Friday, September 13, 2013

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.

Monday, September 2, 2013

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