“I just want you well again…’

I whisper these words to my husband  who tosses & turns in his sleep.  But before the words even leave my lips, I feel a strong wave of uncertainty wash over me.  I want to bury myself in his arms & pretend this life we’re living isn’t real.  But it IS real, this is happening to us.  I’ve been stuck in this nightmare for almost three years & I feel like I’ve been fighting all of my young life.  I am exhausted, beyond belief, but I keep pushing myself forward… or perhaps life keeps pushing me…

While you have all anxiously waited on an update about my husband, I spend day after day hoping the next will be better.  Perhaps tomorrow I can write something positive???  But while anxiously waiting for that day to come, another one passes with no change in his condition.  Some days I awaken to find things are unbelievably much worse.

It’s been hard to relive the experiences of the last several months but I feel it’s necessary to share the horrors of Lyme disease & the dangers that exist with treatment.  Especially for all of the others out there who have suffered (or are suffering) similarly to myself.  I believe it’s imperative to bring light to the tragedy that Lyme disease has created throughout our communities and the travesty created by the medical community who refuses to agree on the existence & treatment of late stage Lyme disease.  I assure you that one afternoon spent caring for my husband would convince anyone otherwise!

I almost lost him in April when I once again rushed him to the ER with yet another complication.  He was spiking a fever upward of 104 that left him delusional with intermittent chills & sweats ravaging his body.  He was hospitalized for two weeks with a serious blood infection.  By the time we arrived at the hospital on April 20th his condition had gone septic.  A deadly situation which steals thousands of lives every year.  Staff, Strepp & Yeast were all found growing in his bloodstream, the result of an infected chest port that had been placed under his skin 2 weeks prior.

This was one of the worst things that could have happened.  A blood infection is always something to consider as a possible risk when undergoing long term treatment with a PICC line.   We are both aware of the dangers that come with having a central line & long-term antibiotic treatment.  But, we have no choice,  he must have IV treatment as it is the only viable solution for eradicating late stage disease.  Killing Lyme bacterium is a toxic process; each bacterium leaves behind a trail of toxic waste.  These toxins build up in cells, tissues & joints causing painful inflammation & locked joints.  This reaction, known as a herxheimer reaction, leaves patients substantially more ill during treatment.  Miraculously we made it through… and on our 4th anniversary I laid by his side thinking about our uncertain future, alone, as he slept.

At 6:08AM my eyes snap open.  It’s time for another round of medications, which I help administer every 6 hours through his PICC line (peripherally inserted central catheter).  This is now part of my daily routine, preparing & administering medications to help manage the symptoms of this horrible disease.  This is the reality of our lives, right now (& for the last 12 months).  I never imagined I would begin my thirties this way… And honestly, when we said our wedding vows ‘for better or worse’ … I assumed that meant later, as in ‘old age,’ like when we have grand kids.  But life & death, sickness vs. health, these are the things in life we simply can not predict.

The truth is I am a home nurse & the sole caregiver for my 30 year old husband sick with Lyme disease.  He has been disabled for more than a year.  Thankfully his health insurance is covered through my company, so we can not be denied or kicked off because he is a high risk/high cost patient.  At 27 he was seemingly a very healthy man, strong & independent.  In his early 20’s he lived on a submarine & proudly served his country as a nuclear engineer.  These days he can barely get out of bed by himself.  His symptoms are at their worst first thing upon waking; every joint is stiff & painful, locked into place.  He walks like an old man stooped over a cane for support.  He speaks in fractured sentences & has no short term memory.  He wears a patch that releases pain medication around the clock.  All of this takes quite a heavy toll mentally & emotionally: when your once strong & youthful body falls apart, now betraying you with every step.

While my husband is dealing with some unusual circumstances that make him feel farther & farther away from real life, I manage our daily lives, make calls to doctors & the insurance company & somehow manage to run a business.  Although I have learned more about this disease than the average doctor,  it still has me running to the hospital with one set back after another.  I never had any desire to become a nurse or to study disease.  But I’ve been forced into studying Lyme, learning about medications, treatment options & the politics that surround this tick-borne illness.  And despite the difficult patient my husband can be, (honest to God, he drives me batty!)  here I am.  Watching him day in & day out, eternally hoping that tomorrow will be the day we start to win the fight.

Underneath it all the love of my life still remains.  He is hidden beneath a veil of medications, hidden beneath the complexities & complications presented by his disease, and all I can do is patiently wait.

]]> http://www.amaples.com/blog/2010/08/lymie-life-reality-check/feed/ http://www.amaples.com/blog/2010/08/the-vaughan-sisters/ http://www.amaples.com/blog/2010/08/the-vaughan-sisters/#comments Thu, 12 Aug 2010 02:17:35 +0000 Adrienne http://www.amaples.com/blog/?p=5286

Over the last few years, I’ve had the great privilege of shooting several weddings within the same family.   It’s a wonderful experience & I enjoy these events from the moment I hear about the engagement.  Or in some situations, when a proposal is simply on the horizon!  These events are incredibly special because I already know the family & they already know me.  I’m usually welcomed like a family member… and it’s nice to fall in with a wonderful family.  One such relationship exists with the Vaughan sisters & their wonderful family & friends.

I’ve known the girls now for a few years, after agreeing to shoot Lauren’s wedding here in Kansas City last year.  I was excited to know that Lindsay would have a wedding sometime soon(ish) but there was only one problem- Zoran hadn’t quite proposed…yet.

I met Zoran for the first time at Lauren’s wedding & I had no doubt that these two were meant for each other.  My heart melts when I see the way they look at each other.  And while marriage was a foregone conclusion, planning couldn’t really begin until Zoran popped the question.   She actually already had the dress, florist & photographer before there was an actual date!

This was the first time I’d met Zoran’s family, but they were just as adorable & friendly as the groom.

I had never been to this church before but I was pleasantly surprised.  First of all, the church coordinator was a delightful woman named Marilyn.  The priest was cracking jokes just before the ceremony (always a good sign) & their were no rules.  The light at the front of the church was a bit tricky to balance but the timing of the ceremony was perfect.  Just as the couple began to take their vows, beautiful light shone from the windows high above the alter illuminating them in gorgeous light.

I never get bored shooting at The President Hotel.  We can always create gorgeous light in the ballroom!

All of the images will be ready in about 3 weeks.  Check out AmaplesProofs.com to see the entire set when they are available!

Wedding Vendors Who Made the Day

• Church:  Country Club Methodist {nice light in summer, SUPER easy to work with}
• Reception:  The President Hotel
• Cake:  Take the Cake
• Flowers:  Craig Sole Designs {we LOVE craig! even when we don’t see him, like today.}
• Wedding Gown: Elie Saab
• Bridesmaid Dresses:  Watters
• Reception DJ:  Holmes Music World {these guys are great!}
• Transportation:  Kansas City Transportation Group {love working with this crew!}

*** Remember, every wedding is part of our comment contest.  Each comment gives $1 to the bride & groom.  You can easily get them a gorgeous Fine Art Print for their happy home! It’s easy, all you have to do is leave a comment.

Alright, it has taken a bit longer than usual to get Katie & Mark’s blog post online.  The last couple of weeks have been pretty unusual.  In additional to weddings, everyday work stuff,  I had a bit of a melt down with my email program.  I spent a week trying to get everything back up & running.  It’s  been one thing after another.  I won’t bore you with the details since I’m so tardy with this post!

Katie & Mark were married on July 17th & here in Kansas City we’ve been dealing with a heat wave that has yet to break.  The actual temperature  hasn’t been too terrible but the constant humidity is a different story!  I guess I’ve just gotten a bit spoiled since the last five summers have always provided a nice reprieve from the heat.  On this wedding day, the heat index was an appalling 105 & the company in charge of the transportation sent out a bus with radiator problems.

We had a couple of hours between the ceremony & the reception to take fun photos.  But on our way to a shady location, the bus broke down leaving the entire wedding party & their dates stranded in the miserable heat!  Luckily they just made it to the park before the bus ran out of steam.  Fortunately everyone took this misfortune in stride- they laughed & made the most of their time together.  Even if they were drenched in sweat & we got a ton of hilarious photos!

And I’m not sure if it was simply sheer exhaustion, but the meal the Ritz Charles served was absolutely delicious!!  We had French Onion soup, followed by a spinach salad topped with tangerines & the main course was a tender beef medallion with au gratin potatoes.  It was one of the best meals we’ve ever had at an event- my mouth is watering just thinking about it again!

All of the images will be ready in about 3 weeks.  Check out AmaplesProofs.com to see the entire set when they are available!

Wedding Vendors Who Made the Day

• Reception:  Ritz Charles- Overland Park, KS
• Cake:   Creative Cakes KC
• Flowers:  Flowers by Emily
• Dress:  Alfred Sung
• Reception DJ: Justin Chollet from Holmes Music World {these guys are great!}
• Transportation:  Custom Limousine KC {wouldn’t recommend- since we had a bus break down}

*** Remember, every wedding is part of our comment contest.  Each comment gives $1 to the bride & groom.  You can easily get them a gorgeous Fine Art Print for their happy home! It’s easy, all you have to do is leave a comment.

However a couple of weeks ago we experienced a few wedding ‘Firsts‘ & I thought you might get a kick out of my awkward experience.  I’ve been blessed to have worked with over 200 fabulous brides in the last seven years, and I’ve been fortunate enough to get through each wedding without much drama.  Those who have worked with me before are well aware that I am well-known for being discreet.  We are often dubbed ‘the ninjas‘ by various guests at most every event!

So this story begins just after the ceremony.  As always, I have a limited amount of time to push through a few formals & the church coordinator has pulled everyone back to the alter.  I didn’t intend to do these shots here but everyone is already gathered & it’s hot as blazes outside.  I decide it’s easiest to proceed with a few standard shots- and I already have everyone’s attention: the grooms parents, the brides parents, the wedding party, the attendants-  everyone of note.

I photographed both families, encouraged them to smile & quickly moved onto the next group.  When dealing with the larger wedding party, my voice grew louder as I worked to quickly gain everyone’s attention.  I attempt to catch a somewhat candid shot even though we are grouped at the alter.  I stand encouraging everyone to hug & laugh before moving onto the next shot.  In my peripheral field of view, I see the priest charging towards me wagging a finger in my direction.  He forcefully claims I am being too loud ‘ in front of the sacrament‘.  He exclaims that I sure don’t act like a good Catholic {I am not Catholic}.  He continues scolding flatly stating that confessions are taking place {which they are not}.

I turn back to the crowd & I see dropped jaws.  Apparently I wasn’t the only one in a state of shock.  I smile & tell everyone ‘thats a wrap, lets head out.’  I notice my voice carry with the natural acoustics of the church.  Little do I know that the  priest wasn’t finished with me, he was eagerly waiting around for round two.

It was hot.  The humidity was up- sweat was instant upon opening the church doors.  I pull my bride & groom side for a few quick photos hoping to get a few decent shots before my groom becomes soaked.  I’m analyzing my shot when the Priest taps me on the shoulder.

‘I need a word with you before you leave?’

‘Sir, I am shooting the bride & groom and then I am leaving with them’, I explain.

‘Still, I will require a word with you before you leave’ he insists.

I looked him straight in the eyes & respond, ‘Then let’s have it now, lets hear it’.

‘You were disrespectful in my church. You went to the North where you were specifically told not to be.’

‘No sir, I was specifically told the times in which I was not allowed to shoot.  I was also told to avoid the middle isle.  I did my best to stay hidden from everyone’s sight.’

‘Oh, I saw you!! You were told you were NOT allowed to the North. You are defiant aren’t you?!’  I could see his internal temperature beginning to rise.

I believe I let out a bit of a chuckle before I responded.  ‘I guess so.’  I could feel my own outrage growing.  I might look like a child, but I’m not used to anyone treating me like one!  It was the first time I’ve ever been treated with such disrespect while attempting to do my job.  It was hard not to take personal offense to his clear need for absolute power. I took a deep breath & glanced over at my couple melting in the heat.  ‘My apologies, sir, for breaking your rules.  I was clearly not aware of your exact specifications.’

I could see him instantly begin to relax when the words ‘My apologies‘ escaped my lips.

He went on another minute or so discussing ‘the next time I am to follow his rules or I will not be allowed back…’  But I had already stopped listening.  I’d decided I would never set foot back in his church again.

What some of you might not know is that in addition to photographing weddings, engagements, families & babies I also shoot corporate events & commercial assignments.   Pretty much anything involving people, I’ll shoot!  Since my clients love bragging about me to their friends- we have implemented a new referral program this year (I’ll blog about later this month).  It seems that after 5 years in Kansas City, most of my business is referral based & I would much rather reward my clients than pay for advertising!

I bring this up because Laura & Adam were referred by another one of my wonderful couples!  The best thing about referrals is that it’s usually a perfect fit.  As was the case with this fun, adorable pair.  They started out a little nervous but by the end of the shoot they were total pros & we were laughing and having a great time!

This cute pup is Chloe who just turned 6 years old but still thinks she’s a puppy!  It only took her a few minutes to calm down & she parked herself on mom’s lap so we could get some great photos.