Month 3

(5/1/2014-5/31/2014)
(Day 62-Day 92)

Day 65-69

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 71:














Day 72-74

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 75-76

This day!  This beautiful day!  The first day in months that I have felt like a human!  I woke up exhausted, but got dressed and went outside with the girls.  My energy shot up and it felt amazing!  We painted and did crafts!  We made good meals and my baby took 2 long, wonderful naps.  It was truly an awesome day.  My skin looked and felt great!  I even washed and blow-dried my hair!?  Haven't done that in I don't know how long.  When I took my hair out of the pony tail I looked like a 60 year old drunk man's mugshot.  One who only has long hair because he stopped taking care of himself.  Nick Notle-ish  It was matted, dried, disgusting, and had the weirdest shape.

Around 6 my energy had plummeted.  I used my reserves to make dinner and help with bedtime.  We went to bed and I felt like myself.  I laid down without worry that my skin would ooze.  We watched a movie and I wasn't even itchy.  I felt great!  What a glorious day!  In the back of my mind, I prepared for the next day.  I did not think this was the mark of continued improvement.  I somehow knew this was just a God given reprieve of my suffering and it was well earned and well appreciated.

Here is how I looked most of Day 75....



A little red... a little flakey... but doable!!

Here is how I look today, day 76.....




 Oh, you heard this, too?

 


Anyway, day 75 also brought a funny experience with my daughter.  She calls the white flakes on my face "dots"...  this was our exchange:


Daughter:  Mom, can i draw you??
Me:  of course!

Complete with Dots

5 minutes later...

Daughter:  Look!  I drew you all better!  No more dot-itis! (said like Bronchitis but with dot)



I think that is what it shall be called from this day forward... Dot-itis.

And can you even handle how cute my kids are.  Ugh. These few days captured a typical flare cycle.  And each time i have a flare, it gets less and less intense and oozy.  This time, I had very little oozing.  My ears are still troublesome and so is my neck, but it's becoming less and less.  I believe that the worst may be over.

A typical flare starts with hotness and swelling.  My skin will just feel hot and thick.  I'll typically feel sick as well.  Very run down and uncomfortable.  My sleep is interrupted as well.   Day 76 was the start of it and day 77 was still swollen.  Then, as the swelling subsides, the flakes and dry skin increase.  Showering makes me more dry, so I don't wash my face very often.  I wash it with a washcloth and distilled water.

I've gotten some questions from some people, so I'll answer them here:


Why don't you moisturize?  Well, to be honest, moisturizer makes me itch like CRAZY.  It makes the flakey skin soft and just sits on my skin like mud.  Blech.  It also irritates the skin a lot.  When you have ooze, moisturizer is just fully out of the question.  There will come a time when I moisturize...and I'm close to that time..but not quite.

Have you tried __________?  Yes.  haha.  And Topical Steroid Withdrawal isn't like regular eczema.  Your skin is in recovery from being completely depleted and is basically going from atrophied to normal skin again.  It's a grueling process that just takes time and patience.  Dr. Rapaport, the doctor who discovered this, will tell you that all you can do is make the patient comfortable.

Would getting out of the house help?  Aren't you getting stir crazy?  Yes and no... My energy is SO tanked that it often takes everything I have to just get through the day.  The thought of going out and being "on" is truly overwhelming.  I get outside in the sun when I can.  I miss people and doing stuff for SURE, but a dream day for me is just to be able to veg and not do ANYTHING.  Just rest.  But I'm still in the worst of it, so that's understandable.  The exhaustion feels like when I had mono in my teens.

Are you better?  This is a hard question to answer on a daily basis because "better" with TSW doesn't always mean looking and feeling better.  I'm always getting "better", my skin is always improving, but it's not linear.  It's like a roller coaster of ups and downs.  I may be feeling on top of the world one day and the next be feeling like total crud (Like here).  Overall, yes, I feel better.  My skin feels stronger and stronger each day and the mother loving oozing has subsided for the moment.

How are you doing it??  Honestly, without Chad I'd be up a creek.  He's been my savior.  I've also had a LOT of help.  My mom came for 2 weeks and the relatives I have in town offer help when they can.  Also, i just am.  I have no choice.  It's something I HAVE to go through to be well.

Ok, so here are the last few days in pics...



Day 77

This stupid wrist.  It was NOT this bad until I put Mario Badescu Control Cream on it a few days into withdrawal.  The control cream secretly had steroids in it and they have since stopped and changed their formula.  As compensation, they offered a Mario Badescu gift card to everyone who used it.  REALLY?

 

Still super swollen and uncomfortable.  

Day 78 

The eye is better!  A huge improvement from the nasty wound from a few days before.

 

As beat up as I look, I'm seriously so grateful because it's dry. 

Drying up... and starting to heal. 

Day 79

These shots are outside, so the light is a little different.   It doesn't emphasize the redness as much, but does the flakes.

I peal ALL DAY LONG.  My bed has to be shaken out every night because it feels like salt in the bed from dead skin.  It doesn't feel dry and the flakes are actually super soft, unlike the sandpaper skin I was dealing with before. 

 

So, to answer your question, NO, I don't want to go anywhere haha

STRUGGLES: 

• Sleep has been slowly improving but still a struggle to fall asleep.  
• ENERGY.  Feel like I'm dying most days.

CELEBRATIONS:

• Less ooze
• Fares getting less intense.

Day 81

Well, these last few days have seen great improvements, so I'll start with celebrations:

CELEBRATIONS:

• Sleep!  I've been able to fall asleep and go to bed when my husband does!  I fall asleep after him, but it's been before 1am several nights!  Also, I sleep longer stretches!  4-5 hours!  HUGE!  I was working with 2 at the max and then being up for 1-2 hours between. 
• Ooze!  had very little the last few days.  The skin on my  neck feels so much stronger and less fragile.  My ears have since peeled and feel like somewhat normal skin again, but I have a feeling they aren't completely done oozing est.
• Skin sensitivity  For the longest time, I couldn't stand the thought of touching my face to anything else.  My movements were dictated by my stupid mask face. The last few days I have been putting my face on my kid's faces and laying it on the pillow straight without anything in between me and the pillow.   A few times I have even done it without thinking or hesitating.  
• Sleep positions!  I am now back to using one pillow and using it the way I want to for comfort. The last few days have NOT been riddled with creating a sleep position around my ooze or pain. (Two pillows, rolled up towel around neck, try to fall asleep on back so face and neck don't crust to something, sleep stiff as a board and wake up sore...etc)  I no longer have to be elevated and no longer need a towel to put around my neck so I don't move in the night.   I just get comfortable and go to sleep.  SO many people take this for granted, i'm certain.   Tonight, when you go to bed, think about me when you're getting cozy... haha
• Mobility... for the longest time, I could hardly move my face.  Now, I move my face as I please.  I couldn't smile or make any gesture because the skin was SO tight.  Now, i don't really think about it.  I can also move my neck again without my skin tearing (for the most part... there is still one spot on my neck that will tear if I stretch my neck too far...)
• Temperature Regultion

STRUGGLES:

• Energy... This is my biggest complaint.  I feel like I have mono.  I am SO tired.  
• Food... Some of you know that I have been eating the SAME THING FOR THE LAST 2 PLUS MONTHS.  I stuck to the same diet because I knew it didn't inflame my skin and I didn't have to think about it.  Well, the last few days I have been experimenting with LOTS of new foods.  I'm having trouble with some causing inflammation and itching.  I made an awesome ranch dressing with Macadamia nuts and it made my ears SO hot and itchy and made me literally feel like I was going crazy.  It's hard to describe but it was awful.  
• Sweating

Ok, here are the pics from today:

I started putting calendula cream on this spot and it's given great itch and dry relief.  Who knows if that will continue. 

Sorry for the up the nose shot, I'm too lazy to crop.

Still a bit torn up, but HUGELY improved.

 Here's a quick comparison to see the improvements over the last 3 weeks:

Slow but steady...

Skin very much stronger and more reliable...  Day 60 is why I'm perfectly comfortable with what I feel like today...





Day 83

I started getting sick.  And also started flaring up the night before.  CLEARLY from the way my neck is beaten up, I had a SCRATCH fest the night before.  I couldn't sleep and just felt hot and stickery all night.   Although, I've been sleeping SO much better lately!

Man, I had an itch fest... I'm torn up.

Day 85

SICK.  Didn't leave bed all day.  Skin felt terrible and so did I.  Had fever.

Sick.  Super sick.  Fever and TONS of snot.

Looks like such a huge setback... 

This thing is so pesky.  

Day 86

ON the mend skin AND sickness wise.










As the day progressed I started feeling so much better!  So much so that I went with my husband to pick up our girls.  I didn't think my skin was looking too bad... and then I saw the flakes in the car mirror... YIKES hahaha  The dry skin makes me looked SO washed out.  Almost dead.







I came home and showered and applied Shea butter...

 









Day 88

Not really sure what was join on with that eye... it just puffed up and got red out of nowhere.

Day 89











Day 90

Hey bald spot you suck

CELEBRATIONS:

• SLEEP  I had a rough night in there, but overall I've been getting normal people sleep!  Going to bed when the hubbie does, sleeping and maybe waking up once to turn over and go back to sleep.  It's been really amazing. 
• Improving faster  It seems like I'm improving faster after each flare.  Still slower than I'd like, but faster than the 2 month craze.
• Energy These first few days were HORRIBLE, but the last few started to pick up to where I started feeling somewhat normal.

STRUGGLES:

• FLAKES  Really tired of the cycle of puffy red and flaky dry skin.  So old.
• Oozing ears  For some reason my ears got really bad lately... super annoying.

Day 91:

Moisturizer is starting to feel good and make improvements, but it tends to make me look more puffy and red.

Day 92

Today was the day I braved the world.... For the first time in FOREVER I actually left he house and was gone all day!!  Felt so good!  I actually had more energy when I got home.  Maybe it was the vitamin D.

It's kind of a long story, but basically my husband and I ended up hanging out for HOURS waiting for a tow truck.  It wasn't the most fun day, but so awesome that I could be there to help and support him. It would've SUUUCKED to do it alone. I also ate Chick Fil A... The fries weren't fresh, but it was nice to be able to eat on the go. (I ended up having a hot and itchy flare around 4 am...)

 I looked like I was flour dusted and ready for a deep fryer, but I felt good!  This is what my skin looks like with no shower and no moisturizer.  haha.. I didn't have time to shower before I left the house.  Long story.  I will say, though, the closer I am to a shower and if I use moisturizer my skin burns more in the heat and when I sweat.  I ended up feeling pretty pain free most of the day.

These pics are obnoxiously close and closer than anyone really gets to my face, but I wanted to give a good picture of what I saw in the mirror.

YEESH hahaha  Feels so much better than it looks.  

To'e up...

Add caption

CELEBRATIONS:

• Energy!  HUGE.  I feel like myself again today.  
• 
  

STRUGGLES:

• Dry skin Clearly this needs no explanation 
• Ooze It's been better behind my ears!
• Palpitations   had them a lot off and on the last few days.

Month 4 --->