Monday Dog Blog: Flowers For You!

Flowers from Gershwin

Hey! I made this pretty bouquet just for you using flowers from Mom's garden!

I wanted you to start off your Monday just right.

Off Duty

In case you're feeling a little like Tovah Rose was when Mommy took this picture of her.

Second Bed = Pillow

She let me know both beds were for her.

Hey! I Should Get to Sit Here Too, Right?

That's really okay, though, because she took over a chair at the dinner table the other night. 

Oops, I'm Tired

And kind of settled in for a rest while Mom did the dishes.

Ahhh....

What a silly girl.

Mommy's Favorite Snuggler (shhhh...Don't Tell My Sister!)

I would much rather cuddle with Mommy and sit like a little baby. Note how I have my paw on Mommy's arm. I'm so happy when we sit together like this.

Seriously, Mommy, Don't Interrupt Me When I Am On Duty

Lt. Tovah says she's 'got this' when it comes to keeping things under control. When Mommy said her name, she looked back at her like: 'Yo, don't you see I'm on duty here?!"

Hey, Happy Monday!

Blessings,

Gershwin

Monday Dog Blog: *sigh*

Princess Tovah

Listen up, folks.

Lord? Sir? Prince? Help Us Choose for this Guy!

We are seriously bored.

Seriously, Is Anybody Going to Pay ANY Attention to Us

This hot weather is the pits.

Tovah Rose Wore Herself Out One Day. This Was The Result. Totally Collapsed on  the Pillow!

So...

Now G Likes the Pillows Too!

What is there to do but test out all of the pillows,

*sigh*

look pitiful and bored,

*Ahhhhhh*

be super excited when Mom takes a little nap and snuggles,

Pleeaasseeee Sit With ME! :)

and follow Mommy around BEGGING her to sit down and SNUGGLE NOW!

We heard today is supposed to be cooler weather, but RAINY all day.

Shucks.

We are ready for more outdoor time!

Happy Monday!

Blessings,

Tovah Rose and Gershwin

19 Years Sick: New Dreams

Just Chillaxin' with Mr. G This Spring

It's the eve of my 'anniversary of getting sick' or my 'sickaversary', as my friend, Ellen, would say.

When our lives truly change in an instant, we don't forget it. 

June 18, 1998.

As I write this my mood is reflective, emotional, somber, grateful, and most of all, HOPEFUL.

Over the past 19 years, while clinging to hope that I might find some healing, many times things felt more hopeless than hopeful. 

Mom Prom: April 2017

This year, I feel hopeful that I am at the beginning of a new life.

I feel hopeful about finding new dreams and achieving some that have been on hold. I feel ready to let go of others.

Celebratory Dinner!

Tonight (since my actual anniversary falls on Father's Day and I'll be spending that with Dad), Mom made me a celebratory dinner.

We toasted to healing, to feeling hopeful, to being able to enjoy life together, to be free of the endless crises that dominated so many years of our lives, to having more fun and more adventures, to perseverance, to resilience, and to all good things.

Yes, That Would Be a Rhubarb-Strawberry Crisp

Recently, I turned to my mom and said: Would it be an exaggeration to say that I have lost all of the dreams I had ever hoped for after college graduation?

She said it would not.

With ICE CREAM!

A career, graduate school, vacations, being with friends, marriage, motherhood, living independently--all of the things I dreamed of when the world appeared to be my oyster. Not ONE of these dreams has come true.

Even the little dreams like being at friend's weddings or baby showers or reunions or meeting their children or learning how to cook or taking a class or all of the little things most of us do without a second thought mostly disappeared.

How would you feel if every dream you ever had was lost?

It makes me profoundly sad.

My Loves

It's hard not to feel that I 'lost' much of my life to illness. It's hard not to feel that it's not just a little bit unfair. 

It's hard to let go of some of the most precious of those dreams. But it's also time to let go of many of them, and it's getting easier to do so.

Dreams change and dreams evolve.

I'm ready for these new dreams.

This Year's Sand Dollar Finds--All While WALKING On The Beach

For the first time in 19 years, I'm increasingly able to enjoy life, even within my limitations.

For the first time in 19 years, I have enough energy to begin pursuing MY dreams and MY passions. 

I'm no longer only an observer of life. I am a participant in life.

I am an activist. I am an advocate. I am a fundraiser. I am a volunteer. I am dog mom. I am a friend. I am a daughter. 

I love people. I love dogs. I love nature. I love art. I love food. I love good books. I love TV and movies. I love the beach. I love nail polish. I love snail mail. I love to be a girly girl. I love dresses. I love pink. I love tea. I love music. I love texting. I love fireflies, butterflies and dragonflies. I love baths. 

I. LOVE. LIFE.

I never stopped having passions, I never stopped going crazy being trapped in a body that didn't allow me to participate in life. Meanwhile, I maintained and grew in my love of the many gifts that we are given on the Earth.

Being able to actually engage (with limitations) in my passions is what makes me so excited about what lies ahead.

Mardi Gras Mom Prom!

In almost every way (other than the fact that I am getting older), life looks a lot brighter than it did a decade ago. 

In reflecting on what lies ahead, I do feel that there is still time for me to find a life partner; to pursue my passions of advocacy, awareness, and fundraising; to train my dogs to possibly be therapy dogs; to be with friends and family more; and to just generally enjoy and engage in life more.

Beach Bums

Life is uncertain and fragile for all of us, and I am always (perhaps more than most) acutely aware that things could, again, change in an instant. I worry a lot about healthcare and money and losing a parent and getting sick again. 

(Dr. Rowe assures me the sky is NOT going to fall down on me again. :))

Feeling the Water On My Feet

I will always carry a level of grief and trauma that is unique and different from most people my age.

I will always be sad about lost dreams. 

And sometimes it weighs me down. A lot.

I have really hard days--emotionally and physically. 

Because, after all, I am still chronically ill. This is still a 'sickaversary.'

I often feel sad about not feeling well and still missing out on things.

19 YEARS is a really, really, really long time to feel like crap day in and day out.

Most days, though, I find that I am amazed that I can somehow wake up looking forward to what life has in store for me; feeling that even after this much trauma and loss I feel so hopeful about the future; feeling that there is still so much left for me to be and do in this life; feeling hopeful and thankful and blessed. 

The Sky's the Limit

So, today? Right now? I am grateful. I am hopeful. And I'm not just saying that because it's the cliche thing to say.  

I truly am, and I always have been. No matter how sick I am, gratitude and hope have remained central tenants of my life. 

I have been cared for and loved beyond measure. 

Endless Waves and Endless Possibilities
(Mantra, thanks to my friend, Karma)

I raise my arms to the sky and shout: I'm ready for this new life. I'm ready for new dreams. I'm ready for dreams to still come true. I'm ready to welcome what You have waiting for me.

Blessings,

And Happy Father's Day to my Dad--one of my biggest supporters, who always, always, always stayed hopeful. 

Emily/Champ

Monday Dog Blog: Picnics and Pictures

Hey there loyal readers!

We love when Mommy cuddles with us. Too bad she can't do this all. day. long. 

We made her feel kind of guilty when she and Mom were busy hanging pictures in the newly painted den. 

We waited patiently for someone to join us on the recliner but no one did.

Spring and Summer are officially here and we are enjoying being outside. While Mom and Mommy ate dinner outside, Tovah Rose decided she wanted to eat outside too!

We hope this finds you well!

Happy Monday!

Blessings,

Tovah Rose and Gershwin

URGENT: Do You Or Someone You Love Rely On Medicaid?

My post entitled "I Am the Face of Medicaid" reached more people than I could have ever imagined. As a result of the post, I have been connected to think tanks and, just yesterday, CNN.

I have volunteered to help spread the word to make this story about Medicaid happen. If you can help, Lauren with CNN needs a pic from you by 5 PM TODAY. 

This is a simple, quick 5 minute ACTION you can take to raise awareness.

Thank you for your participation. If you participate, please let Lauren know you heard about her story via Emily at Dancing Light's Studio. 

PLEASE SPREAD THE WORD!

Blessings,

Emily

Here is the message from Lauren:

Call for photos from CNN:

"My name is Lauren Cook and I work for CNN Digital. We are looking for Facebook profile photos or Instagram profile photos for a graphic of people around the country who use Medicaid. We are trying to convey how many people are affected by it (70 mil!) across the country. I’m wondering if anyone would be willing to let us use a photo of themselves for the graphic. It would be small, and you would not need to give your name or any statement. We’d like to convey the diversity and magnitude of just how big Medicaid is by collecting as many faces as we can, so we are looking for around 100 profile pictures. If you are interested, please email me a photo of yourself to lcook8@elon.edu by Thursday at 5:00pm. Thank you in advance for your help! Feel free to reach out with any questions or concerns you have."

Monday Dog Blog: We. Did. It! We Are Canine Good Citizens!

Two Very Proud Canine Good Citizens with Mommy

Hey! Guess what y'all?!

We are Canine Good Citizens!

As you can see, we are all super excited and proud of this milestone.

Not ONE, but TWO! :) 

What exactly does this mean? 

It means we passed 10 test items set up by the AKC:

1. Accepting a friendly stranger

2. Sitting politely for petting

3. Appearance and grooming

4. Out for a walk 

(Handler takes dog for a short walk including right turn, left turn, and stop.

5. Walking through a crowd

6. Sit and down on command/Staying in Place

7. Coming when called

8. Reaction to another dog

9. Reaction to distraction

10. Supervised Separation 

(Handler goes out of sight for 3 minutes)

Mommy was most worried about Gershwin passing the last item because he likes to be with her at all times. 

Tovah, Mom and Our Awesome Instructor (Beth) at Puppy Kindergarten 

Mommy found this photo from 5 years ago, when Tovah was just a baby girl. See the corner of a purple chair in the photo? That's a chaise lounge chair that Mommy would recline in during puppy kindergarten, while Mom and the trainer did most of the rest of the work. 

Mommy could only sit up short little bits of time to work on simple commands like sit or down.

When we attended those very first puppy classes, Mommy could not even walk to the part of the store where classes were held. We used The Rolls and then Mommy reclined in the chair while watching class. When I (Tovah) pooped out, I crawled into her lap to rest.

Can You Tell Mommy is Proud of Us? 

Last week, we ALL celebrated a victory together. 

What a journey we have been on together for these past five years.

For Mommy to be able to stand and walk us each through the course individually, plus do the training to get us here is a pretty big deal.

We are still waiting on what kind of special biscuits she's going to get us for are big accomplishment. 

Next up: An agility class this summer!

Happy Monday!

Blessings,

Tovah Rose and Gershwin

Then. Now.

May 2013: Corina and Me

Four years ago, I traveled to DC for one of the most special, memorable and meaningful visits of my life--to meet three other women with whom I had spent a decade corresponding with on a forum for dysautonomia.

My friend, Corina, re-posted a pic of our wonderful memory of meeting one another.

FOUR YEARS AGO.

May 2013: Corina, Nina, Katherine and Me

It took a Herculean effort to get to DC to see these women.

I saw the picture that Corina posted of me in the Rolls--cooling vest and all--headed out to a meal with her. She held my hand the whole way.

I struggled through every moment of the time we all had together. Every moment.

These photos, these memories from years past hit me hard.

So. Hard.

April 2017: Inner Harbor, Baltimore, Visiting Dr. Rowe

Because yes, there was joy. Lots of joy in those hard years.

But it was always through suffering, within suffering, while suffering, part of suffering.

Now, joy can come more fully, sometimes completely, without awareness of physical suffering.

Not always, but sometimes. 

When suffering is present, it is minor compared to just four years ago.

February 2017: Sunset Beach, NC

Corina's post of me just four years ago came a couple of days after I published my post on being The Face of Medicaid. 

In it, I wrote about how much the ACA and Medicaid Expansion has contributed to my ability to achieve improved health.

I said: I don't think it's a coincidence that my health has improved at the same time that my access to care has also improved.

If I needed a visual, if you needed a visual, if the world needed a visual of the changes that can happen with a combination of good health care, hard work, good doctors, family support, and two puppies, here it is.

No Rolls

This isn't intended to be a political post. It's intended as a post of pure, simple, awe-inspiring gratitude for the healing I have experienced.

As painful as it is for me to see the photos of me during the sickest days of my life--actually I don't HAVE photos from those days--it's also the most humbling, overwhelming and gratitude-inspiring reminder of how far I've come, how much I love this new life, and how much I want to keep healing.

Then. Now.

I choose NOW.

Blessings,

Emily