Day 72- Day 74 Drying Up

These few days were marked with discomfort and sleeplessness, but...BUUUUTT...the ooze has dried!??!?  CALL THE MOTHER LOVIN' PRESS!!!!  My neck is no longer dripping and itchy.  The only place that really is still plaguing me ooze wise is my ears, but whatever...

So, pictures....

Day 72:

  

That STUPID eye!?!?  What the heck.  SO ANNOYING.

My ears are so annoying!

This doesn't bother me because it's DRY.

Progress... the neck is drying up.

Dry, but hideous. 

It's dry now, but the back of my ears just ooze all the time.

This part of my wrist was a small spot and two weeks into my withdrawal I applied Control Cream by Mario Badescu.  They secretly added steroids and I realized it after I applied it ONCE.  It spread to look like this after ONE use.  

TO'E UP!

 Day 73

Day 74

This is why I don't go in public.... I am, however, getting sun now that the ooze has gone!

STRUGGLES:

• Sleep
• dryness
• FLAKES (My bed feels like it has salt in it from all the dry skin...I have to shake out the sheets or change them every night)
• Energy still super inconsistent.  I will have days where I can't even move and days where I can clean the house.
• Eating  I find it difficult to eat enough.  I feel painfully and weakly hungry often.

CELEBRATIONS:

• OOZE!  I pray to God that phase has ended... I just can't take the ooze.
• Mobility I can now turn my neck without the skin tearing... I holla!  I can also move my face!  It was so dry and thick that I couldn't even make an expression.  I had to eat with a baby spot so my skin didn't tear
• Skin strength my skin will get hot and inflamed and swollen...then will dry out and flake off.  Each time it does this, the swelling becomes less and the skin that forms is stronger.

Day 71: Mother's Day (belated) An Open Letter To My Mom

 Dear Mom,

How do I thank you?  I've started this letter a bazillion times and no words carry the weight of my gratitude, so I'll just start at the beginning.  It was day 46 of my withdrawal and I knew things were getting bad.  Well, things WERE bad.  Chad and I had no idea how we were going to manage moving forward.  I was becoming increasingly less mobile and alive.  My days and nights were blurring due to insomnia and my body clock switching.    I no longer slept at night and falling asleep before 4 am was near impossible.  I also stopped sleeping longer than 2 hours at a time, so waking up with the girls at 8 was quite overwhelming on my system.   Moving was a chore, I could't hold Leah without wincing in pain, and making food for myself, let alone Maddie, felt insurmountable.  I'm pretty sure  at least one day passed where Maddie ate nothing but packaged snacks from the pantry.  All my strength went to opening a package and preparing a bottle or two.

April 16th.   I can recall the day vividly,  and yet it was a blur while it was happening.   It was the third night in a row with little to no sleep and I was on day 2 of a pretty gnarly flare.  Too physically and mentally wiped to take on any real mothering, I locked us in Maddie's room and let the girls do as they pleased.  My swollen, inflamed skin kept me from laying down, so  I sat up on Maddie's bed, shoulders hunched, head hanging low, tears falling on the quilt.   Maddie's millionth Youtube selection blared from the iPad in her tent and I watched Leah pull clothes one by one out of Maddie's drawers.  What would take an hour to fix took her 10 seconds to demolish.  Tears.   I stared through her and cried, contemplating how much worse it would get.  I was just over halfway through with what they say is the worst....if I was lucky.

My intention for calling was to vent.  Talk to someone who didn't need something from me, but the second you answered my heart exploded.  A puddle of tears and pathetic blubbers.   I don't even think I got a sentence out before you offered to come visit.  Despite EVERYTHING you had going on at home, you dropped it without hesitation and that set the tone for the visit.  You would know exactly what I needed when I needed it and would do it without hesitation.  And more.

As horrible as I felt physically, you doubled in filling me emotionally.   I never had to tell you what I wanted or needed and when I did you never questioned.  I slept til 4pm, "Are you hungry?"  I yawned, "Do you need to lay down?"  I completely disappeared into sleeping all day and resting when I wasn't.  I stopped all of my mother responsibilities and you picked up where I left off.   My girls were loved!  And fed!  And taken outside!   And Maddie was interesting to someone!  And someone who sounded like me and loved like me was kissing leah with abandon!!  It was truly like I was there in my dreams.  On top of ALL of this, Leah happened to get sick.  Like, miserably, up all night puking, rag doll limp, constant holding sick.  Through ALL of this...nursing me around the clock, mothering maddie, and then nursing leah 24/7, you NEVER complained.  You never wavered.  Even when you yourself got sick you happily served.  I can't tell you how amazing that was to have.

As fate would have it, I had my lowest moment while you were here.  Day 60 will forever go down in the books as one of the worst experiences of my life;  the loneliness of being awake in the middle of the night dripping wet with ooze,  the throbbing and excruciating pain, the maddening itch, and the depression of no longer feeling human was crippling.  You came into the living room the next morning and found me in the chair where I'd attempted to sleep the night.  I shuffled back to bed and tried to sleep.  I texted when I woke up and you came to talk to me.  When I bawled, you cried with me.  You didn't offer me any consolations, just listened.  And read my cues for the green light to hug or touch in any way.  I will never forget what you asked me, "Can I sit in here with you?"  When I responded yes, you were truly excited.  You ran to get your yarn and sat in the bed next to me.  I felt so loved.  I thought I wanted to be alone in the dark, but you knew better.  I wanted you, there, with me.

Another thing I noticed was that you never inspected my face.  It didn't feel like you were trying not to look, but that you didn't see it.  You saw me.  I would ask you to look when I was ready and you would almost appear shocked.  I needed this.  So much.  

The night before you left was the most emotional I remember being in years.  This includes 2 pregnancies and several diets!  I felt like a piece of my insides were being ripped out.  I couldn't put into words or clear thoughts what having you there meant.  It was like I was feeling everything before I actually made sense of it all.  

Mom, this trip has been one of the most physically and emotionally healing visits I've ever had.  I felt understood, cared for, loved, and liked.  I don't know what I did to deserve a person like you as my mom, but I am forever grateful.  I would go through all this pain over again to feel the love  I felt from you those 2 weeks and pray every human on earth has a chance to feel the same.

I love you wholly,

Jen

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

It hardly seems fitting to put nasty pictures after pouring my heart out, but here we go.  

Day 70:   the night before Mother's Day was a long and itchy one.  I finally took Benadryl to try and sleep at least a little.  The weekend was spent with just the husband and it was relaxing and amazing.  He cleaned the ENTIRE house.. Did ALL the laundry.  And bought me gorgeous flowers. So grateful.

Day 71:

Day 65- Day 69 WARNING GRAPHIC PHOTOS

I just sat down at my computer and sifted through the last 2 months in photos.  I looked back at the beginning when I thought I looked horrible and WISH I looked like that today! haha  I also looked back to photos from 10 days ago and got a stomach ache.  The one I posted didn't hold a candle to the ones I have on my computer, but I can't even deal with them yet.   My body physically reacted to the point I had to stop looking.

Last night, day 68, was bad.  The oozing started once again on my neck and it was so itchy and uncomfortable that I couldn't sleep.  Though, this flare was better than day 60 .. Day 60 has honestly given me a bit of PTSD.  Last night (or early this morning) I sat in the recliner with a fan on me for some time and put an icepack on my neck.  After about 10 minutes, I pulled the icepack off and my skin came with it.  Yes, my skin peeled off onto the ice pack.  Then it was so uncomfortable and itchy.  FINALLY, at 6am, I fell asleep.... and on cue, leah woke up.  I ended up getting some good sleep because Chad went in late, though.

Before I get into the garbage, Maddie (my almost 4 year old) asked Grammie to take her to get me something for mother's day.  They went to old navy and got me some comfy pi's.  This is the shirt she picked out.




I needed this.


Ok, here is a recap of the last week...



Day 65

I wake up looking like a version of this most days.  Just lovely.

Day 66

The flakes on my shirt..on my bed... on my couch... they're a common occurrence now a days.

Day 67

My neck gets SO stiff from holding it still and having no mobility from the dry useless skin.  Causes headaches.  Every once in a while I HAVE to turn it and pop my neck.  This is the result.

Day 68

I woke up and within an hour my eyes were itching SOOOO badly.  All I could do is ice them to stop the itch.

My neck itches SO badly.  It went from dried to oozy in a matter of minutes.  SO repulsive.  SO annoying.

Really ready for that cut on my eye to go away.  ALL of this because of steroids.

Basically no skin on my neck.

Day 69

I'm seeing improvements and strength in my skin, but it still looks TERRIBLE.  ALL OF THIS IS BECAUSE OF TOPICAL STEROIDS!!!  THAT THEY DOLE OUT LIKE CANDY!!!  It's criminal.


CELEBRATIONS/IMPROVEMENTS:

• It's not day 60!   
• My girls are at their aunt and nana's this weekend, so i can rest and spend time with the hubs. 
• I'm 2 months in! 
• I'm either in a calm period of a flare or the flare is ending, so at this moment, I feel not terrible.
• Mobility  My face is still stiff, but not like it was.  My eyes were SO thickly crusted that I couldn't close and open my eyes appropriately.  I also had to use a baby spoon because I couldn't open my mouth enough for a regular utensil.  I still can't move my head fully, but more than I could.  And I can make more expressions than I could.

STRUGGLES:

• The ooze is back...although, not at the moment.
• I don't see the end in sight.  It's really difficult to wake up day in and day out seeing a new bad with the good.  It's so frustrating.
• Sleep.  Before 3 am WON'T happen for sleep without meds and they give me headaches after several nights.
• Energy... SO low.  Feel exhausted all the time
• BO... So disgusting.   Typically only when I'm flaring.

THINGS I'M MISSING:

• Real clothes.  I seriously want to get cute and go out!  I want to wear something other than PAJAMAS.
• Playdates... Just want to go out with a friend and their kids...
• DATES
• Laying my head on the pillow... if I put my face on it I swear and itch.  Truly, it's torture.
• Going to sleep without anxiety...because do the discomfort and waking up itchy, I don't want to sleep.
• Waking up to the same face 

Happy healing...

Jen

Day 60- Day 63: 2 MONTHS and My Darkest Hour

(I started writing this post on day 61, but never finished....It's currently day 69.  I've had a rough night, but i'll blog about that later)

I've made it two months + of hell. TWO MONTHS!  Gotta admit, I'm pretty proud.  It has been one of the hardest, most bizarre, and unpredictable things I've ever been through.  Ups and downs and ups and downs.  Waking up to a new face every day (one equally as gross in a different way).  Not knowing if simply laying down will trigger ooze or itching.  Will my face crust to my pillow?  Opening my eyes and feeling my face hot, swollen, and irritated.

The last few days, by far, were the HARDEST.  The most excruciating.  The most upsetting.  I can't imagine it being worse (well, I can!  My mom not being here to help me would have been worse and I will get into my mom's visit in another post).. From the most painful day so far to the sleepless and uncomfortable nights, to the oozing, to my 10 month old teething with a stomach bug and earache it was horrible.  And, yet, I've said this before. "How can it get worse!?"

The strange thing about TSW is that it is NOT your typical trajectory for healing.  You don't get horrible and then slowly heal.  It's a roller coaster of physical and emotional ups and downs and steps froward and steps back, with the steps back being MUCH quicker and more intense than those cherished crawls forward.  It's like a blow to feel that blood starting to get a little heavier...the skin getting a little hotter...and itchier...and thicker... and here comes a flare.  A totally depressing blow to the psyche.

So, let's get into it.

Day 60 THE WORST!!! ROCK BOTTOM:

Oh, day 60.  It started in the middle of the night.  I couldn't sleep and the itch came on.  This was an intense itch on my face that NEEDED to be addressed.  I laid in bed WILLING myself not to scratch.  Praying to take it away!  Praying to just GO TO SLEEP!  But I couldn't.  It won.  Off to the bathroom.   I laid a thick t-shirt over my face and scratched the t-shirt to try to quench the unnerving and overwhelming URGE to scratch.  I didn't rub the shirt because I didn't want to break the skin and I only applied as much pressure as it took to quell and not do any real damage.  I lightly scratched and my eyes rolled back into my head.  Like I'd waited years to finally do it.  I'm assuming my leg was thumping, as well, but I was so consumed I can't be sure.  I scratched my chin...my cheeks, my eyes...my forehead.  Not only was it the itch, but I wanted to FEEL  I spend all my days touching what feels like a mask.  For several weeks my face felt like sandpaper to touch, but lately it's felt like a textured, semi-gloss painted wall.  Somewhat smooth, but bumpy and certainly not my skin.  The actually sensation I feel on my face is dulled.  I CRAVED to feel sensation that I controlled that wasn't burning, prickling, stabbing... Uh, I digress.

When I finished scratching and felt like I could go on with life without being consumed by this itch, I peeled the shirt off..slowly...  Like, literally PEELED the shirt off and looked down to see most of my skin still on the shirt.  Patches of skin that were on my face were now on my shirt.  Trust me, I did NOT go to town on itching!  The amount of pressure I applied in NO way warranted my skin coming off... it was just ready.  What was left were open wounds on my face that throbbed and ached and burned and stung.  I hung my head over the bathroom sink as my face pulsated.  After a few seconds of agony, I realized I was so consumed by the throb and nauseating pain that I was drooling.  My hands shook.  I moaned.  It SUCKED.  The physical pain alone would have been enough to make me feel desperate, but looking up to see the wreckage was devastating.  Oh, I was sad.  Now what?  I have no skin!?  Will it get infected!?  NOW WHAT!?!?  What do I do with this mess????

I assessed the damage and took shameful photos.  (I've noticed in most of my photos I'm biting my lip in pain.)  I didn't want infection, so I used a washcloth wet with distilled water and colloidal silver and laid it on the open skin.  BURN BURN BURN STING STING.  By this time, my hands were violently shaking.  I'm pretty sure I was in a bit of shock.  My heart was shaking my chest.  I regained some composure and hobbled to the bedroom trying not to wake up Chad (It was 4 am at this point.)  I quietly sat in front of the fan on my side of the bed and cried without noise as the aching amplified by the wind.  After about 20 minutes, the pain had dulled and the ooze had dried.  I no longer had open weeping skin.  I stayed the rest of the night in the recliner with a fan blowing straight on my face so I could sleep sitting up.  Laying horizontally added blood pressure to my face and the throbbing intensified.  I barely slept.

The next morning's sleep deprivation hangover added insult to injury.  If my mom hadn't been there to nurse my body and soul, I'm not sure what I would've done.  I most certainly couldn't take care of my girls.  She sat on my bed and knitted in the dark room because I didn't want light.  Some people may say that light was what I needed, but the light on my wrecked outsides cast a spotlight on the sad and painful insides.  The light was the only power I had left.  If they cant see it, I don't have to feel it. The inspections, the comments, the gasps, the frowns... they're expected, but emotionally heavy on a day like that.  I called Chad and bawled.  Indecipherable bawling and apologizing for bothering him at work and for being this train wreck of a wife.  Day 60 won.

Strangely, the healing picked up after day 60 and those open wounds seemed to heal up quickly.  By day 63 I was feeling completely different.

Day 63:

CELEBRATIONS:

• My mom... I called her a few weeks ago having what I thought was one of the hardest days I'd have and she got a ticket and came out.  The timing couldn't have been more perfect because this last week has been impossibly trying and painful.  BOTH of my kids were sick and my littlest has a stomach bug and wants to be held constantly.  I couldn't have done it.  (Will blog her later)
• It's not day 60.

IMPROVEMENTS:

• Ooze ... As of right now, the ooze has calmed down a LOT.  The last several days, however, were horrible with the ooze...  Just horrible.  

STRUGGLES:

• Zingers ... Yesterday I started getting these nerve ending spasms in my skin.  It feels like someone pinching you really hard, really quickly.  
• Sleep:  come on... I just want sleep.

THINGS I'M MISSING:

• Outdoors
• routine
• normal sleep hours.