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Tuesday, June 18, 2019

21

My First Tattoo


It's hard to believe that today marks 21 years since I first 'got sick'.

Even though my health has improved significantly in recent years, I still find this day a sobering one. I always find myself feeling 'blah' in the days leading up to my 'anniversary', even if my health is okay.

In an early session with my new counselor, as I told her my story we talked about the years that are in many ways 'lost to illness'. In a moment that took my breath away she said:

"Those years are gone. You can never get them back." 

It's difficult not to try to 'make up' for what feels like lost time, try to pack in all of the things I couldn't do for so long, somehow try to fit everything I missed into my new life. 

I will never get those things back--a career or graduate school or children or any of the other myriad experiences that often take place in the formative years of our 20's and 30's.

In a sense, the finality of her words was what I needed to hear. It felt like the air had been taken out of my lungs. I felt nauseous. 

But, she is right.




Butterfly in our Garden


Those years are not gone in that they made me who I am today. They fortified who I am as a person, my deeply held values, and what matters most to me.

In moving forward, it's about creating my life now. I often forget that I'm not still 23! I sometimes forget that life didn't stand still waiting for me to get better in order to begin again.

It kept moving. And I kept persevering. 



Getting Inked!


In honor of that life and that journey, I got a butterfly tattooed on my arm last August. Over the years, the butterfly has remained a symbol of hope, transition, resilience, beauty and transformation. It reminds me that there will be times when I am in a cocoon and others when I feel fully a butterfly.

It reminds me to keep going.

I chose a monarch because, over the years, I have witnessed many of them landing on the flowers in our yard. It is shaded in corals and oranges with a touch of green to remind me of the grass, trees, and mountains. 

The only element missing is that of water and sky. The original sketch contains blue behind the butterfly, but I couldn't decide if I wanted that or not! So, that can be added later if I decide to do so.

What do you like better?


To Add or Not to Add Blue?


The butterfly is placed as if it casually landed on my arm. I love it. It is a daily reminder of my journey. It is a reminder on the hard days to persevere, to wait for the light to shine again, to know that I might feel like a caterpillar today, but another day I will feel like a butterfly again. It is a reminder on the good days of how far I have come and how I have grown.



A Quote In My Counselor's Office

I set aside the the 18th of June every year just to do something that is meaningful to me.

I'm blogging for the first time in 8 months! Whoa!


New Shop!


This afternoon Mom and I went to a lovely new shop in a nearby town opened by my favorite local jeweler.


Elizabeth and me


I met Elizabeth the first year that I was able to go to our local arts festival after many, many years of being too sick to go. 

I found the perfect necklace. I'll always remember I got this for my 21st anniversary.

As one of my favorite music teachers always says about our days: "Make it a good one." And I did. 


New Necklace! The Photo Does NOT do it Justice!


Despite the fact that my health has taken a bit of a dip lately, it was a wonderful afternoon, after which I napped, ate dinner with Mom and headed out for our evening walk.



A Treat!


And, since it's my 21st birthday all over again, I'm enjoying a bit of La Crema (one of my top favorite wines), too.

Here's a toast to the journey. 

Blessings,

Emily 


Monday, October 08, 2018

It's That Time: Birthday Donations to Rowe's Research Runners

Dear Friends and Family:

It's that time of year again: Rowe's Research Runners and my birthday all in ONE month. :) 

That means I've dyed my hair blue (that was SO much fun!), and I'm here to ask you to donate to the cause that is near and dear to my heart. The mission of Rowe's Research Runners (RRR) is to fundraise, increase awareness, and facilitate connections for people with chronic fatigue syndrome (CFS), dysautonomia and related illnesses. 



Our big event is less than two weeks away, on October 20th. (It's not too late to register! Click HERE for local event details.)

Thank you to everyone who has joined the team, been fundraising, volunteered for the event, purchased a t-shirt or donated!



Here's a little quote from Dr. Rowe about last year's event, which raised over $20,000!

Emily and her team in State College have been awesome,” writes Dr. Rowe. With the donations they and our Baltimore group raised from last year’s walk, I was able to hire a summer research student who herself is a patient in the clinic, and who is interested in a medical career. That student worked on the data analysis and literature reviews for two papers in the past 3 months, and helped with the design and planning of the next phase of our work. She brought a welcome infusion of youth, energy, and computer savvy. In a field without much federal funding for clinical research, the funds from the walk are really important, allowing us to keep a research team together so we can continue to make progress on improving the treatment of potentially disabling conditions like orthostatic intolerance and ME/CFS.”




I have been a direct beneficiary of Dr. Rowe's ground-breaking research. All I want for my birthday, for my life, and for the rest of those living with these illnesses is to see forward progress in research so that we can all live our fullest lives. Because of Dr. Rowe, I'll be spending my birthday week doing things I could never have imagined doing even five years ago.

This week, I'll be going out to dinner with my boyfriend, having dinner with Dad and Abbie, heading with Mom to a nearby small town to try out the new gluten-free bakery/cafe, and seeing Joshua Bell in concert (and going to the reception afterwards to meet him!). 



Every day that I am able to do things without suffering all of the time, I owe to Dr. Rowe. Please join me in celebration of my birthday and the health that I do have by donating in my honor to Dr. Rowe.

We have so much left to do. People like me simply dream of living a fuller, higher quality of life. I would love to be able to function at a level higher than 60% and this cannot be done without the help of people like you and the dedication of the handful of specialists, like Dr. Rowe.





Dr. Rowe has been churning out research much faster, thanks to the funding and help he has been getting from YOU, my generous donors. 

Please remember that EVERY single dollar you donate goes directly to research. You can see from the quote above how impactful your donations are.

Our goal this year? To raise $25,000 towards research. Our team has currently raised $11,961 (between Baltimore and State College).

Please click HERE to donate.

If you prefer to mail a check, you can mail it to:

·       The Fund for Johns Hopkins Medicine
ATTN: Chelsea Kling & JHCC Race
750 E. Pratt St.
Suite 1700
Baltimore, MD 21202

***Please make sure to designate your donation to both Emily Steffensmeier and Rowe's Research Runners.

Thank you in advance for your generosity. 

Onward and Upward,

Emily

P.S. I sent out a version of this in email, but apparently it went to some people's junk mail (whaattt?!), so I'm posting it as a blog as well. :)
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Sunday, September 30, 2018

You Know You Want One of These


**NOTE: Register or Order by October 4th**


I admit it. I am super excited about these Rowe's Research Runners t-shirts which prominently display our super cool logo as well as the words Chronic Fatigue Syndrome and Dysuatonomia.

I loved being a part of the entire process of creating the logo, designing the shirts, and choosing the shirts.

That means I picked a super soft, comfy and lightweight tri-blend shirt by Bella + Canvas in a beautiful heather royal blue. No scratchy shirts for RRR. :)  


On Friday I placed our first order and we have sold over 50 shirts! That's more than $500 towards research!

More than $10 from the sale of each shirt goes to research. Shipping (if you are out of the area) is on me. Yup, that's right. On me.



If you live out of town and would still like a shirt, I cannot guarantee that it will arrive before the actual walk date of October 20th because of the printing time (I expect them the next batch to be ready October 18th, but I did order extras in some sizes in the first printing.)

Here's the scoop:

If you are participating in the local event, you will get one of these shirts as part of your $20 registration fee.

I encourage you to choose to be a participant--either virtually or in person--but if you cannot be at the event and would still like a shirt, the cut off is October 4th.

Let's #goblue on October 20th (and all of October) to raise awareness of Chronic Fatigue Syndrome and Dysautonomia.

Click here if you would like to purchase a T-shirt separately

or 

Click here if you plan to attend the event on October 20th (it's gonna be awesome!)

Remember, either way, if you want to be guaranteed a shirt please register or order by OCTOBER 4th.

Onward and Upward,

Emily




Saturday, September 29, 2018

It's Time to Roll!

Images by Andrea Harmen
Superheroes. Face painting. Food. Friends. Community. Music. Awareness.

That means Rowe's Research Runners is READY to Roll!

Dysautonomia Awareness Month is here!




I am inviting all of my friends to REGISTER NOW to join us on October 20th for our 2nd Annual Walk/Run/Roll and Reception.

**To guarantee a shirt you must register by October 4**



Our Social Media and Website Volunteer Extraordinaire and her daughter


Registration is $20 and includes your t-shirt (which I will post about tomorrow).

Children under 12 are FREE!

A fundraising goal of $100 is suggested. Please consider posting that you are attending and raising money and see what you can raise. Every dollar truly does count.



Oh! There Goes Dad!


Last year's event was such an amazing success--beyond anything I could have imagined. As a team RRR raised over $20,000 towards research, and our local event connected many people living with these illnesses as well as raised awareness. 

That lead to my desire to make this year's event bigger and try to reach more people.


Raffle!


The raffle items from Dragonfly Therapeutic Massage and Day Spa, Happy Valley Improv and Brenda Horner Artworks are amazing! Bring some extra cash so you can win!


Food!


We will, of course, have food, including our signature cupcakes with blue frosting.


Dogs!

Dogs are welcome!

Why? Because our pets are such an important part of the chronic illness experience.




A band called Sauce (a group of Bellefonte High School seniors) will be playing.

We're keeping the music chill so that people with these illnesses will not be too overstimulated by the sound.

Why music?

Because it, too, is an important part of living with and coping with chronic illness.


New Friends also Living with these Illnesses 


Other people with these illnesses will be there for you to meet. 


#friends


And other friends you know will be there.


#friends


And of course, there will be the Alliance of Heroic Hearts to remind us all that we are superheroes!

There will be face-painting and kids toys too!


#dadandabbie

The event is ready to go.

(You've wondered where I've been, right? Planning this!)

All that we need is for you to be there or be square.


#neighborsfor43years


Let's #goblue #runforrowe and have some fun!

While these may be serious illnesses, this promises to be an uplifting and fun event.

Remember:

Superheroes. Face painting. Food. Friends. Community. Music. Awareness.

See you there!

#rowesresearchrunners

Onward and Upward,

Emily


Thursday, September 13, 2018

See YOU on October 20th!



See that guy? 

That's Dr. Rowe jumping for joy over last year's successful event and in anticipation of this year's bigger and better event!

Please check out our website:



Mark your calendars for October 20th, 2018!




Participants at Last Year's Local Event
We had 50 people for our first walk!

Over the past year, I've been working to create a true community through Rowe's Research Runners, and now I can't wait to tell you all about our local event.

I hope to see as many of you as possible at this family-friendly, dog-friendly, whatever your ability-friendly event!



Our One Mile Walk/Run/Roll 2017

We are so excited about this year's local event in State College featuring Alliance of Heroic Hearts (a perfect fit for the heroes who care for us and the heroic warriors living with chronic illness)!

We will have face painting, games for the kids and food. Plus, kids under 12 are FREE! 

Dogs are welcome!

Our raffle includes 4 tickets to Happy Valley Improv, an original calligraphy print by Brenda Horner Artworks, and a one hour massage from Dragonfly Therapeutic Massage and Day Spa!



Photography credit to Andrea Harmen

Please REGISTER as soon as possible! 

To guarantee you get a shirt, register by October 4th.

(The shirts are super cool! And SOFT!)

Registration is $20. 

PLEASE consider setting a fundraising goal (if you don't meet it that's okay) and spreading the word about your participation in this event and why you are raising money. 

My buddy Bethany :)




In the next few blogs, I'll also be sharing more ways for you to participate, whether it be in Baltimore, in State College or virtually; by being a team member or simply being at the event in State College; or by donating.

However you want to be involved, Rowe's Research Runners welcomes you and thanks you!

We hope to see you on October 20th!

Blessings,

Emily