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

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

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

Buried Under, Digging Out

Jenna--Organizer Extraordinaire

For so many years I've felt buried in clutter, weighed down by stuff I don't even know I have, unable to find the things I actually want to be able to find, yet not well enough to tackle the stuff that leaves me feeling buried under.

I've worked with organizers here and there, but I've never found a gem of a person and the perfect fit for me until Jenna. 

It is such a relief to find the right personality match for such an undertaking.

In the past, organizers would rush me through decisions faster than my brain-fogged mind could keep up or give me assignments that I couldn't accomplish during the week or push me past where my energy levels could keep up.

Finally, with Jenna we work at a slower pace. I'm able to take the time to go through things, look at them one more time, and say goodbye. 

Running out of Time to Organize before Kale Arrived!

Rebekah was a wonderful caregiver for me who also chipped in with massages and organizing, but then she got prego and I haven't had help since 2009! :) Thankfully, she still an amazing friend. As you can see, I was using my recliner and pull-out sofa to survive, printing emails and not able to do anything physical to keep up. Rebekah would work while I stayed in the recliner.

Rebekah in 2009

Now that I'm working with Jenna, I've let go of all of my clothes that no longer fit, which means letting go of an unrealistic expectation of 'getting back into my skinny clothes'. 

Now that I've let go of being a mom, getting rid of my own childhood memories and belongings feels less painful and stressful. 

I don't want to keep carrying this weight of stuff around with me. I'm ready to dig out from under the years of stuff that have been piling up.

Not only have we lived in the same house for 43 years, but for the past 21 years I've been sick. That has meant little energy was left for organizing. We dealt with crisis after crisis by having my mom scoop up any items and papers in my room, throw them in a box and stick them in the basement. We've been in survival mode for so very long.

Today happened to be Severe ME/CFS Day, and it's hard to think back on those days that were all about survival, going days or weeks without leaving the house--and doing so mostly to go to appointments. The fact that I'm able to have Jenna here helping me organize and work on finding my way through the stuff that has piled up over those years makes me one of the lucky ones--to no longer be living with one of the most severe cases of ME/CFS.

I'm thankful that, as exhausting as the organizing is physically and mentally, I am able to finally pursue the desire to simplify my life, let go of the past, and only be surrounded by things I really need and want.

Blessings,

Emily

After 18 Years, I'm Reading Again...

First Novel I've Ready Since 2001!

One of the improvements in my health I'm most excited about is being able to do some light reading again.

After 18 years (yes, 18 years...) of not being able to focus to read a book, I'm finally able to read a book again.

It feels amazing.

Some of 2018's Beach Reads

I started seeing improvements in 2018 while we were at the beach. I bought magazines (a huge, but favorite, indulgence of mine) and found that I was able to consume more than just People magazine. Don't 't get me wrong, I still love me some People magazine. :)

In 2019, I found I could read more in-depth, smaller print articles in other magazines. But it still had to be fairly easy to consume material. What I could read, how long I could read and how well I could focus changed significantly from 2018 to 2019.

Upping My Game in 2019 at the Beach

Up until now, I've been consuming all of my books via audible. I LOVE audiobooks and still listen to them for my book club books and other more complex stories, but it also feels good (really good) to have the ability and choice to read. 

Over the past 15 years since I first discovered audiobooks (back then they were on cassette or CD!), I have missed the quiet of reading compared to listening to a book. Audiobooks sustained me throughout the years that I could not read a physical book, and I'm so thankful for the ways in which they allow me to still have books and stories in my life.

Thanks for the Rec, Kate!

One day this Spring while we were out for our evening walk, I spotted The Kiss Quotient in one of the Little Free Libraries near our house. 

It's the first novel I've read since 2001! 

I've never been into reading romance novels, but I certainly enjoyed the protagonist, Stella, as she struggled to believe that someone would see her as more than her disability. 

I loved this part of the story, especially since after the ending of another long term relationship, I'm back in the dating game again:

"She had a disorder, but it didn't define her. She was Stella. She was a unique person."

Stella worries that once Michael knows the label for her eccentricities, she will be 'less'.

I so 'get' this!

I Love Being Able to Mark Passages!

One of the most difficult parts of living with chronic fatigue syndrome is explaining how difficult simple tasks, such as reading, become. Reading online is still very difficult for me. For most of my 21 years of being sick, the brain fog has been overwhelming and consuming. When I listen to a friend talk I'm fighting so hard to remember what they just said. When I try to read, I might read the same sentence over and over again without comprehending. Forcing myself to read or push through the symptoms just exacerbates my autonomic system making me fueled wired and sicker. 

As my fatigue has lifted in other ways, I've noticed that some days I can actually concentrate without feeling like I am pushing through a miserable fog. Other days are still very difficult. Much of the writing I have done over the years has been through a complete haze of exhaustion and difficulty focusing. I'm not sure how I've managed to do it.

The fatigue of chronic fatigue syndrome goes far beyond feeling physical exhaustion. It seeps into our ability to think, focus, read, write, concentrate and speak. When it lifts, I savor it.

It's always been challenging for me to explain to people that I haven't been able to read books and that, instead, I've consumed all of my books via audio. While it took me a while to get used to listening go audio books, once I did, it was something that could help me escape long periods of time when I couldn't sit up or was in too much pain or too weak to do anything else.

People often assume that I have a lot of time to read and do leisure activities, but the reality is that my concentration is so limited that I am quite limited in what I can do and have to be very choosy about what I do.

Lots of Cheesy Reading!

So far, I've just been reading whatever I stumble upon--Pretty Little Liars from a Little Free Library (I wanted to see what all the fuss was about over this series ), a Nicholas Sparks book a friend gave me because it takes place in Sunset Beach, NC. (How does this guy get published with his writing?)

Right now, it's not so much about quality as it is about the pure joy of reading and being engaged in a story.

I'm currently working with an organizer to dig out from under 43 years of crap. That means that I'm finding some treasures in the basement.

I found a few oldies but goodies to read.

Last night I started Are You There God? It's Me, Margaret. 

What a joy to read again! A big bonus is that being able to read before bed, escape into a story and stop my racing thoughts seems to have significantly improved my ability to get to sleep and stay asleep. 

I love young adult books, easy reads or books you remember loving from childhood, but I'm willing to try just about any genre or book, so bring on the recommendations for some books you think I might be able to READ! :)

It's getting late, and my book is calling my name...

Blessings,

Emily

Monday Dog Blog: You Want Us to Pose Together? Forget it!

Whenever we are freshly groomed, Mommy wants to get cute pictures of us. 

But we don't really like to cooperate, especially at the same time.

We don't like to look at the camera at the same time or be next to one another or miss out on chasing a truck so...

Instead, you can just see how cute we are individually. 

It was really difficult for Tovah to stay still when so much stuff is happening outside!

But Gershwin was willing to sit still and even smile for one of the pics!

He wanted to show off all side of his personality. His smile, his serious side, 

and his sad sack side. 

Happy Monday to You!

Blessings,

Tovah Rose and Gershwin