Shannon's Sunflowers

Time to Get Real

December 15, 2025

Lifestyle Changes

We’re doing it wrong. Everywhere I look all I see is lamentations about how 2025 has been so bad it makes us look fondly back on the days of a global pandemic. How was quarantine only 5 years ago? We’ve all lived several lifetimes since then.

I want you to be real with yourself right now: take a moment, take a breath, and take an inventory of your body, your mind, your spirit. How are you? I have a guess, and because I love you I’m going to be honest – it isn’t good. I believe that you are stretched too thin, stressed, underfunded, overextended, and under supported (at a minimum!). I’m concerned that your body is overwhelmed by everything you put it through both physically and emotionally. I want better for you. YOU deserve better.

I’m sure this has partially come from spending the past 9 days in the hospital and the struggles I’ve seen families endure, but I’ve also been able to listen to friends and family: what they’re living through, how they’re managing, but never, it seems, how they’re thriving. Our mentality has become just get through it. Life is too short for that. The 5 minutes of peace in the bathroom or 30 minutes soaking in a bathtub are not self-care they’re preventative care against homicide. ACTUAL self-care is not promoted or encouraged in our society so it’s even harder to take care of your needs.

Today I am challenging you to throw it all away. It’s the best thing I could ever wish for you. Throw off the American consumerism, competition with the Jones’s, and endless cycle designed to only benefit the rich.

As someone with limited time left, my perspective has changed so much. In high school I had a yellow legal pad on top of my stack of textbooks with a living To-Do list (typically 2 pages minimum) that I was constantly working on, my calendar had some activity written in every day even during the summer, my days after work never involved me going home – I was always off somewhere volunteering or planning an event. I found my identity in my work, in my productivity, in my accomplishments, but rarely did I find joy in the results of these efforts, merely the dopamine hit of crossing something off.

Becoming terminally ill while at peak workaholic + my recent trips to Europe have shown me the error of my ways. The dichotomy of the European way of life to our daily grind in the US is so stark that it barely feels real. Spoiler: Life is not a competition and you cannot WIN. All of our lives end the same way, so you might as well live for yourself while you have the chance.

In Europe people prioritize relationships, conversation, being present. They have an identity outside of work! They go to the pub or café after work and sit for hours engaged with other humans: no phones to be found! Meals are leisurely and enjoyed without watching the clock. Bad reviews aren’t left because courses took too long, the pace is savored not endured. Portions are appropriate because having extra is considered wasteful and the food is flavorful because it is REAL! It goes bad quickly because it is preservative free, food has depth because it comes from real sources not synthetically created flavors identified numbers. After my recent trip I am convinced, I can taste RED. Why? Because the Allied Chemical Corporation created a synthetic flavor called RED. I’ve said since the 90’s that BLUE is a color, not a flavor but how many blue raspberry things do you see in the world? It’s not natural. It’s not real. What is it doing to your body?

Boiling it down: remove the unnecessary from your life and the remainder is fruitful, fulfilling and wholesome. Remove unnecessary clutter and THINGS: you don’t need a walk-in closet of clothes, you only have one body. You don’t need the new smartphone when it comes out, especially if yours still functions and you aren’t taking your work with you. Create those boundaries to preserve your peace. Remove the fake from your life and your genuine self will thrive. Fake foods, false friends, clothes and appliances made to break and propagate a constant state of consumerism – imagine the weight you’ll lose, money you’ll save, and quality relationships you will foster!

When you dial into the things that matter: family game nights or Friday pizza/movie night create more core memories and a sense of belonging than will never be achieved with the newest, trendy toys. Trips to national parks or Mayan ruins add invaluable perspective in the classroom when learning about key world events.

Not sure where to start? Look at your dog. He finds joy in the simple things, prioritizes quality time, loves affection, and you probably feed him better food than you feed yourself. His life is EPIC with one leash, one collar, a willingness to make genuine friends and an adventurous spirit.

I know this message hits different in the middle of the biggest consumer marathon of the year, but what if it didn’t have to be? Take the money from lots of little gifts and buy the family an experience: trampoline park, indoor skydiving, weekend road trip. Those memories will last longer than the batteries on the Christmas morning toys.

It’s time to prioritize yourself and your peace. Later may never come, don’t count on time that no one is guaranteed. It has to be now.

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Understanding Time in the Final Chapter

September 24, 2025

Lifestyle Changes

I can tell that I am dying. Not just in the way that my body continues to ail me and fail me, but in the way I perceive time. Life continues to show me ways that I am in my final chapter.

My 7th grade Ancient History teacher had a sign over the standard issue government clock at the front of our room, written on construction paper and permanent marker that said, “Time is Relative.” I remember so many things about that room, clear as day: the color of the construction paper, the handwritten font, and remember the boy I had a crush on who sat in front of me.

Isn’t it said that when you are young, your perception of time is that everything takes so LONG because relative to your whole life, that three-hour drive to your vacation destination feels like it takes a lifetime? And now, I took a 2 1/2 hour train ride to Wrexham from London that felt like it was 20 minutes. It was barely worth cracking a book open. Once upon a time I thought that older folks are just more patient and therefore not troubled by the length of the journey, but in my current experience I can tell you that for me, time is speeding by. It doesn’t matter if I am sitting still alone on my couch, waiting at the DMV or reading a book, what feels like 10 minutes is actually 90. Several times a day I am astounded by the time because it ticks by faster than I can comprehend anymore. It’s very disorienting but it also makes me feel like I’m racing towards death in the downward slide of the bell curve.

I’ve never comprehended the idea of Zen or Namaste. I’ve studied it and listened as people spoke about it, but a true understanding I was never able to achieve. My life was lived at a breakneck pace and my “importance” evidenced by my full calendar, cell phone exploding with messages, and my long-winded title. I do not operate at those speeds anymore. In fact, I am not physically capable of achieving those things. Gone are the days of multitasking, networking overload or all-nighters running payroll or editing a website. Now my mind struggles to focus on one thought to completion, and my ideas are often lost if I do not write them down immediately. But time? That keeps racing by.

Now, as I roll my wheelchair through life I viscerally feel like I’m breaking waves of consciousness. I realize how corny that sounds, and maybe we can blame the lack of oxygen reaching my brain for some of my abstract thoughts (heaven knows, I sometimes do!) but I have found a peace that I did not know was possible. The anxiety, angst and frustration that used to exude from my pores is a distant memory. I find an inner tranquility as I confront obstacles, inconveniences or bureaucracy that makes me feel dialed in to the energy of the larger universe. Only during these moments does time finally slow down and I believe that is so my soul can bask in the stillness.

Don’t get me wrong, I have plenty to worry about! I have files on my computer with letters to poignant people and institutions from my life, plans for my Wake, lists of achievements or experiences I hope to accomplish before I die… I can worry about my Disability being approved, finding places to live in temperatures that don’t cause physical pain, and the isolation I feel when I’m rendered helpless by coughing attacks. As a lassie that was once known for my improvisation and quick wit, being unable to eek out even a word or two is immensely humbling. Even enjoying a football match at The Turf in Wrexham, an aspiration of mine since I saw the first season of Welcome to Wrexham, I was humbled to find I cannot raise my voice enough to be heard in a bustling pub anymore – once one of my favorite locales.

When I am with my friends and I see their stress, hear their uncomfortable phone calls or witness something go wrong I try to help center them. Show them that in the grander scheme how it is not worth putting your body through the physical anguish endured during this barrage of negativity. I do not yet know if I have a calming effect, but if I can continue to get this message out, hopefully it will help someone.

Our world is smaller than it has ever been. We are plugged in, interconnected, overstimulated and overly (mis)informed. If we get distracted by the cacophony, our lives will pass before we have a chance to be present and enjoy. Again, I am lucky. Unlike those whose lives end abruptly through accident and tragedy, I am given the priceless opportunity to savor my final chapter. Time may be flying but I am aware, present and absorbing every sight, smell, conversation and detail. It’s true what they say that life comes full circle. Those simple things from our youth once again bring childlike wonder and fascination. These are the moments you remember. Not the emails, phone calls, endless meetings or spreadsheets, but the color on an Oriole’s wings, the whiff of baking cinnamon rolls, sound of a crashing wave…

I may be dying, but I finally feel like I understand: Life, love, the grander scheme and the smallest details. I cannot slow it down but I can capture it in my soul where peace prevails.

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The Benefits of YES

August 10, 2025

travel

I have a very vivid memory of January 1, 2009 standing in my cousin’s kitchen when my great Aunt said to me, “Who goes to Hawaii for 4 days?” She was incredulous that I would expend the effort to fly that far for such a short period of time. But my answer, which has fueled many decisions in my life is, “why wouldn’t I?”

You see, I was flying with my bestie Eileen who was a flight attendant. She was attempting to hit all 50 states and knowing how much I hated winter, invited me to be her companion on a Hawaii trip. Since her schedule was so unpredictable, getting 4 whole days off meant the stars aligned and we were going to HAWAII with about 8 days’ notice. I was bursting with anticipation and nervousness, as a planner flying standby is nerve-wracking, but as a frugal filly I couldn’t turn down FREE Airfare to Honolulu! I had always loved to travel and jumped at any chance that was offered, but only recently started taking trips that were bolder than a bus trip to Cincinnati.

Candidly, I remember more from those four whirlwind days than I do from some whole vacations that occurred more recently. We had hoped to snag some first-class seats, but as it was Hawaii in January it was quite full, so we flew in middle seats from Chicago to Honolulu. I wouldn’t trade it for anything.

You see, Eileen looooooves turtles! She has two plush turtles named Ren and Kohl that have been with her on so many adventures since we met in 2005. Hawaii has sea turtles, so we were going to do anything in our power to find some in the wild. I bought us GoOahu cards with tons of included activities, and we made the most of every minute.

As a history lover, I got to see and understand Pearl Harbor in a way that reading about it never could. I had chills during the entire boat trip out to the Memorial. When I look at the pictures, I still get goosebumps remembering how being in the presence of such powerful history made me feel.

We went snorkeling early one morning in a secluded cove and spotted a Sea Turtle in the wild. Actually, Eileen saw it and SCREAMED in joy through her snorkel and I quickly swam over to see it in person. We took an afternoon cruise along the coast and despite the overly abundant seasick passengers, we spotted more turtles swimming at the surface. It was meant to be.

We went to a Luau where we met Kai our tour guide and ate the most delicious pineapple I’ve ever tasted. We learned the hula and ate poi. Eileen, who is a lifelong vegetarian, even tried some of the pork that roasted in the ground. We went surfing which I HATED. I fell off my board into a coral reef that tore off my bikini bottoms and left me bleeding, stranded half naked in the ocean. I ended up hiding behind my board trying to run to shore where they gifted me a pair of commemorative Hawaii shorts to cover my white tushy. But I can honestly say that I’ve tried surfing! And in Hawaii no less.

On the way home, we were stranded in the airport for 9 hours, as every plane to the mainland was full to a person. But the airport was open air and I had a book; there are many worse places to be stranded. And despite getting a redeye from San Francisco back to DC and then having to drive straight to work in Philadelphia, I wouldn’t change it for anything.

I’ve spent my life with one guiding principle when I am unsure of a decision, “will I regret it if I don’t?” I always knew that I am far more likely to regret what I did NOT do, than the things I have. Sitting here even today, if you ask me my regrets the only one that comes quickly to mind is that I did not study abroad in college. The reasons seemed complicated at the time, but in hindsight I should have made it a priority because I believe it would have accelerated my transformation into my true self. It would have given me insights into a bigger world and a more understanding moral compass that took me decades to develop otherwise.

Life truly is a compilation of moments. Sometimes it’s the simple moments and others it’s the scary ones where you get uncomfortable and jump in with both feet, embracing the unknown! It’s cliche because it’s true: you don’t grow if you aren’t uncomfortable. You can’t learn until you look beyond your nose at the people and the world around you. It is possible to think big picture while embracing the small joys. Say YES to that next adventure: the concert, road trip, new food or new friend. Even if you don’t love it, you’ll have tried it and you’ll have more information and a better perspective for the next decision that’s coming your way.

Do yourself a favor and say, “yes!”.

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Size Matters

July 26, 2025

Uncategorized

I grew up in a place (Central PA) at a time (80’s and 90’s) where size was important. I spent most of my life worried about my weight, beginning in elementary school as I remember walking the hallways of Stiegel Elementary and hearing the <swish, swish> of the corduroy pants I was wearing when my thighs rubbed together. I remember vividly how jealous I was of anyone in jeans! Oh, denim the miraculous fabric that didn’t announce my arrival or hold onto every speck of lint it found.

I officially got my first pair of jeans from a friend’s mom in the 5th grade. They were stone washed AND had the zippers at the ankles to truly make them “pegged.” I remember what a gift it was to get them from a friend and the Art Teacher, Mrs. Pelsis from Latvia gave me a Penn State sweatshirt for some spirit day at school. Jeans and a sweatshirt? I felt like the coolest kid going in 1991.

By the time I hit puberty, I was so concerned about my physical appearance that my best friend, Chris Wingle and I would spend 4 days a week after school in my living room doing fitness VHS tapes. We alternated Sweating to the Oldies and an ab work video that was hilariously 80’s but intense enough that when we led an ab class in gym the teacher told us it was too much and we had to tame it down. Ya’ll we were doing side crunches, it wasn’t parkour.

I remember saving my lunch money and eating the soup special for 85 cents/day for lunch at school. And it made me feel so special that the costumer would rave how I fit into the storied antique pieces. My mother recently saw a picture of me from those days and said I looked like a waif.

In college, I ate 2 servings of ice cream a day and gained my freshman 15 and felt like the fattest girl in history but honestly, I was healthy. In my 20s I underwent quite the personal development but I definitely spent MONTHS focused on the scales every morning. My first husband and I would weigh in every day and track it on the daily calendar. Looking back, I’m mortified.

I was obsessed with Isagenix in 2009 and became a professional actor in 2010-11. I desperately wanted to be a distance runner, but my orthopedist squashed that after 3 ACL surgeries he told me to temper my expectations on my body.

I look back now on how amazing, strong and adaptable my body was during this time. I am disappointed in myself for still wanting improvement at a time when I was both strong and healthy. But I have those memories, those pictures and those accomplishments.

I am now 43 years old and have had 4 ACL surgeries (3 right, 1 left). I’ve done the math and I gained 20 lbs in the hospital and 50lbs since I left the hospital. It pains me to admit my current weight and my lack of mobility makes it super hard to even fathom a calorie reducing/strength building situation moving forward. I am fatter and heavier than I ever thought I would be.

But in my head- I’m not. It’s legitimately not my fault that my body stopped acquiescing and I can’t move more. My oxygen needs don’t allow it. Yes, I’m sad that I’ve slowed down, but outward physically I do not mind. I use Faecbook flashback to see WHO and WHAT I’ve been and I know it’s real. I’m proud of what I have done. The fact that my body is now much rounder and more sedentary doesn’t phase me. My mind thinks I can still do things that I 100% am not physically capable of, but that’s growth for another day. When I walk into the pool scooting at 0.8mph with my oxygen tank in my Mumu bathing suit- in my head, I’m wearing my 2 piece in a golden tan.

I forget sometimes how big I’ve gotten and I still try to be the playful, flirtatious person I’ve always been. Spoiler- it doesn’t work as well when you’re 100lbs overweight, but it doesn’t matter. I’ve finally gotten to the confidence place in my life where it doesn’t matter. In my head, when I put on an outfit or a bathing suit, the size is not a XXL. In my mind, I am my best self. Inside and out. That might seem silly, but I have no shame and no self consciousness. I am me, I know what the best me is, and if my physical body is no longer able to keep up, that’s ok. I’m going to keep moving forward with the confidence of who I WAS, who I know I am INSIDE and I’m going to ride that confidence.

I’m sorry that when I was 15 I was starving myself as a shy kid who didn’t believe in herself, but her 43 year old self is 100lbs heavier and in the headspace and confidence that I am my best self.

I didn’t take advantage of the benefits of my “culturally amazing body” when it was relevant, but the truth remains even if my body doesn’t. Guess what, friends? I’m dying. I’m no longer worried about my outer appearance. I care about making myself happy in the time I have left, no matter how many chubby rolls are involved.

Finger lickin’ good, friends.

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The View From Both Sides

June 23, 2025

Lifestyle Changes

Two things can be true at the same time. In our current society of combativeness and confrontation, the whataboutisms run rampant, but don’t let that distract you from the facts. I’ve come to embrace this and find comfort in it when I think about it practically. See, it all stems from self-imposed guilt of thinking, “oh, but I didn’t think that before” or “but I used to feel differently.”

Simple Example: when I am driving in my South Jersey coastal community, my eyes are out the window scanning the horizon constantly with a smile on my face just taking in the beauty of the ocean, the humid haze, the wildlife in the bay. From a young age, I have loved the ocean and I’ve seen most of them (I’m skipping the Arctic!). Then I’ll start to feel guilty because I am proudly a PA Dutch Girl from Lancaster County, and farm girl was my label of choice for most of my life. Truly, the farms and fields filled with rows of nature’s bounty are mesmerizing to me, and the lush green fills me with such pride for my roots.

The View from my Front Porch, Parkesburg, PA

But two things can be true at the same time. I can love where I live now and be glad that I grew up where I did. I can feel happy about BOTH of those things. I am not betraying the country because now I live at the beach.

Sea Isle City, NJ View from the Promenade

Another example that’s been ringing in my head/heart lately is my relationship to faire. The Renaissance Faire community has been a FAMILY for me since I was 16, and the lifelong friendships I’ve made are my most prized possessions. But it isn’t the same for me anymore. The things that I loved about it: vocal projection, dialect, history & culture, period appropriateness, improv and adapting that was eked out under the least favorable of circumstances but made brilliant, gritty ART was my inspiration. The improv-ed banter, thoughtful songs and parodies and unexpected collaborations was my lifeblood when I was a young girl looking for her place in the world. It isn’t that for me anymore, as the overall focus has shifted. Do you know what it IS? It IS a safe place that is still welcoming to all. The faire is a beautiful place that welcomes you regardless of your costume, gender identity or unusual hobbies because we are inclusive and accepting in a world that is constantly finding new ways to discriminate against anyone who is different.

Again: both of those things can be true at the same time. The faire was a pillar of my formative years and its reach continues long after I stopped performing that I do not enjoy the same way anymore. AND I can love it for what this place I love continues to provide to this next generation who needs their own safe space to evolve.

The country right now in 2025 is at a Tipping Point and unfortunately, I do not know which way it’s going to tip. What I do know is that “I’m right and therefore you must be wrong,” does not apply in every situation. We can BOTH be right. Black Lives Matter suddenly becomes All Lives Matter. No one is arguing that all lives matter, but it detracts from the purpose of the BLM Movement to get stuck in the semantics. It does not have to be one or the other.

I am far beyond the “let’s not talk about politics or religion so we can all just get along,” phase of my existence. I’m going to tell you about my thoughts on Inclusivity, Women’s Issues, opinions on dying and more that will surely be controversial. I have a lot of BIG thoughts since getting sick and I’ve wanted to write them down so many times, but I’m always worried about how people will perceive me. Guess what? After 10 months of staring down my mortality – I am officially over that fear.

I guess I am hoping that if we start with two things can be true at the same time that is neutral enough of a statement that it won’t cause any tempers to flair. Worry not, there’s more coming.

Today I am asking you to open your mind and your heart. Consider embracing complexity, holding space for multiple truths, honoring your past while living in your present, and shedding fear in order to speak boldly. All I have ever wanted to do is change the world, and I’m asking you to start by changing your perspective.

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Birthday Reflections

May 1, 2025

Accessibility Challenges, Lifestyle Changes, travel

Growing up, we never celebrated birthdays much. My mom always said that everyone has one, and you didn’t do anything on your birthday worth celebrating, you just showed up. It was your Mama doing the work. As I got older, the timing of my birthday was challenging for dining out or getting away, as it’s Mother’s Day weekend and every 3 years or so, my birthday falls on the holiday proper. Mother’s Day is the #1 busiest day for restaurants- so I don’t go out for my birthday.

But… what is one thing I always say in my videos and posts?? Celebrate everything! It’s never too late to change, and I make the conscious decision daily to find joy in all of life’s experiences. This year, I’m so excited to be celebrated! Some of my friends took my Bucket List to heart and planned me a Downton Abbey themed dinner party for my birthday, complete with costumes, delicious tea and parlor games. I am so excited to be the excuse for some of my favorite people to all come together and enjoy each other’s company!

On the Bucket List train, I decided to identify some of my more attainable objectives and double down on getting them knocked out! This year for my birthday, I’m having a fundraiser to help support these goals. If you have $5 or $10 to contribute towards a limo ride or a bottle of Dom Perignon, I promise to document all adventures as I conquer them! Similarly, if you have any suggestions for unique, “once in a lifetime” type experiences, please share! That’s how I ended up on a Mardi Gras float next year, and I could not be more excited to spread smiles to the enthusiastic celebrators in New Orleans.

If “42” is the meaning of life, then I find it fitting that it was in my 42nd year that I found the peace and fulfillment that I always sought. Unfortunately, that came after a diagnosis of terminal lung disease. I started seeing a therapist in the 8th grade, I continue to see one even now, and the #1 thing they tried to drill into my stubborn Taurus bull brain is, “my value as a human is not related to my productivity.” Never, as I was running several businesses and managing the mental load of both life and logistics, did I think I would find myself finally happy when all of that was removed from my life.

I have been given the BEST gift! I was given my life back with a warning to “use it or lose it” and I’m doing my best to squeeze every last bit of adventure and adulation out of the days I am strong enough to embrace. Unfortunately, with those physical limitations I have lost my ability to work and I’m still in Disability appeal purgatory, so I’m trying to live life while I am able, but I need to fund these Bucket List items. I’ve made peace with certain things, like Raft the Gauley, that I know I will never be able to do, but there are some like see Australia/New Zealand or jump out of an airplane, that I want to stubbornly find a way to achieve.

Yes, it’s May and though I will be celebrating my birthday on the 10th, I aim to have this be the year of my bucket list where I will say YES to things that will move me closer to these once in a lifetime goals. The time has passed for “someday.” Some day is TODAY and if I’m going to get it done while I am strong enough to appreciate it, today means now. In the wise words of Andy Dufresne, “get busy living, or get busy dying.”

I’ve always called myself a professional enabler. I’ve decided that what I can do to pass joy on to the world is to continue to enable you- but in some unexpected ways. It is my hope that I enable you to: remove unnecessary stressors from your life, downsize your material possessions, focus on relationships and experiences, and say YES to the things that scare you. To me, that would be a remarkable legacy that touches people’s lives every day.

If you want to support my Bucket List dreams, GoFundMe or Venmo @Shannon-Jones-4001.

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The One with the Abundance of Travel Metaphors

April 15, 2025

travel

Let’s see if I remember correctly some of those philosophy lessons from college: All vacations are travel but not all travel is a vacation. Yes, in this contrary culture I’m sure the first thing someone will say is, “but my family LOVES a good STAY-cation.” If that’s your first thought, then you are why we can’t have nice things, and maybe you should read my previous blog on changing your mindset.

Western culture, and Americans specifically, seem to think that all travel is a vacation and therefore must be earned. Just like the act of taking 5 minutes to have a cup of coffee in peaceful solitude when your day is hectic and full of demands on your time is somehow seen as “self care,” I offer that this is not a realistic mindset. Firstly, time away from work does not have to be “earned” though our society would have you believe otherwise. I sincerely hope that you love your job, but you deserve happiness and fulfillment in your everyday life, regardless of what you do for a living. This is me giving you permission right here, right now.

TRAVEL should be a respected requirement in school as much as math, language and geography. Travel teaches self-reliance, self-awareness, cooperation, and adaptation while testing patience, tempers and level-headedness in the face of adversity. Travel is an amazing tool that I believe leads to the best understanding of the world we live in, as much as a trip to the bay teaches about oceanography or seeing a live play immerses you in classic literature.

My sophomore year of high school, I had an Emerging Nations teacher that I loathed. I have been a strident student of history since the 4th grade and even picked Gettysburg College because I was certain that history was my future (please stifle your laughter). Emerging Nations was our history/civics requirement that year, and the teacher did everything in his power to avoid teaching. We watched VHS movies and ran simulations- it was torture for the way I learned, but there is ONE THING this teacher said that has stuck with me. “You should go on your honeymoon before you get married, not after.” His point was that how someone adapts and reacts while traveling gives you genuine insights to their personality that otherwise might take years to reveal themselves. I don’t say this about much from that class, but in this analogy, I 100% agree!

Americans are not used to being denied. When something goes awry, we demand to see your manager, but in certain situations, these social constructs are irrelevant. International travel is an excellent example. Travel teaches a required appreciation for the rules through customs and border regulations, respect for authority in these interactions, and cultural awareness as each country’s entry requirements and allowances are different. Travel teaches math through currency conversion, communication as travelers may have navigate airports and city streets in a non-native language, and an adjustable valuation of assets based on situations. Never mind the constant conversion from metric, since all but two other countries in the world use it (did you expect to be in the same company as Liberia and Myanmar?).

My challenge to America- celebrate a PASSPORT. Instead of the driver’s license, which is an accomplishment in its own right, find a way to promote international travel. That passport is the KEY to a world that my 80’s self only read about in the Encyclopedia Brittanica or a Choose Your Own Adventure Novel.

Just like your online presence is a Greatest Hits of your life, don’t think that these pictures show only travel joys. By all means- my car was broken into in Santa Fe, rode in a Dominican ambulance the next day with my travel companion, missed four flights and spent 15 hours in the Honolulu airport and ordered a stomach-churning raw pork dish in Germany that I couldn’t choke down because I didn’t speak the language. Literally missed the boat in Isla Mujeres, was stranded in a snowstorm in Brussels, and stopped 6 times for my friend to vomit on the side of the road in Mexico due to E.coli. Even a bad day of travel makes a great story.

You cannot afford to not travel. If you are seeing the world, instead of indulging in a vacation, you’re spending more time learning about local foods and customs than having hot stone massages. What you don’t see of course, is that I still remember that $9 thrift store peacoat and I can feel its ripped lining. I saw a sea turtle while snorkeling in Hawaii but I wasn’t allowed on the back of the boat because everyone was vomiting. I’m typing all of this and SMILING. Look at my life!? How blessed am I? I wouldn’t have these ridiculous experiences if I weren’t so set on getting out of my comfort zone.

In Shannon’s optimistic, ideal world, students would be given an allotment of excused absences for the purposes of travel and cultural enrichment. Let’s be honest, as humans we’re the most resilient and open to change in our younger years so why should we wait until retirement to see the world? Wouldn’t my everyday benefit from knowing how they cool their homes in Portugal or roll pasta in Italy? Tasting food without preservatives or seeing public transit systems that are connected, safe and affordable might just help me in my daily life. It will also help me realize that there are better ways to do things if we’re open minded.

I’ll climb off my soapbox now, but the Bottom Line is: travel is essential. Please do not discount it as a luxury. I hope that you continue to promote it amongst our youth and actively work to normalize it.

Thank you for taking the time to learn more about this chapter of my life as I share some insights. Please follow me on Facebook and YouTube for daily video Shenanigans.

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My New Label: Pulmonary Fibrosis

March 25, 2025

Doctor Visits, Lifestyle Changes

I believe that my decline started in February. It was so bitter cold, it hurt to leave the house and I had nothing to do except appeal social security and go to doctor appointments. My pulmonologist referred me to Pulmonary Rehab, but there were no slots available in the classes, so I waited. And my muscles weren’t getting used and my lungs weren’t being challenged. So that set me back compared to how strong and capable I felt when we got home from Mama’s birthday trip where I was using my walker every day, eating clean food, breathing clean air.

Then rehab started and we set goals to lose weight and try to get off oxygen when I am sitting still (watching tv, sunbathing). I started to see how weak my body had gotten when 4 minutes on a recumbent bike was beyond uncomfortable, my breathing was so labored and painful. After a few weeks, I saw myself get noticeably stronger – able to spend 10 minutes on a treadmill, bike, NuStep and arm crank. What I wasn’t prepared for was the volume of oxygen needed to maintain these exercises. Suddenly, even though I’m at 3L(liters) when washing dishes in my home, I need 8L or 10L while walking 2 mph on the treadmill. For those of you unfamiliar with the process, everything in Cardiopulmonary Rehab is monitored. I wear a Pulse Oximeter like a watch and they check my heart rate, oxygen and blood pressure both at the beginning/end and WHILE I’m exercising. If my oxygen numbers are lower than 88, then they increase my oxygen flow until I am back at a safe level.

Then came Spring with pollen like which I have never experienced. Now, I am very lucky in that my allergies are extremely mild and seem to mostly be around hay, so that was only an inconvenience. The amount of pollen in the air however led to a buildup of pollen in my lungs. Around this time my nurses began to hear things in my lungs before exercise: crackles, wheezing, fluid, “the sound of the ocean,” one said. Since those noises directly correlate to my discomfort, I began to have further trouble breathing during exercise and began to cough frequently with a noticeably uptick in my mucous.

After two weeks of this, the Pulmonary Rehab team advised that I ask my doctor for recommendations of treatment, be it a course of prednisone or a medical device to help with mucous. Thankfully, a friend gave me a nebulizer earlier this year, and the rehab folks recommended I try it. What an amazing tool for clearing my lungs! And with minimal discomfort. I was also gifted a very intricate shaker vest that is supposed to shake loose the phlegm but after a half dozen uses, I decided that it was quite abrupt and took up 1/3 of my living room, so I would stick to the nebulizer.

Dr. Lotano, my Pulmonologist sent me for a Chest CT, and I received the results within hours. My lung scarring had progressed to Pulmonary Fibrosis, most significantly in the bases of both lungs, with additional scarring on the upper quadrant of my left lung. Upper right is still going strong, BABY! I was also diagnosed with Bronchiectasis which is basically a never-ending cycle of: scarred lungs make mucous, I try to expel mucous, and whatever is left to irritate the lining will cause more scarring. It’s got a lot in common with The Song That Never Ends.

For the GOOD news: the new diagnosis means that I qualify for another 36 sessions of Pulmonary Rehab. I have already gone through the process and insurance has approved it. So that is a win for both my mental and physical health. The other “potentially” good news (I say it tentatively because I don’t trust the government) is that Pulmonary Fibrosis should qualify me for SSDI as it’s classified as a Compassionate Allowance and will hopefully fast track my appeal. I’m “working” with my local representatives’ office but so far they just made me feel like a nuisance who can’t navigate the system.

The REALITY CHECK is that between the Scleroderma (my autoimmune disease) and Bronchiectasis, my mornings will continue to be a fight with coughing, phlegm and mucous til I make myself sick. I will not be getting off oxygen for the rest of my life. The scarring will continue, and based on how far I progressed from Interstitial Lung Disease to full on Pulmonary Fibrosis, the estimates of 2-4 years is tracking closely with my progress. My oxygen needs will continue to increase and my strength will decrease. I will become dependent entirely on a wheelchair or power chair.

As far as, “how did I even get here?” a few things we DO know: this came on because of a combination of COVID (I had in 12/20 and 12/21 thanks to catering holiday parties) and Scleroderma. I have had symptoms of my autoimmune disease since 2008. COVID being a respiratory illness exacerbated the inflammation in my lungs which began to snowball after I caught a simple cold last August. I will repeat this: this is a combination of environmental and hereditary factors. I did not “make myself sick” unless you count working too much and not taking time to listen to my body. Of that, I am guilty. And that’s mine to make peace with.

The 2-4years can depend on a lot, but one thing for certain- I can’t get sick. You see how a simple cold led to a 3-week hospital stay; another and I could lose much of my remaining lung function. Staying active, being in fresh air, keeping my spirits up- it all plays into healing and strength. Anxiety, depression and isolation are realities that pulmonary patients the world over struggle with. We worry if we can breathe as a constant thought- which makes sense that it would lead to anxiety. We’re isolated because people are uncomfortable around us and all of our equipment, are afraid to get us sick so stay away, or can’t go out because we’re too worn down all of which leads to depression.

I’m going to tackle this thing the way I have achieved most everything in my life: Head On. Based on how I’ve been feeling, what the nurses have been hearing, and what the scans have shown, I feel like I’ve got one more good year in me. Remember, I haven’t yet made it a year since my hospital stay. I love summer more than anything, so I’m going to really push and hope to get two good Go Out With a Bang summers. I’m going to attack my Bucket List and say Yes, And…. to every opportunity that presents itself.

I have so very much more that I want to share with you. My thoughts have been full lately. Expect to see more frequent posts for awhile until I get all of my ideas out. Expect also that I will be changing my tone a bit, as I continue my quest towards being true to myself and not worrying about how other people perceive me. I am aware that may disappoint or even drive away some of you, but ultimately I’m choosing to share my story my way, and I hope that you are ready for the ride.

If you want to help fund my Bucket List dreams, or even just my co-pay for 36 more rehab visits, I’d appreciate your donation more than you know. https://gofund.me/1f9360ab My financial straits are dire, but for such complicated reasons that it will be a post all of its own.

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From Center Stage to Centering Others: A New Kind of Spotlight

March 13, 2025

Lifestyle Changes

I have heard it said that for all things there is a season. I feel like that is not a concept that is easy to understand as a young person, but in this chapter as I am able to look back, it all seems crystal clear.

There was a time when I would say that certain things were inextricably central to my identity: performing, renaissance faires, singing, entertaining, cooking, working diligently and dutifully long hours in my business hands on. Just typing that filled my soul with feelings of warmth, acceptance and belonging. And yet? Those seasons have passed. The raw truth is that those seasons were ripped from me; those tenants vital to my core being are no longer part of my reality. That is a big, sour pill to swallow.

I think that Taylor Swift made it all more relatable when she defined her life in ERAS. That is somehow far more palatable, and sometimes certain parts of an era make a comeback, so there’s hope for a resurgence of our favorite parts of our history. Looking back now, it is so clear to see each chapter of my life. It doesn’t feel like something is lost, but rather a part of my story. And thanks to technology I am often able to relive some of my greatest memories of these past chapters.

Don’t get me wrong – it is HARD knowing these things that literally defined my existence, I will never do again. But I am still writing the story of my life- there are more chapters to come. Unfortunately, none of us know exactly how many chapters we’ve been allocated, so we must live every chapter fully realizing there is no guarantee that there is writing on the page when we turn it.

Since time is our most valuable commodity, you can tell what’s important in your life right now by what you spend time on. In this phase of my life that is: people, travel and experiences. I have never been one for material things, preferring to taste my memories and share stories of my adventures – both good and bad.

PEOPLE are my lifeblood. Despite becoming more content with a slower pace of life as I age, ultimately, I am still an insatiable extrovert. In this season, that looks quite different than the 6 course, hours long dinner parties I used to throw for my friends – relishing in the camaraderie and conversation. Now it’s gathering with my high school and college friends, performing and work friends, or just those people so ingrained in your history that you cannot remember how your lives intersect. Our gatherings are calmer now, maybe not quieter but slightly less envelope pushing, and still full of life and love.

I find it fascinating that when I look up season in the thesaurus, one of the related suggestions is TWINKLE. Those in my Renaissance Faire community know that the late Doug Kondziolka’s immortal advice to performers the world over was, Twinkle Damnit! I thought my days of twinkling were over when my days of performing ended, but it turns out that my light is twinkling in new ways. Ways that fill my cup and continue to show that my life has an impact on others. That’s all I’ve ever wanted – to change the world. As I’ve aged I realized the best way to do that is one person at a time, which in this current season is the speed at which I operate.

The easiest way to engage with people is to appreciate them! Their struggles, their realities, their victories. I am finding great joy in celebrating other people! I am lucky to have the time now to write letters the old-fashioned way, to share victories and struggles that burden people, and to offer a sympathetic ear in a world that is so raw with emotion that many of us are struggling to find optimism.

I made a video last week offering to write letters to anyone who would like a piece of mail that isn’t junk or a bill. I’ve been greeted by requests from 9 states, some of whom I do not even know! The offer still stands. I’m not asking you to be a pen pal. If you’re life’s too busy and you can’t or don’t want to write back- that’s fine! I just want to send you a smile and maybe a brief moment of peace. You deserve it.

Feel free to send me your address on my Contact page or donate to fund postage on my ongoing GoFundMe. Sending you love and light in this crazy world.

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Confronting Anxiety

March 9, 2025

Lifestyle Changes

I am absolutely surprised and overwhelmed by how many people compliment my optimism and willingness to fight. They call me an inspiration, which is the highest compliment I could receive, though I don’t always understand what others see. One recurring question I’ve been receiving a lot recently, is how do I deal with my anxiety? I believe that America as a country is experiencing some significant anxiety at present, so you are not alone. I’ve been very open about my struggles which are ongoing, but I am happy to share my experiences and personal insights.

The truth is, I have plenty of times when I am feeling overwhelmed or just very down/sad. I try to take an inventory of my feelings to see if I can identify WHY I am feeling a certain way. Is there an immediate thing needing addressed that’s causing me stress or anxiety? If I can identify it- can I tackle it? If I feel overwhelmed and tackling it feels like too much- what CAN I do? Or can I give myself a deadline? Ok, I don’t want to call the insurance company but I can’t get anything done to address my muscle pain until I get approval. So I have to want pain relief more than I DON’T want to make the call. Eventually the scales will tip and I try to be prepared when that time comes. Sometimes it means writing down the call/appointment/follow up info I need in several places so that when I find an innocuous time or a sudden bout of confidence, I have the information I need wherever I may be.

I also try to immerse myself in something I completely enjoy as a distraction because it gives my body a respite from fight or flight feelings. A show (Downton Abbey, The Good Place) that’s a guilty pleasure because my ex didn’t like it. Painting something. Reading a good book. Cooking a favorite. Looking up plans for a small herb garden… An hour of one of these activities is usually enough to noticeably lessen the anxious dread that sits in my stomach. If the anxiety is sitting in my heart, then a good cry typically helps better. It doesn’t have to be a sad cry… I can usually bring it on by watching videos of soldiers being reunited with their dogs after deployment. Or the Zach & Kelly breakup episode of Saved By the Bell. (Hey, we all have our own things!)

The other important piece of the puzzle is the meds/therapy combination. I consider taking my antidepressants and anxiety meds just as vital as taking my immunosuppressants for my Connective Tissue Disease and my meds & inhalers for my ILD. The meds give my brain the balance they need and my therapist helps me feel heard, even at a time when it feels like being a handicapped woman is like screaming into a void that I matter. The meds/therapist combo reminds my heart and mind that I DO matter, and that any thoughts to the contrary are natural and temporary.

I also take a lot of solace in knowing that I am not alone in my experience. This is all new TO ME but not as a disease. Waking up every morning with such uncontrollable coughing and thick mucus in my lungs that I gag, puke, pee or the winning trifecta of ALL of them! Certain days, even when I have slept ok, I have zero energy to do anything. That I have to mentally gear up to dig deep enough to find the energy to stand up and walk to the bathroom, let alone cook anything more than in the microwave or an air fryer. That I can be doing something simple and basic, but today I can’t do it without severe shortness of breath and significant pain in my chest, back, or extremities. My endless frustration as my nasal cannula and 25ft cord gets so tangled it chokes me, gets stuck in the refrigerator, or I trip on it when walking and barely catch myself as I fall.

Guess what? Every person with this disease has been though these things. I’m not unlucky or doing anything wrong. I am living the same experience as everyone else, it just sucks for all of us. And as much as I believe that misery doesn’t actually love company, it IS wonderful to know that I am not unique in my experiences. What I feel is valid. What I feel is normal. Being frustrated IS normal. It’s ok to be unhappy about the situation that I’m in.

The shortcut answer for how I deal with things that I am really dreading: another Pulmonary Function Test, important test results, calling the frustrating company for any medical or oxygen supplies… is the exact same as when I was tricking myself into riding a rollercoaster or taking the polygraph. I tell myself, “it’s already over.” I picture myself on the other side, I’m looking back and I’m just remembering what happened, not actually living it in real-time. That means that I’ve already survived the discomfort, the thing I’m dreading has actually been conquered. No need to dread something I’ve already triumphed over. That may seem silly, but it’s a mind over matter thing that has been quite successful for me over the past 15 years or so.

I am a work in progress, just like my coping skills. I try to stay present and focus on one thing at a time. It makes me appreciate everything – positive or negative, I appreciate it as something adding value to my life. Thank you for adding value to my life.

Please feel free to share your own Anxiety experiences or coping skills in the Comments.

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