Shannon's Sunflowers

Shannon's Sunflowers Mobility Limited/Spirit Unlimited
Aiming to be the Bright Spot in Your Day. Terminal lung disease, 24/7 O2 Living my Bucket List!

Making memories, laughing through life & encouraging everyone to not postpone JOY. https://linktr.ee/ShannonsSunflowers

07/09/2025

I walked 4 blocks today. Me, my walker, my Portable Oxygen Concentrator (and extra batteries!) and a whole lot of determination mixed with appreciation. Today was the PERFECT beach day and though I cannot walk on the sand, I could hear the waves and smell the breeze and see the wildlife on the dunes.

There were people walking for pleasure, walking for fitness, riding bikes, jogging.... I didn't look at any of them with envy. We're each in our own story and we each have our own capabilities. This is when I remind you that Comparison is the Thief of Joy! If I had watched those runners glide effortlessly over the terrain and compared them to my sweaty sunshine walker shuffle, I'd feel hopelessly inadequate.

Instead - I took pride in the fortitude my body showed even when I really didn't want to, and we kept going! I was a WINNER today, as the slowest poke on the Promenade.

Find your wins. Celebrate them. Don't compare your life, your journey, your struggles to someone else's. You don't know their road. Focus inward and you'll find more pleasure in what's out there.
I'll get off my soapbox now. I'm exhausted and expecting to sleep well tonight!

DISCLAIMER: I wasn't actually alone - Mama was moving the car to my second location so I didn't have to walk back- she met up with me shortly thereafter

Alright. Book 3 of the series is done and WOW. I like it! I appreciate that the author has a Connective Tissue Disease l...
07/08/2025

Alright. Book 3 of the series is done and WOW. I like it! I appreciate that the author has a Connective Tissue Disease like me and even uses traits in her characters. I respect that the relationships are HEALTHY and not manipulating, they're inclusive and accepting.

Entertainment that also provides good examples of healthy people. Not to mention - GIRL POWER.
Waiting for the next one will be tough, but this goes back to the library tomorrow and I begin my journey back in time to Scotland with the Outlander series. Very much looking forward to it!

Please drop other summer reading suggestions below! Sometimes I like to break up the series a bit just to keep it fresh.

I have only managed to eat one reheated soft pretzel (from my neighbors BBQ) in the last 48 hours. My stomach is wrecked...
07/08/2025

I have only managed to eat one reheated soft pretzel (from my neighbors BBQ) in the last 48 hours. My stomach is wrecked and I'm not even on the most severe of the medicine yet.

But let it be known that at 10pm on this Monday summer evening, I made myself a thick cut ribeye (props to Mama's discount meat score!), sauteed onions, mushrooms and spinach and a homegrown tomato as a side.

If my GI tract is kind, this meal will fuel me for an exciting few days I have planned!

As much as I appreciate that the City of London has a ton of resources for mapping your journey for many protected group...
07/07/2025

As much as I appreciate that the City of London has a ton of resources for mapping your journey for many protected groups, please forgive me if I'm not a little nervous that this is almost a Decade old.
This is from the BEFORE times. You can't tell me things haven't changed significantly since 2016.... You know, global pandemic and all.

London Underground

This was shared on one of my support group pages. I hope that I am being straight with you all about my prognosis, but i...
07/06/2025

This was shared on one of my support group pages. I hope that I am being straight with you all about my prognosis, but if you have any questions, please don't hesitate to ask.

I WANT to make time to see you now, While I am able to be active and out of my little house. Please! Let's make plans
_________________________
PATIENTS .. but this is a message PRIMARILY for the patients in this community...

When you do NOT tell your loved ones just how bad this disease is ... that it's terminal ... that you are going to die ... YOU are SETTING THEM UP for EXTREME PAIN, SADNESS, DIFFICULTY IN ACCEPTING what has happened.

You are ROBBING THEM of TIME SPENT, QUESTIONS ASKED, AND MORE.

It is SO UNFAIR to THEM. It is UNCARING of WHAT THEY NEED.

You THINK you are HELPING THEM but you're NOT. You're HURTING THEM MORE.

I KNOW this message is strong. I have used capital letters to get your attention. I have seen this OVER AND OVER AND OVER again for the past 16 years and it angers me every single time.

I hear patients say "this is my disease and mine to manage the way I need." That's true. But please PLEASE realize that YOU are NOT the only one in this equation.

Mom and I had many talks over her 6 years after her diagnosis. She told me MANY TIMES "I have it easy. When I die, I will rest. But you have to carry on without me. It is much harder for you."

Mom was CORRECT. OMG ... I can't even tell you how hard it was for me, BUT ...

1. I knew it was coming so I was not blind-sided.
2. I had TIME to just BE with mom. To talk to her. To do things with her. I got to learn more about her life "before me." We got to go on that cruise we had talked about since I was a young girl watching "The Love Boat" with mom on TV. I got the chance to really be with my mom.
3. I got to hear from mom herself. What she was feeling and thinking.

This ALL helped ME to go on without her - my mother, my teacher, my confidant, my VERY BEST friend.

Please PLEASE do NOT ROB your loved ones of YOU AND YOUR TIME. Please tell them. Let them be your partner in this journey. And help them to prepare for when you won't be there with them.

07/05/2025

Stories of my Childhood July 4th Trauma... As told by my Mom. Hopefully all those years of cowering can bring you some Chuckles.

Cheap Thrill summer continues with an All American holiday at the pool in our campground. I grew up going to the pool fo...
07/04/2025

Cheap Thrill summer continues with an All American holiday at the pool in our campground. I grew up going to the pool for July 4th where there was a quarter toss, greased watermelon and tug of war.

Life's simple pleasures are such a blessing
💜🌻

I had the most marvelous day back in my hometown. Due to severe and unexpected flooding, we got to see some remote areas...
07/02/2025

I had the most marvelous day back in my hometown. Due to severe and unexpected flooding, we got to see some remote areas that we don't visit often, and I got to spend the day at the Farmer's Market (Roots - pronounced Rutz) and then 3 of my Middle & High School friends all came together and we sat on the floor and just caught up.
No, I did not sit on the floor. But I sat in the recliner near them and we reminisced, romanticized and vented. My dear friend Karyn Sherwood is fighting a rare health battle of her own, and thankfully we were both feeling strong enough to spend a few, blissful hours together.
Mom's car service was a little unpredictable today. Can't wait for her to get her reviews. Haha

You know those people who meant SO MUCH to you that you think of often but don't know where they are now? Reach out. It'll be good for both of you 💜🌻
Don't put it off. Tomorrow is not guaranteed

Doctors say I need to avoid stress and anxiety because it's so detrimental to my health, but I would be remiss if I did ...
06/30/2025

Doctors say I need to avoid stress and anxiety because it's so detrimental to my health, but I would be remiss if I did not acknowledge this as it impacts me directly.

I will probably never get Social Security Disability for such documented reasons as, "my hands and legs work" and my health insurance is through the government marketplace, so cuts to that will be gutting my coverage.

This Budget Bill is a disaster for every day Americans and a gift to the mega wealthy. PLEASE call your elected officials and try to save people like me the modicum of dignity we have left.

06/29/2025

CHEAP GIRL SUMMER
*Not sponsored, just sharing great money saving tips
Have you tried Too Good To Go ??

06/28/2025

For those of you planning upcoming travel, and especially my Sunflower Travel Deals & Tips members .. til midnight tonight (Saturday) DOLLAR FLIGHT CLUB is offering a year's free membership!!
It's worth signing up just for the perks like lounge access.

Again- I do not benefit financially in any way by sharing these deals, I just want more people to get out of their comfort zone and see the world. You would be surprised just how very affordable that can be!!

BUCKET LIST UPDATE:For those of you following along at home, due to my disease progression, I'm looking at 10-16 months ...
06/27/2025

BUCKET LIST UPDATE:
For those of you following along at home, due to my disease progression, I'm looking at 10-16 months of feeling strong enough to keep getting out and doing the traveling I SO love. Some of the items on my Bucket List can absolutely be done once I am permanently wheelchair bound and can no longer fly because of my oxygen requirements, so they're moving down the list for now. But I need to prioritize what's left!

GREEN items have been achieved since I first shared my Bucket List last fall. My friends have been generous and supportive in ways that have humbled me!
YELLOW items are in the works! They WILL happen at some point in my early/strong timeframe and I cannot wait.
RED have been eliminated because either the time has passed or my health wouldn't make it possible. That's ok, I've got a lot of other amazing things awaiting me- like the Mardi Gras parade I was invited to join in February!

This summer I am living a very fulfilling but frugal life. I'm reading my library books, painting my seashells, enjoying the free amenities at the campground and loving the beautiful summer days at the Jersey shore. I eat every meal at home (unless I post a pic) and am trying to do odd jobs to save money til we get past peak travel season.

I'm looking for any MUST DOs for the early fall, especially in Southern England, Wales, and in/around Paris. I am willing to trade in Stonehenge for Stratford-Upon-Avon and Bath. Mom and I WILL see Wrexham before I die because the Welcome to Wrexham documentary has touched us so deeply and parallelled our experiences living in a small town driven by sports, even as many other tragedies befall it.

Crepes are 100% my favorite food. I will have one in France. Pan au Chocolat w/Cappuccino is my favorite breakfast.

What MUST I see to experience as much of the culture, food and essence of these areas? Please post pics, ideas and if you have tour company recommendations. All of my travel must be well planned in advance as it will require a wheelchair. I am hoping to save for a collapsible power wheelchair, which opens more doors and saves mom's 67-year-old arms.

Address

565 Wellington Square
Exton, PA
19341

Website

https://gofund.me/4b9de27d

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