Sunday, September 8, 2013

Day 2-Better Late than Never

I finally started a blog. Between making up excuses and avoiding homework (which I'm not doing right now)...I decided to share my journey with topical steroid addiction. My fiance is the one who pushed harder for me to start one. But I want to raise awareness. I want to warn those who may have already begun....


I cried when I saw this video. It was me.
Lets start with my story.

Past
I was born with eczema, mom has it (mild), grandpa has it (moderate) and I have it (severe). My first encounter with topical steroids was with my mother. Since she had it, she had some and (without knowing any better) put a tiny bit on me. Problem solved! Sorta. I was constantly prescribed steroid creams and ointments through my life. I used protopic as chapstick! My eczema was a constant problem growing up. The worst came in waves. I was in 1st grade, and it came on so strongly and differently that a hospital almost refused to let me in because they thought I was contagious. 
Lips and neck (5th Grade)
And now looking back I think every flare I was having was really TSW and I just didn't know it, and every time it got bad, I SLATHERED it on everywhere. It's just as that video describes. My name might as well be Jane.
 

In my sophomore year of high school I developed a staph infection on my elbow. When they put my on one of the strongest Topicals. It was a large factor in me falling behind in school, and eventually lead to me not being able to graduate.

Present
Currently I have been using protopic and topical steriods to manage my my eczema several times a week. Since I was ready to take drastic measures I was willing to take immune-suppressants.  My dermatologist prescribed antibiotics, the suppressant and gave me a kenalog shot in each arm. Right as I got back to work, about an hour after the shots I started to break out in hives EVERYWHERE. I was getting scared, because they were incredibly itchy and painful, it hurt to breathe. I decided to go back to the hospital and got into a screaming match about it with my assistant manager.
150mg azathioprine eventually started making me vomit, so I've been switched to cellcept. There are no improvements yet.

Future
I've tried it all. Diets, elimination diets, special cure all creams, blah blah, blah....You know how it is at this point huh? But a few weeks ago I stumbled upon that video. I have a long journey ahead of me. I would do anything to end this long life problem. But I'm going to end this with a Here is a photo I took on September 8, 2013. One day after I stopped.

4 comments:

  1. just imagine how awesome it will be to have normal skin :) if you've had eczema since you were very small it will be interesting to find out where your "real" eczema is. I'll be keeping track of your posts :)

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  2. I am in 4 months now and it is very difficult. Just keep going oneday we will heal and have our skin back.You are tough! I cried so much every single day because it hurts so much physically and emotionally. I did not work for almost 4 months now.Even looking and reading your post made me cry.

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  3. Hi, I wonder how you are doing now and..Did you quit topical steroids or are the dermatologists still pushing it? I'm 14,5 months in TSW. My hands look like yours. I just wonder if you have improvement and after how long...

    Keep up! thank you for sharing your photo's.

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