Wednesday, May 14, 2014

the ugly insides, scary words, a lot of faith and a song (graphic- don't read if you're not into hearing about pee & body parts)

Am I okay?

I think so.

I get up in the mornings.  I scramble around the kitchen, reheating my coffee 20 times, scooping baby food into Rosie's mouth, reassuring Maeve the tooth fairy will always come (EVEN if she swallows her tooth again).

It's all so normal.

On the outside, Ashley is functioning.  I wash my hair, put clothes on, love my kids and respond to oil messages.

On the inside I'm scared; shaken to my core.

The story goes back to August. It's told HERE.  A quick brush over bullet point; hardly causing a ruckus.

I lost my vision in the shower.  It was terrifying.  I was told it was a migraine and the pill poppers were eager to put me on a slew of crap.  I never took any of it.

Six weeks ago I felt like I needed to pee.  Normal enough.  Happens about 4000 times a day.  But I sat down, and couldn't go.  It was strange... very, very strange.

This went on for a week until my urine flow completely stopped.  And when I say stopped, I mean NOT A DROP.  My bladder felt like it was on fire and I have enough common sense to know that one must pee at least more than once every two days.... so I went to the emergency room.  After some scans and such, they said I was retaining urine.  No biggie; let's place this foley cath in and get you into a urologist.

At that point things were okay.  Well as okay as they can be when you have a bag of your own pee taped to your leg.

But this was a solution to the acute problem.  And in a week I'd be seeing the geniuses at the Mayo clinic who would fix it all, take the bag off and get me back to "normal."

The night before my appointment I hit this crazy huge milestone with Young Living.  PLATINUM.  I was berserk.    "RYAN!  This is it babe!  WE DID IT!  ONE more step and we're set for life!"  (or some crazy ramblings like that).  More or less, I was on a high.  It felt incredible.

Driving to Mayo the next morning, I listened to all of my cheery songs (ya know, like "Selfies"), tipped the Starbucks lady and rolled down the window, just to feel the breeze on the palm of my hand.  Platinum baby.  Private schools.  A new house.  Maybe we can lease a convertible for date nights?  The possibilities seemed endless.  My life seemed endless; invincible.

I checked in at the front desk, my head still in the clouds... tapping away at my phone, finalizing end of the month oil stuff.

"Ashley McKenney!"  a nurse called from hallway.

I hopped up and followed.  This was my 2nd trip to Mayo so I knew the drill.  I'd be put in a room where I'd be asked no less than one million questions by a nurse.  After she was satisfied with my answers, the doctor would come in and we'd get down to the nitty gritty.

"Nope, I don't use tobacco."

"I have a great home life."

"Four pregnancies, four live children."  (that one always gets me... how blessed am I?)

The nurse left and Dr. Anonymous walked in.

He shook hands with me and started to go over my history.  I caught the drift real quick that he wasn't here to talk or learn anything about me;  he wanted facts.  Fine.  I get it;  he's a busy guy.  He doesn't have time to hear about how I think my pregnancies have added to my kidney stone production, etc.  He wanted dates, times, amounts, pain scales, etc.

After that less than thrilling meeting he ushered me to a room to be examined.  It was listed on my Mayo schedule that I was having a pelvic exam so I knew what I was in for.  At the same time, having bladder issues, it's like second nature to drop my pants (don't take that for what it sounds like).

After situating myself on the table, feet in stir ups, drape in place I think I sent out a few funny tweets about how much I LOVE pelvic exams... something dumb to kill time, I guess.

He came in and donned a blue, plastic apron- similar to what a butcher wears.  I'm used to midwives... who don't care about ya know... that stuff.  So it was a bit awkward as his vinyl apron squeaked with each of his movements.

The first thing he did was called a "French" test.  He stuck some instrument in me and said in the creepiest voice ever, "Just making sure God didn't make you too tight."  I cringed.  My skin crawled and my stomach lurched.  I wanted out.

He finished the exam, told me to dress, and he'd come back to talk with me.

I'm fairly sure my cheeks were still beet red when he came back in.  The "French test" had really embarassed me.

In less than two minutes (TOPS), he told me A.)  I was in urinary retention mode.  B.)  I should seriously consider sterilization ("you have four kids!  I don't think God is going to hold it against you if you take some permanent action") C.) Any further testing would be a waste of our time and money (both his and mine). and D.) He'd be sending in a nurse to show me how to self catheterize myself.

I have no idea what hit first;  which statement; which blow... but something, or all of it, made me start crying hysterically.  He opened the door and yelled for a nurse, "I need someone to come and talk with her about self catheterization!"

And with that, he was gone.

A nurse (a glorious, saint of a nurse) came in and calmed me down.  She translated in a kind, humane way, what Dr. Mengle Dr. Anonymous had just piled on me.  She sat with me.  She explained this wasn't the end.  And gave me her honest opinion, "Honey?  Get a second opinion.  You're 29 years old.  You don't need to be doing this unless its absolutely necessary."

I nodded until my head was about to come off, I swear.

And I can't recall the rest of the visit;  it was tear, fear and pain filled.  I remember her showing me different catheters,  each one causing its own track of pain.  I remember the embarrassment.  The shame of having to call my husband and tell him his 29 year old wife was in reality a 90 year old woman.  Most of all, I just remember so many tears.

That weekend I didn't get out of bed.  Not once.  I didn't eat, I didn't drink, I didn't look at my kids, and I didn't communicate with my husband.  He'd come in and beg me to cath myself... I rolled over in bed, defiant, absolutely not.  Sunday it had been two days since I had urinated.  (TWO DAYS) and Ryan, with tears filling his own eyes now, carried me into the ER.  They placed a foley catheter in.  I got another lovely leg bag, and was sent home to see the urologist again.


And then my mom got involved.

"Ash, something isn't right.  You're too young to have bladder problems like this.  Please go see your regular doctor... let him put it all together."

Last Monday I saw my primary care physician.  After relaying the story to him he said, and I quote, "This is bull shit. Absolute bull shit.  He wants you to cath yourself, but is not going to investigate WHY you can't urinate?  Bull SHIT."  Immediately he wrote up a referral to another urologist, put me on some antibiotics (I had another UTI), gave me some lidocane (SP?) to help with the cath pain and said "Ash, we're going to figure this out.  Do you understand?  It's stopping now.  You're going to feel better.  We're on this."

I think I breathed for the first time in a week.  And then he came back in, "Ash?  We're going to do some tests.  The loss of vision you experienced, combined with your bladder problems has me concerned with multiple sclerosis.   Cue the fountain of never ending tears.

Thank GOD, my primary care physician has a soul and stayed with me, talking me through all of the testing, and the reality of living with MS.

The question loomed over me... MS???? 

When I called Ryan and told him, he cried.  I lamented; obviously he was upset because he loves me... but I couldn't help but think  "He didn't sign up for this.  He didn't ask for a wife with an uncontrollable bladder and vision loss..."  I later got a text saying he's never seen me more beautiful or strong."  He's amazing.

Last Thursday I went to another urologist, who once again had some choice words for the doctor at Mayo.  It felt incredible to be validated.  "So I'm not crazy?  It's not crazy for me to be upset about having to cath myself??"  

He explained with absolute certainty that he'd get to the bottom of this.  That he would NOT send me home with the order to cath myself, without investigating WHY I need to cath myself.  I think the heavens opened up and some hallelujahs were sung.

Again, all I could do was cry.

Friday was my MRI.  I was a wreck.  MS.  MS.  MS.

The doctor called almost immediately after my MRI was done- it was clear.... I let out my breath.  But- and (GOSH I HATE "BUTS")  an MRI isn't 100%- actually it isn't even close to ruling out MS... and the fact that I have my braces (metal mouth...) worried him that it might have thrown the magnets off.

I see a neurologist in 2 weeks for a complete work up.

Today my hands went numb while I was driving.  I called my doctor;  Again, he said it was consistent with a MS flare up. 

Again I cried.

I'm a shell of myself.  My body looks normal.

My insides are disgusting.

I can't look at my kids the same way.

I can't watch them play, interact or enjoy life without sabotaging my thoughts.

I got a stitch fix box in the mail;  I sent it back without even looking in it.  Cute clothes?  Not worth it.  People with MS don't wear cute stuff.  They wear sweat pants to cover their foley bag.

Maeve tells the younger kids "Guys be good!  Mom is sick and she can't handle us right now."  Obviously she's overheard adult conversations and this kills me.

In all my years of being a kid I remember my mom being sick once.  She had skin cancer; melanoma.  And I was terrified.  I knew what the word "cancer" meant and equated that with immediate death.  She got a chunk of skin taken out of her back, stayed in bed for a week and was back at it, taking us to zoos, museums, and Chuckie Cheese in no time.

The thought sunk into me, "I'm going to be that mom... that sick mom.  My kids are going to grow up and say things like, 'My mom can't come to ballet because she has MS.'  Or as they're talking with their therapists, 'All I can remember about my childhood is my mom being sick all the time..."

This kills me.

They don't deserve this.  Ryan doesn't deserve this.  My parents don't deserve this.

And guess what???  I don't even have a confirmation that it IS MS!  HA!  This is just my twisted mind, finding its way to cause panic and upset... it's doing a damn good job.

Today I made an appearance (rare these days- I've taken to my bed almost all day, with my sisters, mom and a babysitter taking care of my kids)... I ran into a friend.  She knew as soon as she saw my face, something wasn't right.  "Without prying, I just want you to know I pray for you all the time."

"I know... thanks."  And then we hugged, and I felt some of the tightness I had built up, release.

On our way home I blasted "Worn" (by tenth avenue north) OVER AND OVER AND OVER again.  I asked Maeve, "Are you tired of this song?"

"No.  It's a good song.  And it makes you feel better so I like it."

Tonight, as I've been doing for the past month, I got the kids situated at the table for dinner and excused myself to the shower.

Broken cries, prayers, and hollow, gut wrenching feelings poured out along with the flow of water.

So where does this end?  I don't know.

 I have another urology appointment on Friday where we'll be scheduling some surgeries to figure out what exactly is causing the urinary retention.  I meet with my neurologist  in two weeks who will make some sort of better/significant diagnosis (or maybe LACK OF?)... in the mean time, I'm not just leaning, but full on PLANKING on faith.

Flat out- PLANK STYLE- me on faith.  That's how it looks.

I read somewhere (and I can't remember for the life of me where... that's another thing- my mind is muddled... and obviously I attribute it to whatever condition this is... when in reality, it could totally be that I'm a mom of 4... totally enough to muddle a mind) that trials bring your heart closer to God.

Let me tell you; that's true friends.

Two weeks ago, I "had it all."  I had hit platinum.  I actually sang to myself that STUPID song, "Instead of counting dollars, we'll be counting stars."  The next morning, it shattered.  Platinum, young living, it meant nothing.

When I say I'm okay; I honest to God mean it.  I am OKAY.  I AM OKAY.  Am I scared?  Yes.  Am I overwhelmed?  Yes.  Am I angry and frustrated?  Yes.  But I have a God that can take on all of that and a million more ailments.  As my friend tonight asked, "Is our God not big enough for this?"

Oh heck yeah.  My God is big enough for this.

So believe me when I say, I'm okay.  I'm okay because I have a God that is holding all of it.  And I have faith; at times its small, when I'm angry, yelling "WHY!?" and other times, it swells, and I feel the full grace and mercy of Him.

Thanks for reading this.  Prayers would be awesome; but there are people hurting so, so, SO much more than me...  and many of those people don't have faith;  they don't know God.  I cannot imagine doing this without Him.  I can't bring myself to think about it;  all of my empty sobs, broken cries- they're heard, and they're filled- ONLY by Him.

And the song?  Yeah... the song.  "Worn"- I've been listening to it for forever.... but right now, in this season of my life, it is my heart's cry.  The words have never felt truer; the lyric, "My prayers are wearing thin even before the day begins..." has never burned more deeply.

So.... listen to the song.   Say a prayer for those who don't know Jesus.  And give thanks; because He is here- in ALL things.  He is right here and He won't let go; even when we're kicking and screaming.  He loves us too much.

I'll keep you all updated on what's going on... Friday is a big day for my bladder (wahoo!) and I should know more about the MS thing in 2 weeks.

okay, enough enough... go watch this video!


PS- I didn't proof read any of this.  It was through tears and written at midnight.... I apologize if its scattered and you can't make sense of it.  Although it's fitting, as that's what my life feels like right now.

1 comment:

Joy Bukowski said...

Not scattered at all. Beautifully written. I love you and your planking faith!