Day 116- Day 119 Roller coaster

I've almost completed 4 months and have come so far.  My final post in this 4 months will be a look back and comparison.  SO much progress.  On day 117 I had a really quick and powerful facial flare that lasted a day and was gone the next.  I put the pics I took of me completely annoyed and upset because that's how I was feeling.  Like it was going to be SUCH a setback.


CELEBRATIONS:

• Skin!  Definitely been improving all the way around.
• Been going out!  I've been starting to really actually live again.  I never thought I would see the day where I ran to the store or went over and had fun with my family, but it's here!
• Energy It will also appear in the struggles.. but I've been feeling a bit more like myself these days.
• SLEEP I'm by no means getting perfect sleep and still wake up itching when I've introduced certain foods, but it's so much better!  Going to bed is no longer a production...an orchestration of "dealing" with my skin and how I'm going to sleep.  I just get in bed and go to sleep.  How I feel comfortable.  This has been a HUGE blessing.
• Emotions I've been off social media for the last week and what a refreshing break.  I was getting depressed seeing all these people live life.  I'm also doing a bible study that is awesome! 
• Healing time!  I'm still getting flares, but the healing time isn't monumental like it was in months 2-3.

STRUGGLES:

• Energy  I still have days where I feel like I'm moving through jello.  
• Roller coaster  The ups and downs STILL, after 4 months, make me feel disappointed and upset.  I'll be making great progress then BAM (as witnessed) I'll look horrible!  It makes it hard to plan anything in advance.  I would say they upset me more now that I'm seeing progress.  When I was in ground zero, wet, crazy, nasty phase, I expected the worst, but now that I'm starting to actually look more normal and see real progress, setbacks are upsetting.
• Palpitations they've gotten actually a LOT better but they still occur and are OBNOXIOUS
• Wrist pain my wrist has been a real trouble spot and I"m starting to et these arthritic type pains in my wrist joint.  They are sporadic and out of nowhere, but they're painful.

Day 116







Day 117

I sent this to my hubby.. wasn't happy haha

Same pic with flash

I really thought this was gonna set me back some days...

Day 118

Day 119

NO MORE OOOOOOOZE

Encouragement

Well, this whole journey has been exhausting.  In about a week or so, I'll have completed 4 months.  I'm very proud, but I'm also VERY lucky.  I have FULL support of my family and would NOT have gotten through it without them.

I've tried to remain very positive throughout this process, but it's been hard.  You become so tired and the pain is relentless.  It's not always excruciating, but it's ALWAYS uncomfortable.  I've forgotten what it's like to not have a skin sensation like itching, burning, stinging, dryness, etc.  Sometimes, no matter how much you've prepared, you lose it.  Last night I attempted to fall asleep around 9:30.  I laid down, STILL, and closed my eyes.  FOR 2 HOURS.  And never fell asleep.  I wasn't itchy or uncomfortable... and I was SO TIRED (the night before I only got 4 hours of interrupted, itchy sleep).  My husband came to bed at 11:30 and I realized I'd been laying there awake for 2 hours.  I shot up out of bed and was FURIOUS.  I banged my hands on the coffee table and threw the remote.  He walked calmly out into the living room and I unloaded.  I couldn't understand it!  WHY!?  ALL I WANT IS SLEEP.  He looked at me and said, "You know what, I'm not tired either, let's forget about sleep!  Let's make some food, get in bed, and watch TV!  If you need to sleep in, I can go in late.  I did a lot of work from home this weekend."  Wow.  It honestly was exactly what i needed.  I grabbed a snack and he played with my hair.  After less than an hour I was asleep and woke up only a few times and fell right back to sleep.  And get this, our kids didn't wake up until 9:45??!?  We both got to sleep in!

Anyway, my family and especially husband have been so supportive.  On top of that, my sister shared this video with me that brought me to my knees.  It's the most beautiful song and has such a profound and impactful meaning.  It's about finding the joy, even in suffering...and that all suffering is meaningful.  He actually pulled from Job's "song in the night"...which, of course, I'm reading Job.  In the middle, there is an audio clip of John Piper that screamed at my heart.  He speaks directly from scripture and it really puts "suffering" in perspective.  I hope you enjoy it as much as I did.... (the following video is the story behind the making of the song....)

Day 114: GO AWAY WRIST

I HATE THIS WRIST.  It is itchy.  Painful.  ANNOYING.  I mostly hate looking at it.  I want to pick it all the time!?

Other than my wrist and the obvious skin stuff, exhaustion and blood sugar regulation has been my biggest trouble.  I have been SO tired.  Everything takes it out of me.  And I feel weak and hungry all the time.

DAY 114

GRR.

Noooot the best pic.... But this was me sitting outside with my girls.  Its been worse.  It's been better.

Left over from the water rash.

You can see some somewhat normal looking skin on my cheek starting to come through.

I got goosebumps right before this pic... Those pumps aren't normally there!

Cuts on the eye lids are gone... But I can't stand the pain of tweezing and the eyebrows are thinning so I look a mess.

Day 112: Camouflage

I went out!  For a few hours with my family.  I ended up having an itch attack.  Of course, those are exhausting.  My face didn't look great, but here was the outfit I planned for public....

DAY 112

Applied moisturizer

My Camo!  My mom made this shawl for me... and I'm in LOVE with it.

Before going out... Skin a BIT more calm.

Different light after we got home

Exhausted

Day 110: Typical Flare Healing and Shedding

This is typically what my face looks like after a flare....  When the skin settles, it's SO dry and flakey.

DAY 110