Setback (#keepingitreal)

Start of Lake Loop Trail

Oh. This is so not the post I want to be writing tonight.

But it's time to #keepitreal.

Part of keeping it real means that this post may have typos, be a little rambling and not the most well-written because I am so tired. Bear with me! :)

I've been waiting not-so-patiently for the energy to write blogs about the big shifts, the transformation, the grieving process, the gratitude I feel for the steadfastness of my friends and family, the success of Rowe's Research Runners, and just in general get back to blogging.

I Love the Curly Q's on This Plant!

Instead, I'm here to say that I'm in a crash that hasn't been resolving. 

 I'm taking a little of my energy to write a quick post because I am feeling sad about missing out on everything, guilty about being out of touch and behind on my thank yous (especially for the walk and my birthday), lonely from not being honest/authentic about what is going on, and just plain old bummed that I feel so poopy.

The emotional heartache of setbacks is equally as challenging to me as the physical aspect.

Beautiful Day

I knew I would crash after the work we did for two major events this year:

1. The Healthcare and You forum 

and 

2. Rowe's Research Runners local walk and Baltimore event,

but I had no idea it wouldn't resolve after a couple or weeks or even a month. Or at least improve. 

I was SO looking forward to a Fall of being outside, getting back to walking more, catching up on snail mail and emails and thank yous, blogging again, seeing friends, going out for more fun stuff, celebrating the holidays, going to Friday night services, working with Marc Friedenberg for Congress, Sen. Bob Casey and Ezra Nanes for State Senate, and doing some serious sorting through piles around the house.

Moss + Roots

My body had some seriously different plans.

My fatigue has increased without improving over time, even with DRAMATIC cutbacks in my activity level, more time to rest, and engaging in more quiet activities rather than ones that can be overstimulating. 

The fatigue is always one of the most difficult symptoms because My. Body. Just. Can't. Won't. 

No. Matter. What.

This isn't about will power.

In addition, I'm struggling with the usual--heart rate and blood pressure fluctuations, difficulty focusing/brain fog, difficulty falling/staying asleep but needing a ton of sleep, pain, and some new challenges that require a lot of time, energy and management.

I write this because I realize I often don't really describe what it can mean to 'crash'. It's a term so easily thrown around amongst others with these illnesses, that it becomes part of my every day language. 

On Thanksgiving Day, I texted with three other friends with chronic fatigue and/or dysautonomia. All of us were trying to get our bodies to move from one location to another. Ha! Sometimes, I'm so 'in' that world and language I forget to articulate it to the 'healthy world.'

End of Lake Loop Trail

I've been so quiet because I was waiting to just skip over this little setback and get back into the groove of things. I figured soon enough I'd just resume some of my activities and get caught up with folks. 

Instead, I'm saying "No" to virtually every invitation that comes my way. 

This often leaves me in tears. 

When I do make careful choices to go out, there are often major consequences.

I've zeroed my energy in on four things: 

1. Resting: being with the puppies, watching TV, knitting, listening to a book or music. This also has meant mostly staying off of FB, email and the computer in general.

2. Doing what I can to focus on my body and mind: PT, massage, acupuncture, meditating, counseling, long baths, little walks.

3. Trying to do at least some of the mundane tasks of life so that I don't fall further and further behind! 

4. Making tough choices about when and where to go out. I'm trying to maintain some of a social life without causing more of a setback. 

Winter Is Almost Here

After having easier days, more activity and a little greater semblance of 'normal', it's a pretty tough to 'go back'. It always is. All of us with chronic illness hate, hate, hate setbacks because of their uncertainty, their lack of an end date, their unpredictability, their ability to make us feel like the rug has been pulled out from under us.

And most of the time, we really don't know why we are having a setback. I know all of us looking at my crash are all pretty confused about why I am not seeing any improvement. 

Thankfully, we just happen to be headed to see Dr. Rowe next week (I sure timed that well!). And thankfully, my team locally is always trying to figure out the puzzle that is this crazy body of mine.

Thanks in advance for listening to my #rant. I realized I was isolating myself more by not sharing what's been going on and just dropping off of the face of the Earth!

I hope that I'll be on the flip side of this sooner rather than later. 

In the meantime, I hope for the continued grace and compassion you all show me over and over and over. I miss you and hate being out of touch!

Blessings,

Emily

Note: Photos are from Black Moshannon Park, one of my very favorites. Over the weekend, we went for a drive (one of my favorite quiet things to do when I'm not feeling well) and a little walk along the lake. Having that break on a sunny day was wonderful!

Monday Dog Blog: Expert Napping Tips

Hey! Good morning! 

It's Gershwin here.

Since it's the Monday after a holiday weekend, most of you probably would have preferred to stay in bed this morning, no?

I don't mean to rub it in or anything, but as a dog, I get to nap whenever I want. And napping is what I do best.

I am here with my best tips for my fellow doggy friends.

If you can find someone to cuddle with you, that is the ideal napping condition.

I can fall asleep in about 15 seconds.

Make your human pet you and don't let her move once you are all settled in for your nap.

Maybe she will stay home from work just to pet you and snuggle with you.

Recliners are super comfy to snuggle in too. We often nap with Mommy in hers.

Make sure to find yourself a good pillow.

And find just the right spot for YOU. Tovah has a little different napping style. 

If you feel a little chilly, just grab one of the blankets from your Mommy, like Tovah did here.

Take over the sofa. 

It was made for you, not your people. 

If you have a brother or sister, you can nap together.

Or kick your sister off of the sofa and make her sleep in the DOG beds.

Add a nice cushy stuffed animal to your nap if you'd like. Tovah does.

No matter what, make sure you are napping with just the right combination of style and comfort.

To my human readers: I hope I at least made you smile today!

Happy Monday!

Blessings,

Gershwin (Expert Napper)

Monday Dog Blog: Happy Tricks-giving From Us!

Well, it's official.

Tovah Rose and Gershwin Leor have earned their Novice Trick Dog Titles.

Yes, they have a bachelor's degree in tricks! :)

We completed our class and passed the test.

Above is a video of a 'bonus trick'--both puppies getting into the box at the same time.  Gershwin loves to do this trick. Tovah is less enthusiastic about sharing such a close space with her brother. We're working on it...

We had so much fun taking this class. We had the same teacher who worked with us during the therapy dog training class, and our assistant was one of our favorite buddies from agility classes.

Both puppies LOVED practicing and learning tricks. No matter how crabby I might be, their antics could make me laugh.

In the video above Gershwin shows off (in order of appearance):

Get in (the box)

Go Table

Give Me Two

Shake

High Five

Kiss Kiss

Touch

Circle 

Dance

Roll Over

Crawl

Paws Up

Meditate (we're still working on this!)

Namaste

Go Out (Target and Sit)

Wait

Come

As you can see, he gets so excited about doing his tricks he can't focus! And he is SO proud of himself when he does them!

The puppies can do most of the tricks without using a treat as a lure, but still need treats for a couple of them. We are still working on even more tricks (we might want our Masters Degrees!).

And here is Tovah showing of her tricks (in order of appearance):

Get In (the box)

Shake

High Five

Kiss Kiss

Circle 

Touch

Paws Up

Meditate

Namaste

Roll Over

Dance

We hope these videos make you happy like they do us...

and start of your Thanksgiving week with some cheer.

Remember, if you're getting this in email, you'll need to go to my actual blog to view the videos. Click HERE.

Happy Monday!

Blessings to you at Thanksgiving. 

Emily, Tovah Rose and Gershwin

Monday Dog Blog: Fall Decorating

In the Mums

We had a great day on Sunday afternoon. The weather was warm and sunny, and both Mom and Mommy were hanging outside with us. 

Ready to Decorate with Some Pumpkins 

We helped decorate the yard with pumpkins in preparation for the big upcoming walk!

I Think I Look Good Next to These Mums, No?

I don't like to miss out on anything!

Such a Princess, That Sister of Mine!

Then again, neither does my sister Tovah. She will go to great lengths to get a good view of 'her territory'. 

Seriously? We are ADORABLE!

We're still really enjoying learning so many new tricks!

Our class assistant and buddy, Liz, suggested we BOTH try to get into the box at the same time.

"Get in" is one of the tricks, but isn't it doubly cute with both of us in the box? Mom and Mommy were surprised by our cooperation on this.

Okay. We Did It. Now I Want a Treat!

I am also SO very proud to say that I can finally do Roll Over!

I know, I know, you're like really? What's the big deal? 

Mommy has been working on this trick with me since I was a puppy, and just today it finally clicked! 

Lots of cheering in our house today!

See? I'm getting braver every day.

Happy Monday!

Blessings, 

Gershwin

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