FAQs

Sunday, October 30, 2016

Happy Halloween!





 I carved a pumpkin on Sunday afternoon.

It's always a messy job!



I also got the kids ready to go for Halloween!




They are Ty Beanie Babies and we will be heading over to Hillary Headquarters downtown tomorrow afternoon to give all of the staff smiles and snuggles. Apparently, the staff love doggy visitors, and given the look on Eisha's exhausted face, I think these folks could use some love and cheer. They are working so so hard for our country right now.



Have a wonderful, fun, safe and happy Halloween!

Blessings,

Emily, Tovah Rose and Gershwin




Thursday, October 27, 2016

A POTS Therapy Dog!

Harlow and Jaquie (from CBSN)


When we started our search for a new dog towards the end of Asher's life, we wondered if a service or therapy dog would be a good fit for me. At the time I was still homebound and mostly stuck in a recliner or bed. 

We didn't go that route, instead choosing to get a small companion dog (Tovah Rose) and then getting our 'oops baby', Gershwin.

Still, this month a story about a young woman with POTS and her therapy dog, Harlow, has gone viral. 

What perfect alignment with Dysautonomia Awareness Month! It's great to see awareness of both POTS and what a service dog can do being shared.

It's a heartwarming story and video. It also helps to show how a person with an invisible chronic illness and disability can be helped by a service dog.

Service dogs are typically expensive and hard to get. It also requires that people go for a lot of training with their dog, which was one of the deterrents for. Also, the wait for one can be long. Jacquie seems to have had enough resources to purchase and train her own service dog (and enough energy to do so!). Jaquie is on Instagram and YouTube explaining how Harlow helps her and how she trains her.

It's so exciting to see how Harlow helps this young woman, Jaquie to be more independent in her life with POTS! 

I really hope that more people with chronic illness can experience the joy of having a dog--either simply as a companion or as a service dog.

Blessings,

Emily

Sunday, October 23, 2016

Monday Dog Blog: Another Monday?

T (left) and G (right)


Say what?



It's Monday again?



Well, poop.

We're not ready for another Monday.

You can find us here on the sofa.

It's quite comfy and we've decided (quite recently, in fact) that Mommy and Mom actually bought this sofa for us to make a mess of and ruin.

Ha!

Happy Monday and Go Cubbies!

Blessings,

Tovah Rose and Gershwin




Saturday, October 22, 2016

Stronger Together: Tim Kaine Visits!

In Front of the Stage

We had a super exciting Friday afternoon here in Central Pennsylvania. 

Tim Kaine, our future vice president (and maybe president some day!) came here to speak.


He is a FANTASTIC and Compelling Speaker

What an experience. 

What a man.

What a human being.

What a wonderful speaker. 

What a positive message he brought to the crowd today.

What an example to us all.

What a true public servant.

What a genuine nice guy.


I Was Mesmerized!


I know I can be pretty sentimental and cheesy, but after hearing this man speak, I am so humbled to have been in his presence. 

When I heard Tim Kaine was coming to town I really, really wanted to hear him speak. 

It took some work to make that happen--both on my part and that of the workers at campaign headquarters.


The Stage. We Were Seated to the Side


It was a standing room only venue where folks were expected to arrive 2 1/2 hours before the event if they wanted to be sure to get in for the 2:30 speech.

It's still difficult for me to ask for what I need. And now that I am feeling better, I worry that people will think that I am asking for too much or for something I don't really need. Standing in a hot, crowded, loud room for several hours? That was not going to happen.

I reached out to campaign headquarters and our local Women for Hillary group and immediately heard back that they would do everything they could to make it work for me to attend. 

In the back of my mind, I felt sad thinking that had I asked the Trump campaign for extra help, they might not be so enthusiastic to help--not because I want to see Trump, but because I am sickened that we have a candidate who demeans people with disabilities, women, and Jews and pretty much anyone else.



Behind the Stage


It makes me feel anxious and stressed to ask for what I need, to feel like an inconvenience and to add to these campaign workers already stressful workloads.

But Sarah got what needed to be done taken care of. We found a way for them to make sure ADA seating would be available for me, even if I could not arrive 2 1/2 hours before the event (which I could not). Sarah and Eisha (the campaign staffer staying with us) enthusiastically greeted me upon my arrival. They were so happy I could make it.

So was I.


Me and the Mayor!


The ADA seating was combined with special reserved seating for some of the major volunteers and community politicians. I just happened to get lucky enough to meet and sit next to our wonderful mayor! I also met the woman running for Congress. 

Not only were these great people at the event, but Kiernan was there as well as part of the press coverage. :) 

With help from my dad to arrange parking on campus, help from the Hillary staff, and having Mom with me, I was able to attend this event. 

As we entered I got nervous because outside food and drink are not allowed inside--but I need to take medicine and I need to drink something called Oral Rehydration Solution (ORS) throughout the day to keep my blood pressure up. 

Again, I asserted myself to the Secret Service regarding my needs, and they allowed me to bring in my ORS. I no longer need to use the wheelchair to go to these events, so sometimes it feels like it's almost more difficult to try to explain that I am still a person with a disability. 

It was hard for me to try to ask Sarah to hold chairs for us or my fatigue would mean I couldn't make it through the event. It was hard to ask for her to jump through so many hoops. It was hard to ask the Secret Service for an exception to the no food and drink rule. 

But it was so worth it.

I also remember that it's important to expand our image of what it means to be a person with a disability. It's about so much more than whether or not a wheelchair can be accommodated.




What made it so worth it to see Tim Kaine?

His speech was the most powerful and uplifting part of the campaign experience to date.

This guy is ready. To. Go.

He reminded me of all of the reasons we are STRONGER TOGETHER.

He reminded me why I believe in the Clinton-Kaine team 100%.

He reminded me why I am such a strong Democrat.


Ricardo Introduces Tim Kaine


Tim Kaine was introduced by this incredible young man currently volunteering for the campaign. I think Ricardo might be our first Hispanic president of the United States! What a well-spoken, passionate young man.


I Stole These Two Pics from Ricardo's FB Page!

While Kaine covered a lot of subjects from education to jobs to the economy, the most powerful and lengthy topics were what it means to 1. have equality, 2. elect a female president, and 3. be a Democrat.

Tim Kaine spoke about equality for several minutes. 

He did not miss a single one of us who deserves equality, including people with disabilities.

I remember, in 2008, when I went to see Hillary Clinton speak that she was the first politician I had heard make people with disabilities a part of the mainstream political platform.

I also remember what it took to get me to that event--a wheelchair, a reclining chair, seating in the press area, special entrance to go in, etc. What a difference!

Equality.

For everyone.

As part of this speech, he reminded us that we are 75th in the world when it comes to having women in our government. He reminded us of what it has taken Hillary Clinton to get to where she is today.


Despite Being to the Side of the Stage, Kaine Did a  Great Job Making Us Feel Like We Were Just As Much a Part of the Crowd as Those in Front

He also spoke to the heart of what it means to be a Democrat. 

Tim Kaine seems cut from the same cloth as my Dad and his family. My dad grew up as a Catholic Democrat, or what he called an 'FDR Democrat'. He grew up being told that "Republicans are for the big people, and Democrats are for the little people." 

My parents have raised me to believe, as Tim Kaine said, that as a society social justice and helping others matters. We are not to sit by while someone is left by the side of the road, in need of help, and everyone passes them by thinking it is 'someone else's responsibility.' 

As Tim Kaine reminded us today, so very many people are on the side of the road in need of help. It is our job as part of the government and our communities to lift them up.

When Donald Trump doesn't pay his taxes and thinks this makes him smart what he's really doing, Kaine reminds us, is stiffing our vets. Stiffing our schools. Stiffing everyone by the side of the road.


Future President Ricardo?

This divisive election cycle has only served to make me more firm and clear in what I believe. 

Sometimes we must lift up our communities first, even if it is at the cost of the individual. This is what being a citizen means to me. This also part of what being a Jew means to me. It is important to weight the needs of the community and sometimes sacrifice the needs of the individual for the good of the community.


Our Mayor (And Secret Service Dude)


Before Kaine spoke, we enjoyed speeches from our mayor, our state representative, our county commissioner and Ricardo.

I didn't quite know what to expect of Tim Kaine as a speaker. He's always described himself as boring and just a nice guy. This guy is not even close to boring when he gives a speech! He definitely comes off as a 'nice guy', someone who genuinely cares about others, who believes strongly in the capabilities of his running mate, who is strong in his faith, who respects others, and who passionately believes in his life's work of making lives better for others.


A Volunteer Snapped This For Us After the Event

During this election season, I've found myself defending my political beliefs more than I have since my Davidson days. When I was student at Davidson, only a handful of students were Democrats. Today, I learned that Tim Kaine spoke at Davidson last Wednesday to a crowd of 800 people. Remember Davidson is only 1700 students!

I'm not willing to lose my friendships over politics or religion. But I do find that my friends who differ from me are helping me to clarify and fine tune what I believe.

I will never waver in my focus on social justice or in my belief that we must support our most vulnerable members of society. I believe that women's rights are human rights, that all minority groups from LGBTQ to people with disabilities deserve equality and the support it requires to achieve that, that women have the right to choice when it comes to the excruciating choice of abortion, that the government should and must play a role in our schools, infrastructure, health care, jobs, etc.


Ready to Go!

I've really enjoyed being able to engage more fully in this presidential election than at any other time in my life, especially one this important. 

I want to thank my parents for instilling within me the values that I hold so dear, for fighting for them in their own ways, for spending their lives as sociologists teaching about inequality and injustice in our society, and for believing that contributing to the greater good matters.

I love being part of this process with my mom. I cannot wait to celebrate electing the first woman president with her. Mom has been working so hard on the campaign--canvassing, cooking meals for staffers, hosting Eisha at our home, participating in a letter writing campaign to undecided voters and writing letters to the editor. 

Dad is very pumped up about Hillary too.

Thanks to the staffers who made this incredible experience possible.

Tim Kaine: you're the real deal and you and Hillary are going to rock this White House gig.

Blessings,

Emily


Wednesday, October 19, 2016

Celebrating Sukkot


Julia, Me, Lauren, Nicole and Stephanie
As my health improves, I enjoy engaging in more of things that fill up my soul--one of which is incorporating more Jewish life into the fold.


Steph's Family Sukkot


Tonight, Steph hosted supper in the Sukkot. She also hosted the event last year, and it has quickly become one of my favorites. Tonight, we enjoyed unseasonably warm weather--I was wearing a summer dress!


Roof of the Sukkot


For this holiday it is traditional to erect a temporary dwelling/structure in memory of the 40 years spent wandering in the desert. Sukkot literally means 'booths'. The holiday commemorates the 40 years the children of Israel spent wandering in the desert, but it is also an agricultural holiday marking harvest time. 


Local Leigh Belle and Havarti Cheeses, Dates Stuffed with Chèvre 


Our harvest-themed meal consisted of foods focused on the fall harvest and stuffed food items. We had sweet potato soup, local raw milk cheeses from happy cows, stuffed dates with local goat chèvre, veggies, stuffed grape leaves, sushi (counts as a stuffed item!), hummus, roasted pumpkin seeds, pumpkin cake and wine.


Me, Lauren and Nicole



Annual events are stark reminders of the changes in my life. Just last year, I remember going late to the Sukkot dinner because I needed a longer and later nap, I remember that Mom needed to drive me and I needed someone to bring me home, I remember that Mom had to get all of the food I planned to bring ready on my behalf.


Lights in the Sukkot as Darkness Falls


This year, I went to the farmers market with Mom to pick out the cheeses I wanted to bring. This afternoon, I stuffed the dates, cut the cheese, and got everything organized to go. I still squeezed in a walk with Kiernan and a shower. Other than a short nap, I was good to go to the celebration.

It's remarkable to me how much life can change in a year, and I enjoy relishing each new thing I can do--even if it is as simple as preparing a plate of cheeses and stuffed dates. 

Because every new thing, every little new thing I learn to do or do independently is a victory.

Supper in the Sukkot was a wonderful evening with some great Jewish girls!

Blessings,

Emily


Monday, October 17, 2016

Want to Understand My Illness? Watch This.



If you are reading this in email, you'll need to click here to view the video on YouTube.

Just in time for awareness month, this video is an excellent explanation of POTS, Autonomic Nervous System Dysfunction and Dysautonomia.

If you want to try to understand my illness without doing a lot of reading or thinking, please take the time to watch this video produced by Dysautonomia International.

Not only is this video fantastic, it even features my doctor, Dr. Peter Rowe! Watch for him at 2:35.

"A lot of us as physicians have our own individualized approaches. I try to look at the most important factor contributing to that person's POTS."

--Dr. Peter Rowe--



"How many people have POTS? In all of our experiences here we can say we are overwhelmed with patients who have this condition"

--Dr. Kamal Chemali--



"This is real. And now it's undeniable."

--Dr. Hassan Abdallah--




"Just because someone doesn't look sick doesn't mean they aren't sick."

--Dr. Satish Raj--



"It's almost every organ of the body that's affected by this constellation of symptoms." 

--Dr. Kamal Chemali--


I'll be trying to blog all week about the basics of living with Dysautonomia and raising awareness. 

If you'd like to be part of the movement to find treatments for Dysautonomia, please consider contributing to my fundraiser for the indefatigable Dr. Peter Rowe. Thanks! Here's the link to my fundraising page.

Blessings,

Emily

Monday Dog Blog: Dysautonomia Dogs



Tovah Rose


A video of a young woman with POTS and her therapy dog went viral this week on Facebook. 

Harlow, a 15-month old service dog, helps her owner with tasks such as laundry, dishes, fetching water, opening and closing doors, keeping her safe at the gym, sitting with her when she feels faint or is in pain, and most of all, giving her unconditional love.


Gershwin


So many of us with chronic illness benefit from having a companion animal--therapy dog or not.




Asher taught me that a dog can be completely in tune and intuitive with his owner's illness. He taught me that faithfulness and loyalty are unfailing in a dog.


With Asher in 2010--2nd Worst Year of My Life!


Before Asher, we had two other dogs, both of whom I loved like crazy. However, being home sick with a dog 24/7 creates a very different kind of bond. 





When it was time to find another dog for our family, we seriously considered finding a service/therapy dog for me, however, we discovered the process didn't seem doable for our family for a variety of reasons.


Mr. G: Always By Our Side


Instead we decided that what we needed and wanted more than anything was a dog (oh, right, that turned into dogS!!!), who would be a companion animal, a source of comfort on those long, hard sick days.


Kisses for G


Life has changed so much since we brought these two fur kids into our lives 4 years ago.


Tovah Rose is DEFINITEY Winning this Race!


Even though my health has dramatically changed, I still need these two fur kids of mine more than ever.


Gershwin


Because I'm still chronically ill, I still struggle with the ups and downs of illness and the limitations it imposes on my life. 


This Girl is FAST!


And it's absolutely impossible to go through a day without smiling and laughing at these two bright quirky personalities we have around here.


Tovah Rose


As I heal, the puppies continue to be an important part of my motivation to get up every day and to improve my health. 




I am most in the moment when I am engaged in an activity with the puppies. As many of you know, I was able to take an agility class with them over the summer. 

On our trip to Maine, what gave me such incredible joy was sharing so many adventures with the puppies.


Tovah Rose


In Maine, every day was centered around an outing, and most days we could take the puppies. I think having them with me at Acadia, in Bar Harbor, on the Nature Cruise, sitting outside on the Peace Bench or on the deck at the house doubled my joy.


Tovah Rose


I'm never as happy as I am when I am with these two.

They're funny and goofy and curious and full of life. They get lots of attention and we meet so many new people. 

And they are always here, every day, offering unconditional love. (Or is it conditional on whether or not they get their kefir for a snack?! :))

Mr. G

I love, love, love being able to engage with them more and more with each passing day. Many days I am able to take them for a walk--and it makes me feel a sense of accomplishment to know that, not only, did I get a walk for myself, but I gave them something they really need. 

I get out their afternoon snack every day. It makes all of us happy.

They help keep me motivated to walk farther (or go out for a walk when I really don't think I have it in me!). If I'm struggling to walk, feeling my heart racing and like I'm walking through molasses that day, I'll focus on the puppies and what they are watching or how Tovah wiggles her little butt when she walks or how Gershwin keeps looking up at me to make sure he's doing a good job at walking.


Gershwin Leor Loves to Hang Out in the Flower Beds


Whether at my sickest or the healthiest I've known to date, Tovah Rose and Gershwin are a crucial and important part of my every day well-being, survival, and healing.

I take one of them to my counseling sessions. When I used the wheelchair for all of my outings, I was more likely to go out because we had the dogs with us. It took the focus off of the chair and turned it towards the cute dogs we had. I still find that the dogs are a huge source of anxiety control for me because I spend most of my time answering questions about them, rather than focusing on 'what's wrong with me'. 

The truth is that, sometimes, I wonder if I would have ever had the courage to use the wheelchair had it not been for Asher, Tovah Rose and Gershwin. Using the wheelchair and going places in it has always been one of the hardest things for me.



I'd be lost without these two.




I'm so fortunate to have a Mom/caregiver who is willing to take care of two extra beings so that I can benefit from the healing, love and joy these two offer me.



We had these photos taken last October, almost a year ago to the day.

Somehow, I never shared very many of them.




Today and during Dysautonomia Awareness Month, I felt that Tovah Rose and Gershwin deserved an extra shout out for all that they do for their Dysautonomia Mommy.

They are no small part of this journey.

Tovah Rose


They'd also like to say a little hello to: Sarah (Kristen's pup), Frodo (Rachel's pup) and Mac (Corina's pup) because they know just how much joy these fur babies bring to their mommies with Dysautonomia.

Blessings,

Emily