Tuesday, April 22, 2014

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

11 comments:

  1. Hi Jen, so sorry for the suffering you have to endure due to these potent drugs. It's such a desire of mine to see the medical world acknowledge the abuse of the topicals like the do the anabolic steroids and I believe they will do that one day.

    You have suffered a lot already in your pregnancy and your perspective is really one of a fighter who won't be defeated no matter what. Been there and as hard as it gets, I do have such a thankfulness for the little things like never before. Being able to wear normal clothes again and not look like I'm having a seizure from the insane itching makes me love life once again. I hope time passes quickly for you. :)

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    1. Thanks! Yeah, it's been a rough road already! But we're fighting!

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  2. You are in the thick of it, aren't you. I second Joey above ^^. Do whatever makes you feel better, even if just a little. If the shea butter helps, do it, if it doesn't leave it for a bit. Go with the flow and hopefully things will start looking up! Take Care, Louise (Josh's Mum)

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    1. If my mom weren't here I wouldn't be able to function.... I'm stayin as comfortable as possible!

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  3. You are a true warrior. Keep fighting Jen! Great that the shea butter seems to be working for you. A lot of the moisturizers (espcially location) I used aggravated my skin; so now I'm using olive oil. Stay strong!

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  4. I am in awe of your strength!! I don't know what I would find worse - TSW or the hyperemesis. At least the hyperemesis is acknowledged in the medical community and a PICC line can be inserted for those daily IV bags! But then again I always preferred pain over nausea - nausea turns me wimpy where pain I can somehow deal better with. Your strength through all your trials is evident! You will get through TSW and come out the other side shining! :)

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    1. Yeah, the throw up was worse, for sure!

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  5. So funny! Your faith, attitude, and sense of humor will help you through these tough times! along with the hubby and his soft long-sleeve shirts.
    Thanks for sharing,
    RAC/curgolf

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  6. Great blog and great article! I hope you'll get better soon. I'm a French mom currently going through tsw (10 months so far) and i suffered hyperemesis thru both pregnancies. A joke with my hubby is to decide which one is the worst (hyperemesis wins). I could have written the same celebrations except that i borrowed my mum's soft pajamas. Keep this wonderful positive attitude. You will heal!!!
    Valentine

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