times. Bathing was difficult in chlorinated water. …

As healing improved, I would drive 90 minutes to spend day[s] soaking in outdoor hot springs pools. Contrary to what so many doctors counsel and I believe I took the leading of Dr Marvin Rapaport,  I looked up and read everything he published I could find, found some excellent scientific articles [I hope to find one day] and learned what it must be like for women to go through menopause, as it was only time in my life that my hormones went wild and experienced hot flashes and so many things that are difficult to imagine. My skin was so thin that at one point it basically just fell off my face, there is a photo down there somewhere. 

As bad as some images are, sadly I didn’t capture the worst of the worse, looking back it’s too bad. My face was beyond recognition and deeply horrifying for others to see, so few did. 

My journey began last week July 2014 I believe, so coming up on a ten year anniversary.

Life after TSW

 I’ve been busier than ever and have been freed from the evil within. I can not say for a certainty that is 100% the case but easily high 90s seriously. I have not had a flare for years now. I’m still aware of what comes into and onto my body but over time the anxiety has greatly diminished. 

 

Okay so I took the time to create an update post and while doing a quick overview before posting I somehow managed to delete the entire post. It’s too late to recreate, as it’s long past a proper sleep time for me. 

In a nutshell, overall skin healed 100% , still an autoimmune disorder affecting hands, turning my focus to healing autoimmune disorder and brain trauma issues. I will come back and post, it’s so hard, much more so after Covid-19. I’m probably going to start separate blog for that content. 

 Forever busy and though I do not often dwell on the past trauma of my TSW battle, there are others who are just beginning that continue to reach out and need support. For this reason, I will continue my periodic updates.

Update: May 2020

January 2020 visiting with friends in Colorado …. no more face flares !!! EVER [left]

 October 2019 travel when my beloved step-mom 'mom' passed away. [top right]

 March  2019

August 2017

A few pics from early TSW days [ late 2014 ] followed by recent updates through August 2017

Additional blessings have come - thyroid healed and no longer need to take meds.

below left: skin healing after it literally came off while I washed face [2014]

got revenge on my granddaughter after carefully painting my face it was her turn, we had a blast and no flares! March 2017

my hair keeps growing!!!
   
for my entire life since childhood on steroids my hair would never grow past mid back, it's now longer than pictured here. June 2017

Below: today 08/13/17, no makeup, still doing well, a small area at jawbones and hands mostly right ring finger area that is healing up. This is a tough time, the 2nd of my 4 boys died suddenly 2 weeks ago and I had dental surgery yesterday. Skin holding up much better than it ever would have in past during such stressful times. I can attribute the flare to 'meat' that must have had hormones which is when it happens.

my precious and beautiful son gone at 31
August 2nd I got the worst imaginable news
of the sudden death of my son. Though one
of the most unimaginable heartbreaks of
my life, I'm not left without hope that one
day he will live again. This is the promise
afterall.

A Break!

July 2015 I had a break and decided to treat myself to a night out for a celebration dinner. It would be a temporary break but so welcomed. During those times you savor each moment and as times move forward the breaks grow longer, the flares shorter with less intensity.

 After over a year of intense withdrawal from topical steroids this was so encouraging. Healing comes.

all taken within past month or so, center just this past Thursday 03/17/16 @ 20 months from beginning of tsw

Feeling so much better in my new skin !!!

This was taken earlier today, December 11, 2015 ~ I am not 100% healed BUT getting close. I have a small amount of coverage in a few spots and inside corners of eyes. I have been putting together gallery that is so past due and will hopefully get posted before end of year. This is about 17 months

Hi!  I have been taking pics but as improvement comes and life begins to take shape again and I'm no longer confined it's been a challenge to get to my 2 month update but it will be posted soon. I'm not 100% but so much better than a year ago. My hands, one wrist and to lower section of face and my neck are still hold outs. It's been over a year now since my last and final TS use, one of the best and a life saving choice. My thyroid is working proper again, it seems my adrenals are as well blood test will confirm that one as well. Don't forget to scroll down and check the progression of my journey.

end of month TEN May 30, 2015

Month 8 March 2015

Getting better by the day, so much going on, so little time to update but will do a progressive update video very soon. It sure has helped me to see the progression. The journey is a reminder of how far I've come and how there is no way in 'hell' I would go back to that horrific roller coaster of a ride. Check back soon for updated video. oh yeah, this pic was taken April 3, 2015

it can be so difficult to describe the depth and intensity

of pain, burn and itch that can come all at once, close as I've come so far is to imagine, using the thumb..... smashing the thumb, tying a band around wrist to slow circulation [induce throbbing], then peeling the skin away while spritzing with lemon juice, it really is just the most intense form of discomfort imaginable.

I have an extensive history going back to childhood, approximately 47 years. The list includes and is building as I recall more. Hydrocortisone .05%-1%+ multiple rounds of Prednisone, Diprolene Ointment, 0.05%, Diprolene Cream AF, 0.05% Flonase,steroid shot/wrist. Desoximetaone USP 0.25%,Kenalog Cream/Spray, 0.1%,Topicort Cream/Ointment, 0.25%

Here are some pics from past couple days, it's been tough, but the hot spring soak was helpful earlier in the day, not sure how much yet. It was too short a day as it was necessary to return home. I'll have update in photos post soak later on.

It can be so hard to express how painful this is, it goes beyond the surface, deep. All right, though sleep was better after soak, it was still too short & the urge to sleep is back, can't fight it.

Another sleepless night, so counterproductive, how can one heal when one does not sleep and how can one sleep when one is not healing.

After posting a couple of overview videos what I may do here is post by the month progression of this journey. Who knows how long this will last, we're talking 40ish years of intermittent use of multiple varying strengths of corticosteroids, not to mention steroid injection, inhaler, Flonase nasal spray, pain patches, you name it, seems I unwittingly became a steroid junkie. I was never warned of such a thing.

Video featuring recent and also past TSW

02-11-15  was looking pretty good and then THIS - hard to compain, these are the BETTER days



02-13-15 [what a difference a couple days can make]
and some good cover up doesn't hurt, but mostly healed. [02-18-15] It was short lived but will take all I can get.

Seems that stress truly is responsible for this outbreak, as my face
was pretty clear the evening prior, my son became agitated with me
and I slipped on eating 'wheat' containing food, seems to be making
a difference to avoid not only gluten but all wheat. An experiment in
the works.

a connection - Topical Steroid Withdrawl aka TSW, Topical Steroid Addiction, Red Skin Syndrome - Autoimmune Disorder-Leaky Gut- phBalance [think of an aquarium] Sleep disorders.... and more click link below for a short journey through recent effects .....
 Link below to a short video featuring more recent journey through TSW

the face of Topical Steroid Withdrawl - Autoimmune Disorder

Month SEVEN

There is so much more to this journey than finds it way to this page, hopefully soon. For now this continues to be a time of distress with itch, burn, pain and swelling, many sleepless nights, tired days and it goes on. Life goes on as well, barely it seems to creep along, it is a time for healing. Healing? Yes along with all the discomfort there is a measure of healing, the intensity is less when I stop to think, the areas not as large.

It is hard to realize that when the pain is so unbelievably intense. There have even been times I've looked at my hands and wondered, my word, HOW can you feel so much pain radiating with heat but not the fire of a few months back.

I should be fast asleep, my body needs the rest for healing but the itch has kept me awake, the thickness of the skin on my face has returned with red like a burn. WHERE does this come from? My thumb is the worst now and so slow to heal, one day it will but for now it's a tease. One day I awake and it seems to have improved but then I see this really is not the case.

Compression gloves have been helpful but can not wear them on my face. Some days I use fresh aloe vera to cool my skin, on nights like last a bag of ice for my hands through the night. Oh and somehow after all these months there was a leak of icy water in the night around my pillows, though I was too tired to fully care.

      It is difficult of course to see from photos but the pain in hands is nearly indescribable 02-16-15

One of the most frustrating things is the insomnia, here it is coming up on 4:30am and sleep is still to come, though I've made efforts to get all comfy and then the ITCH. Though it's better than the sheer pain and burning of the past several days, it still interferes with sleep.  My face flared for past week, past couple days seemed to be worse with not [only the sweliing, redness & burn but it started oozing clear fluid that began crusting over. Ok better sleep while the urge is strong.

It's been a long long journey ...

The motivation for starting this blog posting came from the many many posts I have read/viewed over the past few months or so by others traveling the Topical Steroid road of recovery. This being ONE of the more challenging personal aspects of my life, which truthfully has been for the majority of my life, I've finally found the keys to moving forward.

Keys, yes a fistful of keys dangling from a ring. Now it's time to take them, sort through and use each one to open a door that leads to recovery.

This leg of my journey began about the last week of July 2014 following surgery... it seems it may run on for many more months to years, it's been a long long time coming. Being so ill for over two years now, it's encouraging to have that ring of keys, otherwise things would be hopelessly bleak. Now, however there is much work to be done.

That said, with so much work to be done, postings will be as they come, as there is time and as fatigue is overcome. My family doctor thought keeping photo journal was a good idea, so many photos may be posted, perhaps even more than dialogue for a time.