Column

In 2021, I was invited to bring my thoughts and experience to a new column at Sarcoidosis News, the web's leading resource for news, information, and daily updates for sarcoidosis patients and caregivers. Naturally titled Float Like a Buttahfly, my column is an extension of what I started in my blog, to share my story so others know that they are not alone and that together, we can get through anything this sarc life throws at us.

This first piece is a bit of an introduction. After that, look forward to new writing twice a month. Through my column, I share how chronic illness has led to transformation and invite readers to float with me, “like a Buttahfly.”

With a multisystem disease like sarcoidosis, we (our doctors) often focus on one problem at a time ... but we need to be seen as a whole, too.

It's only been a few weeks, but celebrating my husband's retirement also highlights how different it is from disability.

There's a Japanese proverb that says, "Fall down seven times, get up eight." I'm WAY past seven, so can I please stop falling now?

Infusion day is a LONG day. And I have a LOT of them. So here's how I make the day pass a little easier!

For so long, I resisted the idea of marijuana to ease my symptoms. I'm glad I came around (eventually), and hope this column can open a few eyes, too.

How do you raise awareness about a disease that takes away all the energy you need to raise awareness about it? That's just what I'm trying to do in this week's Sarcoidosis News column.

I laugh when people ask if it hurts to get a tattoo. I'm used to being in pain all the time; at least with this, I get something beautiful out of it. Still, with sarcoidosis, it's not so simple.

This week, I boldly go where no column has gone before! Well, maybe not exactly, but here's my take on why Spock's logic doesn't work for us.

As we approach Rare Disease Day (and the release of Kaleidoscope Rare Disease Stories), it is vital to connect with others in the rare community. The only way we can do that is through sharing our stories!

Have you ever had a doctor put you on "maintenance" therapy? I have ... and I've got some feelings about that.

"Don't let the muggles get you down." — Ron Weasley
Grab your brooms and fly with me to the Wizarding World of ... sarcoidosis? That's right - see how this disease is like Harry Potter's world.

December 8, 2023 - Do-overs are fundamental to our experience as people and patients
Remember when we were young and could ask for a do-over when playing a game? We can still get them - even in real life!

The best gift you can give to someone with a chronic illness is to listen, believe them, and support them through their struggles. But if you need something to put into a cute gift bag, here are some great ideas!

November 3, 2023 - Lessons learned from living with a disability for a decade
What a difference a decade makes! Ten years ago, my life changed forever. What I've learned since then could probably fill a book ... but for now, we'll go with a column. 

Are you ready for the Halloween fright fest? I'll pass on that - living with sarcoidosis and other chronic illnesses is scary enough. 

As they say, into each life, a little rain must fall. But with a chronic illness like sarcoidosis, even a little can feel like more than just a little.

When I learned that an upcoming episode of the “AiArthritis Voices 360 Talk Show” would focus on the difficulty patients have in getting diagnosed, I jumped at the chance to co-host. That conversation inspired this column.

September 8, 2023 - How acute understanding of chronic pain can improve lives
Gaining a better understanding of chronic pain can improve quality of life for patients and our loved ones. This Pain Awareness Month, let's distinguish between the ways that we hurt.

I've seen SO MUCH improvement since getting this #TotalHipReplacement. It's really exciting, but what does that mean in terms of my being #disabled? Lots of thoughts & feelings to process here.

August 4, 2023 - Take me out to the ballgame, take me out with the crowd (finally)!
My team may not be doing so great this season (putting it mildly) ... but accessible seating and mobility aids allowed me to enjoy live baseball again.

If you know me, you know I don't really know how to do anything "just a little bit" ... and even when I try to slow down, I still have too much going on. I'm working on that.

Hip hop hooray!! I was so excited when a new orthopedic surgeon agreed to give me a total hip replacement ... and I am celebrating the difference every day.

"People will forget what you said, people will forget what you did, but people will never forget how you made them feel."
Attending this year's #LivingRareForum proved that point for sure. I am grateful to National Organization for Rare Disorders, Inc. (NORD) for creating such a meaningful experience, and for bringing new #RareFamily members into my life.

May 5, 2023 - From denial to celebration, I now accept and reflect on my disability
For as much as it frustrates people living with chronic illness & invisible illness, to hear "but you don't look sick" as a dismissal of our true experience, there's often a part of us that doesn't want to look sick. But even that can change over time.

April 21, 2023 - "What's in a name?" When it comes to a sarcoidosis diagnosis, a lot.
Getting an accurate diagnosis can take years (it was 8 for me). In the meantime, what we call our disease -- especially a rare disease like sarcoidosis -- can make a world of difference. Words matter.

April 7, 2023 - The power of purple during Sarcoidosis Awareness Month
Every April, we load ourselves up in purple and shout sarcoidosis for the world to hear. But it's more than just a pretty color. There really is #PowerToThePurple💜

It can take a long time to figure out what's wrong, and even longer to figure out how best to treat it. But when we have both of those answers, we should be in good shape. Unless, that is, not being in such good shape makes it even worse.

When it comes to #RareDiseases, raising awareness can be one of our biggest challenges. When we lift each other's voices, we can reach far beyond our own individual communities.
*Big thanks to Kimberly Thomas-Tague (Dazzle4Rare), Carole Scrafton (Flutters and Strutters), Judy Flanagan (United Advocacy Australia), and Stacey Haines (Rare Patient Voice) for allowing me to raise their voices here.

February 3, 2023 - A Valentine's Day Guide to Loving and Being Loved With Sarcoidosis
As we approach Valentine's Day, it's only natural to think about the love that's in the air. How we express that love may be affected by chronic illness, but it's as important as ever.

January 14, 2023 - Sarcoidosis: A Snowflake Disease With an Avalanche of Consequences
When it rains, it pours ... but when it snows, it's sarcoidosis! 
This "snowflake disease" can really have a snowball effect as symptoms, side effects, and comorbidities pile on.

January 6, 2023 - Discovering a Different Kind of Strength with Sarcoidosis
Bob Marley famously said "You never know how strong you are until being strong is the only choice you have." For many of us living with #ChronicIllness, it's a statement we've seen, heard, and felt to our core. In this week's Sarcoidosis News column, inspired by @midlifemomwife, I realized it.

A soft cast was not the souvenir I thought I'd be bringing back from my vacation ... but at least it gave me something to write about!

November 18, 2022 - A How-to Guide on Showing Support for Sarcoidosis Patients
"They mean well, but ..."
This week's column offers a new perspective and practical advice for showing the sarcoidosis warrior in your life that you care.

November 4, 2022 - Chronic Illness Makes Me Feel Like I'm Aging Prematurely
When we're young, we want to be older. When we're old, we wish to stay young. And when #ChronicIllness gets into the mix, we can feel even older than we are.

“‘How does one become a butterfly?’ she asked pensively.
“‘You must want to fly so much that you are willing to give up being a caterpillar.'”
— Trina Paulus, "Hope for the Flowers" 
That's become my tagline, my mantra, my foundation for any big move. It's both grounding and freeing, which can help us keep moving ... or moving on.

October 7, 2022 - Yom Kippur Brings Reflections on Sarcoidosis Life and Treatment
During the High Holy Days, it is customary to reflect on the past year in preparation for the year to come. Here, I'm reflecting on my sarcoidosis journey and thinking about the path that lies ahead.

Representation matters, but how we're represented means more. That seemed to be the theme of this year's Emmy Awards, and it inspired some strong feelings (spoiler alert: it was awesome!).

Sometimes a song just captures your heart in the best and most painful ways. This one definitely hits at more than just sarcoidosis warriors & caregivers.

Not only is it not the first time - what's worse is that I'm not the only one. Too many of us have to suffer when insurance overrules the decision made between doctor and patient. The past week or so was only the latest instance.

You'd never guess who visited me last week - I'm used to it being the other way around! The awesome surprise inspired this week's column.

Alanis Morissette's music has always been fun, powerful, and emotional ... and this song is such a great reflection of life with sarcoidosis (or other chronic or invisible illness). 

July 6, 2022 - Finding Comfort in the Rare Disease Community
Living with sarcoidosis or any rare disease can be isolating. Fortunately, we've got a great community to make it easier.  

You know I'm Always Coordinated with my masks and now my glasses ... but when it comes to my #mobility aids, it's more than just Sarc Style.

June 4, 2022 - How to Have a Safe Date Night With Sarcoidosis
Living with chronic illness - especially during a seemingly endless pandemic - can make it feel like we're missing out on life: we can't go anywhere, we can't see anyone, we can't do anything. But that's not necessarily true. 

To doc, or not to doc - that is the question! In this week's column, I'm focused on the irony that aside from all the medical appointments I have regularly, it's not always easy to determine whether or not to go to the doctor.

Inspired by the AiArthritis Voices 360 Talk Show during Arthritis Awareness Month, I explored the similarities and overlaps between sarcoidosis and arthritis, and all the questions still unanswered. Join us to keep the conversation going on Twitter in our special edition #SarcChat360, May 11 at 2PM ET 

We so often equate our worth with our productivity, which is not a fair assessment for anyone, but especially not for those of us with chronic illnesses. 

April 8, 2022 - Sarcoidosis Month is for More Than Just Awareness
Naturally, I'm focused a bit on Sarcoidosis Awareness Month, but really it's so much more than just sarcoidosis awareness. 

March 18, 2022 - You Say Remission, I say Remission-ish
With a laundry list of chronic illnesses and an even longer list of symptoms, remission doesn't have quite the same feeling.

It's only natural to compare ourselves with others or with our formerly healthy selves. Either can be an easy way to make ourselves feel worse ... but I've found a way to change that.

“Optimist: Someone who figures that taking a step backward after taking a step forward is not a disaster, it’s a cha-cha.” — Robert Brault
That's the inspiration for this week's column. Dance with me!

The longer this pandemic lasts, the closer it gets to hit home, making it even scarier for those of us who are high-risk/immunocompromised.

Special days can be challenging with sarcoidosis (even more so in a pandemic), and it can seem easier to just miss out. But we need — & deserve — to celebrate our way.

Far too many of us have been gaslit by doctors who said our physical illnesses were all in our heads. We know that they're real, but they affect our mental health, too.

So many of us struggle with setting boundaries (and sticking to them). In this week's columns, I share why it's so important, especially for people living with chronic illness.

Thinking about Thanksgivings of the past, and how grateful I am for the people in my life and the opportunities I've had to connect with so many, even from a safe distance.

For most of my life, cooking would have been the last thing you'd expect me to do, let alone write about. But things have changed, and it's so much more meaningful now.

This week's column is in tribute to our late, great-brother, Rodney Reese. I only hope I did him justice.

Here, I share a list of considerations and tips for traveling when sick or disabled, particularly during the ongoing pandemic.

This is something I'm sure many in the chronic illness world can relate to. I hope you all find your 19-vial doctor, too.

When diagnosed with a chronic illness like sarcoidosis, we experience a whirlwind of emotions. That includes grief for the life we've lost, and surprisingly, even relief.

For many of us with chronic illness, if we've made any kind of progress, there's always the fear that we could get worse again. It kinda lives quietly in the back of our minds, but can run out front, screaming, at any time.

F-words were at the forefront of my mind when I fractured my foot. They still are — but not the ones you might expect.

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