Hope Dangles on a String...

Like slow spinning redemption, 
Winding in and winding out... 
The shine of it has caught my eye, 
And roped me in so mesmerizing 
And so hypnotizing. 
I am captivated.

Slowly my skin is looking and feeling better. The redness is dissipating; the weeping occuring less often despite my incessant scratching.  Even the elephant skin seems less elephant-y.  I know I have a long, unpaved road to travel, but things are finally looking up.  There is hope intertwined in my basket of ever-changing emotions. 

Don't get me wrong. I'm still a slave to my skin every hour of the day. My nights are completely devoid of sleep. The itch insists on spending all day long with me despite my obvious disdain for it. I long for the day it finally packs up its bags and leaves for good. The nerve pain is still sticking around too, nevertheless it visits less often. I still dread showering since that is when it hits me the worse. My neck, followed by my chest, is the most affected by the nerve pain. However, my calves and feet are the reddest, bumpiest and itchiest. They were the last areas to flare so it makes sense they calm down last. 

Slowly but surely everything will go away. As someone who has suffered from terrible "eczema" flares for over a decade, I grow eager with anticipation when I think about the fact that one day all of this will finally be over. Every horrible symptom will merely be a horrible memory. I sincerely hope I've gotten past the worse, but I must keep a guarded mind. There is no way of knowing what will happen next, therefore I must keep realistic expectations.

11 Months Down {photos}

Happy Labor Day everyone! Yesterday I reached 11 months of withdrawal.  Crazy to think in 29 days I will have reached a year off steroids.  My first time withdrawing had been 13~14 months.   In these past 11 months I have been through miles worse than I had my first withdrawal.  The price I paid for resorting back to steroids.  Lesson more than learned.   I hope everyone reading this avoids making the same mistake I did.

It's been over a month since I last posted.  I want to thank everyone who commented.  I'm sorry I didn't reply to anyone.  I was in a terrible state during that time physically, emotionally and mentally.  Since then things have improved in some ways.  The easiest way for me to update is to describe what I was going through last month versus now in list form.

Beginning of flare [June-July]:

• Energy levels decreased drastically
• Insomnia kicked back in; mostly sleep only during daytime
• Itching worsened 
• Skin reddened esp. on face and neck
• Pimply itchy oozy bumps on cheeks
• Eyes swollen upon waking
• Skin on face/neck cycled from oozy and crusty to flaky
• Redness slowly spreading on limbs
• Enlarged lymph nodes in neck and groin
• Crawling sensations

Peak of flare [mid-July to mid-August]:

^redness is washed out^

Sleeping became nearly impossible even with meds

Erythema worsened from red to dark red

Oozing became relentless and full body

Constant feeling of damp, coldness

Uncontrollable shivering despite it being summer here

Worried I had an infection, took antibiotics which seemingly unhelpful

Feelings of despair and anxiety overwhelmed my mind

Uncontrollable itch frenzies occurred once a day at least

Skin easily damaged; fragile and broken

Ears, face and neck swollen

Movement painful

Edema on legs starting at calves, which later became severe and throughout entire legs and feet

Strange heart palpitations/fluttering

Mild hair loss (eyebrows, scalp, eyelashes)

Elephant skin (knees, hands, elbows)

Pins and needles+ crawling sensations

Lymph nodes enlarged neck-almond sized, groin-golf ball/walnut sized

Current condition [mid-August to today]:

^Note how swollen legs are even after much improvement.^ 

Edema has reduced nearly completely  (Lost 10lbs this week alone)

Oozing has decreased, now upon scratching, as opposed to 24/7

Itch frenzies still occurring on daily basis

Skin healing has increased in speed

Redness decreased

Skin is flakey and dry

Elephant skin more prominent

Lymph nodes in groin enlarged~ several golf ball/walnut size on both sides (no obvious changes in size since July)

Night sweats like crazy

Temperature regulation still off, but now not freezing always

Tight, fragile feeling of skin esp. thin neck, chest, forehead

Intense, sanity-wrecking prickling nerve sensations (growing more intense this week)

Insomnia still a burden

Mentally calmer and accepting of situation

I have more pictures which I will probably post later with dates and captions to show better progression. I'll have to do it when I get on my laptop. Posting on the iPad is annoying and too time consuming due blogger's many hiccups. Also I will be taking more pictures as the days go by.

Right now my skin is doing better and I'm so grateful the oozing is FINALLY dying down. I Hated how disgusting it made me feel. I still ooze a little when I scratch so it's not completely gone but time will remedy that within the next coming weeks I believe. My legs are also much better and looking back to their normal size almost. The above pictures don't show how they are today but how they were last Monday or Tuesday. Also amazing is how my the wounds and cracks are healing despite my constant scratching. I scratch EVERYDAY EVERYWHERE. I usually have two major daily scratch fests- after my shower and sometime at night. This is when I really do damage. However, the skin is truly resilient and proves to heal more rapidly as the days past. I was wrecked with worry over my scratching during the peak of my flare. My skin was soooo cracked, raw and fragile. But now not so much! I'm still a little red, fragile, flaky but compared to what my skin looked like a month ago I'm looking and feeling loads better.

HOWEVER, lately I have been getting horrible electrical type nerve zapping and prickling sensations. I have never in my life felt such sensations for such long periods. I have a hard time describing it to my parents but it has driven me to a pile of tears on multiple occasions in the past few days. Yesterday I had this horrible sensation for a few hours after showering. The only thing to calm it down is using a heating pad. For some reason the heat of the blow dryer doesn't seem to do the trick. As of the wee hours of the morning today, I seem to have it all the time now. I thought the bone-deep itch was bad, but no this is a whole new level. It is like an itch except worse as it can not be quelled at All by scratching. It makes me feel insane. It causes me to jolt and scream and cry. I can't sleep now that this is happening. My mom had to comfort me to calm me down a few times during these electrical "fits." I'm so grateful for my parents. I don't know what I would do without them...especially in a time such as this. Today they went out and bought me a heating pad to wrap around my neck(the worse area for me), Tri-calm cream, Gold Bond lotion, etc. The Tri-calm cream is a non-steroid anti-itch cream which has an active ingredient of aluminum acetate. I'll let you know how I get on with that and the Gold Bond. They also brought me lunch too. They're doing their best to bring me comfort during this far from comfortable time. I think these sensations I'm feeling are what others have described as nerve pain, except I'm not sure because it's a weird pain. I'd much rather have normal "pain" than this. Only good thing is, I've read in the forums this is a sign of nerves waking up and healing. I'm also having night sweats again which is a good sign. I got them before my last calm period. Maybe I'm heading towards another one. Maybe... I'm not going to read too much into anything since TSW is a sneaky Lil beast!

I'll be updating more frequently now that I'm feeling better. I hope you all are seeing improvements as the days pass. Remember... Every day we are one step closer!

Peace xx

Sheer Frustration

WILL I EVER STOP SCRATCHING!!????!??!?

Bathtub Blog

Lately the only place I feel somewhat okay.  I will be so glad when this is all over.  My second flare so far has been much more severe than my first.  I thought the first one was horrendous.

I need to find a way to stop scratching my skin.  It is so raw and tender.  Especially my neck.  It scares me.  Everyday at least once I fall into a fit of skin tearing madness.  How do I stop myself?  It seems no matter what I do to try to prevent myself is futile.  I'm worried about the damage I am causing.  I feel like there's no way I will heal this way.  A devastating thought.  I've also been oozing bucket loads EVERYWHERE.  I feel so gross all the time.  Even if I don't scratch I ooze.  Of course when I scratch its several times worse.

I really miss my friends, my life... I cry thinking about the time lost to this.  I'm living a half life at best.  Simply going through the motions, waiting to feel somewhat okay.  I'm suffering greatly and it's tearing me down.  I'm full of self-pity and I apologize to anyone reading.  There's just no other way I feel lately.   I try to incorporate a semblance of positivity in my life, but it's difficult.  I pray to God to make the suffering end and give me the strength to see this through.  I know it will end.  I will heal.  I will live a happy, prosperous life.  This will make me a stronger person.

I must go on standing.  I'm on my own; it's not my choice.

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.