Sunday, June 17, 2018

20 Years Sick, 20 Thoughts (Part II)

6. It's still possible to live a meaningful life. My life feels more focused, clear and and meaningful than ever before. That being said, I am able to look back and see how my life has ALWAYS been meaningful, even in the darkest, most difficult times. 

I have a large circle of friends, including many who live with varying degrees of health. My sickest friends--the ones who worry the most that their life might not be meaningful or who feel like a burden-- are some of the most reliable, emotionally intelligent, empathetic, kind and compassionate people I know. 

In this world, kindness and compassion are more important than almost anything.

7. Research has advanced little in the last 20 years. This makes me sad for myself, for every person I know with these illnesses, and for every person who is newly diagnosed. I recognize that answers for treatment and diagnosis will come after I have lived a life with these illnesses. I stay hopeful that my quality of life will continue to improve, but I rest quietly in the knowledge that research for illnesses that don't have funding goes SLOWLY.

Right now Rowe's Research Runners combines my passions, my story, my quest for meaning and my desire to create change. I like that I'm settling into this new role just as I also mark two decades of living with chronic illness.

keep my hope alive for future generations of people with these illnesses and I do my work for them (and for Dr. Rowe's legacy, of course).

8. My story matters. It took me a long time to be able to say this. And it still feels a little strange to say. How do we use our story as a catalyst for change while remaining humble and focused on others? Just when I think writing is a selfish act, I will get a message telling me how much a post helped someone, validated someone, or served as an ah-ha moment for someone. 

9. Use mobility devices if it means I can have more freedom and be more engaged in the world around me. This is a hard one for a lot of us. Sometimes I still miss the Rolls a bit because it allowed me to go on longer outings. It gave me freedom and allowed me to leave my house. I still use a seat cane for times when I know standing will be hard. 

For people with dysautonomia and/or chronic fatigue syndrome, I would consider using a zero-gravity chair or reclining chair as a type of mobility device. If using one at the movie theater, theaters around town, at services, at a gathering/party means you can go instead of stay home because you can't sit up long enough, use one.

In the same vein, wear compression garments, and wear them with shorts if I want to. If it bothers you, just think how uncomfortable *I* am wearing these suckers!

10. Finding 'people like me' is part of my survival story. I am not sure how I would have endured the last 20 years without the friends I have met from around the world. I spent years on DINET's forum where I got both help for my illness and lasting friendships. I have been friends with some of the women I know for over 16 years now. 

Having friends who 'get it' means I can text them just about anything--emotional and physical--and they understand me. Pretty much no topic is off limits or TMI with us.



Photos: Arboretum, Mother's Day 2018 (May 13th). Viburnum; Apple blossom tree with petals on the ground.

Saturday, June 16, 2018

20 Years Sick, 20 Thoughts (Part I)

It's a couple of days before my anniversary of getting sick (June 18,1998), and I woke up feeling tearful and crabby. I put aside my to-do list for the day and decided to write instead. Every year, this anniversary stirs up a lot for me. 

Here are my 20 thoughts on 20 years sick (published in installments). I've written them from MY perspective only, as I know there is no 'one size fits all' for living with chronic illness. 

1. Mark My Anniversary. Taking the time out to honor the losses and celebrate the victories, allowing myself to feel the emotions of the journey and finding a ritual to mark my anniversary provides healing for me. I have planted trees in our yard; printed words that define my journey and burned them in a dish of floating candles; had a girls night out for drinks when I felt better; treated myself to an outing at Ulta for a makeover and new beauty products; planned a special meal with Mom or simply left the day 100% for me. 

This year I'll spend my anniversary getting a salt stone massage (I've never had this before!) with one of the message therapists that is a tremendous part of my healing journey; have dinner with Mom and our neighbor, Marge, to celebrate her 80th birthday and....

I will be getting a tattoo. Yes. You read that right. I have a consult scheduled the week of my anniversary, and the tattooing will be done in August. I have wanted a tattoo for a very long time, and I'm ready to get a small tattoo that reminds me, in a positive way, of my journey.

2. I now define myself as a person with a disability. This is a huge mental shift. For a very long time, I just said I was sick. I now view myself as a person with a disability. Person first. Always. I am not a disabled person. 

The evolution of viewing myself in this light resulted from the 2016 election. Up until that time, I remember hearing Hillary Clinton speak in our town in 2008. She spoke of PWDs as part of those who matter and who she fights for. I remember thinking: "she's talking about me. And she's including me in her language."

But I didn't fully recognize myself as a PWD at that time. Now I do. This shapes my passion for activism for all PWDs, not just people with my illnesses. 

It's lead me to meet with my congressman, campaign for candidates who support healthcare for all and protection of people with disabilities, work for affordable healthcare, connect with larger healthcare organizations and, in general SPEAK OUT.

Relatedly, I now say: "I live with a chronic illness," rather than "I'm chronically ill." For so long I have put so much emphasis on my illness that it is as if I shake someone's hand and immediately say: "Hi! I'm Emily and I'm chronically ill." My counselor compared it to her going up to someone and saying: "Hi my name is E. and I'm gay!" Chronic illness is a part of me, but it is not all of me. Shifting this perspective is still in process. I find that I am most fearful of chronic illness as an immediate deal breaker when trying to date.

3. How others view me is their issue.  I surround myself with people who view my journey as one of resilience, perseverance and light. I don't have time for people who cannot see past my illness to my core or who see it as a weakness or something to pity.

4. I'm letting go of shame. We live in a society that wants women to be young, healthy, skinny and uncomplicated. For so long I have felt shame over being a person with a disability; over being sick; over living with illnesses that many people do not believe exist or are deeply misunderstood; over being sexually assaulted; over being a Medicaid recipient; over not being skinny. I've even felt shame around not being married, not having a career and not being a mom, as is 'expected' by society.

That's a lot of shame to carry around. I would rather pronounce myself a survivor, an advocate, and a person whose life experiences shape her world view for positive change  than as someone who has so much to be ashamed of. 

I'm no longer going to check off all of those boxes of shame.

5. Chronic illness affects and effects every aspect of my life. Every. Single. Thing. Every moment of every day. Period. It has become our 'normal.' We are so used to my sleep schedule, my medication schedule, planning out how to make things doable, figuring out foods to eat, etc. 

In this same vein, managing my health has to be my full-time job and number one priority. If I don't keep managing and maintaining my health front and center, I lose even more of the freedoms I do enjoy now. I don't love this reality, but I'm trying to accept it and honor it rather than push against it.

I never rest in stability. As I say: "It's always something with me." The last 20 years have literally been one empirical trial after another.



Photos: Tulips at the arboretum on Mother's Day 2018 (May 13).

Friday, June 01, 2018

I Can See Clearly Now

Sitting down to blog feels like home. Why do I wait so long to make time for this little place I love?

The last few times I wrote, things were hard. Really hard.

We finally figured out that the clonidine was causing my depression. Having a medication alter my mental well-being so powerfully is confusing and disorienting. I can use all of the tools in my toolbox to claw myself out of depression to no avail. I was at the beach--my favorite place--and I could not enjoy it.

Now that I have weaned off of this medication my mood is back to my 'norm' and I feel like myself. 


Not only do I feel like myself again, I find myself in a new and better headspace as I approach my 20th anniversary of getting sick.

I may be sick. I may have very limited functioning. I may be at about 40% right now.

But in the midst of all of this, I've found a new and joyful light.

My life is full. My life is good.

I have a beautiful life filled with things I love.

It is filled with people I love, the dogs I love, and a more clear focus on my passions than I have ever had before. I'm also supported by a tremendous medical team and I am cared for by a tireless caregiver. I live with all of the comforts I need at home, including good food. :) 

I find myself feeling the abundance in my life. 

I still struggle to accept and recognize that the 'medical grind' will simply be a part of my every day life. Always. I want to stop pushing back against it all of the time, wasting my precious energy on something I cannot control. 

With me, it will always be something. When I think I can come up for a breath, something else pops up. That's not being negative. That's just the reality. It's time now to allow for the space and the acceptance that maintaining and managing life with chronic illness is time-consuming. 

It takes away from the time I have to be with my friends, family and passions.

The precious energy I do have left after my medical needs are met and I *try* to keep up with mundane tasks of life is spent on the things that matter most to me.

This has meant saying "No" to a lot more things so that I can reserve the limited energy I do have for friends, family, fur-babies, Rowe's Research Runners, writing and activism. I also need time to rest with TV or listening to a book. I also need my spiritual fix--in nature or at synagogue. 

I feel more focused and clear about where my limited energy must go. I still struggle to fit in what I need to nourish myself physically, emotionally and spiritually no matter how much I feel like I have cut things out and honed in my priorities. 

Living (with or without chronic illness) is always a journey and a process. 

Being able to find my way with a clear head, out from the cloud of the depression from the clonidine, leaves me feeling that as I ready to mark 20 years since my life changed so dramatically, I'm in a place of more peace than I have ever been.

There will always be grief and pain on this journey. 

I'm not going to sugar coat that.

What I will do is see clearly how beautiful and full my life is in spite of its challenges.



Sunday, May 06, 2018

Monday Dog Blog: Six and Sassy

Tovah Rose is Six and Sassy!

She celebrated her birthday in style.

The birthday pup wore a pink and white polka dot bandana with gold script stating: "The Birthday Girl," as well as a sparkly hot pink bow adorned with a bit of bling atop her head.

Tovah Rose Blossom of the Valley got all dressed up the evening before her birthday so that she could wake up fully dressed and ready for the her day.

At the stroke of midnight on her birthday, Mommy serenaded Tovah Rose, who licked Mommy's face--either because she appreciated the gesture or wanted Mommy to stop her terrible singing. 

A full body massage followed, during which Tovah Rose savored the attention.

Tovah Rose awoke on her birthday morning to a beautiful sunshiny day--a birthday wish come true--a day of hours spent in the yard watching birds and bunnies!

She took time out to pose for some birthday portraits but had a difficult time holding still, as there was so much to see and do on her big day.

An afternoon party consisted of being serenaded by Mom, Mommy and Gershwin. The dessert of choice was a small Cloud Star Wag More Bark Less biscuit topped with peanut butter and a candle, which the birthday pup seemed to know was destined for her tummy.

Gershwin received a similar treat (sans candle) as well.

Next, the two pups in attendance opened presents--although the birthday princess didn't really need or want help from her brother, who stole her new pink elephant toy.

After much enjoyment of shredding the tissue paper and discovering two new squeaky toys, Tovah Rose seemed quite happy with her celebration.

After a nap and some dinner, she spent the rest of the evening outside in the yard--going toe to toe with the bunny on the other side of the fence.

She settled in for a little TV with Mom and Mommy, during which Mommy gave her another massage.

She wore that bow and bandana as if to let the world know that being six and sassy suits her just fine.

She loved being the birthday girl and we loved celebrating our sassy six year old.

We just can't believe our baby girl is so grown up!

We love you so much little one,

Mommy, Mom and Gershwin

Friday, March 30, 2018

Sunset On Sunset: A Little Meditation

I'm done with as much packing as I can do tonight, taking time to drink my bedtime tea, and reflecting a bit on our fifth year at the beach.

We said 'goodbye' to the beach yesterday with a short visit in the midst of our packing.

Clearly, I need to work on my selfie skills. And why, yes, I DID get my hair chopped! :)

This year at the beach was a little bit harder and rockier than last year with my sprained ankle, illness on top of illness, and feeling much crummier than last year. 

It's a lesson in understanding that a 'change of scenery' won't wash away the illness--even as much as I wish that were the case. Chronic illness is chronic illness. It follows me everywhere.

The added depression at higher than usual levels for me bummed me out because it made me feel as if I wasn't appreciating or experiencing the moment as much as I wanted to be.

We've significantly lowered the dose of the clonidine that seemed to be causing the blues to worsen, and I felt my smile, goofy sense of humor, and zest for life peeking through again reminding me that there is light in the darkness.

April will bring lots of PT and other appointments to try to see if we can get things back on track. Health maintenance keeps me busy!

In addition, we return home to a busy April of hosting a meet and greet for Marc Friedenberg for Congress (please reach out if you would like to attend!), a local screening of the film Unrest, and lots of work prepping for Rowe's Research Runners. I've been trying to work on all of these projects from here at the beach, which has been a tremendous challenge give my energy levels.

We will be diving right back into things! I have to say that I am not quite sure I am ready to go home!

The pace of life here suits me quite well...SLOW! :) 

Even if this year was different or harder, we still got to be here for another year.  Mom is still health enough to do the caregiving and the travel. Every year we can both get here is a blessing. We love that we have this new tradition--which is something that was not even possible a few years ago. 

I slept a lot. We watched some good movies and TV (hit me up for recs!). We saw lots of blue skies and wildlife (osprey, egrets, alligators, turtles, sandpipers, dolphins, etc.) and the endless beauty of the ocean. We ate seafood and more seafood and more seafood. We went out to dinners, spent lots of quality time time with Cindy and Nick, enjoyed a visit from a Davidson friend and her husband, and got in a little bit of shopping at my two favorite places, Bleu and Jewelry by Wendy. We spent every day together, and I got in lots of snuggles and smiles and loves with my babies. 

I didn't write as much as I had hoped, or work as much as I had hoped, or listen to as many books as I had hoped, or read the book on writing as I had hoped I would, or knit as much as I had hoped, or Skype, call and email as many people as I had hoped, or write as much snail mail and thank you notes l as I had hoped (like none at all! :P), or feel well enough to enjoy walking (even though I made myself do it as much as possible) as I had hoped, or go to the beach as much as I had hoped, but as Jon Kabat-Zinn tells me every single day:

Let go of the tendency which we all have to want things to be different from how they are right now. And allow things to be exactly as you find them. Allow yourself to be exactly as you are.

I've been listening to Jon Kabat-Zinn's 45 minute mediation every single day for years. I have heard his voice utter these words thousands of times. 

I am amazed at how difficult it is to truly accept things exactly as they are in this moment. To not wish they were different. To be fully present. 

No wishing I wasn't sick or feeling depressed or so tired or that we didn't get to do such and such while we were here this year. Just letting it be what it is. 

This is my greatest and most enduring challenge.

This is my life as it has been given to me. And I continue to strive to live it as fully present and mindfully as possible, hitting the restart button hundreds of times throughout the day. I check and re-check my thoughts when they spiral into the sadness surrounding feeling and being sick.

In the midst of our last minute packing tonight, Mom spotted the sunset out the window. A glorious spectacle of a sunset. Just in time for our last night here in Sunset Beach, NC. 

We dropped everything, put leashes on the pups, and stood in the middle of the golf course taking in the beauty. 

Breathe in. Breathe out.

Live for these moments. And I mean, literally, LIVE, fight, stay alive for these moments. 

Thank you, Sunset Beach, for the gift of another year of your splendor. Thank you for another year that Mom, puppies and myself were all able to make the trip. Thank you for being exactly as you are meant to be in this moment. 



P.S. To those of you celebrating Passover or Easter this weekend, blessings to you.

P.P.S. I will do my best to keep up in some way--either via blogging or my Secret Facebook group (contact me if you would like to be in touch with me this way). Please understand that my energy has been more limited than usual and keeping up has been quite challenging.

Sunday, March 25, 2018

Monday Dog Blog: Until Next Year, Sunset Beach...

Hey Y'all!

Tovah here.

It's sad, but true. Our time at the beach is quickly coming to an end. 

We haven't posted in a whole month.

Here are the highlights.

We try to get our vitamin D even when it is cold outside! We like to catch some rays in the dining room.

We got groomed. We stayed clean for a millisecond. 

March sure did come in like a lion, which meant a lot fewer beach days.

So, we were quite ready to head to the beach when the weather turned around.

Mommy loves it when Gershwin puts his paws like this. 

She also loves to watch us sunning.

We make Mommy smile every day and that makes us happy.

The big news is what an explorer I have become. 

 I LOVE the warm tide pools and am not at all afraid to go wayyyy out and explore, especially if there are birds on the sandbar! I love to try to get the birds!

Gershwin doesn't like the tidepools quite as much. 

However, one day I ventured a little too far out and Mom got nervous. Since Mommy wasn't with us, Mom told Gershwin to stay by the side of the tidepool while she went to fetch me. 

Gershwin hates, hates, hates to be separated from us. While he didn't want to go into the tide pool, that still beat being apart from Mom and me.

So, he leapt through the water to get to me.

I really was fine, fully of bravery and courage, but Mom wasn't so sure!

I have to admit, Gershwin was pretty brave too.

I have a favorite spot in the house. If you can't find me, this is where I probably am--unless I am hiding under Mommy's bed!

After we go to the beach we are SO tired!

As you can see, we are both showing 'evidence' of our big adventure!

Boy, were we ever a mess to clean up.

I have no regrets, though!

As is often the case, we can be found looking out the sliding glass doors in the living room. 

But the other day, goofy Gershwin was leaning against the window?!

Mommy thinks it is hilarious when he sits like this.

The weather cooled off again, but we still headed down to the beach last week.

I wore my coat to stay warm. (I am a princess after all.)

We love the beach and will miss it here very much.

We are sure that great smells and people and excitement await us back home, though.

Until April...

Happy Monday!


Tovah Rose