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I never give it enough credit because I never meant to stay.  The first thing I did when I got that piece of paper in my hand was throw my cap up in the air and run away faster than green grass goes through a goose.  But then I grew up…  And life happened… And I found myself coming back to this sleepy beach town to heal by the sea.  My family smothered me in love and I learned to love again.  So I decided to stay a while.

Even after all this time, a not-so-insignificant piece of my heart remained in the city – our nation’s city – and I felt like aspects of the life I’d lived there would never compare.  And those comparisons slowly chipped away at the hole in my heart I’d worked so hard to patch with a plaster of sand and salt.

As I’ve navigated the latest chapter of the book I call my life I’ve found myself saying “I’m so fortunate to have a great healthcare team far away from here who actually knows what they’re doing. The timing always worked out perfectly so I could get out of town.”

But then I came back, my doctors went on vacation and I was left alone with the vague but uplifting instructions to “write your own story.” Because the truth was that nobody knew what would happen after a few weeks.

Enter Donna. We met at her office just next to the surf shop and across the street from the beach.  The summer heat and salt air wafted around as I shoved my walker aside out of embarrassment and tried to make it to the door. Then we talked… She took pages of notes, shook her head and then examined my body gently.

When we met again she seemed to know the exact right things not only to do but to say but to make me shut up and listen.

“I’ve done the research… Turns out there is none. At least none that applies to you. The fact that you’re getting around as well you are is incredible. You’re a living, walking miracle. Nobody has done what you’re doing and you’re blazing trails for people to learn from in the future.  We can do this together, with your doctors, but you need to listen to your body and heart. It’s time to check your ego at the door and stop doing everything 400%. Use your walker and get over it. This is going to take a while.  One day what you’re doing is going to help guide others in their recovery. But now, with this… You have to write your own story.”

My jaw dropped at her loving boldness and then I said “Wait, what did you say??? Did I use that phrase before? Do you normally say that?”

“No… But that’s what you’re doing. Writing your own story.”

Teary eyed.  Those four words again.   Write.  Your.  Own.  Story.

Suddenly, her words sunk in and I said “Ok… Let’s do it. But first, I need to fulfill a promise to someone else that didn’t know me but was bold enough to show up and speak truth to me when I needed it.  They showed up at my door to give me words of wisdom and gifts to encourage me, but when they asked for a picture I denied them because I was simply too embarrassed about still being bruised and puffy. But today I’ve got their t-shirt on and I want a photo with you. May I just set my walker aside for a moment? I’ll lean against the wall and promise not to fall.

She gave me a joking eye-roll, but finally allowed it.

In that moment, I realized that God knew what He was doing all along when he led my heart back to this little town…  The love and grace I’ve been given here can’t hold a flame to any shiny monument.  And those quietly confident people I’ve met? They’re exactly the type of characters needed to help me walk through this chapter of life.

– Holly

 

p.s. – There’s only one day left to buy a cute t-shirt (click here!) and help raise money for researching rare medical genetic disorders.  (We’ve raised almost $1000 so far!)  Spread the love while spreading the message that we’re all capable of writing our own stories.

It wasn’t very far – ten to fifteen feet at the most.  I could probably get there, but instead I froze.

A few hours earlier I’d walked unassisted to the kitchen to grab a banana and found myself reflexively stopping to clean up the counter.  The simple act of wiping up kid crud made me feel normal again.   But then the swelling returned and with it the tingling…  Then the weakness…  I tried to call for help, but the vibrating cushion let me know that the receiving phone was wedged into the couch and nobody would respond.  I was alone and unable to reach for the sturdy walker I’d grown to loathe.

A month ago I never would have imagined I’d find myself stuck on the couch, staring across the room at an assistive device. My vision blurred and hands trembled from the aggressive doses of medicines coursing through my body to control the inflammation compressing my spinal cord.  As I moved my legs over the side of the couch, I stared at the floor and fought back tears.

“Is this what my life is going to be like? When will this end? How much longer will I have to take these medicines that make my heart race and face swell?  Will I ever surf again?  How am I going to manage transitioning to work when I can’t sit up for more than a few minutes? What if I become too weak to walk and people see? Will they judge me? Will it scar my children to see their mother like this?”

As I looked down I realized I could feel my toes on the smooth floor and knew I wasn’t paralyzed – I was only paralyzed with fear.  I transitioned my weight to my feet and felt my knees buckle underneath me and decided that it would be safest for me to wait for someone to return.  I was going to be okay. In that moment I was just weak – not only physically, but mentally and spiritually.

Reclining back onto the couch I recalled snapshots from adventures I’d had.  Fearlessly climbing up rock faces… Trekking through the Alaskan wilderness…  The feel of my fingers gripping the smooth concrete platform as I slowly pressed my body into a handstand and threw myself off the edge, forcefully flipping into the water five meters below with grace and precision.  That’s who I was.

Surrounded by pillows and ice packs, I closed my eyes and prayed for strength.  Moments later, the familiar pitter-patter of little feet came through the door and I realized I was no longer alone.  “I’m so sorry… I’m so embarrassed to ask… But please help me – I’m too weak.”  My husband brought me the walker and helped me make my way to the bathroom.  Edging down the hall, I found every step easier than the other.   I was able to summon the strength – I simply needed guidance, reassurance, and someone to catch me if I should fall.

Settling into my favorite nook in the kitchen, I allowed myself a moment to escape from reality and check out what was happening in the world of social media.  The first thing that popped up was an image with this quote underneath:

Reading the words, I couldn’t help but feel like I’d been slapped in the face by a truth bomb.  Point taken, God.   These words of encouragement had come from the Instagram feed of a stranger leading a company focused on improving health and  fitness.  Before this latest trial I’d planned on participating in one of Vitality Pro’s fitness camps, but had since started to question when or if that would ever happen.  Meditating upon those words stopped the steroid-fueled roller coaster in my mind and brought me back to myself.

Life won’t always be happy go lucky.  There will be trials and tribulations.  God promises it.

Every day I get healthier and have longer periods of mobility…  Yesterday was a really good day and tomorrow I will finally begin physical therapy. As for today?  I woke up steadier on my feet than I’ve been in weeks and decided I’m going to kill it (at least for a few carefully-planned hours).

I have no idea how long it will take for me to fully recover (and wean off all the medicines), but I know that I will overcome.  Pretty soon I’ll be leaping on ledges and following through with the plans I’d made – perhaps just with a bit more of age-appropriate caution.  My hope is that the lessons I’m learning will stick with me for life and that when I reflect upon this time I will choose to say “Yeah, that was a rough month, but God sure did teach me a lot. I can’t wait to see what He has in store for me next.

–  Holly

p.s. – There’s only eleven days left to buy a cute t-shirt and raise money for rare medical conditions.  Let’s all work together to find the upside of the rough spots in life and support the Ehlers-Danlos Society while we’re at it.  While theillness I’m recovering from is not a direct complication from an underlying connective tissue disorder that I have (Ehlers-Danlos Syndrome), freaky inflammatory and allergic responses seem to be more common in the 1 in 5000 that are affected.  There’s still just too many unknowns and research to be done and the Ehlers-Danlos Society is a non-profit guided by medical experts committed to finding answers.  Get your shirt to support their mission and spread the positivity while you can! (Select the image below or click here for more info)

When you have a family with lots of food restrictions, you have to get a little creative.  It’s taken a few years to get into the swing of it, but I think we can confidently say that we’ve acclimated to eating completely dairy, peanut, lentil, tree nut, seed and gluten free. The only allergen we allow into our house is gluten because we’ve learned to avoid cross-contact to keep me (Holly) safe.

When people hear about our diet, the first thing they say is “Oh my gosh, I’m so sorry – what do you eat?”  Our response – “Well!

Living with food allergies has forced us to eat as much fresh food as possible and many of our meals are close to being vegan, aside from the fact we use bacon liberally to give little dude some protein and fat.   This meal we made the other night is not only completely vegan, it was so easy and delicious that I wanted to share.

Please keep in mind all measurements are approximate because we tend to just make up recipes as we go.

This recipe can be made in less than twenty minutes and leaves plenty for leftovers!  The first step is to start with our homemade hummus.

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Tahini-Free Hummus

Hummus is a staple in our house and we make it fresh almost every day. Because little dude is allergic to sesame seed we make it without tahini, but I can assure you that it’s not short on taste!

Ingredients

  • Two cups of chickpeas, drained
  • Juice of a whole lemon
  • ½ cup of olive oil
  • 1 clove of minced garlic
  • Pinch of salt

Instructions

  • Throw in a blender and blend until smooth

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The next step is to combine it all in a veggie wrap!

Veggie Hummus Wraps 

Ingredients

  • Two (2) to three (3) bell peppers
  • One (1) can of corn kernels
  • One (1) cucumber
  • One (1) head of lettuce. Our favorite is buttercrunch!

Instructions

  • Wash bell peppers and remove seeds
  • Slice bell peppers into ½ inch slices
  • Sear peppers in a large skillet
  • Remove from skillet and set aside
  • Drain liquid from corn can
  • Sear corn kernels. We do this separately from the bell peppers because they cook at different rates.
  • Slice cucumber length-wise to create long slices
  • Wash lettuce and pat dry
  • Peel a piece of lettuce from the head and place on a plate
  • Place a scoop of hummus on top of the lettuce and top with the bell peppers, corn and a slice of cucumber.

Bon appétit!

*** This was written a few months ago before I was diagnosed with Guillain-Barre Syndrome. I was originally misdiagnosed with another illness but shortly after returning home things started getting worse… I’ve since spent a month in the hospital and have been properly diagnosed with AIDP (Guillain-Barre Syndrome) and treated with IVIG. I’m now recovering at home and am buckled up for a marathon recovery. This has been a crazy story, but even with the initial misdiagnosis, this is how it started…***

The look on their faces let me know I wasn’t hallucinating.  “This is a joke, right? I’m moving my feet. I’M MOVING THEM! Why aren’t they moving?”   My husband’s face turned white as every drop of blood was diverted to keep his heart going.  The Dr. avoided my eyes and stared at my feet as if he was willing them to move through telekinesis.

“I can do it. I know I can. I know I can… I know I can…”

But I couldn’t.

The moment I realized I was paralyzed from the waist down was one that will haunt me for life.  I honestly can’t remember much after that other than feeling confused about why the paralysis would come and go and fearful that it would travel up my body and I’d stop breathing.  All I could do was close my eyes and pray as they took tube after tube of blood and eavesdrop as the doctors spoke in hushed tones outside my door.  Nobody understood what was happening, but they knew that things were serious and answers were needed quickly.

Once they deemed me stable for transport I was strapped to a stretcher, loaded into an ambulance and sent six hours from home to the Mayo Clinic.  As I felt the familiar roads move underneath me, I joked about how I was having a bad dream and was going to get out and walk to the beach when I arrived.  Instead, I was greeted by the compassionate smiles and hurried feet of nurses and doctors that seemed to know everything about me and the words…

“We’re so glad you’re here. We’ve been waiting for you.”

Almost two weeks later, I’m walking again.  I’m at home on strict bed rest, pumped full of all sorts of medicines while my body heals.  I can make it around the house supervised, with the aid of a walker in case I should fall.  But I can walk.  At moments, I experience the most horrific, indescribable, spine-crushing pain.  But I can feel.

How I ended up in this situation is one series of unfortunate, bizarre, practically unheard of events after another.  What happened is nobody’s fault and couldn’t have been prevented.  It was just incredibly bad luck.

When the doctors finally settled on their diagnosis, I made the mistake of looking it up.  I’m a data-driven person and my first instinct was to hunt down any and all peer-reviewed, scientifically sound medical literature so I knew what to expect.  The results of what little data I found on the internet ended up being less than encouraging… It turns out that there are just too few cases and effectively no funding for research.  I had officially surpassed being called a “medical zebra” and become a “medical dinosaur.”   The seeming improbability of what was unfolding isn’t the point of this though…

When the neurology team (all six of them) came to present us with their findings, I met them with a long list of questions based on my very limited internet search.  The attending physician stopped me half-way through and told me to put down my list, stop looking on the internet, then he looked me in the eyes and said “Write your own story.”

So that’s what I’m doing.  I choose to write my own story.  I choose to give my body the time it needs to heal, stay off the dark side of the internet, ignore all statistics and write my own dang story. I choose to embrace those words and encourage others to do the same.

As part of writing my own story, I’ve decided to do what I can to help others with rare medical conditions.  It turns out there isn’t a whole lot of money going towards researching rare medical conditions because… they’re rare.  There’s a lot more science, education and outreach that needs to happen and only so little money to spare.  However, two things that will never be in short supply are: a) people wanting ridiculously cute, inspiring t-shirts and b) human resilience.

I’ve chosen to partner with a crowdfunding partner to raise money for researching rare genetic medical disorders by selling t-shirts emblazoned with the words I’m holding so close to my heart.  The goal of this campaign is to sell at least 100 shirts, with 100% of profits going directly towards the Ehlers-Danlos Society.  (But even if we only sell five, they’ll still go to print!) The campaign will be open until June 18th and orders will ship approximately June 28th.  So hurry up and click here or select the image below to buy one for you and a friend- I’m sure they’d love the message no matter what their story is.

– Holly

** 7/25/17 Update –  After raising almost $1000 for medical research and advocacy by buying cute t-shirts, we decided to do a “push goal” of raising money for Guillain-Barre research. Same shirts, another great cause! This time, the proceeds will benefit The GBS/CIDP Foundation International.  To order your t-shirt, click here.

 

I’ve been thinking about this post for a while.  Written it out (in my head) a few times.  But every time, I decided that some things were better left unsaid.  Rationalized that my personal life should remain private.  Or that by being honest about what’s going on, people would look at me differently – either think of me as “the sick girl” or the girl that always ends up over-sharing about her latest dramatic situation.

The longer I’ve thought about it, the more it’s had a power over me…  Making me feel like I should be ashamed for things that are out of my control.  Here’s what I’ve come to realize though… My struggles don’t define me.  What does is how I choose to respond to them.

I choose to be brave and face my challenges head on, with as much strength and courage as I can muster. I choose to be an example to my children of someone that’s faced adversity and overcome it.  I choose to not let my struggles define me.  I choose to find the silver lining in every situation.  I choose to believe in hope and grace and the power of positivity.

Last fall, I was diagnosed with a genetic hereditary connective tissue disorder called Ehlers Danlos Syndrome.  When the doctors told me, I was shocked because I’d never heard of it, but then it all started to make sense.  I was always the “bendy kid” as a child and was nicknamed “Worm Woman” in gymnastics.  My brother made me do circus tricks to scare other kids, but it never hurt and I didn’t mind.  As I grew older, I started having seemingly unrelated unusual health issues.  None of it made sense, but I started to realize it had to somehow be connected.

When I was diagnosed with celiac disease, I thought that was the magic bullet.  Everything would get better! All I had to do was change my diet.  That was easy, right?

Things got better for a while, but then they started to get much worse.  Finally, I ended up at the Mayo Clinic and doctors started sorting it all out.  It’s been nine intense months of visits, tests and surgical procedures, but I can finally say I’m going to be ok.

  • What on earth is Ehlers-Danlos?

NIH summarizes it nicely, so I’ll let them explain:

Ehlers-Danlos syndrome (EDS) is a group of hereditary connective tissue disorders characterized by defects of the major structural protein in the body (collagen). Collagen, a tough, fibrous protein, plays an essential role in holding together, strengthening, and providing elasticity to bodily cells and tissues. Due to defects of collagen, primary EDS symptoms and findings include abnormally flexible, loose joints (articular hypermobility) that may easily become dislocated; unusually loose, thin, stretchy (elastic) skin; and excessive fragility of the skin, blood vessels, and other bodily tissues and membranes. “

  • What’s the incidence of EDS?

Estimates vary, but NIH says that the form I have occurs in approximately 1 in 15,000 people.

  • Which type do you have?

The geneticist believes I have hypermobile EDS (hEDS), but they didn’t bother running more tests to differentiate between hEDS and classic EDS because they said it “doesn’t make a difference in the course of treatment.”  I’ve had a full heart work-up and am seen regularly by a large team of specialists working together.

  • So, does this just mean you’re bendy?

Not at all.  Hypermobility is far more common and can still cause pain and joint issues.  hEDS, on the other hand, is a systemic defect that not only causes joint issues but a wide variety of other issues.   Collagen is throughout your entire body, so pretty much anything with collagen in it can get messed up.

  • What kind of other issues does it cause?

The list is lengthy and I’m still learning about things I have to watch out for.  I try to not focus on the “could have’s” and focus on dealing with improving the current state of my own health.

  • Ok, I’m curious what kind of complications you’ve had…

I’ve had so many fractures and dislocations I’ve lost track, as well as dental issues, neurological issues, pregnancy complications, autonomic dysfunction (POTS), skin issues and freaky allergic reactions.  I could go on about all the related complications I’ve had, but the most dramatic has been a series of spontaneous spinal fluid leaks that very quickly progressed into taking away much of my functioning very quickly.

  • Wait, what? Your spine leaked? Was it from a lumbar puncture? Didn’t that hurt? How did you still function?

Yes, it did hurt and no it wasn’t caused from a lumbar puncture.  I had two spontaneous leaks in different places along my spine, due to a weakened dura around the spinal cord (due to EDS).  The leaking fluid caused intracranial hypotension and my brain to sag, pushing on nerve bundles. (If you’re interested in how all that works, you can read this and this.)

I’d had the leaks at least nine months, maybe more, by the time a sharp neurologist tracked it down.  By then, I was having Parkinsonism and stroke-like symptoms associated with increased time upright.  My vision would become blurred, I had difficulty speaking, and I would have pain so severe it felt someone was stabbing me in the head (as bad as the worst migraine ever).  The symptoms were always worse in the late afternoon, so I’d head into work early and go to bed as soon as I got home.  I got to the point where I was having incapacitating neck and head pain (comparable to childbirth) more days than not and had taken to minimizing and trying to hide the symptoms.

Funny story: I (intentionally) failed to mention to the neurologist some of my symptoms, including a persistent tremor and reflex issues (foot drop) because I didn’t want to be the girl with “all the issues.” The joke was on me because he picked up on both within 5 minutes.  It’s funny because a) he picked up on it and b) cured it.

  • How did you figure out what was going on?

The internist at Mayo asked me when I’d been diagnosed with EDS within 10 minutes of meeting me. I’d never heard of it before and was very confused… Then the savvy neurologist from Mayo pieced together the CSF leaks.  After all the fancy tests I’d had, all he had to do was put me on a table and tip me backwards.  Well, that and seven MRI’s and no less than 40 other highly-specialized physicians before I even got to him…

  • Did they fix the leaks?

We think so!  Just over two weeks ago, I had a high-volume epidural blood patch and within 24 hours I felt like a new person.  I have to continue to take it easy to let it heal, but after everything I’ve been through I’m fine with that!

  • Can a CSF leak happen again?

Unfortunately, yes.  They fixed a symptom, not the cause.  There’s nothing I can do to prevent it, but the good thing is I’ll realize what’s happening sooner next time.

  • What’s the incidence of a spontaneous CSF leak?

The incidence of a spontaneous CSF leak is 5:100,000 but the likelihood is much higher within the EDS population.  CSF leaks are typically from trauma or spinal procedures.

Interestingly,  I learned that George Clooney suffered a CSF leak from a traumatic cause and has talked about it with the media. (Which you can read about here.)

This quote from the article basically sums up where I am in life:

  • So, EDS = 1:15,000 and spontaneous leaks = 5:100,000. How did both things happen to you? Statistically, that doesn’t seem very likely.

I know – crazy, right?  Math is fun, so let’s break this down.

EDS = 1:15,000 = 0.0067% of people

Spontaneous CSF leaks = 5:100,000 = 0.005% of people

Common sense (and conditional probability) says it’s more likely for my dog to hop off this couch and turn into a flying unicorn than for one person to have both conditions.  However, it doesn’t work that way because the two are linked. David Hand describes this in detail in his book “The Improbability Principle”, but if you want the cliff-notes version then I highly recommend this podcast.

  • Is this what you happened to you this past fall when you were all cryptic about something happening?

Nope.  Last August I found out (the hard way) that I had a life-threatening allergy to iodinated IV contrast.  It jacked up my heart and autonomic nervous system and caused all sorts of weird things to happen.  Fortunately, I was at the Mayo Clinic when it happened and they were able to figure it out.  I’m doing much better now, but I ended up getting my driver’s license medically restricted as a result. Treating the CSF leaks have helped with the autonomic issues though, so hopefully I’ll get a full license back soon!

  • Wow, that’s intense. So, what now? Will you get worse?

There’s no cure for EDS and I’ve been told I’ll never get any better than I am today.  All I can do is manage the symptoms, remain positive and find the right balance of exercise, physical therapy, nutrition and medicines to help manage the symptoms.

  • Did all this happen suddenly?

I was born with EDS, but the more serious symptoms seem to have progressed more recently.  There are three main phases of a person’s life with EDS– flexibility, pain and then stiffness.  I’m in the pain phase, which is as fun as it sounds. I have chronic pain from widespread musculoskeletal issues and am learning how to manage it and stay on top of it.  Some days it’s better and some days it’s worse. But I don’t let that keep me from having a smile on my face (most of the time.)

Honestly, I’ve been lucky that the most severe symptoms I’ve suffered have taken this long.  Part of my issues are related to the fact I’ve been so active throughout my life and participating in activities like competitive gymnastics caused me to unknowingly accelerate the progression of EDS complications.

  • You mentioned an allergic reaction. How’s that related?

Mast cell dysfunction is relatively common in people with EDS.  My understanding of it is that your body goes haywire and can have crazy allergic reactions.  What happened to me last fall is a good example.

  • Is there a link to food allergies?

There’s a link, but EDS is a rare disease so there just isn’t enough data on it.  EDS is most commonly linked to eosinophilic esophagitis and mast cell dysfunction.  (Read more here.)

  • Is there a link to celiac disease?

Strangely, yes.  Researchers have found a significant percentage of EDS patients have celiac disease, but aren’t sure why.

  • Since it’s a genetic thing, does that mean your kids have it?

Good question.  The form of EDS I have is autosomal dominant, so each child has an independent 50% probability of having it.  One of my children has been cleared by a geneticist and the other one is not yet old enough to be assessed for EDS. So, I guess the answer is “hopefully not, but we’ll see.” It may or may not be related, but his allergies have been significantly better since he was started on a mast-cell stabilizer (Singulair.)  We will continue to pray that he’s not affected by EDS, but if he is then at least we’ll know how to deal with it.

  • If they do have it, does that mean they’ll have as many complications?

Absolutely not.  While the types of EDS don’t change within families, the severity of complications do.  One person can be mildly affected and the next end up permanently disabled.  It just depends.

  • How are you doing?

Honestly, I’m doing great.  More than anything, I’m grateful for finding a healthcare team that refused to stop searching for answers and for a family that’s been wildly supportive.

Physically, I still struggle. But I have simultaneously decided to not let that stop me (as much as is feasible) and come to terms with that I will never get completely better.

Emotionally, I’m ok. I’ve lashed out in anger a few times (always related to something getting between me and my need for sleep), and am working through the guilt I have for not being “normal.” (Such a silly thought!)

What I have learned is that there are many things that I will never have control over. What I can control is my outlook and how I respond. I have decided to do everything possible to stay healthy and live a healthy life so I can be a better mom for my kids. (And also so I can get back to surfing soon.)

  • Why are you telling us all this?

First of all, I’ve had a lot of people ask. Secondly, I’ve had multiple healthcare professionals tell me I should start sharing (I think because the “weird cases” are entertaining to them.)

Mainly though, it’s because I’m sick of trying to hide it.  It’s complicated and I’ve had to make major life changes as a result. We all face struggles.  We all have pain.  We all have moments that knock us down and take our breath away.  But these things are not what define us.  They are not what define me.  I may bend, but I will not break.

 

For more info on EDS (and to contribute to researching this rare disease) please visit the Ehlers Danlos Society.