Wednesday, March 14, 2018

I Have the Blues

Carolina Blue Skies and Loblolly Pines

When I declared myself a writer in a recent post, I also promised transparency, authenticity and vulnerability in new ways.

That's a scary proposition.

I'm here today to say that I have the blues, even while we are here in this beautiful place filled with Carolina blue skies, where I wish the ocean waves could wash away my physical and emotional pain.

March Came in Like a Lion

Each year at the beach has been a transformative one for me. It's been one in which I found emotional, spiritual and physical healing. 

This year has felt so completely different. 

I may look back after the end of the eight weeks and decide that I did, indeed, grow and learn (I'm sure I have), but it's been a more restless, agitated process than in years past. It's been fraught with trying to learn how to live with and accept this illness so that I can find more peace and joy. 

What we had all hoped was that my time here would help to get me back on track physically after my setback in October. 

It breaks my heart to be in this gorgeous place and have many days when I am not well enough to enjoy it. I'm sad that I haven't been able to increase my walking, go on many outings, or just feel better in general. 

While we are still doing things--including making little outings and dinners out and visiting--it's much more limited and it's always a struggle with a price to pay later.

Something is 'off' that is keeping me from getting back on track physically and seeing forward motion, which for me, always triggers depression. I just want to figure out what I need to fix and do it!

Creek in Our Neighborhood

Depression is a hard topic for me to talk about, even while I openly empathize and support others I know who struggle with it too. 

It's like adding one more 'issue' to my 'issues'. 

One more item to pile into the category of 'things our society thinks we should feel shame over.'

I'm tired of feeling shame or being shamed for being a person with a disability, for having that disability be one that most people don't believe even exists, for being on Medicaid, for being a survivor of sexual assault, or for struggling with anxiety and depression as a result of chronic illness.

It's also a hard topic because for so long I was simply dismissed by doctor after doctor as being depressed and anxious rather than dealing with an actual physical genesis for my problems. I don't want to feed into the stereotypes that already exist about chronic illness (we're lazy and like to sit around and eat bon bons) and specifically chronic fatigue syndrome, which leaves so many of us disbelieved and dismissed because really, how bad can an illness with 'fatigue' in the name be?

A recent article I read noted the following about chronic fatigue syndrome:

Epidemiologists have suggested8 that the anguish of contending with the disorder and society’s general dismissal of it contribute to an up to sevenfold increase in the rate of suicide for people with ME/CFS. 

Those are some serious numbers that we need to contend with and face as a chronic illness community. I have not been able to get them out of my head since I read those words.

In Unrest, Jennifer Brea says something to the effect of: "I'm so proud of myself for not killing myself yet."

That might not have been the best way to approach suicide in an illness that is already seen as 'in our heads.'

One of my favorite books in recent years is Me Before You, whicht I felt realistically portrayed a quadriplegic man's ultimate decision to legally end his life. Our neighborhood book club all loved the book yet we each saw it through very different eyes. At the time one member yelled at me: "If you ever said you wanted to do the same thing I would be so angry with you."

I have never forgotten that moment. How I felt such empathy and compassion and understanding for the character, Will, who ended his life. How he had been given a way to end his life with dignity on his own terms. I understood his choice. Not because it was mine, but because of the suffering illness and disability can create.

And how, what we need most, is not anger at someone for seeing suicide as a choice, but compassion and prevention and, for God's sake, acknowledgement, awareness, treatments and help for people with chronic fatigue syndrome.

The Osprey are AMAZING to Watch!

Since I got sick, depression has been an on and off companion for me, and is especially exacerbated by setbacks like I am having now.

Sometimes I worry that I will always live with some degree of low-level depression as a result of living with such life-limiting chronic illness.

However, it's important to me to try to find a way to live more peacefully, contently, and acceptingly of my life as it has been given to me. I work super duper (like super duper) hard on this--through learning, medication, meditation, counseling and surrounding myself with a strong support system. I try to find joys and gratitude in every day.

I seek out little things to look forward too, even if it is a piece of chocolate or a TV show or texting with a good friend. 

I get up every day and give it my best shot. I may not be able to do anything physically other than eat, sleep, rest, and hang out, but I try.

Spring is Springing Along the Creek

What gets me stuck is how to find a way to be at peace with this body that betrays me every day. 

I am profoundly sad that I cannot engage in life in the ways I love. I spend an inordinate amount of time unhealthily thinking about how:

I wish I was healthier.
I wish I could work.
I wish I could go for long walks.
I wish I could cook.
I wish I could be independent.
I wish I could get better.
I wish I could have more hours in the day.
I wish I could do more to make the world a better place.
I wish I could read a book.
I wish I could travel.
I wish I could go on a girls weekend.
I wsh I could dance.
I wish I could take photography and art lessons.

...you get the point!

Instead of being able to accept that my days are truncated and hard as it is, I make it worse for myself with the endless lists of "I wish..."

Really, I just wish I was healthy. Over and over and over again.

I Love To Walk Along This Creek

I also can be super sensitive to medications. For example, Florinef, which is commonly used to treat dysautonomia caused me to be so depressed and anxious I did not recognize myself. It was terrifying.  I kept 'waiting it out' until I couldn't take it anymore and stopped the medication. I quickly felt like myself again. Thankfully, that was in 2001 and my episodes have never been that bad again. This side effect happens to 0.01% of patients. Ha!

Currently, we are beginning to suspect that while it is not a common side effect (1-3%), the clonidine may be contributing to this setback and more depressive episode. We had hoped this medication would help with both sleep and GI symptoms. 

I am in the process of cutting back on the dose to see if it will: 

1. improve mood
2. reduce fatigue
3. reduce dizziness that had increased as the dose went up

As my GI doc says: there are always a lot of moving pieces to my case, so it's very hard to sort out what is what.

Wildlife Galore Here

It's very hard to sort out the depression from the illness. 

What makes me the most sad day after day, week after week, year after year is how little energy I have to engage in life. And how, the sicker I am, the harder each of those actions of engagement become. 

So much of the past two decades have been about enduring and surviving, and often suffering.

Sometimes I do want to disappear. I want to evaporate. I wonder if I would like to not wake up the next day.

These feelings were the worst during the years I was completely bedridden. 

It scares me when I think maybe I just don't want to keep at this. 

What keeps me calm and grounded through these moments is that I never have been and remain still NOT actively suicidal and would not even think of making some sort of plan. I'm too afraid of dying to do that! I also stay grounded by my support system with point people I make sure to tell where I'm at emotionally. I always have professionals on board as well.

A Good Option on Days When the Beach is too Windy!

When we are at the beach I get a lot of messages about how much fun people hope I am having. I don't know what to say.

I hate being a Debbie Downer.

At the same, I believe that chronic illness and depression are interwoven, inseparable, intertwined  and important to talk about. 

I hate being depressed, but even more so when we are at the beach. Berating myself for being so isn't helping either. Hiding it from those I love or who follow my story doesn't help anyone either.

When I read the words about why patients with CFS commit suicide, I knew that part of my own voice had to be sharing my struggles with depression, my understanding and empathy for why some people do choose to end their lives, and my hope that by sharing my story I can be a voice for those who have been silenced by and because of this illness.

I have what so many people with CFS do not have--a caring team of providers, caregivers, puppies, a support system and insurance. The least I can do is use my voice and hope that it means we no longer lose so many of our fellow warriors.

I am here. 
I have the blues. 
I will find my way to peace.



Sunday, February 25, 2018

Monday Dog Blog: We ALL Made It To The Beach!

We are excited to report that we all got to hang out at the beach together this week!

Mommy is still feeling not-so-great, but she did make it out for some beach time, which we loved.

(We are wondering if there will be shirts for doggies at this year's Rowe's Research Runners?!)

Sometimes we both like to sit on her lap together. 

It's hard to get us both to smile at the same time, though. I really got my smile on in this pic.

And Tovah smiled in this one.

Really, it's all about the laps.

And we mix things up. I love Mommy's lap.

And some days we represent the Warriors and some days we represent American Players Theater (just depends which hat Mommy is wearing!).

Tovah fits just right on Mom's lap.

To make things even better we got to see Cindy and Nick this week and we love them so much. 

Tovah is really, really into snuggling with them.

Some days we didn't head to the beach, so Tovah spent a lot of time in her special look outs.

She likes to be in the know.

Sometimes she hangs out on the screened in porch, too.

There's just so much to see!

I would much rather just be in a lap. I could care less about all of the action.

And look at how handsome I am wearing glasses?

Mommy got a new shirt with a crab on the back for when she is feeling crabby. Haha! She got some kisses from Tovah Rose too.

Happy Monday!



Sunday, February 18, 2018

Monday Dog Blog: When Can Mommy Go to the Beach with Us?

Just Waiting for Mom to Get Home from Running Errands...

We are ready for a little more excitement around here!

And, for some reason when Mom goes to the beach without Mommy we just aren't into it at all. We drag along and protest being down there. 

We were really excited to hear whispers of beach going this week with ALL FOUR OF US TOGETHER! Yay!

We also heard that Cindy and Nick will be here staying at their condo for the week! We love visiting with them.

We have had some pretty nice chillax time, and taken in some good TV viewing--our favorite things being watching the Westminster Kennel Club dog show and the movie Wonder, which was all about kindness. It even stars a cute dog. For these reasons we give it a paws up!

Happy Monday!


Tovah Rose and Gershwin

Saturday, February 17, 2018

Part of Being Chronically Ill Means Needing Help

When people ask me how they can help, I'm usually pretty lost when it comes to a response. Because I don't want to need help. I'm just like many of us who find asking for or needing help difficult. The reality of living with the severity of chronic illness that I do is that I need help. Every single day. And lots of it.  

Lists abound online--on blogs and websites--that suggest how to support someone with chronic illness. I've never really found a list that captures how I feel about the type of support that has meant and continues to mean the most to me over the last two decades. In my next post on the topic of help, I'll share my own list.

Recently at a potluck with my Jewish girls group we sat around the table brainstorming what types of activities we wanted to plan. We went around the table and shared a little about ourselves (since we had several new folks join us), what we wanted from the group and ideas. 

For the first time since I have been sick I really spoke up about my limitations and how much I struggled to do the simple things that are required to participate in a potluck. I said to the group: 

"I really want to participate in potluck shabbat dinners and other activities that require bringing food. It's really important to me to bring a homemade food item that adds to the joy of the occasion. But to do this, I have to rely on my mom to make it for me to bring. How do I be a fair participant in these types of events without being able to cook or bring food in the ways that others can?"

The entire group said things like:

"So, don't bring food! You do enough for the group already!" 

"Do you see what I brought from Wegman's today?" 
"Just don't even worry about it! We don't mind if you can't bring something!"

It took me so much courage to ask for that one simple thing that would allow me to participate in events more easily without so much burden on my mom. Even when I bring a simple dish, she preps it. She goes to the farmers market or the grocery store to get the food items. 

I can't continue to ask my mom to do these things day in and day out at the level that she has for the past 20 years. Something has to give.

I feel like everyone is busy and stressed and overwhelmed, and I don't want to ask for an 'exception to the rule.' Part of this is pride, part of this is shame and part of this is a simple desire to feel and act 'normal' in social situations.

For the last twenty years, I have relied on my mom as my primary caregiver who does all of the instrumental actives of daily living--the cooking, grocery shopping, cleaning, laundry, yard work, and  everything else associated with being a homeowner. She also does a lot of emotional heavy lifting.

Recognizing that I will probably live out the rest of my life needing help, and I will not always have my mom there to provide for me is TERRIFYING. Like, heart pounding, chest tightness, dizzy scary. Like maybe I want to throw up right now.

I've been thinking about going to my 20th college reunion in June. I'm trying to figure out if the logistics of this are even possible and how I go about asking for all of the help that I need. Sometimes we get lucky and we don't have to ask at all because kind people step up to the plate. A friend offered to fly with me down and back. Another two offered to rent a house where I could have my own room, and they would make sure I had what I needed for food and transportation. Another messaged me that she is on the planning committee and if there was anything she could do to help make it possible for me to come please reach out. 

My problem is that I'm so overwhelmed and humbled by these offers that I become almost paralyzed. It feels like too much to take people up on this generosity. Sometimes I can't even respond because it's so scary. And sometimes I think about how maybe people don't realize what they are really offering to take on. I sabotage my own opportunities to receive help.

That moment at the potluck dinner with the Jewish girls was one of the first times I really stated what I needed. And that was a pretty small need.

The only person who really knows what goes into caring for me day in and day out--emotionally and physically--is my mom. And it's very scary to think of anyone else fully knowing what it means to care for me. Both of my parents (and Abbie) know the financial burdens. Only the four of us truly know the extent of those.

My friends who also have debilitating illnesses know a lot of what it's like to be this dependent and we 'get' the challenges that go with it.

My inability to be independent in the ways our society traditionally values it makes me feel inadequate, ashamed and vulnerable. Just writing this blog makes me nervous. 

Over the past 20 years I have had varying levels of functioning. At my best I still need help with all of the instrumental activities of daily living, but can still manage all of my health care, finances, relationships, etc. At my worst, I was completely bedridden needing bed baths, IVs for fluids, special elemental formula to drink because I couldn't keep food down, and could not be alone at all. 

I don't know what asking for help looks like. I don't know how to do it. I don't know how to feel that I am a full person in spite of needing help. I don't know how to ask for help from anyone besides my mom. 

What I do know is that part of being a person with a disability in the form of chronic illness like mine is needing help--physically, emotionally and financially. The next part of my journey is accepting that help, fully embracing that I am still me in spite of needing help, and learning to ask for help.

If I can let go of the unrealistic belief that needing help somehow makes me less or not enough, if I can learn to accept help with grace and a sense of peace, I think of the ways in which my life and that of my parents could be fuller, less stressful and give me the opportunity to shine more in the ways I can, rather than focusing on what I cannot do.

Somehow, it's taken me this long to realize that asking for help and learning to receive help is one of the most crucial steps I can take to living the most healthy chronically ill life.



Photos: February 17th, 2017 we went were able to see my first sunset at Sunset Beach! Since I haven't posted the pics before now and it's dreary and chilly today, I decided to use pictures from one year ago today. :)

Tuesday, February 13, 2018

A Love Letter from Renee, Emily, Tovah Rose and Gershwin

Valentine's Day Love to You from Us

We didn't send out our traditional New Year's Cards (it was just too much to manage), so instead we are doing a little year in review for Valentine's Day.

February is always a month when we need a little extra cheer.

Here's our love letter to you (and our 2017 review)...

We participated in our local women's march. What an empowering experience that spurred activism for both of us as the year continued:

Planning and executing a Healthcare and You forum for the community. 
Meetings and a town hall with our Congressman. 
Supporting 2018 candidates.  

Emily is still knitting pussy hats!

We spent seven weeks during February and March in Sunset Beach (our fourth year there), where we walked, ate fresh seafood, shopped, watched movies, hung with the pups and tried to process the state of our country and Emily's break up.

This time is always healing physically and emotionally. And the puppies love that they have us with them 24/7. :) Emily walked on the beach farther than she has been able to walk in almost two decades. 

Upon our return home, we quickly turned around to head to Hopkins for a photo shoot with Dr. Rowe  (for a feature in the Hopkins Children's Magazine) and an appointment. A walk along the harbor and dinner out was an added highlight. This solidified Emily's calling to do more to raise awareness and funding for her illnesses.

We celebrated the Jewish holidays--Passover, Rosh Hashanah and Hanukkah--surrounded by friends and devouring delicious food cooked by Renee. The rituals and foods of the holidays, as well as sharing them with those we love, bring lots of joy.

We invited different people for each holiday and enjoyed sharing the traditions with others--both Jewish and not.

For Passover, we both wore outfits from our favorite boutique in Sunset Beach. :)

The puppies increased their skill sets significantly in 2017. 

In May they passed their Canine Good Citizen tests.
In Summer, we all took an agility class together. This was hard work for all of us!
In Fall, we took a novice tricks class (they now have their Novice Trick Dog titles!)

We have two highly educated pups on our hands. They will even get in a box together!

We #eclipsed with lots of others from our town.

We participated in a new super cool program called Centred Outdoors, discovering new places of beauty in our own backyard: 

Hort Woods
 The Barrens to Bald Eagle Wildlife Corridor 
 Fisherman's Paradise

We went to our Arts Festival--one of our top favorite events--and Emily went for the first time without a wheelchair, using a seat cane instead. We relished these new opportunities and new freedoms, even though they often meant consequences afterwards for Emily! We missed being able to participate in Arts Fest for so many years.

Every year we choose a handful of performances at our local theaters. This year we saw:

 Cecile McLorin Salvant
Straight Outta Philly
Jill Biden

and the highlight of them all, Emily's birthday present, Yo-Yo Ma and Kathryn Scott. 

Again, we relished being able to sit in the 'regular seats' rather than needing to sit in special seating in the back row.

In October, we hosted the inaugural Rowe's Research Runners event at our home, while Dr. Rowe and others ran in the Baltimore Running Festival. We hoped to raise money, awareness and connect others with these illnesses. We succeeded beyond expectations, and  the 20 member team raised over $20,000 for research. 

#dysautonomia #chronicfatigue #onwardandupward

Mom and I even dyed our hair blue! #allin

We thank everyone who helped to make this event a success. We are already planning for this year's event on October 21st!

In looking back through the photos of 2017, we are reminded of the many joyful moments we had, the enjoyment of Jewish tradition, the arts, the natural beauty and food of our town, and the friends and family who joined us along the way. 

We are also reminded that 2017 was a difficult year for us in many ways. Emily relapsed significantly in October, and lost the ability to do all the things we were enjoying earlier in the year. Emily endured significant personal losses as well. We struggled with the state of our country, and did our best to remember the importance of not staying silent. 

At Hanukkah we held onto the light in the darkness. 

Every day is brighter, funnier, cuddlier and more precious because of these two sweet beings.

Tovah Rose and Gershwin are our little lights.

We send you our blessings for peace in 2018. 

Since "18" symbolizes chai/life in Hebrew, we are hoping for a beautiful year ahead.

We thank all of you for being a part of our lives--whether we are able to see you in person, whether you visited, or whether we keep in touch with technology--you certainly make our lives brighter and blessed.

Our love to you this Valentine's Day,

Renee, Emily, Tovah Rose and Gershwin