Saturday, January 3, 2015

2014/2015

I can't say 2014 was the hardest year of my life... that title still belongs to the year 2007 (Maeve's year). 

I am in such a strange place- physically and emotionally.  It's just weird.

There are days where I feel fine, and I drive; grab the kids smoothies on the way to dance.  Pick up groceries and cook a normal dinner.  We sit around the table and talk about the day.  Laughing.  Realness. 

And then there are days I don't see daylight.  I'm in my bed, under the covers.  Rummaging through my brain, trying to find out why this is happening to me.  Didn't I already pay my price?  Didn't I already lose it when I had the "great depression" of 2007 after Maeve was born?  That wasn't enough?  Because in hindsight, its still not anything glorious or heroic.  It's plain ugly.  It's medicine and horrible thoughts and dark clouds. 

I had an appointment with my therapist the other day.  He's great- let's me talk and talk and talk, slips in a few helpful tips and always assures me that "THIS IS OKAY."  I need that voice- someone to constantly tell me, "You are okay.  This is okay.  It will all be okay."  At my appointment, I reflected back on the year;

February- it was such an ordinary Sunday.  I remember it was Sunday because the kids had school the next day and when I had realized I hadn't peed that entire day, I shook with some panic.  Immediately went into the bathroom, and tried to go to the bathroom.  And that's when I realized, I had to go- but I couldn't.  I couldn't go pee.  I called my mom and dad, and with my history of kidney and bladder issues, they said I better go into the ER, because not peeing for a day can't be good.  I can't really remember that trip to the ER very well.  They have all blended into one now, with a few significant ones poking out here and there.  I think they put in a foley catheter.  And told me to follow up with my urologist.

I couldn't get into the urologist for a few days, and I remember lying in my bed, listening to life outside the door, my foley bag hanging at the end of the bed, thinking "OH MY GOD.  CAN IT GET WORSE THAN THIS?"  I didn't want my kids to see the "pee bag."  So I had Ryan keep them out;  they came in at random times to say goodnight, or to give me pictures.  And then they'd slip back out the door, my room dark again, and their life, their beautiful, loud, colorful life would go on.  I'd cry but, at that point I had hope.  I had a urologist appointment and he was going to fix this.

The day of my urology appointment could be marked as one of the worst days of my life- for several reasons.  The first being, my urologist at Mayo came without a heart.  He might have had a beating organ, supplying blood to other organs, but there was nothing else in there.  Without an ounce of sympathy, he said I needed to learn how to self catheterize and make an appointment with neurology because this is MS.  I cried so hard I couldn't drive home from Jacksonville.  The nurses had to put me in a room they weren't using so I could try and get myself together.

I never saw that doctor again.  Though I did write a lengthy letter to Mayo, explaining they had a POS working for them.  I still haven't heard back.

Somehow I got home and had arms to collapse into.  And thus began my year.  My year of collapsing.  My year of pain, doctors, embarrassment, confessing, embracing.... I could go on for a long time.

I switched urologists and found that my new urologist didn't have much of a bedside manner either.  Maybe my expectations are too high?  But can you at least look me in the eye when you say, "This is classic MS, you're going to have to get used to cathing yourself."

A super sweet nurse showed me the ropes on cathing.  And as humiliating and embarrassing as it was, she had an angel heart, and made me feel like I was normal.  This was normal.  This was okay.  I'll forever be grateful for her.

With the cathing situation under control, it was time to check out my head. 

I found my neurologist via the phone book.  Dicey, for sure.  But I lucked out.  I won't say his name (I still see him) but he's been one of the most compassionate people I've met on this journey.

Immediately he ordered an MRI of my neck and spine.  All was clear.  I remember texting "my group" (family, close friends)- IT'S ALL CLEAR!!! I DON'T HAVE MS!!!!!!!!!!!!"

I met back up with my neurologist who said it was a great sign that my scans were clear.  There was still no set reason for the bladder issues, but he gave it a name; "A neurogenic bladder" and I feel really fancy when I tell it to ER doctors and  nurses.    It's WAY better than "I can't pee."

Self cathing is so strange.  First let me tell you, it's not nearly as bad as you probably think it is.  Second, you could do it if you had to.  Third, it's an awesome way to introduce bacteria into your bladder.  Fourth, if you suffer from infections of the bladder and kidneys, cathing is like blazing a trail for bacteria.  I found this out quickly.

And let me also add, it doesn't matter HOW sterile and clean you are, if you cath, you are introducing bacteria into your bladder.  THE END.

By June-ish, I had lost count on how many times I had been taken to the ER with a kidney or bladder infection.  I was/am officially a frequent flyer at the ER.  Thankfully, when I go into the ER, I'm usually sick enough that I don't care.  But in my quiet, at home moments, I definitely think about what has become of me- the sickness- the pain- I can't count the number of doctors I've seen, the number of IV's placed in my arms, the nurses who've cried and prayed with me.  It's a blur of hospital madness.

In June, I was sick- like SICK, with a kidney infection.  I knew it.  My back ached, and I was running a fever.  The pain was nauseating.  But it was Maeve's last performance in her mermaid ballet show.  I spend the majority of the show sleeping on a couch in the back dressing room.  When it was Maeve's turn to dance I'd sit in the dark wings, watching my girl shine.  There was a sense of accomplishment when that recital was over.  Because I had been there-  I had watched every performance.  I had packed snacks, done make up, killed the ballerina bun and took stains out of tights.  I was a good mom that weekend.  And the moment that last recital was done I waved my white flag.

Someone (I can't even remember?!) took me into the ER and that marked my first hospital stay.  I had a bacterial infection in my kidneys.  I couldn't walk into the ER- Ryan (I'm assuming, haha) wheeled me in.  My blood pressure was low, labs were off and my most vivid memory of that day was my doctor pulling up a chair and telling me I was going to be admitted to the ICU.  I was drugged up.  I didn't care.  But I knew the ICU was for really sick people. 

I spent five days in the ICU- my kids weren't allowed to visit.  And I had more antibiotics than I think I've had in entire life.  Bag after bag was hung.  Drip, drip, drip, into my arm... some of the antibiotics made me vomit.  Others made me itch.  But the nurses were quick with the dilauded and zofran, keeping me out of it, allowing me to hold it together.  My mom cried.  My dad wanted to transfer me to Jacksonville.  I felt like a child; my parents talking in low voices with the doctors.  Me, lying there, knowing no matter what, I'd be safe as long as my parents were with me.

I ended up leaving that hospital stay without ever being transferred.  I was wheeled out, put in the car like a lump of baggage.  We filled my 20 prescriptions at Walgreens, and while we waited for them to be ready, I ate some kind of chocolate thing from Carrabbas.  It tasted amazing.  Maybe it was because I hadn't eaten in a few days.  But I think mostly, it was me, letting go.  It felt so easy.  It felt like my cozy bed, in my favorite pajamas.  Surrendering to whatever this was, and not shutting off my brain to feelings.  Because feelings hurt too much those days.

Depression.  Have you had it?  If you have, there's no need to read my poor explanation of it. You feel it.  You know, that no explanation will ever do that awful word justice.

If you haven't suffered from depression, I'll try and make it simple.  Everything you thought you loved, and lived for, is questioned.  Your very being- what makes you, you, is gone.  Vanished- and I haven't a clue where to find it.  Sunny days mean nothing.  Kindness makes you cry, because you don't deserve it.  And your kids... your kids break you.  With a single word, they can shatter you into pieces.  A quiet, "I miss you, mom" can burn for days.  Weeks.  During the summer of 2014, I was convinced I was made of ashes.  Just burned up words, under my skin. 

Depression is not weakness.  Depression is the hardest thing I've dealt with thus far in life, and if I were weak, if depression was about weakness, I wouldn't be here.  Therefore, I can say with confidence, if you are struggling with depression, you are the opposite of weak.  You are strong and stubborn.  Holding onto slivers of a fraying life, believing with all you have that it will get better.  And that takes immense strength.

I was hospitalized three more times that summer.  Twice for kidney stuff and once for gallbladder removal surgery.  I ended the summer optimistic;  my sister Meghan was getting married and I couldn't imagine things getting much worse.  I had paid my dues, right?  I deserved a reprieve.  A ray of warm sun, just for me. 

I can't remember the date, or even the "whereabouts"- September, I'm guessing.... but as soon as one medical hurdle was jumped (self cathing/kidney/bladder/gallbladder issues) another hurdle would pop up.  This one, in the form of vision loss (optical neuritis) and migraines. 
   
These episodes (which are now occurring about 2x a month) are so debilitating and painful I become disoriented and desperate.  I need the ER ASAP- I need morphine.  I need steroids to get my vision back.  I've been given medication to take at home when these strike, but so far, I haven't been able to stay out of the hospital.  These headache/vision things are unlike anything I've ever experienced.  Not only is the pain- indescribable- but combining that with the loss of vision is pure torture.  The fear and anxiety is all consuming.  And it becomes a race to the ER- a race to get an IV, to get something pumping through me that will restore some sense of security.  Maybe someday I'll be able to ride these out at home.  But at this moment, the panic, the pain, its too much.  I don't know HOW to handle it.  I've talked with my neurologist and ophthalmologist, both who've told me its okay to stay at home and treat with the meds they've given me.  But each time it creeps up, all I want, all I can focus on is "NO PAIN, NO PAIN, NO PAIN."  And off to the ER we go. 

Hands down, the worst part of this year, my sickness- MS- or whatever it is, is knowing my kids are watching.  They know I'm sick.  They know most of the time, mama will not go outside and play because its "one of those days."  They know if I'm not in their room to read a story and kiss them goodnight, that they have to bring their story to me, in my bed.  It's not even a question.  It's just the way it is.  They know if I'm not at the dinner table, it's a bad day for me.  And when I AM at the dinner table, they go on and on about how they love our big family and "it's the funnest when mom makes dessert."  This year- I can't even remember when- (probably around my gallbladder surgery, which rendered me absolutely useless)... we were packing up to take a walk on the beach.  Henry asked, "Mom are you coming?"  And I said, "Yep!"  Like, yeah, obviously- I always go to the beach.  And Henry started jumping up and down, "YES!  MOM IS COMING!  MOM IS COMING!"  I cried the entire way to the beach that day.

I am failing these kids.  These beautiful babies with the biggest imaginations and hearts, the energy and perseverance to move mountains, are failed daily, by me.  It's haunting.  At the same time, (as Ryan and I talk about this ALLLLLLLLLLLLL the time), we're not sure what else we can do at this point.  When its a good day, we milk it for all its worth.  I'm trying to build memories that are strong enough, so happy and sprinkle filled that when I am absent, perhaps those memories will fill in the gaps.  Alas, I'm not stupid;  nothing will ever be big enough to fill in the gap of me.  We all know that.  And we skate around it, trying to stay optimistic, hopeful.

There are days the optimism works, and I really truly feel like there will be better days.  That this is a crazy hard season in my life;  I'm swimming with sharks with bloody limbs.  I'm leaving an easy trail behind me- but I'm still ahead, and as long as I continue to swim, I'll get there.  I'll make it to my destination.  Blood will be lost, no doubt I'll be exhausted, but I'll come out with stories to tell and be a better mom for it.  The mom who out swam the sharks.

And then there are days where optimism is nowhere to be found.  It's gone.  And those are the really, really hard days.

What I'm attempting to do is separate these two extremes; separate them completely.  And take each one for what it is.  A good day, is a good day, life goes on.  A bad day, is a bad day, life goes on.

Something you may or may not know about me is I'm a creature of habit.  I love stability.  I love knowing what to be prepared for; what's lying ahead.  So this whirlwind of a year has been painfully harsh, blunt.  Unforgiving.  Days pass, things happen, and I'm tossed around like a rag doll.  Will I be in the hospital tomorrow?  I'm not planning on it.  But nothing is a given.

The thing is, this is your life too.  This is life. This has been my life for, forever!  But I'm just now realizing it.  We all hear those sayings, "Life is unpredictable.... We never know what tomorrow will bring."  And on, and on.  Today, I LIVE by those sayings.  It's my sanity.  To know that I'm not living an unplanned, chaotic life, separate from the rest of the world... I'm just accepting it now; learning to ride the wave. 

With every hospital stay, I tend to read scripture (thank you iphone APPS!:) like there's no tomorrow (no pun intended).  Two of my favorite verses that I meditate on are "Be still and know that I am God" Psalm 46:10 (that's tattooed on my wrist).... and "I loved you at your darkest." Romans 5:8

Romans 5:8 may sound like an odd verse to meditate on but let me tell you why this is a verse that is constantly on my heart.  When you're hooked up to bags of antibiotics and have a catheter hanging at the end of your bed, your hair hasn't been washed in a week and you're bloated from the steroids, it's pretty easy to feel low.  Unwanted.  A burden.  Ryan will come to visit me and I'll straight up ask him, "Why do you do this?  Why don't you just walk away?  Look at me."  And I'm not talking just physically- I'm speaking deep, down- I am a mess... who would love this?  Well, first of all, God.  God loves me.  He loves me at my darkest. (see?  Beautiful verse, right?)  And second, He gave me someone that also loves me at my darkest.  A whole group of people actually.  Ryan, and my beautiful family.

I place so much worth on what I do or how much I do; and none of that matters- not to my family, not to Ryan, not to my kids and certainly not to Jesus.  I am loved because I am His.  As ugly as this can get; I am loved so deeply.

I say with hesitancy that today I am okay.  (because normally when I say "today's a good day!" I end up in the hospital)... but generally speaking, today, yesterday, these days, have been okay. 

2015:  OH the hopes and dreams I have for you, 2015!!!!

Actually, a lot of priorities have changed from last year to this year.  And things that once were so important, are just sort of "there."  Not like they're not important anymore, but they're not going to make or break me.  I want this year to be a year of healing.

I understand that medically, there isn't even an official diagnosis- so healing may not come from doctors or medicine, and I could end up with more migraines, bladder issues and Lord knows what else,- but I'm speaking of healing in terms of the mind; being in a better place.  A different place- where my self worth isn't constantly on the chopping block.  I'm getting there.  I really am.  I'm not THERE... but I have confidence if I continue to remain in His word, tally up my good days, watch my kids and engage with them, laugh, accept my husband's love, even when I feel like I don't deserve it because "THIS"- my sickness, my rollercoaster ride- is too much, my mind will have no other place to go than up. 

Okay- so major props to whoever read all of this.

I guess you could call that my "story" of 2014.  Like anyone else, I have resolutions that I'm super excited about- I have reflections that I'm thankful for, and I'd love to share them with you- list style though... because all that above sucked the brains out of me...

Thankful Reflections Of 2014
  • kind doctors
  • nurses- even the grumpy ones...;)
  • my family- mom, dad, sisters and brothers- you guys have held my family and I up this year.
  • Ryan- there's too much... I'll continue to show and tell you, each day.
  • YOUNG LIVING- I try not to let my mind wander where we'd be if we didn't have YL.
  • Ningxia Red for giving me energy & deep relief for those migraines, holding me over until we reach the hospital :)
  • 4 kids that call me mom even when I feel like I don't deserve that title
  • friends- the real ones who love you no matter what.  Who don't judge friendship on how long its been since we've last talked... or other silly 1st grade behaviors that I can't even try to get into right now.
  • morning coffee with Ryan
  • the hugs and kisses from my departing littles :)  -There's nothing like a "BYE MOM!  LOVE YA!" from your big boy kindergartner.
  • Henry's school; the people we've met- the way they treat my little man.  What a blessing.
  • my dogs.....I know, I know.  But sometimes, when its a "bad day" and Ryan's out with the kids, they're my saving grace.
  • all of the awesome Bible apps I've found on my phone; many of which got me through some long hospital nights
  • my kids' health.  THANK GOD,  THANK YOU LORD, for their health.

Resolutions for 2015 
  • be thankful every morning my feet hit the floor
  • get lost in my kids;  stare in wonder as Henry explains his lego pirate ship.  Relish in every cuddle from Rosie, as those are becoming less and less.  Laugh at Stella, worry about the mess and chaos later.  Study Maeve; my baby who is becoming a girl with more feelings and emotions than I can grasp!
  • Grow as a YL leader, by watching the amazing examples the Lord has put in my life.  Lindsay, Monique, Nicole- I just love you guys; your smarts & and your selflessness is crazy impressive.
  • Okay so this one is WAY out there, but it's been a pipe dream for awhile, and now with the freedom that YL has given us, I MIGHT be able to pull it off;  Anchored Hope - a line of tee shirts (baby to adult), based on things my kids say.  I have designed a few already and they're STINKING ADORABLE (I think so :)  I have no idea what this will be- an etsy store?  A few sales here and there?  Or something just for my kids?  Really no clue- but designing has been amazing, and it turns out my kids are pretty witty.  :)  Anchored Hope= Hebrews 6:19- look it up :)
  • finding a HOME church.  As in, not attending as a guest- but as a member.  This is so important to me.
  • Giving back.  We sponsor a child through Compassion International, but we've been talking/looking into other ways to give back- specifically, locally.  Coincidentally, there's a HUGE chapter of kids here- YOUNG LIFE- (not young living :) and I'm hoping to get connected with them :)
  • No resolution list would be complete without SOMETHING about dieting.  I don't want to call it dieting though.... Just eating pure and whole foods.  That should be something so natural...
  • being a better housekeeper- I'm awful with chores.  Always have been- ask my mom.  But I'm a grown adult and I've gotta step it up in that area!
  • write...write...write...write
  • travel
  • keepin on with that mind training ;) -okay a hospital stay?  Not fun.  Also not end of the world.  Get up, get going.




Okay- so I THINK that's it for now.

Wowza.  That's a whole lot... thank you for reading- thank you for NOT judging (if you are judging, kindly take yourself somewhere else, your glass house won't hold up well here. :)

And HAPPY, HAPPY NEW YEAR!!!!

Love & blessings to YOU!!!

xoxo-
Ash

Saturday, November 15, 2014

Ahem, Ahem.... Listen Up

Hey friends- yo-

Please read this and take it, remember it when reading future posts, or hey- don't read my blog at all! :D 

It's totally your choice.

I am a few things:  Sarcastic, creative (debatable- but my mind is on 24/7 so I'm going to call it creative mode), and I have the ability to laugh at myself.  This all amounts to what I write about, how I write, etc.

When I say something like, "Taylor Swift and I are going for coffee later on"- that's not true.  That's me STALKING  WRITING with flare.

I think we'd all be a bit better if we didn't take ourselves so seriously.  Lighten up, eh?

PS-  I AM a Christian.  And I DO occasionally swear.  I am a son (daughter) of a son, of a son, of a sailor, after all....

I think that's it....

MUST get dolled up.  I'm off for a coffee date with Taylor Swift- wish me luck- she's so close to casting me as a back up singer.

Thanks!
xoxo- Ash

Thursday, November 13, 2014

Liver Biopsy Stuff

Because you need to know.

What its REALLY like to have a nine inch, hollowed out needle pierced through your back and into your liver... #heaven. 

I'm still high on drugs from the procedure obviously.

Actually- let me tell you, I had it in my head to be death.  Like I was going to die.  Wrote my kids notes, said my "love yous," looked at old photos, the works.  I was going to die during my liver biopsy.

Over 24 hours since the procedure and I'm still kickin.  YESSSSSSSSS.

So Ryan dropped me off super early for the procedure and I had to do all this junk beforehand to prove my blood could clot. 

The procedure was supposed to be ultrasound guided, and at 8:30 AM.  So when it was 9:30, and I was still in the holding room, trying to understand how they were going to do this whole thing while I was in a CT machine.... um, one could say I was nervous.

The doctor had looked at my previous images and thought it'd be better in a CT scanner.  Ugh.  I was not prepared for a CT guided liver biopsy.  It was supposed to be at 8:30, I was supposed to be in a nice twilight sleep, in a dark room with an ultrasound.  Plans were changing. And I am not a plan changer.

I started to panic and my heart rate went up which happens every.single.time.  But it made my vitals go nuts which delayed the actual event even longer.  I was telling the nurse, "This is all because I'm consciously aware that I'm going to die.  If you knock me out, my vitals will go back to normal- bet you anything."

She asked, "Are you THAT afraid of having this done?"

And I wanted to say, "Are you THAT serious?"  I mean giant needle.  Ribs.  Liver.  No.

But she talked me down a little bit and was able to get me to at least stop crying long enough to sign my life away 3000 times.

And then she swung my door open and said, "SHOWTIME!"  And I was confused again- are we going to get some ice cream?  Or am I going to get my liver pierced?

They wheeled me into the CT room which had transformed into an operating room- basically, just lots of people and blue sterile stuff, which I was good with.

And now I'll tell you the most uncomfortable part of this entire thing:  getting into the right position.  Holy. 

I ended up with wedges and pillows all over the place and my right butt cheek high in the air, with my left shoulder blade on the table.  I had an IV, o2 stat thingy and a blood cuff monitor- they had me lift my arms up over my head.  I mean, seriously?

Once I was in position, the kindest, best doctor (aside from Dr. Bigelow) popped his face into my peripheral.  "Hey young lady!  I have a daughter your age and I can't imagine her being here. She'd be terrified.  So that means I've gotta be extra good with you." 

Immediately I breathed.  And cried (of course).  Because compassion and empathy doesn't come cheap or easily these days.  Trust me- I know this.

Okay now I'm going to narrate my twilight sleep (as I remember it):
Me:  You have to give me something soon.  Like can you put me to sleep?  I'm going to lose it any second.
Doctor:  No, I want to talk to you.  We're going to keep you up.  So where are you from Ashley?
Me:  Here.  I mean St. Augustine.
Doctor:  No way!  Nobody is from St. Augustine.  That's for tourists only.
Me:  OW.  Ow.  I feel that.  Yeah I feel that.  Okay give me something please.  
Doctor:  You're doing so good. And I really want to know about how you came from St. Augustine but lived in Michigan.  I was reading your records.
Me:  (((literally no idea..... just minutes of blabber- twilight sleep had kicked in))) .....kids and I ate bacon yesterday and I used to drink tequila but not enough to hurt my liver.  I love plaid and I'm excited for fall, and I do oils.  Yeah, DO oils.  I DO OILS!!  For my job.  But I'm a mom too and I have four kids and we ate bacon the other day.

(And then a giant pinch and sound to accompany it)

Me: FU*&!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  What was that?
Doctor:  That was me getting the biopsy. You okay?
Me:  MMhmm. I have four kids and drink tequila only when I go out which is like once a year.   HOLY (expletives) this hurts.  It's in my back.  Whatever you're doing is in my back.  IN MY BACK.

Doctor:  You're bleeding, that's what you're feeling- the pressure from the blood.
Me: OH DEAR GOD.  OH DEAR GOD.  Can you give me something?  I need something. 
Doctor:  So how are those kids?
Me:  There are four of them.... and God... this is really bad.  But I have four kids.
Doctor:  The doctor over there tells me he needs more so this next pinch is because of him not me.

(Another giant pinch/clamping sound)

Me:  OH MY GODDDDDDDDD.  I feel this.  I feel it.  I feel it all. 

Doctor:  You should only be feeling pressure, right?
Me:  Yeah pressure.  Lots of pressure.  But I don't like it.  Can you give me something?
Doctor: I'm sealing it up with some clotting gel.
Me:  Am I bleeding bad?
Doctor:  I'm making extra sure you're not.  That's what this gel is for.
Me:  Is it toxic?  I'm trying to detox.  Can you give me something?

Doctor:  Your body will absorb it.
Me: Okay.  Because I have four kids.  They should've passed that pot law.  Because they keep giving me medicine that could be fixed with just one hit, ya know?

Doctor:  OKAY Ashley, you are DONE. 

-and I honestly can't remember anything else....

UNTIL- my nurse came in and said, "ASHLEY, its time to move!"

(I am so lazy... especially when you load me up with narcotics).

I told her I would.  She came back and I hadn't moved and she said, "I'm going to have to help dress you now, is that okay?"

I promised her I'd move again. 

I didn't move an inch.

But Ryan was back by then and he promised to get me going.

And then I sat staring into oblivion until I woke up this morning.

Seriously- the trippiest day of my life.




Questions  I want to strive to answer with this post:
-Was it really THAT bad?-  no
-Did it hurt? - yes, there were times.  But nothing worse than  shots.
-How was twilight sleep?-  very good.



Thank you guys for all the thoughts and prayers :)

We should know something about the mass by tomorrow.

I'll keep you updated. 

Love to you all!
xoxo

Monday, November 10, 2014

The post that probably shouldn't be posted (side note- I think I have like 5 of these same titled posts)

WORD VOMIT.

Happens every time.  I swear.

But yesterday I was on the verge of losing it.  Losing it, like walking out the front door, driving "somewhere" (probably like, Starbucks??) and then just cry in my car for an hour.  Obviously at some point in my breakdown I'd text Ryan and tell him "I'm just at starbucks... want me to pick up TP on the way home?"

My life. 

Here's what I wrote in my journal yesterday (in the midst of said breakdown, because I couldn't leave my house- logistical reasons like kids and stuff)

"There's no purpose in working harder.  There's no point in trying to be better.  Get better or do better. I am always the one who will be 3 steps behind. It's nothing new. I'm the one who effs everything up. I destroy possibilities."

(HELLO) #selfloathing

I'm not sure where the stuff came from about how I eff everything up... that just spilled out onto the pages; truth, I feel for sure, but not the catalyst to anything that happened yesterday.

Yesterday I was trying to work while Ryan was at the movies with the older kids.  The two youngers were napping (they napped for like 30 minutes...omg) and I just got super frustrated.  Like, shut the computer, stalked off to my room, scribbled in my journal and then watched youtube videos of Adam Duritz interviews.  The thought that popped into my head, exploded and then bled on everything was this:  "What's the point in doing this work today, Ashley?  You're going back to the hospital on Wednesday..."  The bleeding continued, "What's the point of trying to be a better mom?  You're always going to be sick or in the hospital.  Why are you dieting and trying to be active?  You'll always be overweight and gross, because you'll always be sick and in the hospital."

Basically everything led back to me being sick.  The excuse that trumps all excuses.  "I'm sick."  And I've been given that excuse for so long, I don't know what to do with myself.

I'm lost;  I don't cook dinners anymore, because "I'm sick" and Ryan took that on.  I don't do things at the kids' schools because "I'm sick" and I can't be relied on.  I don't go to the gym anymore because "I'm sick" and what's the purpose in going to the gym one day, and then being hospitalized for a week?  I mean, the list goes ON AND ON.

Excuses suck.  They're like useless skin tags.  Annoying, unnecessary, sometimes confined to just a single area, but often picked open, and bleeding, destroying anything in its path. 

I don't have any good resolutions about getting rid of excuses.  At the moment, I'm tired, it's raining and grey outside, my bed sounds like heaven.  Should I abandon ship here (at Paneras) and head home?  I mean, Wednesday I'll be in the hospital so what good is it for me to work like a dog on stuff that probably wont be touched again for weeks?

And every few minutes I have to backtrack; stop the bleeding- I am here.  I am well today.  I am listening to one direction and kicking butt on some work stuff.  Stay.  Stay.  Be still.

Breathe :)

I start to feel confident.  I have words written, a cup of coffee, a scarf and glasses, because its fall and I'm smart.  And then the kid next to me points at my glittery toms and says "MOM!  I WANT THOSE DOROTHY SHOES!"  dammit.

Again, stay.  Stay.  Be still.

I honestly feel like this is a deep rooted problem that MOST of us have, if put in the correct situation.  So I'm not super embarrassed to spill my beans. 

Reflecting back on yesterdays scribblings... (seriously I'll have to post a picture- I felt like a musician writing important lyrics), I realize that I have LONG been an excuse giver.  Unfortunately, its just now that I'm seeing the red.

To a point, we're all excuse givers.  But let me just tell you a few stories.... so you know that I'm a chronic excuse giver;

This one time (at band camp...no) my bestest came on spring break with my family and I.  We thought we were hot sh!t of course.  I think we had cornrows, and those butterfly clips.  I mean, supah fly.  We also had this CD, full of burned songs we had illegally downloaded.. and these songs weren't Jesus songs.  They were like, um, the complete opposite.  We listened to that CD over and over.  There was a song, it was the first on the illegal CD, and I literally refuse to write the name on this blog.... a few of you know what song that was... Anyways, my dad found it, listened to it, cracked it (the CD) into a million pieces and dropped the dreaded line, "I'm disappointed in you."  To make a really long, embarrassing story short, at the age of fifteen I had to squirm in a chair, making excuse after excuse as to why that CD was in my possession, why I would ever listen to something like that, etc.  (picture sex ed with your parents, diagrams and rap music that YOU don't even understand).  It was awful.  And I mastered the excuse.  And I think I won;  I blamed it on this kid at school- "I didn't even know what was ON the CD dad!  This kid just gave it to me and I don't know what any of that means!  We were listening to it as a joke!"   yaddayaddayadda

So, see?  In a way we're ALL excuse makers (I want ONE of you to tell me you didn't make an excuse in high school when you got in trouble with your parents...) 

It just so happens I make a LOT of excuses.  Like lately, my entire existence has been a giant excuse.

And that needs to stop.

I suppose if I need to get a grasp on reality every few minutes with the mantra (you are here.  you are not in the hospital.  you are working.  you look like you're 20-not 40- you can totally pull off glittery toms and pink hair) I can survive this season of my life.

But I'm not going to lie; its hard.  Very hard.

Anyways.

Like I said, this post probably shoudl've never seen light.  Because its embarrassing, and now you all know that I am a chronic excuse maker.  And that's no good.

But today, at this moment.  I'm owning it.  I'm owning everything.  I'm owning this work that needs to be done.  I'm acknowledging the hospital stay that awaits me.  I'm going to grocery shop today, and make my family dinner because I can.  When I'm done "working" I'm going to pick Henry up from school, and carry him out. 

Because today, I can.

Excuse makers unite:  Enough is enough. 

Let's do this.




Wednesday, November 5, 2014

points to hit on 11/??/14

  • at least I know the month and the year, right? ^^^
  • what happened yesterday:  I woke up with no vision in my right eye and an awful headache.  As soon as my neurologist opened (8:30) I was there.  Like, waiting at his door (so stalkerkish).  The nurse sat me down in a back room and I cried and cried because I thought for sure my eye was coming out and my head was just.... are there words for debilitating migraines?  If there are, swing some my way because I have no idea how to describe them.  Anyways he gave me a medication to try-can't remember the name- I tried it.  It zonked me out.  I woke up sometime after my kids were home (obviously Ryan was running the house yesterday) and was super disoriented.  I was thinking it was morning and the kids were at school, blah blah blah..  Long story short, it was like 3 PM and the kids were home, and I was incredibly confused.  I walked out to see what was going on and realized the vision in my RIGHT eye (it's always been my left) was weird- hazy- a little "buzzy" if that makes sense?   And within MINUTES, it went out.  Everyone always asks "whats went out mean?"  Went out to me is where I have to put my hand over whatever eye it is because I can't see.  There's light- not complete darkness- but no shapes- no space orientation whatsoever- just yellowish colors.  Also no peripheral vision.  It's very freaky.  Since this has happened before, I didn't immediately jump up and yell "ER!"  We called my neurologist (whom I had seen that morning) and he said if my headache was too severe to treat at home and my pulses were higher than 90, I needed to go into the ER.  Both were true.  Around 4:30 Ryan dropped me off at the ER (with every.single.kid.in.tow).  I felt like the worst mother.  "Bye kids!  Going to my second home!  Have fun with daddy tonight!  Oh and Ryan?  Pick me up around 7!"  I mean this has just gotten BEYOND ridiculous.  I fixed an ice bag/pouch over my right eye and was feeling around with one hand trying to make it to the window of the ER.  Someone had mercy on me and gave me a wheelchair.  No clue how much time passed, but soon enough I suppose I was in a room.  I was on my side, pressing the ice pack into my eye.  A nurse came in first to ask some questions... and then HE came in.  I know his name because I've filed a complaint, but I won't use it on here.  He'll just be referred to as the a-hole.  Because.... I hit rock bottom last night people.  Rock.  Bottom.  So there I am, no vision in my right eye, already crying because I was upset about where I was.  I wanted to be home with my family.  My head was pounding/exploding.... and then the ahole walked in.  I couldn't see very well (obviously) but he was short.  And had his arms folded across his chest.  He leaned against the wall and without any kind of introduction (or even an, "are you Ashley)?  started peppering questions at me.  In my right state of non-exploding mind, with two good eyes I might have handled the whole thing differently.  But last night, all bets were off.  I could keep up with his smart ass and he continued asking "Why are you here though?  You want me to give you pain medicine?"  I thought I had answered that question 3000 times.  "DOCTOR.  I LOST MY VISION THIS MORNING AND SAW MY NEUROLOGIST.  I JUST TALKED WITH HIM.  HE SAID IF MY PULSES WERE OVER 90 AND MY HEAD WAS TOO MUCH TO TAKE AT HOME TO COME IN.  DO YOU WANT ME TO LEAVE?"  And the ahole without blinking shrugged his shoulders and said "No, you're welcome to be here.  We're open 24/7 for people like you.   You can come whenever you want."  
-que MAJOR waterworks.  To the point of where he left the room...  Oh wait- I called him an ass hole first.  And then he left the room.  It went something like this:
Him:  "So you want strong pain medicine?"
Me:  "NO.  I have pain medicine at HOME.  I can walk out right now and go pop some pills.  That's the problem.  The problem is I can't see and my heart rate is high.  I feel like I'm having a freaking stroke.  Can you check my eye and tell me I'm not having an ocular stroke?"
Him:  "So let me understand this.  This isn't the first time this has happened?"
Me:  "No."
Him:  "And you saw your neurologist today and he said you're fine?"
Me:  "He said I was fine this morning to go home and take a medication.  When I called him back he said if I felt I needed to go into the ER, then that's what I should do."
Him: "But you said you've lost your vision like this before.  And you're being worked up for MS."
Me:  "Yes."
Him:  "So, what exactly do you want me to do?  You know its not a stroke.  You know you have MS.  This isn't an emergency."
Me:  "I WANT MY DAD TO COME AND GET ME BECAUSE YOU'RE AN ASSHOLE AND GET ME THE LADY THAT HANDLES COMPLAINTS BECAUSE I'M NOT TALKING WITH YOU ANYMORE!" 
Him: "Okay"

And just like that he left the room.  Not an "I'm sorry, I didn't mean to upset you.  I'm sorry that MS comment might have been a bit offensive.  I'm sorry, I see you're scared, let me just look into your eye to make sure there's nothing going on back there.  Nothing.

I got on the phone with my dad ( because dads fix everything) and he said he was on his way.

Then the patient coordinator (???Not sure of her title) came in and asked what the problem was.  She took it very seriously.  I filled out a form to the best of my ability, although I couldn't see much so in the end she gave me the email I'd need to send a formal complaint. She also gave me the option to switch doctors- which I said HELLLLLLLLLLLLLLLYES.  So she sent a nurse in to start all of that.

And then the ER blew up.  And I got lost in the shuffle- and that's okay- I realize there are people there with heart attacks, REAL strokes, etc and Ashley McKenney is not first on the list.  So when ahole walked back in the room an hour later, I wasn't super surprised I had slipped through the cracks.  BUT- my dad was there.  And I felt like this "doctor" could do or say anything... I had Goliath behind me :)

So as ahole ran down the list of things with my dad, I started to say something- I can't remember what it was- something like "I told you..." And then my dad cut me off. 

"Sweetie?  I'm going to talk for you now.  (instant flashback to like 2nd grade)....  but as I laid on the bed bawling, in pain, I surrendered.  And my dad rubbed my head and said, "Listen.  I see you're wearing a wedding ring.  You have a wife, I'm assuming?  Maybe kids?  Would you want your loved ones treated like this?  Are you giving her the kind of care you'd give your wife?  This girl, my daughter, (and here I am crying even harder now), has been through hell in the past 8 months.  She's learned to catheterize herself.  She's had painful tests, numerous hospital stays.  She's passed over 15 kidney stones just this summer.  She is exhausted.  We're all exhausted.  And all I want from you is to treat her like you'd treat your wife or daughter.  So give me that, doctor."

Ahole took a minute and sighed, then said, "I'd start her on steroids for her vision loss.  And monitor her overnight."

Okay- we were getting somewhere. 

They started an IV and I just couldn't stop the tears.  My dad asked if I wanted a colder wash cloth to put on my eye- I said yes.  As soon as I took the wash cloth down from my eye I noticed blood.  "Dad??  Is my eye bleeding?"

He came over and looked in, and said, "Yeah.  I'll grab the doctor."

Nothing panics my dad.  Nothing.  It was incredibly odd to see him out the door in a flash and back in with the doctor, flipping on lights to look into my eye.

Sure enough it was bleeding.  Ahole said it was coming from the bottom lid because I had scratched at it too much.  Again, my dad said "I'd like her to see an ophthalmologist.  Or get some kind of imaging so we know something isn't happening with her retina."

Ahole decided to put his two cents in, "You know, this is classic MS.  CLASSIC MS"

I continued to cry (if you've ever wondered how many tears you have... its a lot)

My dad told him that nothing has been ruled in or out yet and if need be, he'd drive me up to Jacksonville to get the proper imaging.  And then "miraculously" there was an ophthalmologist on call!  Imagine that.

I was admitted, and was seen by the kindest, most gentle ophthalmologist on the planet.  He understood the pain of shining lights into the "bad eye" and he took so much time with me, patient to get everything he needed.  Indeed, my retina was swollen and inflamed which he said PROBABLY produced the bleeding.  BUT there was nothing anatomically wrong with my eye- meaning the eye itself was healthy, Retina attached, no disease, etc.  Just swollen and inflamed which can be signs of MS OR a very sever ocular migraine.  Can I tell you how confusing this medical stuff is?!?! 

Anyways, I was given sweet, sweet pain relief all night but an angel of a nurse.  My mom and and sister came and sat with me until I fell asleep.

This morning, Ryan was there and we ate breakfast together.  We saw the same gentle, sweet, ophthalmologist again and this time he had great news for us:  The retina was fine- super healthy and he was pretty confident with ruling the entire thing as super bad migraine episode.    He gave us the all clear to go.

But as we all know too very well now, being released from the hospital requires 30 signatures.  Ryan left to pick the kids up from school and get dinner stuff.  And I had yet to see "THEE doctor"- the floor- doc who has control over who leaves and stays.  Around 2 or something she came in and said I could leave (HALLELUJAH!) and she'd get my discharge papers going.  And then my phone rang- the hospital phone.  It was Dr. Soto (the floor doctor).  She had just reviewed my blood work and noticed my liver panel was incredibly off. 

I told her "Yeah, I've got a really large legion on my right lobe.  I'm actually getting it biopsied this Friday at Baptist."  She wanted to draw more blood to make sure certain enzymes were at least stable and not on the rise.  Someone came and poked me again... gathered my blood, and I texted Ryan saying "don't get your hopes too high.  Blood work came back bad."

Around four she called back and said as long as I was going in for this liver issue on Friday, as in two days, she'd be okay with letting me go.  I promised I'd keep the appointment (should've kept it like a month ago...whoops).  I'm also banned from a giant list of medications- and you'd be SHOCKED at what can be sold over the counter, that can potentially cause this kind of liver damage.  It's terrifying and so sad.  I've literally been led like a blind sheep.  Listen people:  Acetaminophen?  It's not just a fluff warning they put on packaging.  It's real.  And it's caused damage to my liver.  I know this because I used to take tylenol like candy.  Any ache or pain or hangnail, 2 tylenol!  Can't sleep?  2 tylenol PM's!  I mean, I lived like this for YEARS.

 And I'm paying the price now with four little sets of eyes watching me. It's sickening.

 So yes... this Friday I go BACK in the hospital.  I'm terrified.  My liver hurts.  It HURTS.  That can't be good, right?!?!  Like you know under your ribs?  The entire area is tender and throbs.  So even if this is nothing to be concerned about, it's causing pain, which is going to have to be addressed eventually.  I mean.... I feel like I am stuck on the most disgusting merry-go-round.  And I CANNOT GET OFF. 

  • that was a huge bullet mark ^^^
  • In a couple of weeks, after the liver mess, no matter what the doctors come back and say about it, Ryan and I have made it a mission to take the kids SOMEWHERE- for a few days.  They deserve it.  Ryan deserves it.  Sometimes I feel like this sick rag doll that gets pulled around. limbs constantly falling off, having to be sewn back together.  Just a complete mess.  A job.  And not a fun one.  I am a job- that's the best description.  haha!  And everyone- including myself- needs a break.  So, we're going somewhere.  I don't know where.   But it will be a place to laugh, smile, run, drink sprite and chocolate milk, eat dessert late at night in hotel rooms, rent kid movies and lots of king sized bed cuddling with our babies.  
  • Stella just walked in our room, turned the bathroom light on, peed on the floor, shut the light off and said "I'm so sorry mom." And then retreated to her room.   Like that really just happened.
  • I am now logging off to clean up our bathroom.


Thank you friends and family for prayers and thoughts.  Thank you YL girls for my beautiful flowers that made me ugly cry. 

xoxo, Ash

Monday, November 3, 2014

The McKenney's 2014 Holiday ETSY Guide :)

My status from last night (because I'm too dang tired to re-type it)

"Don't mind me while I shout from my soapbox for a hot sec: okay so christmas is coming, yeah? I so, so, so urge you to try and shop local, or on etsy, or through friends who sell products. Let me use myself as an example. When you become an oil client of mine, that's a grocery bill paid. When you put an oil order in, that's a baseball bat for Henry. When you support locals and working mamas with etsy businesses, oil businesses, jamberry, etc. your money is going directly to a family. Think about that before forking over 300 bucks at Walmart . I'm planing on getting all of my kids stocking stuff from etsy- wooden cameras, play food, dolls, teethers (Rosie), animal masks for Stella, jewelry for Maeve, wooden pirate stuff for henry; the list goes on and on. If you're interested in specific shops I'm buying from I'd be more than happy to share! . Let's support each other this season and keep our money local. . -off soapbox-"

Trust me, I get it;  I know kids want electronics and plastic crap, but (shhh) I let my parents and grandma get that stuff.  :)  

I prefer to give my kids handmade, one of a kind items.  Some are huge hits, some aren't.  But something that I think we can all take away from holiday shopping is this; let's stop throwing money at big companies for that piece of plastic crap that will break in two days, and start investing in our friends, family and neighbors.  

Etsy and Instagram are HUGE havens for homemade gifts.  I bought quite a bit last year off of Etsy, and I plan to do even more this year.

I had a lot of people asking "What are your favorite Etsy shops?"  And as I started to list them on facebook, it occurred to me, there are just TOO many.  Ask my husband.... we have packages delivered here every day.  I have discovered an incredible amount of talented people who pour their heart and soul into their work.  

It gives me goosebumps to think of hands being used, instead of machines.  One of my favorite artists, Jack Johnson sings a song about this whole thing.  A lyric goes, 

"Future complications
In the strings between the cans
But no prints can come from fingers
If machines become our hands
And then our feet become the wheels
And then the wheels become the cars
And then the rigs begin to drill
Until the drilling goes too far"
(The Horizon has Been Defeated)

Anyways, I thought I'd put together a little shopping catalog/guide for anyone who wants to participate in buying locally, paying a little extra for fingerprints.  

Here's my shopping list:
KID SHOPS (toys, teethers, rattles)

KID CLOTHING

BIG PEOPLE STUFF (for sisters, moms, dads, etc)




These are the stores I've ordered from within the past year or so and I can tell you, they're all so wonderful.

Step outside the Walmart aisle and see how you can support a family AND get something great for yourself. 

Treasure those fingerprints.

xoxo Ash

Tuesday, October 21, 2014

Lazy Pretzels, Other Catastrophies I Like to Entertain & Ramblings about My Faith

I feel sometimes like a slave to this blog; not that I dislike writing on it.  It's the fact that its morphed into something so far from what it was originally intended to be:  A diary of my kids' lives.  It's twisted into "Ashley's problems" and "pray for this" or "pray for that."  It's getting old for me... I want to talk about what my kids are doing;  I want to tell you about the insane, unbelievable things Stella does.  I want to have a neat little blog post, tied up in strings (like they used to be) showing, "Oh look!  We went berry picking!  And here are our beautiful pictures!"  The truth is, it hasn't been like that in a long, long time.

And thus, I feel a slave; its like the blog that won't die.

Maybe when this stuff passes I'll start clean.

For now, it's your random post, full of ramblings and nonsensical run-on sentences... a girl pining and whining her way through life.

I get way too many messages saying the same things, "Ashley, you are strong!  You're a source of strength for so many!, etc."  Wrong.  WRONG WRONG WRONG.

I am weak.  I have nothing left;  what you see floating around town is a body.  The brain, the heart and soul are elsewhere.  In "lala-land" or something.  Always thinking and churning over the "what if's."  Always beating myself down for not being the best mom or the most amazing cook or wife.

I often look at my days like a giant "to do" list.  Was I a fun mom today?  Did I tell my kids I loved them enough?  Did I tell Ryan I loved him?  Did I tell him thank you?  Did I cook dinner?  Did I pick up enough?  Did I spend enough time with the kids?  Did I?  Did I?  Did I?

The answer is no- I fail on all of that.  Everyday.  Especially days of late.  I've had to step way, way out of my comfort zone and allow others to bridge some hefty gaps.  Gaps that were once my territory;  I'm leaving them open for others to fill.  Some are simple, but incredibly (OH MY GOSH INCREDIBLY) helpful, like making dinner or a gift card for dinner... You guys... YOU GUYS.  You have no idea.  Just none.  We'd be on our 30th day of Chick-fil-a if it were not for y'all.  So THANK YOU- beyond WORDS!  Thank you.

Other gaps are harder to watch;  like when my friend had to take Henry's first day of school pictures.  I cried the entire day, which led to a crazy migraine.... yeah that was tough.

But to know I have friends and family that are ready to jump in and pick us up, plug a hole in our deflating balloon; that's priceless and I seriously cannot thank you enough.  I've never felt more loved.

This blog post has been a thorn in my side for awhile.   I was planning on writing some sort of whiny post (typical) around the beginning of September.  And then sh!t hit the fan.

Our babysitter arrived like normal, to watch the kids.  I had had an appointment the previous day; a gallbladder scan (a Hyda scan?)  and wasn't thinking much of it... other than I had a pain in my right side and was interested in hearing if it was my gallbladder or not.  After leaving the house I pulled into Panera's with this laptop (that I'm typing on now :) and got a call- it was my GI doc up in Jacksonville.  My gallbladder wasn't functioning- like at all- in fact it was beginning to disintegrate.   They asked if I could come up pronto to be admitted and get it taken out.  Thankfully, our sitter and my family worked together to make all of that happen and I drove to Baptist Memorial on a Thursday, for what was supposed to be an easy gallbladder surgery.

HA.

I was admitted and my surgeon wanted to run a CT scan before surgery.  I was doped up, and couldn't have cared less.  One CT scan later, I was taken down for surgery.  Literally, as I was getting off the elevator (or being wheeled in the stretcher) a surgical tech came out to meet my nurse and said, "Is this McKenney?  She's not having surgery . I don't know the details but its canceled for right now."  And that's when the hospital stay turned into a nightmare.

I was brought back up to my room, where I sat with (sister) Emily.  We ping ponged ideas back and forth, wondering what would halt surgery... around 8pm they brought me down for two MRI's that I swear was the equivalency of being in a pit of snakes.  #IhateMRIs  I still didn't have a CLUE what they were looking for but the MRI tech was awesome... and I asked a sneaky question, "So, what are you looking for with this scan?"  And he answered, "Primarily the liver."

I pondered that.  The liver.  Hmm... But then also knew the gallbladder lied inside the liver, so I guess it wasn't too crazy?  Anyways, we got through the MRI (barely) and I was taken back up to my room.

Around nine PM, the lights shot on in my room and a team of doctors swarmed my bed.  I honestly can't remember how it was said- what all was said, I really cant.  But it was basically "We didn't do the surgery today because you have a lot of issues.  We found free fluid in your abdomen, a large cyst on your ovary and a mass on your liver.  Now we know your gallbladder isn't working, so it certainly could be a reason for your symptoms and pain, but you need to know that we could take the gallbladder out and nothing could change.  Meaning, you'll continue to have pain, because you have several other conditions going on."

I said to go ahead with the surgery- to knock that off the list.  The doctors agreed, saying it would be nice to have the gallbladder off the table; not a viable source of the symptoms.

The next morning I went in bright and early for surgery.  Because I'm Ashley, there were complications getting to it and I had some anesthesia issues as well... which prompted an automatic night stay.  And honestly, I was in SO much pain, that was fine with me.

I have five incisions.  One in my belly button, the other four up top.  And for the first day, I asked for morphine whenever I could get it.  It hurt THAT bad.

Normally when I am in the hospital I keep a stiff upper lip; refusing meds because, who knows.  They'll ask me to rate my pain and I always answer with a 2 or 3.  An hour later they'll find a stone ripping down my ureter.  The nurses fawn all over me, "We have grown men come in here saying they are dying!  And this is what, your 15th stone?"  Stupid pride.

Okay- back to Baptist; While in the hospital they found a new reason to keep me (it seemed this way).... each day.   Something was ALWAYS wrong with my labs or scans, etc.  It was just a really hard, not fun, tear and anxiety filled week.

The stiff upper lip completely quivered and I surrendered to whatever they would give me.  I was sick, in a ton of pain and my chest was filled with panic.

Also, did you know getting released from a hospital is kind of like being released from jail?  Like you are THEIRS.  They OWN you.  I had to get permission from ALL of my doctors that I could be discharged.  And at this point in my stay I had a floor doctor, a GI doc, a surgeon and a neurologist.  And there was so much miscommunication;  one doctor would say "she's good to go!"  The other would say, "I need more labs.  Or let's repeat this scan."  It went around and around like that until finally- FINALLY- one of my doctors rallied all the signatures needed, and I was out.  

At home I took up residence in bed.  Typical.  And that's when the meals started arriving.  And its here that I lack the words to properly thank you all.  But I'll try.

Ryan was brushing kids' hair, teeth, filling back packs, tying shoes, etc.  And YOU saved him from a necessary, but everyday hassle; making dinner.  I know I keep going on about it, but really- the outpouring was just insane.  I cried every time I read a card, or ate a meal that someone had taken the time to cook and deliver.  Just thank you... over and over and over again.

Somewhere around day 3 of being discharged from the hospital, Ryan started talking about resigning from his job.  I think I cried for about two days straight.  I envisioned the power being turned off, standing in line for  WIC, having to move the kids again, etc.  (my psychiatrist says I like to make catastrophic events in my head- wha??  He so cray cray.)

So yep. That's a huge announcement.  The change that trumps all changes.  Ryan resigned.  He's done at Embry Riddle.  He's home taking care of his forlorn wife.  If you could only imagine the guilt... it's all consuming.  We keep  joking about "for better or for worse..."  But we have four kids... we can't play around here.  There are bills to be paid, an incredible amount of logistics to get through (like finding GOOD, new insurance...gahhhh)... and most of all, leaning SO heavily on the Lord.  We're living on hope and faith right now.  And so far so good.  Why am I surprised?  Does the Lord ever fail?  This may not have looked like the life I thought I'd be living this year, but it's exactly what He has written.  I don't know the why or what or when.. but He does.

I am officially 1 month out since my botched gallbladder surgery... (well not botched I guess; they did get the thing.... after 6 incisions).  My insides still ache and the fatigue is overwhelming.  All the time.  I feel like I'm standing in the middle of the road, cars flying by on both sides of me; life happening everywhere- and then there's me.  Stagnant.  It's all too fast right now,- the world that is.  I can't keep up with it and its making me feel like the biggest failure.

Because I lock up my confidence and self worth in silly things like, making the perfect pinterest cupcakes or having the best dressed kids, the moment something slips (ie- we bring a bag of PRETZELS for snack- and they're in a bag, like we picked them up on the way to school, which we most certainly did).  I could just see the other mothers eying my bag of lazy pretzels.

I need to get over lazy pretzels.

Anyways, a bit ago I got some sobering news.  The liver mass has grown 1.2 cm since my last scan- that's a whopping total of 9.2cm of SOMETHING that's squashing and taking over the right side of my liver.  And yeah, it hurts.  I think the pain is simply because of the size; its protruding out- my belly is SO bloated; I mean that sucker's gotta be pushing on stuff right?  UGH.  Disgusting.   I met with my internalist to figure out what to do/where to go next. Last week I had a colonoscopy (terrific times) and I've scheduled my liver biopsy twice.  And have cancelled it twice.

Yeah.  That's about where I'm at right now.

We did get some incredible news from my neurologist- my spinal fluid is perfect;  He felt confident in ruling out MS.  And it snapped me back into reality.  Just hearing that, "We can rule out MS or anything else that's a serious neurological issue."

I fell back into me.

I thought the transition from "sick Ashley" to "normal Ashley" would be earth shattering;  I basically had a zillion pieces to pick up.

It was anything but earth shattering.

Wait- I take that back... it was earth shattering, but in an amazing way.

I came home, cried with my mom, praised God about the incredible news of no MS and decided in that moment I was me again.

I could think about going to Disney World and walking around with the kids.  I wanted to go grocery shopping!  I could get out of bed in the morning, excited for the day.  It had been a long time since I had felt any kind of pure, sugar, maple syrupy happiness.  And I let myself sit in that moment for awhile, day dreaming of life withOUT MS.

 It was a really, really good day.

This post gets a few awards tonight; I'll start out with "most whiny" and follow up with "longest post ever."

Okay- so today- here, and now.  I am due for a liver biopsy that I can't seem to keep on my calender.  I don't want to do it.  I don't want to ever go back to Baptist.  I don't want medicine.  I don't want pain.  I don't want to know what this is, growing inside me.  In the same breath, I can say I need to know what is growing inside of me.

Tomorrow's goal is pretty simple:  Reschedule liver biopsy for the 3rd time.

Following through is where I'll need some encouragement.  :)

I'll try my best to keep you updated.

On a totally NOT medical note, seasons are changing, transitioning to a cooler, colorful time.  I call this weather my "second skin" weather.  You can walk outside and I swear, the weather matches your body temperature (obviously it doesn't.. but it feels that way).  It's just sweet goodness.

We have four pumpkins on our stoop.  Two giant spiders (real ones), weaving webs around our porch.  Sidewalk chalk drawings have taken over our back patio porch and there's a constant smell of leaves and coffee in our house.  I love it.

Something I've been struggling like, horribly with, is faith.  Or trust-(lack of) whatever you want to call it, when I decide that the world is ending and my heart is going to fail and my kids are going to find me passed out on the bathroom floor.  What does tomorrow hold?  I wish I knew.  But we're not meant to know.  I have faith in my God.  He's done amazing things in these past few weeks (years,- my entire life).... 

That's super easy to type out and its simple.  It makes me feel like a good person.  The truth is, practicing this kind of faith and trust in Him is hard.  HARD.  The day of my neurology appointment (pre-appointment) I sobbed, listened to a few of my favorite worship songs, got on my knees and cried (literally) to the Lord.  He delivered.  No MS.

You'd think my faith would be sky rocketing high, right?

Wrong.

Now my mind is triggered on the liver thing.  Christians, how do you give it ALL up to Him?  And why is it so hard for me?

A friend of mine (she'll remain anonymous :)  prayed with me a couple of weeks ago.  Through tears, she asked me, "Ashley, if the Lord takes one of your kids, are you going to deny Him?  Will you not worship Him?"

Automatically, like my soul was being held in His hands, I said "Of course not!  I will forever worship my God."

I've been thinking a lot about that conversation.  There are three thousand things that could potentially go wrong at any given second and trust me, I can come up with some good ones (one of my current fears is being swallowed in a sink hole...yeah) anyways, if any one of those three thousand things were to happen, would I abandon my God?  Never.  And I guess that's the moral of this HUGE, long, rambling post.

No matter what happens, sink holes, my kid being bullied, liver cancer, WHATEVER- my God is HERE.  He is ALWAYS present.  And I will always bow to Him.  He is ALWAYS good.  Even in the midst of super scary times.  He is the One I can cling to, and I know I will never be failed by Him.

I'm focusing on this; remembering His love for me.  His love for my kids.  My heart is His, and He's in mine.  And that's what's going to help me walk out the front door tomorrow.

Alright- I think this is over.

Goodnight, God bless.  Be thankful for health!  Live life beautifully- fearlessly.

(but still watch out for sink holes- those things are real).

:) xoxo- Ash