Friday, April 18, 2014

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

6 comments:

  1. I'm sorry that you are going through this. My day 47 was very rough for me, when my flare was at it's peak. I did end of getting a little bit of a break around day 78. Hopefully you'll get one sooner than that.

    Glad to see you're trying moisturizer withdrawal as well. I didn't start that until my 6th month. I wish I would've started that sooner, I think it would've saved me from some pain.
    Sending positive thoughts your way!
    CatRStephens

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  2. I LOVE LOVE LOVE your blog!!! You really put TSW into words people can relate to! Reading this post I nearly cried because I remember most of what you are going through now. Even the pictures help - especially those behind you in this "game". I hated posting pictures but I know how much they helped me to gauge my TSW by seeing other people's pictures. You ARE helping others! BTW - my hair has essentially been in the pinned up state for the last year!!! ALL my pictures are of me with my hair back and a mess because with 3 kids and TSW, who the heck has time for hair?? Anyway - you are going to get through this! You will help others along their journey by being yourself and being honest. May God bless you and your family during this difficult time!!

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  3. It's so exciting to see bloggers unfollow comment on my blog! Cat, I have no expectations. I told everyone if I'm looking descent any time before 6 months, I'm lucky! The moisturizer withdrawal is definitely helping! ESPECIALLY with the stupid itch!

    Tracy, you're sweet! I've blogger for years off and on and love it! Such an outlet! I hate that I'm starting up again under these circumstances, but glad to he writing again! My hair is a HOT mess! Hahaha. It's starting to grow back from post baby fallout and on top of that I have oozing, crusty scalp and gray coming in. ๐Ÿ‘

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  6. I don't say this often, but listen to your husband...or at least keep his text in your mind. :-) He seems like a good egg! I'm so glad you are getting relief from the itching. That is the worst part of TSW for my son Brian right now (along with the insomnia.)

    I know it's hard to find the positives when you feel like crap, but you WILL get better, and you are 50 days closer to healing!

    May this Easter day bring peace, comfort, and blessings to you and your family,
    Rosemarie
    www.beyondtheitch.wordpress.com

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