Soup in the Sukkot

Stephanie, Me, Marjie, Lauren, Julia, Sarah, Melissa and Brandon. Photo Bomb by Ellie.

Our Jewish group has been engaging in more activities together lately, and on Sunday we joined together to celebrate the joyous holiday of Sukkot, a holiday I've never celebrated before. 

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. 

One of the girls in the group put up a Sukkot this year and had us over for a harvest themed meal. She made a wonderful roasted red pepper and potato soup and an apple crisp served with salted caramel ice cream. The rest of us contributed salad with apples, local cheeses and nut/seed crackers, pumpkin humus, black bean and corn salsa, chips, noodle kugel, dates stuffed with cheese (amazing!) and another apple crisp! All delicious! 

The Sukkot

I'm really enjoying engaging in Jewish-themed activities with the girls. It's been a busy month celebrating the Jewish holidays, both with the girls and here at home. Earlier this month we had a Rosh Hashanah themed happy hour and the girls came over for apples and honey, honey cake, honey cookies, gluten-free challah, cheeses, carrots with hummus and wine. Kiernan and I also shared a Shabbat meal with one of the Jewish couples we've met, where we enjoyed food themed around the week's Torah portion.

This month has been good for my soul, and reminds me of the importance that Judaism needs to have in my life.

Blessings,

Emily

My Invisible Fight

Invisible Illness Awareness Week always seems to catch me by surprise, and I'm not aware of it until my friend Rachel over at Cranberry Tea Time starts posting about it. 

This year, Invisible Illness Awareness Week falls through October 4th, making for a nice overlap with the start of Dysautonomia Awareness Month.

I'm also loving the theme this year: My Invisible Fight.

This Warrior Shows Off Her Steph Curry Shirt!

Here are some topics Invisible Awareness Week invites those of us with invisible illnesses to think and blog about:

• a fight that you have that no one sees.
• one person who makes you get up and fight each day to have a life
• one decision you fought to make that has been a good thing (or not so good)
• what treatment or medication did you fight for?
• one hurdle that fought to take your hope from you, but you fought to get it back!
• how you keep fighting to live when life wants to get you down
• why you fight for awareness as an illness advocate (or just some man or woman who likes to make some noise)
• one time you fought to stand up for an unjust situation
• what advice you would give someone recently diagnosed about how to choose what to fight about and what to let go of.

In my general life, I dislike just about anything that has to do with fighting, especially in my relationships. I dislike fighting. I dislike conflict. I dislike yelling. A lot.

But, the reality is that as I look back at the past 17 years as a person with an invisible chronic illness, so much of what I do every day is fight. Every day is a battle of sorts. Every day is a fight of sorts.

I fight to get the medications I need. I fight to find the doctors who will help me. I fight to be believed. I fight to put a smile on my face even when I'm deeply struggling. I fight through pain and fatigue. I fight to engage in the things I love. I fight a LOT of emotions--grief, sadness, pain, anger, anxiety. I fight to do things to make me more independent. I fight most of all, though, for LIFE.

Warriors Gear! (The Sweatshirt is Warriors Gear too!)

It wasn't until this year that I finally embraced the idea of myself as a warrior. I am a warrior because of how I fight. I fight with perseverance, resilience, courage and bravery. I fall down a lot, yet somehow I always get up. 

Once Dr. ANS said to me in one of my darkest days:

I’m struck by your comments about feeling like a failure, which is not something that you are, or should be wasting energy considering. I would just repeat that you are doing as well as I can imagine doing in this situation, and I would hope I could respond with as much equanimity as you have shown if faced with the same burdens.

That was over five years ago (during the Year of the Pajama) that he wrote those words to me. Sometimes I have had to hold onto those words with everything I have. I couldn't understand how I could be anything but a 'failure' to my doctors because I wasn't getting better.

It's not about whether I 'get better' or not. It's about whether or not I want to keep fighting. Over and over and over and over again. Dismissive doctor after dismissive doctor. Medication failure after medication failure. Setback after setback. Bedridden, homebound or out and about. One cycle of depression and anxiety after another, one cycle of grief and loss after another. 

A little voice inside me has always told me to to keep fighting. It's always told me that life is worth fighting for, and I thank G-d for that voice. And when that voice went almost silent, others sang the song for me.

The idea that my fight is invisible seems an interesting topic to approach this year in particular, because what most people are seeing in me now is someone who is much healthier and often appears very vibrant. One of my friends remarked that when she sees me out enjoying myself, it's difficult for her to remember that so much of my time still needs to go to resting or napping. It's difficult to believe that my whole day isn't as active or spent feeling so well.

I do feel so much more vibrant. And I have stretches of time during some days where I am only vaguely aware of my limitations. Most of the time though, I'm acutely aware of the fight inside my body. I am acutely aware of the limitations I am fighting against, so desperately wanting to gain more strength so I can engage in life more.

I love my new life so much. When I have a really bad day now, I can hardly make sense of how I ever fought through those really awful days and months and years. 

I think it's important this week, though, to remind myself and others that I'm still fighting a fight. I'm still fighting fatigue, pain, sitting up, standing up, doing a flight of stairs, getting out my own lunch, tachycardia, sweats, forceful heartbeats, difficulty sleeping, and on and on. I'm still fighting for more hours in the day that I am able to function. I'm still fighting for independence. I'm still fighting for more 'normalcy'. I'm still fighting grief and loss. 

Warrior

My fight may be invisible to the naked eye. But I've made part of my life's mission giving voice to my fight.

I am a WARRIOR. I am a FIGHTER. 

A special thanks to the Golden State Warriors and former Davidson College point guard, Stephen Curry, for winning the NBA finals this year after 40 years without a Warriors championship. This warrior and Warriors fan appreciated the win and all that it meant. Curry was a player considered too small and not good enough to be chosen by 'better' Division I teams, yet in his junior year he was drafted by the NBA to play for the Golden State Warriors. The Warriors had loyal fans who believed, but until recently, the team didn't have what it took to make it to the finals. Then after 40 years 'in the desert' (and the same year I turn 40!) the Warriors captured the NBA Championship. They're like The Little Engine that Could. They're FIGHTERS. 

I've never been a big sports fan, but I feel a special camaraderie with this team and with Curry's journey from my little alma mater to being the NBA's MVP. Watching the Warriors blossom at the same time my own life did was very emotional. 

It was as I watched this team known as the Warriors beat all of the odds, I realized that I, too, was a warrior.

I'm the refractory case that no one thought would get better. I'm the person who, it seemed, needed to accept that my life would never look like it does now. 

I fought. I fight. I will keep fighting. I am a warrior.

Be a dancing light,

Emily

Monday Dog Blog: A Little Catching Up On Our Busy Lives!

Freshly Groomed

Well, we've been pretty busy here--busy enjoying the beautiful weather, going to our Canine Good Citizen class with Mommy and Mom, going to agility class (Gershwin and Mom), and most of all, enjoying feeling back to our old selves again!

Mommy has been so bad about blogging, we thought we'd stage an intervention and catch you all up on our lives!

Protective Big Brother 

Mommy and Mom wonder what is going on between brother and sister when they witness this common scene: Tovah Rose is in the bed and I (Gershwin) am steadfast in my brotherly love settled in front of her. They wonder why I do this and why I don't go in the other bed?

Content

Mary and Tovah Rose Chat It Up

You all know how much we love when Nurse Mary comes to fill Mommy's pill packs and syringes. 

Tovah Rose Supervises

I (Tovah) still wasn't feeling very well last time Mary was here, so she took extra good care of me. She put my bed up on a chair next to her and talked to me the whole time she was here.

Very Happy Pups

I made sure she was doing a good job and didn't make any mistakes with Mommy's medicines.

Freshly Groomed

We took a long drive to visit our favorite groomer and don't we just look so cute and happy? We miss her so much and wish she wasn't so far away.

And Pooped

Still, getting handsome is really tiring. I like to chillax like this a lot, but Mommy and Mom laugh at me because they think it is funny.

Got Milk?!

We still get an afternoon snack of goat's milk and goat kefir. I (Tovah) always end up with this silly bearded look!

Got Milk?!

It's worth it, though, for all that tasty goodness.

Happy Monday!

Blessings,

Tovah Rose and Gershwin

Look Who's Driving?!

Test Drive!

It's been a pretty big week here.

On Monday, I said to Mom: "Can I just try driving the car around the block and see how it feels?"

I think she was a little surprised, but said: "Sure."

In addition to driving around the block, I decided to make a trial drive to where I go for PT (just about a four minute drive). 

Since my 'test drive' on Monday there has been no turning back! 

It feels amazing!

I've driven to PT, to acupuncture, to a few businesses to ask for sponsorship for my fundraiser coming up in October, to massage and to CVS. 

When I went for a test drive, I had no idea I would just plunge right back into driving. I've surprised us all. Dad said it made him so happy he cried. 

By Wednesday, Mom had me back on the car insurance making me officially 'legal'. 

Let's be clear about why this is such a BIG. FREAKING. DEAL. 

I have not driven in 14 years. FOURTEEN YEARS!

Up until 2001 I had still been able to do some driving to appointments and such, but had a major relapse and never drove again. The only car I have ever driven for a long period of time was my 1989 sky blue Ford Tempo. So, Mom's CRV seems like a dream!

Thank goodness most of the skills come back pretty quickly. I still have a bit of adjusting to do to how smooth the newer cars drive, feeling comfortable with stopping distances and turns and my parking leaves a lot to be desired. 

Let's see how long it is before Mom and I are fighting over who gets the car. :) (Right now she is excited over how much time she has freed up from schlepping me to and from all of my appointments and on all of my errands.) More freedom for me also means more freedom for those who take care of me.

Blessings,

Emily

Monday Dog Blog: L'Shanah Tovah!

L'Shanah Tovah!

If you're receiving this post in email, please click HERE to view the post with video in Blogger, or click HERE to view the video on YouTube.

Hey! 

It's Tovah Rose and Gershwin here wishing those of you who celebrate a good year! 

We'd also like to report that we are feeling so much better. We are feeling so much better that we have spent a lot of time playing (and fighting) with each other the last couple of days. Just a couple of days ago, we played with each other like we did before our horrible ear infections. Mommy caught it on video because she was just so happy to hear us playing. It was a joyful noise to her.

Everybody who loves us is breathing easier knowing we are feeling like ourselves again.

Blessings to you as we enter year 5776. May it be a peaceful and sweet year.

Happy Monday!

Tovah Rose and Gershwin.

Monday Dog Blog: We're Tired of the Ear Infections!

Market Fresh Goat's Milk! Such a Treat!

These ear infections have really been buggers! We made another trip to see our vet on Wednesday of last week, where we got lanolin plugs placed in our infected ears, some systemic antibiotics, and some pain medicine to take for a couple of days. 

So, we are on the third treatment at this point. We hope this one does the trick.

We're starting to perk up a bit, but we still both don't feel like ourselves. It's hard to believe we've been feeling under the weather for 3 1/2 weeks now. 

We still have been resting a lot, so we don't have a lot of antics to share this week either.

Thank you to everyone who has been so concerned about us, Mommy, and Mom. It means so much to us to know how much we are cared about! 

Blessings,

Tovah Rose and Gershwin