Positive Thoughts, Positive Energy

Things I will do once I'm healed...  Hallelujah!

1. Touch up all my tattoos.
2. Get a new tattoo...or two...or six.  I deserve it :)
3. Buy new clothes that show off my renewed, beautiful, healthy, glowing skin.
4. Spend each day outside, even if just for a little bit, and enjoy the feel of nature's elements on my skin.  No more staying cooped up all day, hiding from the world. 
5. Travel around the country and hopefully other countries as well.  My feet must touch European ground someday!
6. Go swimming !
7. Buy new swimsuits... Victoria's Secret, anyone?
8. Date, fall in love, etc... Without holding myself back.
9. Make the most of my days to make up for lost time.
10. Revive friendships, meet new people, explore.
11. Be wild, young, and free at last.
12. Find a job I love that pays well.

There are so many things I could think of, but those are just a few.  Even though TSW is an evil, tortorous hell ride on Earth, it will at least serve the purpose of giving us all a new perspective on life.  We will be rejuvenated, reborn like a Phoenix.  Hmm.. I think I just thought of the perfect tattoo to get once I've healed.  

Alone & Uncertain

I don't know what to do.  I hate not knowing.  Constantly being unsure about how my condition will be tomorrow, next week, next month.  Lately my skin has been flaring for the past month.  Some days are better than others.  But even those days seem bleak.  I try to maintain as normal a life as I can, but most days I just want to hide away in shame.  I hate looking and feeling this way.  This withdrawal is taking everything out of me.  I am on the verge of tears most days.  However crying won't make this go away.  It's eating away at me.  I just want to live a normal life.  One of the worst parts is just not knowing.  How long will this be? How much longer do I have to suffer? And what degree of suffering most I endure?

I know I'm not the only one going through this.  But I feel so alone in this. I try to hide this from my friends as much as possible, but there's only so much I can hide.

Right now my face and neck are red and the dreadful ooze has returned.  I had a scratch fest earlier today and now my face looks ten times worse.  I woke up yesterday thinking things were looking better and turning around.  Only to be duped once again.  It's so unpredictable and back and forth.  I feel as if things are going to take a turn for the worse very soon. It breaks my heart.  All I can do is weather the storm and hope for the best.

May the storm be over sooner than not and bring brighter days.

Past 6am...

& I'm still up.  Not surprising.

It's strange how my skin flaring again equates to my sleep schedule once again being all screwed up.  How does that work exactly?  It shows how this withdrawal is truly a collective healing period for the body.  It's not just the blood vessels dilating and excess of NO (nitric oxide) within our skin.  My adrenal glands are still healing.  My cortisol levels are who knows? There's so many strange things going on with my body.  I find myself wondering if every little thing is due to the corticosteroids.  Only time will tell... And heal.  Positive thoughts, positive energy... 🙌🙏

Now that the sun is up, perhaps sleep will come to me.

My First Withdrawal.

I haven't written here in so long.  I'm terrible at keeping up with blogs, however I am going to try and maintain it this time.  As stated in my About Me I am going through topical steroid withdrawal (TSW).

This is my second time going through this, per se.  The first time I didn't know I was going through withdrawal, I just thought my body was detoxing.  Luckily, I was only bad the first couple months, and even so it wasn't that bad comparatively to other people going through this.  It was summer 2011.  My skin was red, itchy, and flakey, but somehow I was able to live a relatively normal life throughout this time period.  I was working part-time and exercising every few days outside, running/jogging/walking.   By October, my skin had calmed down drastically and my skin continued to heal and see improvements until about May 2012.   Slowly my skin started to deteriorate again.  I was itchy, had pink blotches on my face and legs, etc.  It wasn't until the end of July that things turned ugly. The back of my knees were terribly affected by the TSW.  They were raw, red and oozing.  I could barely walk due to the pain.  It worsened and I was at my wits end as to why this was happening, trying all sorts of supplements and such, looking into my diet, etc.

By the beginning of August, it had become full body.  I would wake up with my eyes swollen slightly.  I couldn't function.  I couldn't sleep, but I couldn't get out of bed due to the exhaustion.  I was having terrible anxiety.  Heart racing.  Chills.  Swollen lymph nodes.  I really thought something terrible was wrong with me.  Hence my decision to call a dermatologist.  Something I detested having to do.   I decided to go to a new one, Dr. P (relatively speaking, I had not seen her since I was in middle school).

I went in, looking and feeling absolutely miserable.  Dr. P looked at me in awe, said I was the worst case of eczema she's seen in ten years.  I explained to her my past.  How I've used topical and oral steroids ineffectively for years.  How I truly believed they were not the answer because my eczema always got worse afterwards (specifically Prednisone).   How I stopped using them last year and my skin got better.   Etc.   However, she said this was just how my skin is.  I had severe atopic eczema, there was no rhyme or reason for the way my skin behaved.  She prescribed Triamcimalone for my body and Desonide for the face, along with a few days of Prednisone, Atarax and antibiotics.  In addition, she told me I would eventually need to go on stronger meds to maintain normal skin.  I believe it was Methotrexate we discussed.  When I was 15, I was put on Cyclosporin for almost a year so this was not something shockingly new to me.  We set a time to meet in a few days and I was on my way, feeling dejected.  However I believed (at the time) I had done the right thing seeing her, since I was in such bad shape.

When I went home with my prescriptions, I dealt with an inner battle of what to do about the steroids.  My biggest issue was with the Prednisone.  I have been on Prednisone too many times to count since I was about 10 or 11.  Honestly I'm afraid to know how many times I've been on it as I know it was frequent from ages 11-15 and then several times again at 22.  After that I was hospitalized during a major flare.  This is when they put me on cyclosporin.  I was seeing a new dermatologist, Dr. K.  I really liked him.  I knew he looked extensively into my case.  Although they put me on Prednisone when I was in the hospital, afterwards they told me I should never go on them again.  Something I took to heart.

To be continued.