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*** 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.

Spring has sprung here in Florida and we’ve been hard at work planting in our garden.  We find that when we plant our own food we not only have a lot of fun, but gain a real appreciation for where our food comes from.


Half the fun of gardening is planning out what we want to grow and busting out all the colorful garden tools.

The kids always love to lend a helping hand and take any opportunity to sow their own seeds.


We have tried a variety of different garden types, but what we currently use is a series of several raised-bed, square-foot gardens.  We constructed them out of cedar and now are up to four beds – three 4×4′ gardens and one 12×3′ bed.






My favorite thing is watching everyone work hard and get dirty. Well, mostly everyone…


And, of course, no garden is complete without a gnome!  We’re looking forward to another season of fresh veg and can’t wait to watch our little seeds grow!

– Holly




Back in fifth grade, I did a research paper on chemicals in cosmetics – despite not actually wearing any makeup, somehow the topic was something I was already concerned about… I remember receiving hand-written letters from executives at big cosmetics companies along with pamphlets and vague ingredient lists and being grossed out by all the chemicals. This stuck with me, and once I graduated from college and found myself having to fix myself up more I was able to stay true to my younger self. I researched cosmetics and household products, and back before blogging was even a thing I started a blog to share my findings with others. But then babies and life happened and I found myself grabbing the cheapest/easiest skincare option I could find…
A few months ago I looked in the mirror and decided it was time to pick back up my old research. I tried out a whole bunch of skincare lines and finally decided to give up on finding something that a) works with my painfully sensitive skin b) isn’t full of harsh chemicals and c) won’t break the bank. Admittedly, I had completely written off any and all products sold directly (“because, if it’s that good why wouldn’t they sell it in the store???”). Fortunately, I remembered that there was this one company with a social conscience I’d heard about but not looked into- Beautycounter. So, one wild Friday night I dug into researching the ingredients used in their product line for safety and sustainability so I could come to my own conclusions. And boy, was I pleasantly surprised! After trying it out for a few months, my whole family is addicted. Not only are the products top-of-the-line, but they are completely transparent about their ingredients – so much so that my super-allergic preschooler has not only tried their line but begs to use it. (He says “It makes my skin feel so good!”) 


For the food allergy parents, just a heads up – there ARE a few products that contain almond oil. However, they are so completely transparent about their ingredients that you know which ones to avoid.  I’m not looking to make money off this –  I just wanted to share because when I find something I truly believe in I can’t help but be overly enthusiastic. My hope is that I can encourage a few of you to research the products you use every day, so in the end you and your family can be safer and healthier!

If you’d love to learn more about Beautycounter products and their mission, be sure to check out their site.  If you’d like to schedule a social and win free goodies, leave me a comment and we’ll chat!

– Holly

Howdy friends! We’ve been taking a hiatus from blogging because… life. We have lots of things planned to post about, but figured we would kick it off with this VERY important post to make sure everyone knows that there has been an Epi-Pen recall! The recall is a “voluntary recall” of 13 lots of Mylan’s EpiPen and EpiPen Jr auto-injectors.

According to the FDA, “While the number of reported failures is small, EpiPen products that potentially contain a defective part are being recalled because of the potential for life-threatening risk if a severe allergic reaction goes untreated.”

As the parent of a child whose life has depending on administration of epinephrine, this is clearly concerning!  The identified batches are:

Product/Dosage NDC Number Lot Number Expiration Date
EpiPen Jr Auto-Injector, 0.15 mg 49502-501-02 5GN767 April 2017
EpiPen Jr Auto-Injector, 0.15 mg 49502-501-02 5GN773 April 2017
EpiPen Auto-Injector, 0.3 mg 49502-500-02 5GM631 April 2017
EpiPen Auto-Injector, 0.3 mg 49502-500-02 5GM640 April 2017
EpiPen Jr Auto-Injector, 0.15 mg 49502-501-02 6GN215 September 2017
EpiPen Auto-Injector, 0.3 mg 49502-500-02 6GM082 September 2017
EpiPen Auto-Injector, 0.3 mg 49502-500-02 6GM072 September 2017
EpiPen Auto-Injector, 0.3 mg 49502-500-02 6GM081 September 2017
EpiPen Auto-Injector, 0.3 mg 49502-500-02 6GM088 October 2017
EpiPen Auto-Injector, 0.3 mg 49502-500-02 6GM199 October 2017
EpiPen Auto-Injector, 0.3 mg 49502-500-02 6GM091 October 2017
EpiPen Auto-Injector, 0.3 mg 49502-500-02 6GM198 October 2017
EpiPen Auto-Injector, 0.3 mg 49502-500-02 6GM087 October 2017

For full information on the recall, be sure to check out the FDA’s recall page here.

Stay safe, friends!

  • Holly