Shannon's Sunflowers

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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Don’t Let That Old Person In

February 9, 2025

Doctor Visits

Don’t let that old person in. That is the saying in our Interstitial Lung Disease (ILD) support groups. Despite the significant limitations on our bodies and strength, the hardest battle is often finding the resolve to push through on the rough days when we are so completely depleted. Many struggle with leaving the house or meeting up with friends because of the fear of illness and its implications on our long-term health, as well as chronic mourning for a lifestyle lost.

It’s difficult sometimes to reconcile the information given to you by such a variety of doctors. When I met with my Rheumatologist in January and we discussed long term goals, he stated it was his hope that I would be able to get off of my supplemental oxygen for a time, the idea of which is admittedly very alluring. But when I met my Pulmonologist last week and I mentioned the same, she made it clear that is extremely unlikely.

Though my pulmonologist likes having all of the test results available to her before my appointment, getting my hands on the full results so that I can more fully understand them is a different undertaking. Miraculously, my pulmonologist is fabulous about writing thorough letters to my PCP about my diagnosis, test results, medications and treatment plan. If I have questions about anything we discussed or my notes from our appointments, I often find the answers clearly laid out in these multi-page letters.

For those of you following along at home, I was unable to complete my original Pulmonary Function Test (PFT) in December, but thanks to a very encouraging and skilled nurse coaching me through the uncomfortable process in early February I was finally able to finish all tests for a fuller picture of my lung function. This PFT measures: lung capacity, obstructions, absorption of O2 and expelling of CO2.

This is not me, but this is a Pulmonary Function test in action.

Let us start with the good news- my tests show no obstructions to my airway inhibiting my breathing. I consider that a victory and one less battle to fight. My newest PFT does show that my Vital lung Capacity is 1.26 liters (33%), and my body is only expelling 26% of the CO2 in my lungs, which is contributing to my chronic hypoxia. This has helped me understand both the pulmonary fellow’s analysis that my lung capacity is “severely limited” and the pulmonologist’s belief that I will be unable to get off my oxygen.

My pulmonologist is pleased that I have been traveling. She and her team acknowledge frequently the importance of mental health and resilience in the fight against the creeping negative thoughts and depression that often accompany an ILD Diagnosis. She expressed pleasure at both the activity of travel and the joy it brings me. She plans to present my case at an ILD Conference in March, and I wish I could be a fly on that wall to learn from a room full of people with opinions on my case.

My next objective, between pulmonary rehab and the impending spring weather, is to lose the prednisone weight. Weight loss is important because BMI is a contributing factor in fitness for lung transplant, but it’s also easier on your lungs if they aren’t lifting the extra poundage to breathe. Just another reason to keep traveling because not only did I lose 4lbs on my recent trip because of a clean diet, but I was also far more physically active than I ever manage at home through a variety of excursions and navigation of the cruise ship’s decks.

For the time being I am willing to admit that my body is tired but my spirit is strong. I plan to continue getting out when I am able and resting when my body calls for it. The past month has shown me that the warm weather makes a HUGE difference in my comfort and mobility. One breath of that brisk, cold air and my lungs cease up. It can take two or more hours to stop coughing and get my voice back, let alone get comfortable in my own skin. Those conditions make it difficult to get moving, a necessary step in losing weight. As I increase the warmth in my life, I aim to increase the physical activity as well and build up my strength.

Major thanks to all of the friends and faire family who made it out for our impromptu gathering, and to my Aunt Lori for making these gorgeous sunflower cupcakes for the event. Her baked goods are outstanding and she’s been spoiling me as of late. Friends near and far – please mark your calendars for March 21 when we will gather again at Drunken Smithy in Lebanon, PA.

For anyone feeling drawn to support my medical and living expenses, my friends set up a GoFundMe as I continue to wait for determination on Disability. These funds are also supporting my Bucket List as I am able and allowing me to see the world. Thank you for your kindness.

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Pushing My Limits, Holding My Breath

February 4, 2025

Doctor Visits, Lifestyle Changes

After a majestic birthday trip with my mother through the southern Caribbean during which I pushed myself to my physical limits while embracing every opportunity I could physically muster, I returned to the chilly northeast for medical appointments. Bright and early this Monday morning, I had a Pulmonary Function Test (the one I was unable to complete in December), Six Minute Walk Test, and a consultation with my pulmonologist, who is the Pulmonary and Critical Care Program Director for Cooper University Healthcare.

To the healthy amongst you, walking for 6 minutes might seem like an effortless undertaking unworthy of note, but for #lungwarriors like me, it’s a dubious task. The clinician is constantly monitoring my O2 while putting me through different levels of exertion. She’s also adjusting my oxygen levels on the fly to be sure my needs are met but pushing me to see what my body can withstand.

The Pulmonary Function Test (PFT) frankly sucks and is a frequent topic of discussion in my lung disease support groups as a significant pain point. There are 4 tests, given in a glass “soundproof” looking booth that examine lung capacity, oxygen exchange, airway obstructions, and effects of lung scarring on CO2 retention. My mornings are always a struggle to breathe – typically involving 30-120 minutes of coughing and nose blowing until my airways are clear. If there are allergens or the air is particularly dry or cold, I often cough til I vomit and most definitely pee myself. It means that when I have morning appointments, I frequently have to wake up 2-3 hours before I anticipate leaving because when I’m expectorating the morning YUCK, there isn’t really a pushing though. It has its way with me til it’s done and then I can proceed with my day. Unfortunately, these appointments began at 830a, and the office is 80 minutes from home, so the day started very early. It made completing the test even tougher, but thankfully Colleen was a very skilled nurse who guided me through and cheered me on! She even brought me a cup of coffee afterwards as a consolation prize when she saw how rough it was on me.

After the results of the tests were analyzed, I met first with the Pulmonary Fellow who attended me in the hospital. She delved further into my current experiences, challenges, struggles, and strengths. She explained that my airways are unobstructed but that my lung capacity is “severely limited.” When I asked her what the long-term prognosis is, she said that she wasn’t comfortable talking about that without the Doctor, so she went to retrieve her mentor.

My diagnosis is Interstitial Lung Disease (ILD) and Chronic Hypoxemic Respiratory Failure. ILD is a restrictive lung disease where the restriction comes from scarring. Once a lung is scarred, the scarring is permanent and cannot be reversed. CHRF is a long-term condition where the lungs cannot get enough oxygen into the blood. It can also occur when the lungs cannot remove carbon dioxide from the blood, leading to a buildup of carbon dioxide and potential organ damage.

The challenge at present is that since my diagnosis is so recent (Sept 2024) and all initial imaging was tainted by the pneumonia and inflammation, there hasn’t been enough time to gauge the speed of disease progression. It makes any estimates as to time remaining unreliable. She did say that she believes that with the prescribed Pulmonary Rehab, I should be able to regain some quality of life, though always with my supplemental oxygen. I intend to begin that course of treatment next week.

In the meantime, I am struggling to process. I want to put my head down, disappear into a simple life and continue to see the world, keeping peace of mind by staying uninformed and ignoring the world’s tribulations. But the Shannon Maria that I know has been fighting injustice since a young age. She is stubborn and determined when she feels she’s been wronged or if she sees someone she cares about mistreated. THAT Shannon Maria couldn’t remove herself from the world’s atrocities and democracy’s unraveling just because it’ll keep her sane. But my mind always comes back to my prescription from my Doctor: No Stress. No Anxiety. No Cold. My breath and pulmonary health depend upon it.

In the interim, I intend to live my life fully and purposefully. I once again walk the line of wanting to live completely but realize that I must be cautious and not get sick as I adventure. Something as simple as a cold can have significant impact on lung capacity, shortness of breath, and coughing. Another bout of pneumonia could be catastrophic and land me in the hospital indefinitely, with the only option being a double lung transplant. But if I stay in my home in a small bubble, I am not living the life I need for my soul, and thus not truly alive.

For those willing to support my Bucket List Adventures and Medical/Mobility costs, my friends put together a GoFundMe. Thank you for the future core memories.

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Do It For Future You

January 26, 2025

Lifestyle Changes

I am the first to admit that I struggle with anxiety. I can tell you exactly when it started (December 2015). My first marriage was crumbling and after 11 years of finding my identity as being a “misses” I wasn’t sure how to navigate the world alone.

I understand what it’s like to look at a simple task and feel frozen – Put something off repeatedly because the thought of it is debilitating, even if you KNOW that you’ll be glad you did afterwards.

Looking back, I can’t believe what I’ve done! I’ve been, seen and accomplished many things that folks only dream about. I’ve been to 5 continents, was a stunt woman, I’ve been on Hollywood sets and have received some of the coolest, most desirable training that our government offers, nevermind the millions I’ve raised to help cancer and heart disease patients. I’ve opened several restaurants and worked every job inside from dishwasher to server and chef and served on nonprofit boards trying to change lives and make the world a better place.

So how is it that now I am crippled by the idea of calling the oxygen delivery or medical supply company because they were mean to me. What?! Don’t I know who I am? The way scarier things I have done?

Now that I’m doing a better job of putting myself first, that includes the comfort and happiness of future Shannon. Maybe I don’t have the spoons to do it for myself right now, but can I possibly dig deep to help out future Shannon? This isn’t just for chores- it could be physical activity. Can I push for just 2-3 more minutes before I get in the wheelchair bc my lungs and legs are growing stronger as I try to push through with my walker?

There are many times recently when I go about my day and everything is where it belongs when I need it. I don’t have to wash my favorite travel mug to use it because it’s already clean and in the drying rack. Other easy examples of this include: folding AND putting away laundry when the cycle finishes instead of fluffing it 4 times, washing dishes when I’m finished eating, coming home and hanging my jacket up and putting my purse away. But this absolutely includes bigger things like: making sure the house is cleaned before you go away for the weekend so that you don’t feel behind when you get home.

Call the doctor. Make the appointment. Schedule the test. Don’t let the uncertainty occupy space in your brain or start to cause anxiety and stress. NOT KNOWING – NOT DOING – it is a decision. Just like avoiding the uncomfortable conversation. I hate conflict. For decades I would rather have not spoken to you again in my life than have to work through a *potentially uncomfortable situation. Do you know how many times I was worse off because I pushed through a conversation I was dreading? ZERO. How many times did I experience a sense of relief and closure of that gaping wound? 💯% It is amazing how my brain can know that information but somehow my body still freezes. I need to make a conscious decision to confront the difficult situation.

I promise you, it’s worth it. The peace of mind is absolutely worth it.

Do it scared. Do it nervous. Do it anyway.

Future You will thank you.

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Rediscovering Bliss: A Journey Through Gratitude, Nature, and Everyday Miracles

January 16, 2025

Lifestyle Changes

I’ve read and watched so many people’s stories of finding their center, forgiving those who have deeply hurt them, beaming with joy in even the crappiest of circumstances and I’m gonna be real with you- I rarely believed them. I always considered myself a very positive person and though I’ve faced my share of hardships, I believe that I have lived a better life than most. That being said, I still carried my fair share of resentments, anger, hurt and pain, I just tried not to give it too much power in my life. Over the past few posts, I’ve discussed how very depressed I had become and that brought with it a skepticism and cynicism that I was ashamed of, but was so all encompassing that I couldn’t see how these friends and public figures were supposedly in such a peaceful mindset and forgiving headspace.

I read a book about 10 years ago called, “The Happiness Advantage” that dove into the science of WHY happy people are luckier. I’m sure we could debate whether there is “science” in “luck” but the book argues, quite effectively I might add, that happy people are more open to the world. Their positive mindset makes them predisposed to seeing opportunities and welcoming life’s twists and turns. Perhaps it boils down to a scientific explanation for – put good energy into the universe and good things will come back to you. I feel that since my diagnosis, I have become the embodiment of this.

When I first went into the hospital, I was honestly so relieved to not be working, physically struggling just to breathe and eat, and emotionally torn about wanting to be with my businesses guiding them to the Labor Day weekend culmination of summer but knowing that I needed to focus on myself. As each day moved by, I was content to learn a bit more about my condition, problem solve with the doctors through my symptoms and history, and encouraged by improvements when I could see them. I think that the first wave of GRATITUDE that I experienced was the moment I rolled out of the hospital. I will never forget the feeling of the sun on my skin and the scent of fresh air in my lungs. It was pure bliss.

From then on, I started to surprise myself by the unbridled joy I experience every day in the simplest of things! I truly appreciate everything from being lucky enough to awaken early to see a sunrise to the mental clarity I get from the icy water when my shower turns cold. I’ve always had blankets but now I actually feel them on my lap: their soft texture, their comforting weight, their reassuring warmth. I smile and talk to the bird bathing in a puddle of melted snow, I giggle with delight as I paint-by-number a canvas of a Sea Isle City sunset, or marvel at the texture of my Ninja Creami sorbet.

Reinforcing these new realizations was my trip to the Azores in November. I hadn’t been to Europe in a decade, and to be somewhere as naturally breathtaking that focused on sustainability, preserving nature, and that crafted foods that are so close to the earth was amazing synthesis with my new outlook. The fish was so fresh it came out of the Atlantic mere hours before and it was so unique to the area that there wasn’t even an English name for it. Dairy is their main export with both the cheeses and the steaks so fresh, lean and hormone free that the flavor was full and developed in a way I had never experienced. Even the snack foods we bought from the grocery store contained REAL ingredients instead of fake colors and flavors. The salty snacks like chips and pretzels weren’t salty at all; the sweets and chocolates were hardly sweet but in both cases the flavors were so developed and full! Potato chips tasted like potatoes! Fast food sodas came in 10oz cans made with real sugar instead of Big Gulp excess dripping with corn syrup.

When I knew that this life changing mindset had permeated my psyche was this past Friday. It was Friday night, it was 26 degrees and windy, the management in my campground turned off the water so I couldn’t shower or do my dishes and laundry. But I felt strong! I was walking pretty freely around my tiny home (my in-home concentrator has a 50ft cord so I don’t have to carry the weight of the oxygen tank but I can reach everything I need to be comfortable) and I was cleaning up the holiday mess while the electric fireplace roared. Finally, after 2 hours or so, the water came back on but when it did, I noticed that it was foamy and pink. I went around turning on all the water in the house trying to work it through the lines. After several minutes the sinks were running clear so I turned on the shower and let it run and run. It took FOREVER! Did it bother me? Not in the least! I was smiling in the hot steam and I said out loud, “how nice that whatever they used is pink and foamy! It’ll be so easy to see when it’s all worked through.”

I stopped dead in my tracks, turned off the water, and laughed. I thought, “WOW – this situation might really bug some people, but I feel only joy.” My heart is light, my spirit is optimistic, I feel the love and support of amazing humans –

Don’t get me wrong, every once in awhile I have a momentary flash of panic when it sinks in that I have no job, no income, I don’t know what I’m going to do now except try to get healthier and live my best life. But as quickly as the panic pings, I am then overcome with a peace and trust that says, “everything will work out.” I don’t know how they will work out, as I have also given up making big plans, but I believe that if I stay open to opportunity, then favorable circumstances will present themselves.

This installment focused more on the change in mindset and outlook bringing inner peace and outward joy. Next time, I regale you with stories of some of the unbelievable things that have come my way since this shift.

For anyone feeling drawn to support my medical and living expenses, my friends set up a GoFundMe. These funds are also supporting my Bucket List as I am able. Thank you for your kindness.

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My Battle with Burnout, Breathlessness, and Building a New Outlook

January 7, 2025

Lifestyle Changes

2024 is the year that saved my life and almost killed me. Anyone who knows me is likely aware that I have always been ambitious and loved to keep busy. At first it was school clubs and volunteer opportunities, as I aged it was community outreach and entrepreneurship. After my first divorce, I coped by throwing myself into everything and soon found my identity solely through my work. By the time the pandemic hit, it was everything a restaurant owner could do to survive (we’re selling eggs for goodness sake) and soon I was running multiple businesses, corporations, seasonal operations, and undertakings. Entire days, weeks and years were dedicated to my employees, my clients, my vendor relationships, and the bottom line. I was “too busy” for any self-care, escaping for 2-3 pedicures a year, and monthly bingo games, but otherwise I had lost touch with many family and friends, while also losing myself. I no longer took time for the passions that lifted my soul, and despite living in an idyllic place, I rarely even took the time to enjoy the ocean’s beauty and tranquility.

Though I had increasing trouble breathing for 2+ years, I attributed it to a sedentary lifestyle, aging, and gaining weight. When on vacation in the mountains of Ecuador, at 16,500 feet up at the majestic Quilotoa crater lake, not only was I extremely altitude sick but was also unable to breathe. On a memorable trip back to Gettysburg College for my 20-year college reunion, I couldn’t walk back to my dorm room without accepting a ride from a kind Sigma sister.

All of this was disturbing to me but I was managing IF: I got up early enough to cough all the discomfort out of my lungs, had a pocket of VapoCool cough drops, and slept without laying flat. Until one day, I couldn’t manage anymore. I missed 2 ½ days of work because I couldn’t walk. I didn’t have the energy. When I finally arrived at the restaurant on the afternoon of the 3^rd day, after it taking 5 hours for me to get showered and dressed, a trusted friend with chronic medical issues of her own had a horrified look on her face at finally laying eyes upon me. She begged me to go to the hospital, saying my skin was grey and lips were blue.

When I went to the ED, I thought I’d be waiting forever because I wasn’t bleeding; I expected to be given an inhaler or a treatment then be sent home. I was only there a few minutes before they did my intake and as soon as they took me O2 sats, they wheeled me away. I spent 21 days in the hospital, 11 days in ICU at Cooper University Hospital and from the moment I laid down in that bed, all that was running through my head was “it’s about me now.”

Don’t get me wrong, it didn’t sink in at first. I wanted to be out in 3 days because our restaurant was being featured on television. I had to do payroll on Day 2 or the entire staff wouldn’t get paid. Labor Day was approaching and the staff shrinking so they NEEDED me. But as I was sitting in the ICU running payroll on my laptop (which later took a nose dive b/c it was a LOT of cords) and talking to the nurses about consent to be intubated if my breathing got any worse, I realized… I CAN’T do those things. I physically COULD NOT.

A few days later, my pulmonologist pointed out that when I touched my work phone, my BP and Pulse would jump, while my O2 plummeted. He told me that my prescriptions moving forward were: no stress, no anxiety, no cold as all three could negatively effect my breathing.

I do want to caveat that I was struggling with some crippling anxiety throughout the summer as well as recurring bouts of depression, but just 2 weeks before I was admitted, my therapist prescribed anxiety meds and adjusted other medicine that was having a transformative effect on my outlook.

I laid in that bed in the ICU watching summer come to a close out my window and I felt so blessed. At the thought of giving up all the distractions and unrewarding stress, my whole spirit was light. For the first time in recent memory, my heart wasn’t heavy. I had people from every season of my life reach out – reconnecting with some after almost 2+ decades. The 3 weeks (to the hour!) I spent in the hospital was a Ctrl-Alt-Delete for my whole life. Almost four months later, though I am physically adapting to a new normal, I’m also doing so emotionally. I’m in a new place of honesty, reconnection, and self-respect that has brought so much joy and positivity to my life. It has absolutely come to pass that merely putting positive energy into the universe and being open to the opportunities the world shows me, I have had some unbelievable experiences, which were always the most important thing to me.

I’ll be deep diving into the effects of this beauty I’ve experienced since opening my heart and my life in this next series of posts, though I expect for the stories to be endless if I continue to embrace the goodness that is coming my way.

As always, thank you for reading this far, and if you’re so inclined to help support my medical costs and bucket list, my amazing friends put together a GoFundMe.

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Doctor Appointment Traditions

December 24, 2024

Doctor Visits

Tradition is important. At this time of year, it’s more about Holiday traditions but I wanted to share some of ours.

First- anxiety puking. It’s my FAVORITE! Truth is, I used to do it all the time when I had something big in front of me that was intimidating or unknown. A few weeks before I went into the hospital for hypoxia, my therapist prescribed me an anxiety pill and the results were noticeable! I credited this with part of my positive outlook during my hospital stay- my meds were right so I was in a good head space and able to tackle everything as it came without getting overwhelmed.

In wonderful news, my resilience has continued with one new snafu. On days of important tests or doctor appointments, I definitely have anxiety in the mornings and I need my ceremonial barf so I can start fresh and go about my day. In good news, it’s only happened 3 times in 3 months, so I am happy with this progress.

Lunch! It is admittedly in my genes, but I am actually quite food motivated. In a normal week I eat 98% of my meals at home. The lengthy drive and morning discomfort is rewarded with lunch! Because we now live in Jersey, there is no shortage of diners near the health campuses so we’ve been lucky to try a delicious array so far. Open faced turkey? Mashed potatoes? Sausage gravy? Hello diner delicacies.

Milkshake! What is a diner lunch without a milkshake?! So far, I’ve gotten strawberry every time, which isn’t something I’d usually seek out, so now I’m coming to associate strawberry milkshakes with surviving another probing or scanning. It is definitely a celebratory beverage. I’m not sure this tradition can continue in the new year as we focus on reducing inflammation and improved food choices, but I choose to enjoy it while I can.

Crashing. Since all of my dynamite doctors are part of the Cooper University health system headquartered in Camden, and I live “down the shore” in South Jersey, it’s a lengthy commute and a long day for all of these appointments. Sometimes it’s a quick 20 minute test other times, it’s a 2 hour consult. One thing for sure is that til we get back home, I collapse in my pj’s and focus on rest and recuperation. Rest is my friend.

Thank you for being my friend. Have a magical holiday season. I hope your traditions bring you joy ⭐

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