Day 57: Really?!!!?? Just REALLY!

So, today was pretty rough.  Very painful.  Very oozy.  Incredibly uncomfortable.  A bit depressing.

My face felt like it had pink eye all over it.  It was awful. 

I took a salt bath and it burned.  

I started oozing and put bentonite clay in my face to dry up the gross parts....

I look disgusting.  I look pathetic and feel about that.

I decided to eat dinner.  Made my quinoa, chicken, and spinach.  

All home made.

I got about half way through and something tasted OFF!  Just OFF. I spit out my bite and found something that looked like a cockroach tail.  Chad was convinced it was a seed of some sort, but I couldn't get over it. I continued to pick and look around.  I took another bite and tasted the same thing... Spit it out and found more of it.  And then I puked.  I ATE A STUPID MOTHER EFFING COCKROACH AND IM PISSED ABOUT IT.

Just when I thought today couldn't get any worse.

It did.

PS. I have never even seen a cockroach in our house, so I'm assuming it came in the spinach.  

Tomorrow HAS to be better.

Day 52: Skewed Perspective With a Side of Churchy

Living through an extended period of traumatic suffering alters your reality.  Things that once were annoying, unbearable, or horribly upsetting, seem like drops in the bucket compared to the overwhelming pain and despair that you're currently feeling.  Your standards lower to access joy in your every day, and, oddly enough, those once horrible things become things you look forward to.

When I was pregnant with my children, I was profoundly ill.  I threw up all day every day no matter what.  The medical term was hyperemesis gravidarum, which means "extreme vomiting during pregnancy which leads to dehydration."  Yep, sums it up....

 For the first month with each baby, I tried EVERYTHING to relieve the nausea, but as time wore on and I became sicker and weaker, I succumbed to the sickness and became a vegetable.  I could no longer bathe myself because I would pass out.  I would sit ALL day in the recliner, watch the sun shift in the window, play with my ever growing toenails that I couldn't do anything about, watch terrrrrrrible tv,  and wait for my family to come home.  I slept with a sleep mask because I would throw up the second light hit my eyes.  I would go to the bathroom in the morning with the mask on, feeling my way to the toilet like I was blind because I would literally PUKE the second light hit my eyes.   I was SO grateful for the sleep mask!  How lucky that I found something that could hold off the puking.. Even if for just a moment!  Skewed perspective.  Then, on one of my ER trips, the hospital gave me these plastic rings with bags attached that I could throw up in.  They gave me extras to take home and I felt like the luckiest girl in the world!  No splatter!  No mess!  Skewed perspective!

How was I getting excited about puke bags?  I had nurses come to my home and had a PERMANENT IV that I walked around with.  How lucky am I to get fluids without drinking!!  Skewed!  The second I was well and had energy back, cleaning my fridge  was a treat! 

(I was 4 months into my pregnancy before I could stand the smell of the fridge without puking)

Skewed perspective!  All this to say, a lesson that comes out of these experiences is appreciating the every day things we take for granted.... Like, feeling well enough to cut and paint those caveman toenails.

TSW has been painful so far.  I've had so many crazy symptoms and sleepless nights and itching and OOZING and burning... I'm gonna stop myself here because I could write a book on all the physical discomforts.  The physical is overwhelming and often takes the focus of TSW complaints, but self worth is a huge struggle (especially in the beginning).  

As disgusting as you feel, and as horrible as you think you look, it's hard to maintain emotional composure and spiritual focus.  "Who are you when you look in the mirror and what do you look like when you aren't?  Do you look as ridiculous as you feel?  As gross as you believe you are?  Who wants to look at you?  You don't deserve to be looked at."  Before you can blink, those solid looks your self worth was built on morph into quick sand, and you quickly sink deeper and deeper into a pit of desperation, despair, and self-hate.  And you like being there!!?  It feels good because "you DESERVE IT.  Who would want to love someone like this??  You're disgusting!!"  This "cunning" voice convinces you that being alone and worthless is what you want because when you're alone, you're much easier to "devour" (1 Peter 5:8).  The pit is dark because where there is darkness there is no light.

I reached this darkness very briefly and early in my withdrawal and had to make some choices.  Choose to accept it or choose to change... Choose joy or choose despair... Swim or sink....rebuild on solid ground or continue to sink.  The choice may seem easy to outsiders.  Why wouldn't you just choose to be happy??  But it's not that simple,  it's complicated and hard.  The choice to stay miserable and wallow is comfortable.  There's no change.  No growth.  Because growth is scary.  The choice for happiness, the choice to rebuild, means leaving your comfort zone and working.  Changing who you are to the core at times.  And we're tired!  This illness is exhausting and omg what next!?   Now, I'm losing my hair!?  Really!?   Now, I have to do emotional work and spiritual replanting!?  Why me!?  Well, why not me, so  I chose to rebuild.  My looks will fade.  We're all gonna get old and look like a boot some day, so why not let go of those looks now and rebuild in Him.

I made this decision a week into recovery and it's still a work in progress, but has made this journey hopeful.  As for today, I will leave you with some of my perspective joys....

CELEBRATIONS:

• I may be in pain, but I'm not puking!  And I may be exhausted, but it sure as heck isn't as exhausting as my pregnancies were;
• I was able to hug my kid without wincing today!  This is HUGE.  I'm still looking forward to the day I can rub my face on theirs.
• My husband's soft, long sleeve, cotton shirts 
• My neck is no longer oozing!!  Call the damn press!  I applied Shea Butter and the next day it stopped oozing.  Coincidence?
• Laughing!  My face was so dry and swollen this weekend that my husband and I couldn't stop laughing at the faces I was making.  I couldn't open or close my eyes, I felt like I was wearing a mask.  We laughed so much because this isn't me, it's only temporary, and it will be over some day.

This is Day 49... SO swollen and SO dry and tight.

• IMPROVEMENTS!  While small, they are appreciated!  

I'm fully accepting that these improvements could be down the toilet with then next flare, but I'm enjoying them today.

The only difference between these days is the Shea Butter....  Not sure if it's coincidence or helping...

STRUGGLES:

• Sleep... It's getting better, but I still wake up several times a night. 
• Energy... Still all over the map.
• Temp regulation ... Get cold all the time and skin feels hot 
• Hair loss .. It's coming out in chunks.  Joy.

THINGS I'M MISSING:

• The park!  I'm almost ready to go outside... 
• Kissing my kids all over.
• Date night
• Normal clothes!  I want to get dressed and look cute
• Makeup....
• Doing my hair...

Happy healing, friends...

Jen

Day 50: Happy Easter

50 days!!!! I'm honestly SHOCKED time has gone by as quick as it has.  With as AWFUL as this whole experience is and has been, I'm remaining positive. 

Last night was pretty bad sleep wise.  Woke up at 1:30am and HAD to shower the ooze off.  Then I couldn't fall back asleep until 9:30 and slept upright, stiff, in a recline.  It was brutal, but it's OVER!  

CELEBRATIONS:

• I'm relearning to lean into Christ when things get rough...  NOT flee. 
• My MOM IS COMING!!  For 2 blissful weeks!!!  I'm so excited for the rest!
• I have help!  So much help.
• My husband.
• While the pain is still pretty upsetting, and my face is incredibly swollen and red, the skin is actually getting stronger!!!!  It is dramatically flakey with sandpaper skin, but that skin is getting stronger and healthier and is WAY less rough than it was!   I've learned that how it looks is NOT indicative of how it feels and is progressing.  ie it looks terrible today, but feels stronger and more reliable.
• I'm 50 days healed!  If massive improvement is a year, I'm 1/7th finished and if the worst is the first 3 months, I'm half way finished with the (as Tracy from ITSAN put it) "hot, red, wet, bat $hit crazy flaring" phase!  Hahaha. Could NOT have said it better.
• While this sucks, I am SO grateful that I'm stopping the steroids and am getting my life back.  I've suffered with unexplained fatigue for  YEARS and am certain the steroids played a part.  CERTAIN.
• I can shower again!  It was entirely too painful and emotionally upsetting to shower. I would often cry in the aftermath of what the shower did to my skin.  Now, it may sting for just a second, but eventually I don't want to get out.  

STRUGGLES:

• Sleep... I'm tearing up at the thought of my poor, sweet, sick self so exhausted.  It hurts how tired I am
• Tight skin.. I believe moisturizer withdrawal has helped heal the oozing phase, the tightness in my face is extermely uncomfortable. 
• Lashing out...I feel like I've tried to be emotionally strong, and I have for the most part, but when the exhaustion is overwhelming, all I want to do is sleep and can't, a fit has taken over. 

THINGS IM MISSING:

• What appears to be the most beautiful bluebonnet season in years.  I'm a photographer and LOVE bluebonnet pics!!   A bit sad I'm not game for going out.
• Spring!  My favorite time of year... Hitting the parks and having picnics before the Texas heat hits.
• Going out.. I want to go do fun stuff!  Sick of spending my weekends in bed. 

NEW PRODUCTS:

• Shae Butter ... Some of my skin that's past the oozing phase is ready for moisturizer.  Vaseline is the only thing I've been able to use, but it's made me itch at times.  I saw hellboi333 had some luck with it, so I ordered this and LOVE it!  SO creamy and soothing on my skin and it's yet to make me itch!   Have a test spot on my wrist where I test ALL products before applying them.  This is the before and after of 2 applications....

BEFORE:

AFTER:

Ok, so here's me today after a shower.

Skin dry and tight...face puffy...eyes swollen.  BUT less redness and stronger skin!  Can't stress that enough.

Happy healing everyone and Happy Easter!'

Jen

Day 49: Nnnnnneeeeeeck

I've discovered that the melatonin works to keep me asleep longer, but doesn't help me fall asleep.  It also helps me fall back asleep after a bit when I inevitably wake up in the night.

Today has been really painful. My face and neck are burning, stinging and aching. I THINK it's improving... But if I've learned anything in these past 49 days, it's to have NO expectations. My arms have greatly improved and I'll share that when I can muster up the energy to dig those pics off my computer. 

Here's what's driving me BATTY:

********WARNING!  GROSS PIC!!  NSFW*********

MY NECK!

(I like to use flash so it looks the most offensive.)  

ANGRY!  OOZY!! CRUSTY!!  GGGRRRRRR!!

The chin looks so gross, but I'd rather have it crusty than oozy. But that's not the worst!  My neck folds touch if I look below straight forward.  When they do, it oozes.  It's MADDENING.

I've also felt extremely tired and run down today after some descent sleep. 

Other than that, I'm doing pretty good.   Nothing's regressed, so that's all positive.

Happy Healing,

Jen

Day 48- TRYING to Not Be Disgusted

For those of you that don't know what's going on with me, see here and for a small list of symptoms to expect, see here.

So, this has been awful.  haha.  It's truly been one of the worst hells imaginable.  I debated on whether or not I could even post pictures this heinous, but I found great comfort in other bloggers in the same condition and if I can provide hope to just one person that they aren't alone, to hell with my self respect!  

I'm on day 48 since quitting topical steroids and day 39 of a series of endless flares.   Flare 1 started on my chin and worked it's way down my chest, shoulders, and arms.  Then slowly started to improve day by day.   I have remnants of this flare, but the major awful redness and swelling is gone.  Then a few weeks later had a mini Flare 2 on my face... Then a week later a massive Flare 3 on my face... My face is slllooooowly "improving."  I can tell the overall quality of the skin is getting better, but it seems to look more disgusting the more it's healing.  It's hard to get excited about that kind of change.  It also seems like the mark of improvement in one area marks the decline of another.  I can only hope I"m at the worst of it.

Here are my symptoms the last few days:

OOZE- this is by FAR the most psychologically disturbing aspect of this whole mess.  Because my skin is in such disarray from the sterroid usage (as seen here, the bankruptcy of cortisone from over usage of steroids causes the skin to lose it's building qualities and abilities ), it is trying to figure it how the heck to be skin again.  It's a big huge mess of sandpaper-like-skin flakes and raw, fragile, useless skin underneath.  And just a big mess of it.  A big, irritated, mess.  Originally, in the 3rd flare, my facial skin was SO thick and painful I didn't want to move.  Like one huge hive.  Now, the swelling has gone down, the skin has thinned out and I'm in the sad, tissue paper skin with lots of healing ooze just below the surface.  If I so much as look at it wrong it starts weeping.  Now, I have had some days where the ooze isn't chronically bad thanks to moisturizer withdrawal.  When the skin is TOTALLY dry, it doesn't ooze!  Hallelujah!  And I've also had some nights where my skin doesn't stick to my pillow case, but those nights are very few and far between.  SHUDDER.

Insomnia:  Boy is it bad.  Falling asleep is near impossible (See oozing) and I wake during the night WIDE awake and super aware of my skin.  I'll have nights where I can't fall asleep til early morning hours... nights where I fall asleep, wake up at 1 and am awake until 6 trying to get back to sleep... nights where it's all I can do to not itch and I can't relax because my face will ooze if I move.  The nasty oozing got so bad last night that I was an emotional wreck at 1:30 am. My sweet husband rubbed my back until I fell asleep and I actually stayed asleep for 5 hours!  A record.  I doubled the melatonin I took at 10:30, so maybe that helped staying asleep, but it sure didn't put me to sleep. Sleep aids I've tried:

Melatonin, Essential Oils, Magnesium.

Will be trying benedryl tonight.

Exhaustion:  Yes, I am tired.  I am physically and mentally exhausted.  It takes everything I have some days to just make my  kids food.  But those are the days I get no sleep.  Also, my body is taking so much energy just to  heal.

Itching:  I'm doing moisturizer withdrawal to help with oozing and healing and this helps cut back the itching exponentially!  I do still have moments where I need to scratch, but I've been EXTREMELY careful about not scratching my face!  Last night, I had a 5 second let down where something tickled my face.  I lightly tickled, OVER A TSHIRT, not even nail on skin, and my face TORE open as you'll see in the following pics.  It was devastating and seemed like a set back of my "progress."  Other than that, the itch, I would say, is minimal to moderate and totally manageable at the moment.

Skin shedding:  good grief!  I shed ALL THE TIME!  My skin is figuring out how to make normal skin and keeps producing massive amounts of useless stuff that sheds off like it's snowing.  The shedding has lessened over the last few days, though... So that's, good.  The moisturizer withdrawal leaves you looking like a fish with scales.   GROSS.

Sweating/steaming:  I have hot moments where my skin will just radiate heat.  I will wake up with a heavily damp shirt, like I steamed all night.  And the sweat SMELLS.  It's GROSS.  It smells like a rat cage and the whole room will smell like it on a bad night.  This is improving, but not gone away completely.  

Burning/stabbing/prickly skin:  at all moments of the day, there is an uncomfortable sensation somewhere on my body.  24 HOURS A DAY.  Either burning, stabbing, prickling, itching, SOMETHING.  On bad days, it feels like a bad sunburn being rubbed with fiberglass.  No, this is Not an exaggeration.  While the symptoms the last few days have been more tolerable, they're still there.  ALWAYS. 

Temperature regulation:  I will get really hot suddenly and then FREEZING to the point of shivers.  At night I get so cold I have to load up with blankets.  Then wake up SOAKED.  

Bruising:  I get these lumps under my skin from the healing that turn into bruises.  I have a few at the moment.

Depression:  I've managed to keep this at bay most days, but I definitely have desperate moments where I feel like I can't go on another second.  I have moments where I feel like a monster.  And I have moments where I feel worthless.  This is magnified with sleep deprivation.  HOWEVER, I have stayed positive on most accounts. I've kept my house clean and my kids happy.  I also have an amazing spouse.  I was so depressed after the pictures I took this morning, I texted my husband and here was his reply:

Totally right.  I have a LOT more than most and it's ONLY temporary.  My faith in Christ and my family have kept me strong.  I also know that there IS an end to this!  I won't suffer forever.


Ok... you ready??  Bleeechhhh.

********WARNING!  GRAPHIC PHOTOS!   NSFW ;-)  *********

This photo was taken last night when I couldn't sleep.  About 5 minutes before I woke up my husband.  I blacked out my eyes because they look pathetic haha.  It makes me feel better that you can't see my eyes... Like, this isn't me haha

This was this morning.  A small improvement over last night's awful nastiness.

So, I DID IT!  The grossest I'll ever look for all to see!  Like ripping off a bandaid.

Happy healing!

Jen