MY Childhood Eczema Story

 

I had very, young childhood eczema, like my older brother and dad. They grew out of it, I didn't. The difference, they didn't use topical steroids. My story.

https://patientslounge.com/conditions/My-Topical-Steroid-Skin-Addiction-and-Withdrawal-Story?fbclid=IwAR2H2uUEKLPfT5-GuRceRMMekcDvhFNlGGVDR_lzYTWyxSHsFcQECqc5kPU

Have You Gotten Your Eyes Checked?

I'm republishing this post from 2014 as it is impertinent that anyone that has used topical steroids for a longer time than two weeks, pay close attention to your eyes. There is a wealth of information on the ITSAN site as well. 

Update November 2021: I'm having 6 month check-ups on my eyes at my Opthamologist's direction to keep an eye on what may be macular degeneration, plus mild cataracts since my 2014 post. I'm now 66 years old and understand that this may be an age issue but I never rule out the long-term effects of lengthy topical steroid use. The rest of this post is republished from my first writing.

"You may be old or new to the Topical Steroid Withdrawal Syndrome (TSWS) world, but if you have not heard about how this drug can affect your eyes, please do read this blog post by Dr. Fukaya about it. My good friend, Dr. Fukyaya worked hard and diligent for years as a dermatologist and published much of his findings. 

http://mototsugufukaya.blogspot.com/search/label/25%20Ophthalmological%20complications

Whether you are a mom of a child withdrawing from steroids or a teen or adult, it is very wise to have your eyes checked as many are finding that they not only have skin issues but the eyes can be affected as well. This is not to say that eyes cannot recover as well as mine do seem to be less photosensitive now in my 42nd month of topical steroid withdrawal.

I've had some problems with my eyes since withdrawing from all topical steroid 42 months ago after 40+ years of using it. I didn't know about the eyes being affected so my first eye exam was about a year ago and it went quite well considering all the years this drug entered my body.

I had very dry eyes that burned and blurred a lot which I contributed to long hours on the computer and I'm sure that just added to the steroid induced eye afflictions. I also had swelling if I ate chocolate, bloodshot sore and dry eyes that could not tolerate any sunlight without pain and sunglasses. This peaked in my later months after the 27th month point of major improvements in my skin. It seemed to be a delayed reaction to the ts in my case but nevertheless, it was a problem that concerned me.

The eye exam took about an hour since you have to get drops to dilate them and then several tests to check out all functions.I very much dislike that word "dilate" these days but it did reveal a small scratch or injury on my right cornea that puzzled the eye doctor. He asked me several times if I had some type of injury or scratched my eye to which I replied "no" each time and finally said "it's the steroids, they affect so much it's crazy." He doubted it very much since he prescribes the steroid drops for eyes and has never seen that but he also does not know about topical steroid addiction like so many others in the medical community.

I left with the comfort of knowing at least I don't have cataracts, glaucoma or retina problems like some others in TSW have had. I cannot stress enough that reading this blog and having eyes checked is best sooner than later in the withdrawal process."

Steroid-Induced Adrenal Issue Awareness is Happening!

 

My Topical Steroid Withdrawal Syndrome Story

I wrote about my own topical steroid withdrawal syndrome (TSWS) journey about 8 years ago. I will never forget the trauma and intensity of that 27 month, dark night in my life. I am committed to telling my story everywhere I go and to help raise awareness of TSWS and to help prevent this preventable travesty in other people's lives. Hubpages recently promoted my article to the "Patient's Lounge" which will raise views and reach more people! Yay! Read my story and see my pics here.

ITSAN 2014

HUGE Shoutout to Preventable Author, Briana Banos!

Give credit where credit is due! 

BIG APPLAUSE!

Briana is an incredible lady and part of the TSW/RSS support community. While suffering Topical Steroid Withdrawal herself, she went above and beyond to raise much needed awareness to this PREVENTABLE condition. Briana found her way to the mother support ship, ITSAN, who gave her much-needed support during her own, difficult withdrawal from steroids. So, it goes to show how one person can move mountains after deciding to do something about it. She is redeeming her suffering and making a difference in the world.

I will forever remember you and your diligence to save the red skin sufferers, as well as the impact you've made to help see that one one ever has to go through this again, because it is indeed, Preventable! Please do watch this incredible video made by Briana, as she traveled the world to gather the critical info for it.

The medical community has taken notice of her mission and it has been published on National Eczema Association website. Good job my friend! Thank you NEA for giving this huge travesty of a disease, public recognition on your site. I hope you'll continue to make it known worldwide. Steroids need to be used very cautiously!

Where Are The TSW Vets Today?

Hi all,

I know those of you that follow the RSW bloggers probably wonder what happened to the ones that are no longer updating their blogs very often, maybe not since a couple of years ago. The first group of vets came together in 2010 in a Google support group to support each other, which eventually led to the cumulative thousands in the ITSAN forum and Facebook group, plus other specialty groups.

I can't speak for a large portion of the early support group members but I can tell you that some of the core vets that helped out or were on the board of ITSAN, are living their lives again and want the best for everyone else coming down that road less traveled.

We recently had a "catch-up" reunion call with these comrades, (even though I was in the hospital for a case of pancreatitis, and had to pass on the reunion call) the vets came together on the call and really enjoyed catching up with each other. Everyone lives in different states, so it's quite a job to coordinate getting everyone on a call with three different time zones!

The new ITSAN president, Kelly Barta, took my place facilitating the call and did a great job, which I never doubted. Kelly recently traveled to my neck of the country and we had an enjoyable and talkative lunch together. We even got the server to take some pics of us. :) I just love this lady, she is a torch runner with a heart of gold, picking up for the former hard-working comrades of this cause. She travels often to represent the suffering TSW community to bring more change to the whole outlook and knowledge of this drug-induced, iatrogenic disease.

So the first generation vets of TSW had a wonderful time catching up, sharing their stories and how life is now for them. There is life after TSW but it would have been hard to convince any of us of that when we were in full throngs of steroid-withdrawal hell. As I've said many times in our support groups, "this too shall pass." You will have some or many scars and you may have bumps down road, and most likely will not be the same person coming out of it as going in. That can be a good thing as that is what suffering does and if we can take the good, improve our outlook on the precious gift of life, and let the bad stay in the past, this is how to overcome. We help others because no one else understands this beast like we do. It's truly not what happens to you in life, but how you respond to it.

BTW, calling all vets with blogs, to please update so the desperadoes that look to us for hope and encouragement on this hard road, gain some stamina to endure. We all know that feeling and need to be a light, spurring them on in the darkness of that TSW tunnel. There is a new tomorrow waiting for you!