False Alarm

My skin is doing much better since Friday.  In fact, my skin started to improve the next day after my previous post.  I was really worried I was entering another major flare, but seems it was just a minor one.  I've noticed a significant turn around in my skin the past few days and I pray it continues from here.  This may be the best my skin has been since June?  Not sure.  I am feeling much better though and I'm loving it.

Timing was perfect too since Saturday I had a Court of Honor ceremony to attend for my younger brother.  He became an Eagle Scout!  I was sad thinking I would be miserable there and even worried I would not be able to attend.  However, things worked out pretty well.  I felt pretty decent during the event.  Also, I must have looked okay, since no one said anything about my skin.  In fact, I got compliments on my hair and was told I was "looking good."  Success!   I did wear a blazer, tights with my dress, and a scarf to cover up as much as possible.  Strategic fashion.

Here I am Saturday with my brother:

My grandparents were visiting this past week from Puerto Rico so I've been out and about, keeping busy.  They came last Wednesday.  I wasn't feeling too good the first couple days, but thankfully that changed.  I don't see them very often so I'm glad I was able to feel well enough to enjoy their company.

Photo from Tuesday, outside in the sun so you can see more accurately skin color and texture:

I have plenty more photos and quiet a few post topics in mind to work on so stay tuned.  I hope you all are healing and feeling better.  For those that may not be doing so well, my thoughts go out to you.   I know your pain....  Please stay strong and have faith.  It will pass!

google imgs

Could it be? Flare three?

Woe is me.

The past couple weeks I've noticed an increased amount of TSW activity.  I think I may possibly be heading towards major flare número tres.  I'm really hoping I'm wrong and it's just a minor flare.  Only time will tell.  If it must be a major, I just pray to dear God it's not as bad as flare two.  I don't ever want to have to go through such torment again.  It took so much out of me.

Current condition:

• Rough, bumpy skin texture
• Dry, flaking
• Increase in redness
• Weeping upon scratching*
• Minor swelling in legs*
• Still intensely itchy always
• Still no energy
• Still sleeping horribly
• Still losing hair

*signs that make me believe I'm heading towards a big flare (⌣_⌣”).

Here are some photos from Monday night.  The last one is from today.

One Year Later {photos}

One year off steroids

Well, here we are... One year off steroids (for the second time) as of October 1st.  Honestly, I thought things would be entirely different than they are... but hey, what is one to do?  Things aren't horrible, but they aren't good either.  Every day is still filled with struggles and uncertainty related to my skin.  I try hard to keep my head up, but it's difficult watching time race by as I sit on the sidelines.  It fills me to the brim with anger and sadness.  The cruel injustice imparted on myself and others still gets to me one year later.

I turned 25 about two weeks ago.  I never would have imagined my life would be as it at this age... living at home with my parents, unemployed and completely dependent on them for nearly everything.  My younger self imagined myself to be independent and established by now.  Looks like it will be a while before that is my reality.  It's like I've taken an indefinite hiatus on life; except instead of a relaxing vacation, it's a torture chamber within one's own body.  Sorry for the negativity.  I know this is temporary, but it doesn't mean I don't have the right to be unhappy about it.  It's my party hell ride and I'll cry (and bitch) if I want to.  '(^.^)' 

Anyways, things are rather stagnant skin-wise.  My condition fluctuates throughout the day and day-to-day, but there are no drastic changes taking place.

Current condition:

• Skin is intensely itchy nearly ALL. DAY. LONG.
• Sleep is broken and all over the place.  I usually sleep in the late afternoons for a few hours and about 1-3 hours at night, usually waking up around 2, 3 or 4AM.  It's very difficult to function with this routine.
• I'm constantly exhausted and lethargic.  Energy is nearly non-existent except for around 4-9AM.
• Erratic moods due to lack of proper sleep, anxiety and stress of TSW.
• Hair loss.  I still lose a lot of hair on my scalp.  Thankfully I have naturally thick hair so it's not obvious, especially to those who don't know me.  However, I know it's happening as I see it all around me (literally).  My hair feels as if it's lost about 1/3-1/2 of its former volume.  
• Hands and feet.  My hands are probably the most troublesome area as of late.  They are always SO ITCHY. Recently, I have been experiencing joint inflammation on my hands and feet. [Cause you know, skin inflammation just wasn't enough...].  Last week my thumb was swollen at the joint (see picture below).  It lasted a little over a week, but has mostly gone down.  Now the joints of my middle finger are inflamed, along with various other joints along my fingers and feet. My right ankle also has some weird things going on with what I assume are my joints as well.  I've experienced these things to a lesser degree before TSW so I don't know if this is part of the withdrawal process or early signs of arthritis.  Either way, I blame the steroids. 
• Neck and back of knees.  Along with my hands and feet, these are my worse areas.  They are often intensely itchy and have deep creases, discoloration and redness.
• Elephant skin.  Still happening on elbows, hands, knees and ankles.  If there's anything about withdrawal it's how sexy one feels throughout it. ;P
• Night sweats and odd temperature regulation.  Besides the terrible itch and messed up adrenal glands, another reason I wake up often is from night sweats.  I often become overheated  during sleep.  Sometimes I wake up drenched in sweat and have to change my shirt and air myself off.  Luckily this seems to be lessening in severity.  During the day, I sometimes find myself becoming overheated for no apparent reason.  I think it's a good sign of healing. My sweat glands are trying to finally get back in action.  Also, I'll take being a bit sweaty and overheated over convulsing with constant down-to-the-bone chills any day. 
• Lymph nodes.  The lymph nodes located around my pelvic are still swollen.  They may have gone down in size somewhat, but if so not by much.  I think they'll be swollen until the itching and scratching stops as they are likely continually fighting off threats of infection.
• Nerve pain.  My nerve pain has decreased drastically.  Thank God!  That was a horrifying symptom to say the least.  I pray it's not something I have to deal with much in the future, if at all.
• Insatiable hunger.  Does anyone else have this too?  I don't know if it's part of the withdrawal or just me, but I'm ALWAYS hungry.  I eat pretty much all day long.  Maybe I'm just trying to fill the void of not having a normal life?  Whatever it is, I hope it stops soon.  I don't want to be a fatty once I'm healed. 

Now without further ado... this month's photos:

September 15-16

Eyebrows growing in weirdly

September 20 [my birthday]

Compare to previous photo update to see major difference in size.

September 22

Deep creases and hyper pigmention.  I worry if this will go away after this is over.

Stubborn nail paint on my toe!
 I haven't painted my nails since June.  I won't dare use nail polish remover... eek!

Swollen joint

October 1st

A small semblance of normality

Today

Ankle after doing some scratching... tsk! 

Wrist

Palms and bottoms of my feet are itchy itchy ITCHY!

Until next time! ✌(✿◠‿◠)

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.