Ramblings of a Red Girl

My last post I was complaining about how my skin was being indecisive and I couldn't tell if it was on the verge of blowing up or calming down.  Frustrating.  Well turns out, it decided to finally make up its mind literally the next day and I do not like its decision.

My skin has gotten several times worse.  It was already bad to begin with, but now it's just downright debilitating.  Oozing, raw, red, flaky skin all over my face, neck and ears.  Traveling all the way down my body but in lesser severity.  I can't sleep, even when I take hydroxyzine (Atarax).  I'm up all night.  I can manage bouts of "sleep" throughout the day after 12pm.  However, they're extremely disrupted due to my discomfort, pain, and itch.  I can barely move my neck, and when I attempt to I feel like my skin is going to crack and tear apart.  I know this is all part of the process and I've gone through this all before several times in my life.   I'm ready for it to be over, but I know I still have a long ways to go.  Twenty years of slathering and ingesting these foul chemicals onto my body has led to this.  Now it's time for my body to repair itself and run its course.  No matter how painful and distressing, I just have to keep myself positive and remember this WILL end.  As unbelievable as it may seem sometimes.  It's just so scary having NO IDEA whatsoever when.

I'm obsessed with finding out when...  When will it calm down?  When will the flare end?  When will I see drastic improvements again?  When will my body be done with prolonged, life-pausing flares?  Most importantly, when will my skin finally be healed?

There's no way of knowing.  But I still find myself reading countless blogs, ITSAN posts, etc.  Trying to see if I can figure it out, even slightly, from others experiences.  Trying to find out if there seems to be a way to shorten the process.  These attempts are futile at best, but I can't help myself.  There's a part of me that won't give in to the thought that I have absolutely no control over this.  I just have to accept it and face the music though.  I'm getting tired of obsessing over it, but at the same time it's so hard not think about your skin when every waking moment your reminded by every uncomfortable movement, every itch, every glance in the mirror.

This morning I got out of my bed around 9 AM to take a shower.  I don't take baths because they're simply too much of a hassle for me to make.  I got in and it stung for a few seconds, but nothing too bad.  Overall taking a shower feels pretty good.   You know, as good as one can feel when their skin resembles that of a burn victim.  It's AFTER the shower when all the disaster usually takes place.  Today wasn't an exception.

 I get out, pat dry until I'm left with slightly damp skin, and slather on my CeraVe cream.  I try to do this as fast as possible because I HATE touching my skin when it's like this.  Then I blow dry my hair because I know I'm going to crawl back in bed and anything damp touching my neck is an absolute no, no.   It takes me at least 15 minutes to dry my hair cause it's long and thick (another hassle of its own, especially during TSW).   Then as I'm ready to get into my bed, it starts.  I itch.  Starts out almost calm.  Almost like I'm in this strange trance.  Then it escalades... until BAM, I have no self-control whatsoever.  Clawing at my skin like a mad woman with my nearly non-existant nails.  I scratched until I couldn't scratch anymore.  I hate it.  My poor face.  My poor, fragile neck.  Torn to shreds of their former self.  Now I was left with the horrible feeling of ooze on freshly raw skin.  I had to jump back in the shower again.  This time I put the tap on as hot as I can make it.  So terrible.  I just had to calm the monster living inside my skin.  Taking over me.   Afterwards, I climbed out of the shower for the second time, slathered on the lotion for the second time, blow dried my hair for the second time, I finally settled in my bed, exhausted.  It was now 11 AM.  Two hours later.  My skin was still on fire, still itchy.  The beast knows no end.  I think I finally fell asleep a little before 1 PM.  Only for a short while, of course. It's absolute torture, this thing.  I don't know how people manage to work and live somewhat productive lives during flares.  Kudos to them.  I simply don't have that strength within me.  Not anymore at least.  

To make matters worse,  everything above happened after taking 40mg of hydroxyzine after my first shower.  My script is for up to 4 pills (10mg ea.), up to 4 times a day.  I don't take it 4 times a day though.  I actually rarely take them because I am weary of all Rx drugs now.  Lately though, the lack of sleep and sanity-wrecking itch have left me no choice.   I wonder how large of a dose I can take at once since 40mg obviously doesn't seem to do the trick for me.  Perhaps 50 or 60mg?  I just need some damn uninterrupted sleep before I completely lose my mind.  If it hasn't happened already...  ~womp womp~

Unknown Happenings

I have no idea if my skin is on the verge of blowing up, calming down or just in a perpetual stage of indecision.  It's been cycling through different stages of mid-level flares all month. Back and forth.

Myself, being silly.  March '13

Make up your mind already!

275 Days Down.

Well, it's been 275 days since I began my withdrawal.  To say it's been rough is an understatement.  Sometime soon I will be making a post describing my withdrawal from beginning to present and possibly post some pictures.  Unfortunately, I don't have any pictures from the first few months, during the worst of it.  I found it too hard to look at myself and move out of my bed, let alone photo document it.

Right now I am going through what I can only assume is the "second big flare."  It started around the end of month eight.   I don't know what to think of it.  It's been over a month and while it hasn't been even NEARLY as terrible as my first prolonged flare from November-January, it has certainly been disheartening.

I am lucky enough to have had a few months break.  The same thing occurred my first time withdrawing.  I had a few months of nearly clear skin.  It was mostly just an itch here and there, a few scabs maybe, and the battle scars of course.   This time around my calm period began mid February and ended around the last week of May.

I knew it was coming to an end, but the reality wasn't easy to face.  It started with a little bit of itch on my cheeks.  I suppose I could sense something brewing deep within my skin.  Slowly it became worse, but I was still able to maintain a social life for most of June.  

However things really got ugly the last week of June and the social life ended.  I've been increasingly exhausted.  I can't sleep during the night AT ALL.  I've consistently gone to sleep past 8 AM for the last week or more.   It's awful.   Then I sleep throughout the whole day.  Waking up every few hours, of course.

My skin is flaky, itchy, and red.  Some days are better than some.  My face, neck, ears, chest, and back of knees have the worst of it.   My scalp is also extremely itchy and flaky.  The worse part of this besides the obvious DISCOMFORT, is how mentally draining this whole process is.  The uncertainty creates a feeling of devastation and panic within my mind.  I feel like I can't move forward with my life.  I have no idea what to expect.  I just graduated college and I need to find a job ASAP.  I have rent and bills to pay, not to mention my grace period for my loans ends in November.  However, at the moment, I don't feel I'm in any condition to start a new job... especially if things get worse!  What is one supposed to do?

There's nothing I can do, I suppose.  At least for now, except rest and let my body heal.  Things will be okay.  I just have to hope and see where these next few weeks take me.

My Yogi tea quote of the night:

"You must know that you can swim through every tide and change of time."

How extremely fitting.  

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.