FAQs

Sunday, September 08, 2019

Monday Dog Blog: Fall Days



We love, love, love this weather!

We spend a lot of time hanging out in the yard.

Mommy was excited to catch these sweet photos of us the other day.





We hope we can give you a Monday smile!

Happy Monday!


Blessings,

Tovah Rose and Gershwin

Saturday, September 07, 2019

On Sale NOW: RRR T-Shirts



They're back! Our super soft, not scratchy, trendy RRR T-shirts! We are using bella + canvas again this year because we loved the shirts so much last year.

We've switched up the colors a bit this year.

We've also added more size options. (Youth M and L, Adult XS-XXXL)





Purchase by 11:59 PM September 26th for FREE shipping in time for the event.


Here's the scoop:

I encourage you to be a participant--either locally or virtually.

If you are participating virtually or in person at the local event, you will get one of these shirts as part of your $25 registration fee. Being a participant means you're part of the TEAM. You can post the link to your fundraising page on FB, etc. and spread the word. (There is no fundraising minimum.)

Otherwise, you can purchase as many shirts as you would like HERE for $20 each.


Pacey,  MD


That means that more than $11 from each shirt goes to Dr. Rowe's research. 


Patrick and Erin, CA


Let's just say that last year, our t-shirt sales made a BIG dent in our fundraising goal.

Rebekah and Katie, PA


Important Dates:

If you need your t-shirt shipped (FREE shipping!), please place your order by 11:59 PM September 26th. I'll be placing the order for shipped t-shirts on September 27th for you to have in time for Event Day.

Angela, CA


If you need your shirt for the event locally, I will be placing another order on October 4th. Order deadline will be 11:59 PM October 3rd.

Jess and Drew, CO


Last year we had people from all around the country share their photos of themselves wearing their RRR shirts on October 20th in solidarity with those participating in the Baltimore and State College events. As you know, the State College event was a sea of royal blue as well.


Steph, OH


We hope to continue to raise awareness, create connections and raise money for research, and the t-shirts are one way for us to effectively do this.

Rhonda, AL


Thank you for helping us to make Chronic Fatigue Syndrome and Dysautonomia 'common words' with less stigma and more research!



Rachel, MN

I had so much fun getting your texts of you in your t-shirts. Looking at all of these photos of friends across the country in RRR shirts makes me feel all warm and fuzzy inside. 

I am surrounded by amazing people!

Jess, CO

Thank you in advance for your purchase!

Blessings,

Emily




Wednesday, September 04, 2019

Finding My Way to Creativity

August 2019 Suminagashi Marbling Class 

Since getting sick, I've struggled to find ways to be creative. The fatigue, the pain, the brain fog, the inability to find a comfortable position, the need to be reclining or lying down always limited my options for creativity. I'd get restless and frustrated with even simple sets of directions that were difficult to follow through my fatigue.

These things are all still limiting, but I'm starting to see new openings for creativity.

Until now, I've relied on the joy of photography and writing my blog. But, I rarely have energy to actually go through my photos or do anything with them after I take them! And my mind is racing with blog posts.

Silk Scarf Created During the Class

Recently one of my favorite local artists who 'gets' my illness, hosted a Suminagashi paper marbling class by Diane Maurer, an incredible local artist. Elizabeth has a new art store with space for classes, Art a la Carte, and I was SO EXCITED (yes, SO EXCITED!) to be able to go to Diane's class.

At 2 1/2 hours long and in the afternoon, the class was just doable--except that I needed a ride to and from with Mom. This is where my fatigue still gets me.

Papers and Envelopes Created During the Suminagashi Marbling Class


While getting to interact with other women, learn from one of the most skilled local artists we have, and support Elizabeth's new shop, I learned was able to create these papers and a scarf using the Suminagashi marbling technique, which was quite meditative and, shall I say, almost fool proof. 

It's something I loved, but couldn't manage on my own at home, so having a class was perfect.


Pussy Hats


Up until now, I've tried my hand at knitting small projects over the years. Recently, it's been knitting pussy hats in protest of our current commander in chief.


Pussy Hats with a Little Sparkle


I still knit one here and there, but I've never found knitting super relaxing or gratifying.


Ten Years Ago in 2009--Knitting for David

I'm always terrified of dropping a stitch and having now idea how to fix it!

As you can see, back in 2009 I took on a big project, knitting a baby blanket for my nephew, David, and it's probably the piece I'm most proud of, especially because I knitted that sucker through such incredible pain and feeling like shit.

Again, I was helped by my friend Anne who told me what pattern, stitch and yarn to use.


It Took Me Over a Year to Make This!


Maybe my memories of suffering while knitting have made it more difficult to pick up the knitting needles again and give it a try?


Oh, How I Loved It!

Because, when I look at this blanket, it makes me want to make another one!


I love the finished product. I've never fallen in love with the process.

But with the Suminagashi marbling, I fell in love with the meditative process of creating the designs. And so what if one of the designs isn't just what I was hoping for? It's a lesson in letting go and living in the 'gray zone', which is where I'm desperately trying to learn to live these days.


Doll Blanket for Elsa


The only other creative attempt I've made over the years was hand sewing, to which a high school friend introduced me. I fell in love with that at the time. It was something I could do for 5 minutes or one hour. I could stop when I needed to, it took little concentration, it was meditative, mistakes were easy to fix, it could be done reclining, and the finished product was gratifying.

Alia's introduction to me of this craft idea helped me through some tough, tough times.




But, to make one of these little hand-sewn blankets (of which I've only made two!), I rely on my neighbor to cut and prep all of the fabrics for me, as well as help to pick them out.




Two of my closest friends with CFS and POTS are incredible at handicrafts--specifically knitting and crocheting. I seem to be only aspirational in my desire to do these. I have little patience for trying to understand patterns, learn new stitches, and I stress about mistakes.

What I do know is that I used to love taking time to be creative. Before my illness, I would spend summers making scrapbooks, handmade cards, photo albums, gifts and whatever struck my fancy.

I found my greatest joy in dance--it was the fullest and most complete expression of who I was that I have ever experienced. I miss it deeply. I think I've spent the time since I could no longer dance searching for substitute that would fill my soul the way that dancing did. I also loved the high of playing saxophone (I haven't got enough hot air for that anymore!).

I've never been a gifted or talented artist--art class was always the class in which I needed 'extra help' --but I know that creativity comes in many forms and I know that it's essential for MY life. I was never an excellent dancer. But I loved it and I felt alive when I danced.

The Suminagashi class was a little taste of the high that can come from creating something beautiful.

I hope it's the beginning three very important things for me:

1. Taking time and prioritizing time to be creative
2. Finding more opportunities to be creative
3. Giving myself the freedom to try different ways to be creative 

How do you find time for creativity in your life? What makes you feel alive? What do you love to create?

Blessings,

Emily

Saturday, August 24, 2019

Please SAVE the DATE for RRR!

Our 2nd Annual RRR Surpassed Any Expectations I Could Have Had!


One of the reasons I blog so much less frequently is because of the work I now do to run Rowe's Research Runners. This has been a difficult trade-off, as I really miss blogging. But I also really, really love the rewards of raising money for Dr. Rowe's research, raising awareness, creating connections and feeling that I can give back in new ways.


 I didn't even write about LAST year's event after it happened. (I was a bit crashed out!)


So, this year, I'm trying to be better about sharing more because this event and the work that goes into it occupies so much of my time, energy and heart.

I'm SUPER excited about this year's event and how much it's grown since last year. It's going to be a blast with live music, superheroes, lots of raffle items, kids activities, food and community.

The event will take place exactly eight weeks from today--which might sound far away, but it will be here before we know it! 



Our Baltimore Team! My Co-Captain For This Year is Colleen (far right)


That being said I'd like to ask you to 

SAVE THE DATE 

for the

 3rd Annual Rowe's Research Runners Walk/Run/Roll and Reception in State College, PA on October 20th at 2PM at the Pennsylvania Military Museum.

This is in conjunction with the Baltimore Running Festival which takes place on October 19th, 2019.

You can participate in either location or as a virtual runner.

Please click HERE to learn about RRR, to sign up for the team or register for the event.

Take some time to toodle around on the website as my friend Amy's done a wonderful job capturing the event with photos, descriptions, raffle items, etc.

More details to come, but for now

PLEASE SAVE THE DATE!

Thank you to all of you for your continued support (you've been amazing!)

Blessings,

Emily



Wednesday, August 21, 2019

25th Reunion (and some thoughts on reunions in general)

Adam and Chris are Photobombing Us! :)


I'm not letting another amazing reunion pass by without posting about it! At the end of July, we had our 25th high school class reunion, for which I did a bunch of the planning. I had planned most of our 20th reunion from BED, so to be able to plan this reunion more easily helped me to see how much my life has continued to change in the past five years.


I Adore These Faces

I was so very excited to see these faces. Jess, Kate, Jamie and I were part of a group of eight friends from 7th grade on through high school (although I met Jess in 4th grade! :)) It was wonderful to have Jamie's wife, Urvi, join us and to see Amy after 25 years! 


Ready for the Reunion


I was able to attend the entire reunion, plus stay an extra hour chatting with some folks. I also stood most of the four hours of the reunion. Like, whoa?! This is my whole new life.


25th Reunion Ready!


I don't often look back at old photos of myself, but as I got ready to write this post, I found the pics from our 20th reunion. When I look at the photos of me from this reunion compared to the last one, I am amazed at the difference in my pallor. And, as you can see, I'm sitting the entire time at the 20th reunion. I literally sat on a chair at one of the high top tables and everyone came over to me to chat. This year, I could mingle as much as I wanted (with a few breaks to sit in between).


Kate and Me at our 20th

Apparently, I choose blue and ivory to wear to my high school reunions?


Megan, Jill and I Go All the Way Back to Elementary School


So glad I got to see Megan at both reunions, but we missed Jill this time around.


I Am Sitting in the Presence of Two INCREDIBLE Women Here:
Abena and our English teacher, Ms. Riley


Our 20th reunion was a much bigger event--including a Friday evening event with former teachers. I got to see lots of my favorite teachers and also this wonderful favorite woman, Abena.


Our 20th Reunion Crew


I know that people have become less and less likely to attend their reunions, as is evidenced by the number of people we had this time around compared to five years ago. People seem to feel that social media is "good enough" for keeping in touch. I also think people felt that five years ago seemed like just last year, and were less inclined to attend. That was a bit sad!


Our 25th Reunion Crew


I have LOVED both of our reunions. I've reconnected with people I've lost touch with; I've healed old wounds and miscommunications that went unresolved; I've enjoyed being together in a big group with some of my favorite and oldest friends; I've laughed a lot and hugged a lot of people; I've even connected with folks I didn't even know in high school!


We Haven't Aged a Day!
Megan, Brian, Adam and Aaron


Just making it to my 20th reunion was one of the hardest things I could do physically, but also one of my biggest victories. This time around, it was a little bit hard, but not very, and I didn't crash terribly afterwards. Just a bit!

By the end of the night I could feel myself getting the shakes and struggling to sit up any longer, but compared to how my body used to respond (or compared to not being able to attend at all) this seemed minor.

The most difficult part is getting my ANS to calm down after an event, and usually that requires a lot of medication if I want any sleep at all.


Adam, Aaron, Me, Megan


Facebook is no substitute for seeing people in person, catching up, giving hugs, laughing and talking. I am so thankful to everyone who showed up for our reunion!


Jess and Kate

Forever and always friends with these two!

Reunion in the Restaurant's Solarium


We held our reunion at a local restaurant--with beautiful hors d'oeuvres and signature drinks. It worked out perfectly.


Jame and I Just Joined The Old IM Basketball Team! :) 

Look at all of these friendly faces I've missed seeing!


Jess, Kate, Jamie and Amy

And these women are so special to me.

Look at this Crew! :) 


On Sunday afternoon, our 'crew of four' along with kids and Kate's husband, Brad (also a classmate) went to Jessica's parent's house to chill at the pool. I didn't last very long, but was determined to make it.


Jamie and Her Kiddo


I also got to meet up with Jamie and her kiddos at our local pool on Monday!


The Kiddos


How fun to have everyone's kids all hanging out together while the four of us fell right back into our goofy banter. Jess's daughter, Zoey, thought that we were hilarious as she hung out listening to us. She will soon be just like us with her own friends (she's 12). :)


Poolside Mini-Reunion


We missed the rest of our crew, but I am so very thankful for the time we had together during reunion weekend. Jamie and Jess made a huge effort to travel far for this and I thank them big time.

I still believe in old fashioned reunions. I still believe in taking the time to plan them and reconnect with folks in ways that wouldn't otherwise happen without a planned event. 

Thanks to everyone who has attended the past two reunions! You made it well worth the effort of planning!

See you at our 30th!

Blessings, 

Emily


Sunday, August 18, 2019

Monday Dog Blog: When Mommy and Mom Go Away


Mommy and Mom traveled to Ellicott City last week so Mommy could go to PT as well as meet up with Dr. Rowe. 

Dad and Abbie took such good care of us! 

They also have really nice views of the mountain and a big deck for us to hang out on.

They even let us hog the bed!

Thanks so much for taking such good care of us, Dad and Abbie!

We really appreciate knowing we have somewhere to go that we like--and you know exactly what we need.

Happy Monday!

Blessings,

Tovah Rose and Gershwin