Getting Our Blue On (In Pictures)...

Photo Shoot with the Local Newspaper!

I can't believe we are exactly ONE WEEK away from both the Baltimore Run AND our local walk for Rowe's Research Runners!

We have been so busy #gettingourblueon here for Dysautonomia and Chronic Fatigue Awareness that I haven't had time to blog. 

I'm also having a major setback, which has made keeping up even harder. 

The energy I do have is focused on the many facets of raising awareness and funds for Dysautonomia and Chronic Fatigue Syndrome and supporting Dr. Rowe.

 This is the cause of my heart, the cause I am called to do all that I can for.

I'd like to share what's been keeping us busy here...

in pictures.

I mean, those of us with brain fog LOVE pictures over text, right?

So, sit back and enjoy, while I show you how we've been getting our blue on. 

To start of the month, Mom and I got our hair dyed blue together. In solidarity. 

This was SO out of the box for me. I loved it so much.

This was part of my #griefjourney and #awareness.

I got touches of pink in my hair for my friends, Marjie, Amy, Elizabeth, Karson, Abby and Amelia who are either currently going through treatment, are survivors, or have left this Earth.

I can't believe Mom put blue in her hair too! 

Even the stylist's daughter decided to get her blue on too!

Check out Abbie's hair!

Sadly, my blue washed out immediately, and we are not sure why. :(

Let's pause to take a break from the fun stuff to bring you up to speed. As many of you know, I am the Team Captain for Rowe's Research Runners as part of the Johns Hopkins Children's Center's participation in the Baltimore Running Festival.

Our Rowe's Research Runners t-shirts arrived on Thursday.

I was SO excited to get them, I tried it on right away.

With my Halloween leggings. 

Ha!

We will be wearing these shirts at the local walk on the 21st!

Yes, you read that right!

In addition to working with the team for Hopkins, I wanted to have a local event on the same day to raise awareness and build community with others. I am meeting more and more people locally with the same illnesses.

We're making lots of cupcakes with blue frosting.

The bracelets are here and ready for our runners/walkers/rollers.

We'll be having a low-key, casual one mile walk/run/roll and reception, raffling off a massage, eating lots of blue cupcakes, and most importantly, raising awareness. 

Friends and family are already supporting the local walk and raising awareness. Here's one family who is #allin for Rowe's Research Runners. 

#marcfriedenbergforcongress

And, of course, I made sure to find the perfect nail color!

If you are interested in the local walk, please click here for all of the details.

We would love to have you join us.

Also, for those of you who get the paper, be sure to check out Sunday's Good Life section for a feature on the walk, as well as the illnesses we seek to raise awareness and funds for.

Rowe's Research Runners is an amazing team of 20 people, including friends, providers, patients, and Dr. Rowe himself. 

Being Team Captain has been a joy! I love getting to know the team, hear each person's story, and learn how Dr. Rowe has also touched their lives.

I'm so very excited for and proud of our team!

One of those team members is my local friend, Megan, who also has Dysautonomia. 

She got a surprise donation from the author Laura Hillenbrand, who also has Chronic Fatigue Syndrome.

Megan and I met through our GI doc! Haha!

Click here to read her story.

#chronicfriends

Awareness is spreading! 

My dear friends from Davidson, Hadley and Kristina, are both traveling to Baltimore to run the race. How do I ever, ever thank them for this?

In addition, Kristina and her husband, Eric, are naturopaths (and I am their patient). Not only are they traveling to Baltimore to run, where they will get to meet Dr. Rowe, but they have created this amazing display at their office! 

Click here to read their story of why they are running and about our friendship.

 You know you want to click to see a pic of Kris and me in 1997. We look like babies!

And here's Hadley! She visited last summer! :) 

My dear friend, Cindy, is also participating as a virtual runner.

Oh. My. Heart.

My friend and neighbor, Bethany, also has Dysautonmia, and she has been doing amazing work with her fundraising. I am so proud--not just of her fundraising--but of her. 

How we both have found ourselves with the same illness we will likely never know, but our lifetime friendship has grown stronger and Bethany has been doing amazing work for the team and the local walk. We are also having a friendly competition over who can raise the most money. Haha.

Click here to read her story.

While Lauren, Daria, Maria and Michaela aren't on the team, some will be at the local walk. I have met all of these young women in the past year (and Lauren's mama Myrta). 

These illnesses are not rare. They are an epidemic. 

I hope the walk will unite more of us in the area who live with CFS and Dysautonomia.

All of us with Dysautonomia and Chronic Fatigue Syndrome want more awareness and understanding of these complex illnesses. 

We want to reduce the stigma.

And we want to support the best providers, educators, and physicians available. 

That is why Rowe's Research Runners--Megan, Bethany, Mom, Kristina, Hadley, Eric, Colleen, Kelsey, Megan, Pacey, Christen, Dr. Rowe, Carla, Jennifer, Sarah, Elizabeth, Cindy, Susan, Dr. Edwards, and myself--are #runningforrowe.

I can think of no better way to give back to the doctor who has given so much, not only to me, but to hundreds of other patients. 

In truth, if you have Chronic Fatigue or Dysautonomia, your life has been touched by this one human being.

I am crazy passionate about raising awareness and fundraising for Dr. Rowe.

Someday, someday I want these words that Laura Hillenbrand has used to describe CFS to be history. 

I want answers. 

I want a cure. 

I want a test. 

I want to know the cause. 

I want treatments. 

If you want me to imitate Beaker perfectly, I can do that too.

If you are able, please consider attending the local walk OR making a donation to our team.

For more about Rowe's Research Runners click here.

For a link to my story and fundraising page click here.

I encourage you to read the stories of the team members (click on Roster), who are all inspiring and passionate about this cause.

Out of 281 participants for Johns Hopkins Children's Center, I am currently in 3rd place for the entire hospital. Four of our participants are in the Top 15. Way to go Bethany, Dr. Rowe and Colleen!

Thank you to everyone who has helped us get this far!

Our TEAM is in 2nd place, which is incredible given that Dr. Rowe is just ONE physician and not a multiple physician department--a true testament to how beloved he is to his patients and how uniquely gifted he is in the care and treatment of his patients while tirelessly investing in research to investigate the complexities of the CFS puzzle.  (Thanks to Colleen for her articulate words here!)

Will you help me get to 2nd place? And keep our team in 2nd place too?

Team goal: $18,000

Personal Goal: $8,000

Thank you.

And don't forget to get your blue on during the rest of the month of October.

Every bit of awareness, every dollar towards research, every piece of the puzzle matters. 

The photo above, captured on a recent Fall day, reminds me of the brightness and beauty of an illness-free, stigma-free life. It also reminds me of the hope and beauty that is always present, even on the hard days.

#onwardandupward #rowesresearchrunners #runningforrowe #awareness #chronicfatigue #dysautonomia #thankyou #keepupthegoodwork #getyourblueon

Blessings,

Emily

Photo Shoot and Article with Dr. Rowe!

My Favorite Pic!

I have some super fun and happy news to share.

While I was wintering at the beach, I left a lot of space open to see where my heart would lead me next. I tried not to fill every moment of my time or to plan 'what I would do next.' 

One day in March I received a phone call from Alicia in the Development office at Hopkins, who I worked with on my previous birthday campaign:

"How would you like to come down to Hopkins for a photo shoot with Dr. Rowe, be interviewed, and be part of a feature on him in the summer issue of the Hopkins Children's Magazine?"

Um...

No need to pause here.

YES. YES. YES!

What I always say is this: anything for Dr. Rowe.

The truth is that most of his patients feel the same way. Most of us found our way to him when no other doctor could or would figure out how to treat our complex cases.

Alicia and Me.
I Love Working with Her!

Mom and I barely unpacked at all from the beach before we turned around for a trip to Hopkins. 

In December, I had met with Alicia and Amanda (who is also part of Hopkins Development), and we discussed ways to help Dr. Rowe's clinic and the goals for it.

This one man show needs someone who wants to follow in his footsteps, who wants to deal with complex and complicated cases, and who can train with Dr. Rowe. Staff beyond Dr. Rowe himself plus funding for research are desperately needed too.

For the first time since I became his patient 13 years ago, I'm increasingly in a place physically to actually help with achieving these goals.

We Are Supposed to Be Doing an Eval and PT stretches.
We are Actually Probably Cracking Jokes.

I was super nervous about the photo shoot. What should I wear?!

I tried on a zillion outfits, took photos, texted with friends, and FaceTimed with Angela so that we could figure out which outfit would be the best choice. 

I told Dr. Rowe to pick out a nice tie. :) Since his outfit choice is typically a 'game day decision, usually made in the dark' this was asking a lot. :) 

Seriously.
He Looks Like He is Proposing to Me Here.
This One Makes Me Laugh.

What I hope you can see from the photos is Dr. Rowe's warmth, humility, humor, and commitment to his patients.

The photo shoot was silly and fun, with Dr. Rowe cracking his goofy jokes.

Alicia: "Show us what you've got Dr. Rowe!"

Oh. My.

Don't egg this guy on!

(I won't even repeat the silliness that evolved as the photo shoot went on...)

He Did a Good Job Picking His Tie.
Oh, Wait, His Wife Picked It! :)

After lunch with Alicia and the photo shoot I had a two hour appointment with Dr. Rowe to re-group and change direction from when I had been there in December. I wanted to focus on getting back on a routine towards more healing, rather than any focus on preparing my body for pregnancy.

It was an incredibly worthwhile and rewarding trip that lead to even more opportunities

to work with Hopkins and Dr. Rowe.

I'm thrilled with the photos we got and very pleased with the article.

They capture Dr. Rowe and I hope they serve as a springboard for more opportunities to raise awareness about his work, the illnesses he treats, and the need for more research and practitioners.

I feel so incredibly honored and humbled that I had this opportunity to work with Hopkins on this article, to hang out with Dr. Rowe outside of the clinic setting, and to find myself planted firmly where I needed to be as I searched for new meaning and direction in my life.

My heart is with Hopkins.

My heart is with the doctor who gives me hope that so many patients with these illnesses do not have.

I was over the moon when Alicia asked me to come down for a photo shoot.

I hope you enjoy the pictures!

Here is the link to the final article!!!!

(If, over the past three years of my birthday campaigns you have donated, you should have received an article or magazine from me in the mail. If you did not, please let me know if you would like a hard copy. I apologize if ANYONE was missed--it was certainly not intentional.)

Enjoy.

And, Happy Birthday Dr. Rowe. If anyone deserves a good one, it's you.

If you'd like to honor Dr. Rowe on his birthday, consider contributing here today. Click on the Rowe's  Research Runners Roster and donate to any team member, including  Dr. Rowe or his wife, Carla and myself.

Blessings,

Emily

Attn: BIG NEWS! Save the Date to #runforrowe

My dear readers,

I'm bursting with excitement to share an opportunity I have to support Dr. Rowe, Hopkins Children's, Dysautonomia and Chronic Fatigue Syndrome Awareness all at the same time.

Hopkins Children's has asked me to be the Team Captain for Rowe's Research Runners as part of the Baltimore Running Festival!!!!!!

Please SAVE THE DATE:

October 21st, 2017

This is the day we're going to show Dr. Rowe how much his work matters. It's the day we are going to show this country that Dysautonomia, Chronic Fatigue Syndrome and related disorders deserve funding. It's the day we unite to support one another--those we love with these illnesses and those of us with them.

If you have donated to my campaigns in the past, watch your mailbox for some 'happy mail.' 

I know it's been a long time since I've posted--it's been a mix of ups and downs the past several months. But, I HAD to post a sneak peak of the race! I hope to write more details soon. I know Fall books up quickly, so I wanted to get this news out to you all. When Hopkins Children's asked me to be Team Captain, I was over the moon.

I hope you'll consider supporting me in whatever way you can--by running in Baltimore, by running virtually, by donating to my page, or by spreading the word. You don't have to be a marathoner! There are lots of race options.

You get a LOT of bang for your buck with this race: You commit to raising $250 and the rest is covered for you. 

Think about how much awareness and money we could raise by creating a BIG team of people #runningforrowe?

If enough folks run in Baltimore, I'll be traveling to see you at the festival!

Click here fore the team page.

Click here for my personal page.

Let's do this.

As Dr. Rowe says:

Onwards and Upwards!

Blessings,

Emily