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<item><title><![CDATA[Rare Disease Day 2026: A Season of Reflection, Gratitude, and Growth]]></title><link>https://findyourrare.com/blogs/rare-perspective/rdd2026reflection</link><category><![CDATA[RARE. Perspective]]></category><sr:tags><![CDATA[]]></sr:tags><dc:creator><![CDATA[kristine hoestermann]]></dc:creator><pubDate>Sun, 01 Mar 2026 03:40:44 +0000</pubDate><sr:image>https://cdn.shopify.com/s/files/1/0004/2513/2076/articles/blog-2025.png?v=1772336552</sr:image><description><![CDATA[

The Eighth Grow Awareness: A Rare Disease Day That Looked Different
This year, Rare Disease Day looked different. And so did the eighth Grow Awareness. If you’ve been part of this journey since the beginning, you know what this season usually brings: full rooms, overflowing raffle tables, bingo cards, community buzzing, last-minute logistics, and me running on coffee and adrenaline trying to make sure every detail honored the families we were supporting.
Grow Awareness has always been a movement. Loud, beautiful, community-powered movement. But this year it was quieter, and I didn’t expect that to feel so meaningful. There were fewer logistics and more reflection. Fewer checklists and more gratitude. Instead of standing in the center of an event space making announcements, I found myself standing in the center of perspective.
Eight years. Eight Rare Disease Days of choosing to show up, not just for my family, but for the 300 million people globally living with rare diseases.
From Survival Mode to Stewardship: How Advocacy Evolves
When I started Grow Awareness, it was fueled by urgency. By confusion. By that gut-level realization that rare disease families are navigating systems that weren’t built for them. It was survival-mode advocacy. We needed people to understand. We needed funding. We needed community. We needed to not feel so alone.
This year felt different because we are different.
There’s something humbling about realizing you’re no longer in the raw beginning. That the crisis has softened into stewardship. That the fear has transformed into informed advocacy. That the isolation has grown into a platform.
Rare Disease Day used to feel like one big exhale, a day to be loud enough to make the world look our way. Now it feels like integration. Grounded, rooted, earned.
For 300 Million People, Rare Disease Day Is Every Day
Here’s the truth no one talks about: for those of us living with a rare disease, Rare Disease Day is every day. It’s every insurance appeal letter. Every specialist appointment. Every lab result refresh. Every invisible symptom that requires explaining, again. Every moment of advocating when you’re already exhausted. The calendar date is symbolic. The lived experience is constant.
This year, instead of pouring everything outward, I let myself witness what already exists:

A community that shows up without being asked
Conversations about invisible illness that are no longer whispered
A business rooted in purpose because rare and invisible stories deserve visibility
Growth that didn’t happen overnight, but happened faithfully

I thought about the first Grow Awareness. How unsure I felt. How I just knew we had to do something. And now here we are, eight years later. Still here. Still advocating. Still building. Still choosing hope. But doing it from a place of grounded strength instead of survival. There’s a different kind of power in that. A quiet one. A steady one.
A mature advocacy that understands impact isn’t always measured in crowd size. Sometimes it’s measured in endurance, in consistency, in showing up year after year, even when the world isn’t watching.
The Growth You Don’t Always See
This Rare Disease Day, I felt awe. Awe at how far we’ve come medically. Awe at the resilience rare families carry. Awe at the fact that something born from crisis turned into connection. If you’re part of this community, whether you’re living with a rare disease, loving someone who is, advocating, educating, donating, or simply learning, thank you.
Awareness matters. Education matters. Systemic change matters. But so does reflection. So does honoring the miles already walked. So does recognizing that for 300 million people worldwide, rare disease isn’t an annual campaign. It’s daily life. And if this year felt quieter for you too, maybe it’s not because the fire dimmed. Maybe it’s because the roots grew deeper. And that might be the most powerful kind of growth yet.
Closing the Grow Awareness Season, and Looking Ahead
As I close this Rare Disease Day and this eighth Grow Awareness season, and turn our eyes toward what’s next, my hope is simple: that you continue to show up, that you continue to stand up, and that you continue to speak up.
For yourself. For your family. For the 300 million. For the newly diagnosed who haven’t found their footing yet. Advocacy doesn’t end when the decorations come down or the calendar flips. It lives in everyday courage.
And if the last eight years have taught me anything, it’s this: when ordinary people keep showing up consistently, rare change becomes possible.
To my herd: We’re not done. We’re just getting started.
]]></description></item><item><title><![CDATA[Rare Disease Day 2025: Shining a Light on the Unseen Battles]]></title><link>https://findyourrare.com/blogs/rare-perspective/rare-disease-day-2025-shining-a-light-on-the-unseen-battles</link><category><![CDATA[RARE. Perspective]]></category><sr:tags><![CDATA[rare disease day, rdd]]></sr:tags><dc:creator><![CDATA[kristine hoestermann]]></dc:creator><pubDate>Sun, 02 Feb 2025 01:47:50 +0000</pubDate><sr:image>https://cdn.shopify.com/s/files/1/0004/2513/2076/articles/rdd-blog-thumb.png?v=1738462841</sr:image><description><![CDATA[
 
Welcome to February, the rarest month of the year! As we gear up for Rare Disease Day 2025, we’re reflecting on its impact, history, and how RARE. has built its traditions through our Grow Awareness Campaign—because awareness isn’t just one day, it’s every day.
 
What is Rare Disease Day?
Every year, on the last day of February, the global rare disease community unites to make the invisible- visible. Rare Disease Day is a movement dedicated to raising awareness for over 300 million people living with rare diseases worldwide. It’s a day for advocacy, action, and amplifying the voices of those too often unheard.
 
The Origin of Rare Disease Day
The inaugural Rare Disease Day is February 29, 2008—a rare date fitting for a rare cause. Spearheaded by EURORDIS (The European Organisation for Rare Diseases), the day was designed to spotlight the challenges faced by those living with over 7,000 rare diseases.
📍 Fast-forward to today: Over 100 countries participate in Rare Disease Day, making it a global movement for change.
 
Why Rare Disease Day Matters
While a rare disease affects fewer than 1 in 2,000 people, the collective impact is massive:
💙 300 million+ people worldwide are living with a rare disease (RareDiseases.org)
💙 75% of rare diseases affect children, and sadly, 30% of these children won’t live to see their 5th birthday (AccellaCare)
💙 95% of rare diseases have no approved treatments, highlighting the urgent need for research, funding, and policy change (NORD)
 
Rare Disease Day is a call to action:
✔️ Raise Awareness – Shine a light on the challenges of rare disease warriors.
✔️ Advocate for Research – Push for treatments and better healthcare policies.
✔️ Improve Access to Care – Fight for equitable healthcare solutions.
✔️ Build Community – Connect, support, and amplify voices.
 
RARE. &amp; The Grow Awareness Campaign
At RARE., we believe in 365 days of awareness, not just one. That’s why we created Grow Awareness—a campaign that started in 2019 and has since evolved into a community-driven movement celebrating connection, creativity, and advocacy.
 
How It Started vs. How It’s Going:
🌱 2019: The First ‘Plant &amp; Sip’ Event – Our first event symbolized resilience and growth.
🎥 2020: MTV Joins the Movement – A powerful collaboration with MTV to raise awareness.
🗣️ 2021: 24-Hour Clubhouse Marathon – Virtual storytelling and advocacy sessions.
💌 2022: Virtual Card-Making Event – Spreading love and encouragement to our Herd.
🧩 2023: The ‘Pieces of Rare’ Puzzle – A tribute to individuality &amp; unity.
🤝 2024: Friendship Bracelet Swap – Empowering and sharing stories through creativity.
What’s Next? The 7th Annual Grow Awareness
2025: Sip, Thrift, and Shout for a Cause! This year’s Grow Awareness 2025 event is all about Connection and discovery. Whether you join us in person (Sodus Point, NY, on February 22) or virtually (February 28), get ready to discover RARE finds and connect with the community around you.
 
How to Get Involved This Rare Disease Day Season
🌍 Support the Global Movement
 • Share Your Colors – Paint your hands, take a photo, and post it with #RareDiseaseDay tagging @rarediseaseday.
 • Attend or Organize an Event – Find local or virtual events on RareDiseaseDay.org.
 • Illuminate Landmarks – Help get buildings and monuments lit up in Rare Disease Day colors.
 • Raise Awareness Online – Share facts, stories, and resources about rare diseases on social media.
💙 Make an Impact
 • Fundraise for Rare Disease Causes – Host a bake sale, run a charity stream, or set up a donation drive.
 • Advocate for Policy Change – Contact legislators to push for better healthcare and research funding.
 • Support Rare Disease Organizations – Donate or volunteer for groups working in rare disease research and patient support.
🤝 Get Involved with RARE. for Rare Disease Day 2025
 • Attend Our ‘Grow Awareness’ Event – Participate in-person in Sodus Point, NY (February 22) or virtually on February 28. Register here.
 • Join the ‘RARE. IS’ Campaign – Download the RARE. IS template, customize it with your story, and share it using #RareIs, #FindYourRARE, and #RareDiseaseDay. Tag @FindYourRARE to be featured!
 • Create a Social Profile Frame – Show your support by adding a Rare Disease Day 2025 frame to your social media profiles. Instructions are available on our Rare Disease Day page.
 • Add Your Cause to the ‘Awareness is 365’ Calendar – Ensure your cause gets year-round visibility by submitting it to our Awareness is 365 Calendar.
 
Get all the details &amp; sign up here: info.findyourrare.com/rdd2025
 
Together, We Make the Invisible Impossible to Ignore.
Rare Disease Day is more than a single day on the calendar; it’s a heartfelt global movement dedicated to making sure that every individual affected by a rare disease feels recognized, cared for, and empowered. By coming together to show our support, raise our voices, and stand alongside one another, we show every zebra that their story is important, I know im not alone when I say showing up makes all the difference. So all February long join us as we grow awareness and share our RARE. 🦓]]></description></item><item><title><![CDATA[Six Years Of Fighting, Creating, And Advocating—This Is RARE.]]></title><link>https://findyourrare.com/blogs/rare-perspective/six-years-of-fighting-creating-and-advocating-this-is-rare</link><category><![CDATA[RARE. Perspective]]></category><sr:tags><![CDATA[Blog, Creating RARE., Find Your RARE.]]></sr:tags><dc:creator><![CDATA[kristine hoestermann]]></dc:creator><pubDate>Wed, 29 Jan 2025 11:36:15 +0000</pubDate><sr:image>https://cdn.shopify.com/s/files/1/0004/2513/2076/articles/blog-thumbnail_8460b3fd-2eb1-4610-8ed2-7ea748e93fd8.png?v=1738150583</sr:image><description><![CDATA[
Six years ago, before I fully understood what was happening, my journey toward creating RARE. had already begun. I could say I navigated each stage of acceptance, found peace, and embraced my new reality, but that's not my story.
The truth is, I'm still living with a rare disease that has transformed every aspect of my life. The constant shadow of uncertainty looms large, accompanied by the frequent lack of understanding from those around me. Each day presents a new battle as I navigate a landscape filled with physical, emotional, and mental challenges. Accepting this new version of myself has become a daily struggle, often leaving me in denial about my limitations. I used to thrive on meticulous planning and a perfectly crafted to-do list. Now, however, I find myself subject to the whims of a condition so elusive that it hardly has a name. Even after six long years filled with ups and downs, I often wake up in disbelief, grappling with the reality of my journey.
Yet, amid these challenges, something powerful emerged.
Turning Pain into Purpose
As I entered the world of rare diseases, I realized I wasn't alone. So many people fight unseen battles—rare, chronic, and invisible conditions that are misunderstood, overlooked, or dismissed. But I also discovered something profound: We are all rare in our own way.
RARE started as a platform to raise awareness about rare diseases, but it has evolved into something so much more—a space to celebrate everything that makes us unique. This includes not only our diagnoses but also our invisible struggles, our mental health, our quirks, and the parts of ourselves that don't fit into society's definition of "normal."
RARE. isn't just about illness—it's about embracing all of what makes us. The misunderstood, the resilient, the unconventional, the beautiful chaos of who we are.
Creating a Lifeline: The Birth of RARE.
When words failed me, I turned to something I could control—creation. Designing products, apparel, and accessories became a lifeline, a way to say what I couldn't always put into words. These designs weren't just clothing but conversation starters, silent yet powerful declarations of identity.
From those early designs, RARE. was born—not just as a brand but as a movement to make the invisible visible.
The Strength of The Herd
By definition, a herd moves together—and that's what we've built. As I immersed myself in the rare disease community, I learned the significance of the zebra. Unlike horses, no two zebras have the same stripes, symbolizing the beauty of individuality while reinforcing the strength of unity.
Over time, The RARE. Herd became more than just a name. It became a movement. A collective of voices standing together in support, advocacy, and love for one another.
The Evolution of RARE.: Honoring Every Part of the Journey
As we celebrate our sixth year, I am incredibly proud of how RARE. has evolved—not just as a brand but as a movement that reflects the many ways we navigate our unique journeys. Over the years, we've expanded our mission to include a few incredible initiatives: RARE. Elements, Local by RARE., and Create with RARE. These projects highlight a distinct part of what makes us beautifully rare and honor our different paths toward healing, self-expression, and connection.
- RARE. Elements is all about honoring your personal journey—not just the physical healing but also the emotional and mental strength that comes with it. Every piece is designed to reflect who you are, what you've been through, and the story you want to tell.
- Local by RARE. is a community-focused initiative that showcases the essence of your hometowns, favorite cities, or any place that's meaningful to you. Whether it's the city that raised you or the spot where you really found yourself, Local celebrates our deep connections with the places that shape us.
- Create with RARE. is where your vision comes to life. It's more than just custom design; it's about sharing the healing power of creating, which has impacted my life. When I couldn't find the right words, creating gave me a way to express myself. Create with RARE. turn your story into something tangible, meaningful, and impactful, bringing your vision to life for all the big and small events.
RARE. has always been about more than just what makes us sick—it's about what makes us us. These initiatives represent another way for me to share my journey and hopefully provide others a space to do the same.
Six Years Later: Louder, Stronger, Unstoppable
We are proof that there is strength in numbers. What started as a single voice—my voice—has grown into something so much bigger, and it's because of each and every one of you. Our voices are growing louder together, and we will create change.

Because RARE. is not just about rare diseases. It's about rare individuals.

It's about every person who has ever felt misunderstood, unseen, or different. It's about those fighting invisible battles, navigating mental health struggles, embracing their quirks, and redefining strength.
As we celebrate six incredible years of RARE., I want to take a moment to thank everyone who has been part of this journey! Each one of you has helped shape RARE. into what it is today. Your strength, stories, and constant support mean the world to me and keep our mission alive daily. Without you, RARE. wouldn't be what it is now.]]></description></item><item><title><![CDATA[Redefining Gratitude: A Thanksgiving Reflection For Those Facing Invisible Struggles]]></title><link>https://findyourrare.com/blogs/rare-perspective/redefining-gratitude-a-thanksgiving-reflection-for-those-facing-invisible-struggles</link><category><![CDATA[RARE. Perspective]]></category><sr:tags><![CDATA[embracing the mess, gratitude, reflection]]></sr:tags><dc:creator><![CDATA[kristine hoestermann]]></dc:creator><pubDate>Thu, 28 Nov 2024 07:15:15 +0000</pubDate><sr:image>https://cdn.shopify.com/s/files/1/0004/2513/2076/articles/thanksgivng.png?v=1732778116</sr:image><description><![CDATA[
 
Thanksgiving—a day we're told to pause, give thanks, and celebrate. But let's be honest: for those with rare, chronic, or invisible struggles, this day can feel well…complicated. When navigating the complexities of invisible battles, "gratitude" doesn't always come easy. The table can feel heavy with unspoken truths, invisible struggles, and the weight of trying to fit into a holiday mold that wasn't built with our stories in mind.
And sometimes, it's not just the pressure to feel grateful—it's the pressure to feel grateful because things "could be worse."
When Forced Gratitude Hurts
I've been there. 
There was a time when, every Thanksgiving, someone would remind me how "lucky" I was because my situation "wasn't as bad as someone else's." Comments like, "At least you can still [do this]," or "At least it's not [that]," felt like a slap disguised as support.
 Instead of feeling comforted, I felt small. I felt like my struggles weren't enough to deserve acknowledgment. Like my pain had to be measured and compared before I had the right to feel it. Gratitude, in those moments, felt more like a chore than a choice.
 But here's what I've learned: your challenges are valid. Your pain doesn't need a comparison to be real. And gratitude doesn't mean silencing your struggles—it means finding the strength to honor your journey's hard parts and beauty.
 
Let's Flip Thanksgiving on Its Head
What if we stopped forcing ourselves into the cookie-cutter "thankful for" list and started celebrating gratitude RARE. style? What if we made it raw, real, and reflective of the roads we've walked?
 Here's how:
 1. Celebrate What You've Survived
Gratitude isn't just about the shiny wins but the battles fought and the scars earned. Whether it's surviving a brutal flare, advocating for yourself in a system that doesn't always listen, or simply showing up when it felt impossible—you did that. Today, we're not just thankful for your resilience; we're in awe of it.
💡 Empowerment Prompt: Take a moment to write down one thing you've overcome this year, no matter how small. That's your victory—and it's worth celebrating.
2. Thank Your Body for Showing Up
It's easy to feel frustrated by bodies that don't cooperate. But today, let's thank them for what they can do. Maybe your body allowed you to hug someone you love, enjoy a favorite meal, or simply breathe through another day. Progress, no matter how slow, is still progress.
💡 Empowerment Prompt: Find one thing your body did for you this week. Write it down. Speak it out loud. Let it be enough.
3. Redefine 'Family' 
For some, the holiday table is filled with love and understanding. For others, it's…not. And that's okay. Family isn't just about blood—it's about those who see, support, and celebrate you. The Herd is your family, too; we're here to remind you that you belong.
💡 Empowerment Prompt: Reach out to someone who has been your "family" this year. A quick message, a shared memory, or even a meme—connection is everything. 
4. Honor the Power of Rest
Let's be honest: holidays can be overwhelming. And if your body or mind is telling you to pause, listen. Rest is revolutionary, especially for those constantly told to push through. This Thanksgiving, let's be thankful for the quiet moments too. Let's remember that self-care is not selfish; it's necessary.
💡 Empowerment Prompt: Give yourself permission to rest today. Even 10 minutes to breathe, stretch, or sit in silence is a gift worth giving yourself.
Gratitude Isn't Perfect—But Neither Are We
Thanksgiving doesn't have to look like a Norman Rockwell painting for it to matter. Maybe your table is full, or maybe it's quiet. Perhaps you're thriving, or you're just surviving. Here's the truth: gratitude isn't about being perfect. It's about showing up in whatever way you can and finding moments of connection—whether with yourself, your community, or the world around you.
And sometimes, gratitude starts with simply being seen.
The Herd is Here for You
If Thanksgiving feels overwhelming or isolating, remember, you're not alone. Lean on your community. The Herd is full of people who "get it"—your triumphs, your struggles, and your desire to feel seen. We're here for you.
 🦓 Ways to Connect:
• Join the conversation on social media using #FindYourRARE.• Share your reflections in the comments below—we'd love to hear what you're celebrating today, big or small.• Explore stories and insights from fellow zebras and let their story serve as your survival guide.
 
A Seat at the Table for Every Zebra 
Gratitude isn't about ignoring the complexities of life—it's about holding space for all of it. So today, we're thankful for you—for your courage, resilience, and willingness to make the invisible visible through sharing your story and showing up. You're part of a movement that's redefining how the world sees rare diseases, invisible illnesses, and mental health struggles. And for that, we'll always be grateful.
 🖤From our RARE. table to yours, Happy Thanksgiving, Herd. Here's to creating our own rules on gratitude and this RARE. life together—today and every day. 
Be heard🦓 drop a comment
What's one thing you're celebrating today? Share it below, big or small, and let's continue to have the hard conversations of a beautifully RARE. life. 🦓🖤 And don't forget to share your own strategies for redefining gratitude. Your insights could inspire others.
 
]]></description></item><item><title><![CDATA[Why I Call Our Community ‘The Herd’: The Power of Connection]]></title><link>https://findyourrare.com/blogs/rare-perspective/why-i-call-our-community-the-herd-the-power-of-connection</link><category><![CDATA[RARE. Perspective]]></category><sr:tags><![CDATA[blog, rare herd, the herd]]></sr:tags><dc:creator><![CDATA[kristine hoestermann]]></dc:creator><pubDate>Fri, 22 Nov 2024 16:16:37 +0000</pubDate><sr:image>https://cdn.shopify.com/s/files/1/0004/2513/2076/articles/blog-thumbnail.png?v=1732292198</sr:image><description><![CDATA[

What started as a slight health hiccup spiraled into a journey I never saw coming. A rare disease diagnosis turned my life upside down, forcing me to reevaluate every part of my world. In the blink of an eye, I went from living as the “old me” to grappling with a new reality filled with limitations, uncertainties, and an ongoing fight to adapt.
I still can’t wrap my head around how you can wake up one day sick—and never get better. It’s a truth that remains unfathomable, even six years later. But what hit me hardest wasn’t just the physical challenges of my diagnosis. It was the emotional toll. The grief of who I once was. The isolation. The invisibility.
Living with a rare disease doesn’t just impact your body; it weaves a complex emotional web that’s hard to untangle. Yet, amid all that, I found something extraordinary: the power of community.
Why the Zebra?
The zebra symbolizes rare disease awareness. At first glance, the connection might not be obvious, but it’s profound. In medical school, doctors are taught: “When you hear hoofbeats, think horses, not zebras.” It’s a reminder to focus on common diagnoses first.
For those of us living with rare diseases, we are the zebras. We are the rare diagnoses that aren’t considered first—or even second or third.
What makes zebras even more remarkable is their individuality. No two zebras have the same stripes, just as no two rare disease journeys are alike. Our differences make us unique. But here’s the twist: while zebras are independent creatures, they know there’s strength in numbers. They form herds to protect one another because there’s safety in the community.
This beautiful duality—distinct yet deeply connected—is why the zebra is so meaningful to the rare disease community.
Introducing the RARE. Herd
When I launched RARE. in 2019, I knew community had to be at its heart. The loneliness I felt after my diagnosis wasn’t just painful—it was suffocating. I didn’t want anyone else to feel like they were navigating the complexities of a rare disease alone.
So, I set out to create a space where people could feel seen, supported, and celebrated.
The name “RARE. Herd” came from this vision. It’s a nod to zebras traveling in herds and to our shared mission of being “heard” in a world that often overlooks us.
At the heart of the community is the fundamental principle of showing up, standing up, and speaking up. This creates a supportive environment that allows each of us to be ourselves, regardless of our circumstances. It provides the space and comfort of a support system where you can come as you are.
The Strength of the Herd
Being part of this community has shown me something remarkable: the power of collective voices. Individually, our experiences might feel small or unheard. But together? We amplify each other’s stories, creating a movement that demands attention. This community is such a force. It’s proof that while rare diseases may affect individuals, our collective strength can change the narrative and impact the way rare diseases and other invisible struggles are perceived.
What makes our herd truly special is:
• We celebrate individuality. Just like zebras, no two of us are the same. Our unique experiences are our superpowers.
• We embrace connection. Isolation is a heavy burden, but no one walks alone in the herd. We stand shoulder to shoulder, supporting one another through every challenge.
• We advocate for change. Our voices, united, are louder than ever. We fight for greater awareness, research, and support—not just for ourselves but for the millions of others living with rare diseases.
The RARE. The herd is more than a group of people; it’s a testament to the resilience, empathy, and strength of the community.
What the Herd Means to Me
If you asked me seven years ago how I got through the most challenging moments, I’d have one answer: community—the RARE. Herd has been my lifeline. It’s where I’ve found understanding, connection, and purpose.
When I think about the thousands of people who’ve joined this journey, I’m overwhelmed with gratitude. This isn’t just about me or my story—it’s about all of us—every voice in the RARE. Herd matters. Together, we’re making the invisible visible.
Turning awareness into action
Rare diseases aren’t as rare as you might think—1 in 10 Americans live with one. Yet, so many of us feel invisible, overlooked, and unsupported. That’s why the RARE. Herd exists to ensure no one faces this journey alone.
If you’re living with a rare disease, supporting someone who is or wants to make a difference, I invite you to join us. Together, we can raise awareness, advocate for change, and build a future where every rare voice is heard.
To My Herd
Thank you for your trust, love, and unwavering supporet. You are the reason I keep going. Let’s keep making noise because the world needs to hear us.
Join the RARE. Herd today. Let’s be heard. Together.
#MakingTheInvisibleVisible | #RAREHerd | #LiveLargeAndStayRARE
]]></description></item><item><title><![CDATA[When I Asked AI to Tell Me About Myself—And Why It Hit So Hard]]></title><link>https://findyourrare.com/blogs/rare-perspective/when-i-asked-ai-to-tell-me-about-myself-and-why-it-hit-so-hard</link><category><![CDATA[RARE. Perspective]]></category><sr:tags><![CDATA[ai, healing, healing journey, inner healing, reflection, self care, self love]]></sr:tags><dc:creator><![CDATA[kristine hoestermann]]></dc:creator><pubDate>Thu, 31 Oct 2024 14:30:22 +0000</pubDate><sr:image>https://cdn.shopify.com/s/files/1/0004/2513/2076/articles/AI-blog.png?v=1730385023</sr:image><description><![CDATA[
 

 
When I saw the prompt, “Based on what you know about me and what you can find on the internet, tell me something about myself that I may not know,” I immediately rolled my eyes. Could a robot tell me something meaningful? Yet, as days went by, I felt a growing curiosity. So, despite my skepticism, I gave in, sat down with AI, and typed in the prompt.
As an early user of ChatGPT, I fed it bits of my life—personal thoughts, rare disease advocacy experiences, professional challenges in mental health, and ambitions to make an impact. But what happened next was unexpected: the response didn’t feel robotic or disconnected. Instead, it felt like a surprisingly accurate mirror.
A Moment of Reflection—Through a Robot’s Eyes
The AI’s response floored me. Instead of summarizing my titles—a mental health professional, rare disease advocate, speaker, and podcast host—it painted an intricate picture of my journey and purpose. “You’ve woven all these aspects of yourself… into a life and career that’s anything but linear. It’s like you’ve created a tapestry where each thread isn’t just a role but a purpose-driven way to connect with and uplift others.” That image resonated deeply; it reframed my life not as a list of tasks but as a rhythm driving me.
Then, it hit me with a truth I hadn’t anticipated. The AI noted my “flaw”: “You hold yourself to a high standard—a nearly relentless drive to keep showing up for everyone else while putting your own needs on the back burner.” It called it a “healer’s flaw,” a phrase that felt both validating and, oddly enough, comforting. I hadn’t thought to apply the term to myself, but I recognized the truth in it immediately. That drive to show up for others, even when my tank is running on empty, was something I hadn’t fully acknowledged until now.
Real Talk with a Robot
I felt a strange mix of pride, validation, and sadness at that moment. A part of me was deeply moved that a machine could understand these hidden layers of my life, while another part was unsettled. Why did I feel so seen by a robot? Was I disconnected from myself? This response felt almost too real as if it exposed an undercurrent I’d managed to ignore in my quest to be “on” all the time. The AI’s reminder that “every superhero needs rest, too,” felt like a gentle nudge (or maybe a smack) I had long needed. Healing and self-care aren’t just for my clients, friends, or community—they’re for me, too.
So, now what? 

After rereading the response a dozen times, I realized I was obsessing, and I had a choice: allow this to live rent-free in my head or take control of my balance and protect my peace. Despite the loud thoughts telling me that there was no hope for me, I pulled out my journal and devised three ways to help me insource my validation and value my worth. The goal is to nurture myself and redirect some of that energy I often pour out to others in a flexible way that avoids self-punishment or shame. 
1. Make Time for Self-Reflection 
 I’ll carve out a few moments each day to reflect on how those close to me see my strengths and blind spots. Whether I write it down or talk it out with a friend, I want to see myself with the same compassion I offer others, reminding myself of the unique qualities that make me who I am. 
2. Celebrate Small Wins, Every Day 
 I’ll jot down a small win I’m proud of each day. It doesn’t have to be huge: showing up for a friend, practicing self-care, or giving myself a break all count. These little reminders help ground me in my journey, reminding me that I’m enough, just as I am. 
3. Release Perfection and Find peace 
 This week, I’m letting go of the relentless push for perfection. My drive to “do it all” is draining my peace, so I’ll make space for a gentler, more intentional approach. By honoring my limits without guilt, I hope to reconnect with a more sustainable balance that includes rest, joy, and gratitude.  
Embracing the Humanity of Healing
As strange as it felt to gain clarity from an AI, it reminded me that healing is an ongoing journey where each day is a new opportunity to realign and rediscover our strengths. AI may lack the emotional heart we carry as humans, but this experience showed me that even digital reflections can spark meaningful self-awareness.
This realization reinforced the truth I often encourage in my community of rare disease warriors, mental health advocates, and chronic illness supporters: Healing isn’t linear. We’re all a work in progress, and our mental and emotional well-being journey is as valid as anyone else’s. Taking time for self-care isn’t selfish; it’s essential. So, here’s to a little more patience, compassion, and the courage to embrace each moment as it comes. 
I have to know if you guys have done this; used AI to tell you about yourself or self-reflection exercises to gain new perspectives on yourself. If you could ask AI (or your inner voice) one question to reveal something meaningful about you, what would it be? Drop your thoughts or reflections in the comments—let’s open up a conversation around self-discovery, healing, and growth. We’re all on this journey together, and your insights could be just what someone else needs to read today!

Take action ⬇️
Here are a few prompts to try, whether you’re using AI, journaling, or reflecting solo:
• “Based on what you know about me, tell me something about myself that I may not see clearly.”
• “What are the strengths I bring to my relationships, and what’s one area I could nurture more?” 
• “If I could ask myself one piece of advice right now, what would it be?”
• “What’s one area where I might be holding myself to an unrealistic standard, and how could I start letting go of that?”
 Use these prompts to reflect, ground yourself, and reconnect with your journey in a fresh way. Self-discovery might sometimes feel unexpected or even strange, but the perspectives we gain from stepping back can be the most powerful. 
 

 
#HealingJourney #MentalHealthMatters #RareDiseaseWarrior #SelfCareMatters #MakingTheInvisibleVisible #RAREReal #CelebrateSmallWins]]></description></item><item><title><![CDATA[Made For This.]]></title><link>https://findyourrare.com/blogs/rare-perspective/made-for-this</link><category><![CDATA[RARE. Perspective]]></category><sr:tags><![CDATA[Find Your RARE., Find Your Voice, healing journey, mindset]]></sr:tags><dc:creator><![CDATA[kristine hoestermann]]></dc:creator><pubDate>Tue, 29 Oct 2024 03:45:39 +0000</pubDate><sr:image>https://cdn.shopify.com/s/files/1/0004/2513/2076/articles/10B8932B-C8C8-4DDA-929B-7F06F1721FB6.PNG?v=1596087797</sr:image><description><![CDATA[
An Open Letter to who I was and the human I am becoming,

I’m sorry but I don’t remember when you got sick, it was “gradually and then suddenly,” as Hemingway once said.  At first, it is just a small ache, a headache every now and then, an ache in the knee, tiredness, then exhaustion, skin rashes, tingling feeling in fingers and toes, motion sickness, sores on the inside of the mouth, and then all of a sudden it felt like you were housebound. I ignored you for so long. I should have stuck up for you. I didn’t know then but I was grieving and unaware of what was happening I lost you and our life. It was nearly two years before I realized what I had done and how I had silenced you. I guess only when what was gradually becomes sudden can you look around and feel the weight of losing yourself and the future you imagined for yourself.

To the woman, I used to be, so vibrant and full of life.  Nothing could stop me then, I was running circles around everyone else.  The drinking buddy, the party friend, the always up for a good time who used to be here is gone.  She used to be a great friend and so reliable.  But, it’s been four years now your memory is all but gone. Without giving all that you could, so many friends have been lost.  It’s hard to remember what fun is like anymore as I had to create a whole new life. You were adventurous and well-traveled. Life was your highway with no fears or regrets. The adventure has become making it from my bedroom to the living room; the couch now replaces my ideas of jet setting. 

To the woman, I used to be, so loving and nurturing.  Every fiber of my being was spent loving those around me.  The old me used to cooking for my spouse and planning special days. Our special notes and the home we made together, while both in existence, they are both far from the vision and dreams we built before. Even on the happiest of days, our body fights a ravaging battle leaving me defeated and unaware of my mental strength.
 
To the woman, I used to be, so sharp and unstoppable. I used to derive value from my work ethic and what I could produce.  And then I couldn’t get up for work.  Showering continues to be one of the greatest struggles.  Without significant help, I couldn't even wash my own hair or dress in the morning.  My life has given me a different path, but that new path has given back somethings I had never known before. 

To the woman I used to be, I do miss you terribly but I think there was no other way I could be. When I lost you I lost everything and all alone I felt how dark the inside of me could be. I wasn’t given an option but to live this storm and while the skies are still shades of gray I see myself slightly differently. Always fast to give love and take away from what it meant to be me; this rare life wasn’t a death sentence, it was allowed me to be set free and see the human I could be.
keeping owning your darkness &amp; loving your RARE.
🫶 i love you, -me]]></description></item><item><title><![CDATA[Failure Is A Prison Of Our Own Making]]></title><link>https://findyourrare.com/blogs/rare-perspective/failure-is-a-prison-of-our-own-making</link><category><![CDATA[RARE. Perspective]]></category><sr:tags><![CDATA[chronic illness, growth mindset, healing, healing journey, inner healing, mental health, mindset, rare disease]]></sr:tags><dc:creator><![CDATA[kristine hoestermann]]></dc:creator><pubDate>Tue, 29 Oct 2024 03:45:39 +0000</pubDate><sr:image>https://cdn.shopify.com/s/files/1/0004/2513/2076/articles/blog-thumb.png?v=1730391629</sr:image><description><![CDATA[

It’s no secret that we live in a society where failure isn’t accepted. We’re all expected to be successful, and if we fail, we are encouraged not to talk about it. But here’s an interesting question: Why do some people succeed when others don’t? What separates those who achieve from those who don’t achieve? The answer is the mindset.


Have you ever failed?
If the answer is yes, take a moment to think about how you handled that failure. What they don’t teach us in school is that failure is a part of life, and it’s inevitable—we all fail at some point or another. But failure isn’t a bad thing. What many are blind to is how failure can actually be a learning experience and an important step on the path to self-acceptance, success, and balance in their life. So what keeps us from failing, talking about our failures or accepting them? Failure often creates fear. Fear prevents us from taking risks and trying new things and limits us from opportunities. Fear essentially stunts growth and learning.
I failed for the first time at 28. And I still cringe just writing those words.  
When I was in my late twenties, failure was something that happened to other people. I had my life together; I knew what I wanted and how to get there. I was motivated, driven, and extremely hard working. I was living in DC, newly engaged, running marathons, and I adored my job – What else could I ask for? I was living the dream.
Fast forward to August 2016, when the onset of a very rare genetic condition began to show symptoms for the first time. I went from being healthy to losing my ability to function and complete everyday tasks. But that is not the failure; that was just genetics! The failure came about two years later when I was struggling at a new workplace and, despite all my best efforts, I seemed to be missing the expectations set for me. I didn’t know what to do, I have always been one to work hard and get results, but nothing was working.
They fired me.
I was devastated. I sulked for a while, wondering what was wrong with me (besides my disease). It was during that time that I realized, wow, I have never failed at anything in my life, and I don’t know how to handle it or what it said about me because failing meant I wasn’t good enough, right? That is the message I felt like I have received my whole life.
Shame. Shame. Shame.
A recent study shows I am not alone in this; the most common thought after failing is, “I’m not good enough,” which only propels the internal embarrassment and shame we carry daily. This shame that we internalize becomes a part of our narrative and shapes our decisions and behaviors.
The thought of not being good enough and the shame it carries led me to believe that “I needed to work harder on myself so that I wouldn’t fail again.” To some extent, that is correct that working hard leads to better results; if I am being honest, though, it was just a defense mechanism. It was my way of soothing my anxiety and creating a sense of control. I couldn’t have known then what losing that job would do for me, professionally and personally.
Comfortable is toxic &amp; toxic can be comfortable.
Looking back, I see how suppressed my creative side was at that job. I was a shell of myself, but it was comfortable –  I knew what to expect, even if it was toxic. I dreaded going to work and felt like I could fix it if I worked harder, but the harder I worked, the less power and worth I felt. But I stayed. Why? Well, looking back, I felt like leaving was a failure. If I left, that meant that I couldn’t do it. It was as if it was a reflection on me if I couldn’t make this toxic work environment work and failing was too uncomfortable of a place for me to be, so I stayed, and when they got the chance, they fired me. The very thing that pushed me to stay happened anyway; I failed.
The truth is that failing is uncomfortable but incredibly powerful.  
The fear of failing creates a prison that limits our ability to be creative, take chances on ourselves and reach new potential, but if you can fail, you are given the gift of realizing that your fear of failing was worse than the failure itself. We aren’t taught this, but we have the chance to change this now by choosing to normalize failures and talk about them without judging ourselves or fearing others will judge us. Failure cultivates creativity, learning, change, and growth. The key to failure is having a growth mindset and being open to the idea that failure doesn’t define who you are. Change and improvement come from the lessons learned from failing. You just have to be open to hearing them.
Over the last few years, I have sat with the discomfort of that failure, and the biggest takeaway was that failure is a necessary part of growth. If you have never failed, then maybe you should consider if you are taking enough risks. Are you living life in your comfort zone? Does your fear keep you hostage? If so, this is your sign to go out there and bravely fail for yourself. Failure may feel like the end of the world, but the reality is that failing at something important to us—whether it’s a job interview or learning a new skill — is just the first step toward something much better in life.
]]></description></item><item><title><![CDATA[36 and still growing up: lessons learned & wisdom earned]]></title><link>https://findyourrare.com/blogs/rare-perspective/36-and-still-growing-up-lessons-learned-wisdom-earned</link><category><![CDATA[RARE. Perspective]]></category><sr:tags><![CDATA[]]></sr:tags><dc:creator><![CDATA[kristine hoestermann]]></dc:creator><pubDate>Tue, 29 Oct 2024 03:45:38 +0000</pubDate><sr:image>https://cdn.shopify.com/s/files/1/0004/2513/2076/articles/36-growing-up.png?v=1718190685</sr:image><description><![CDATA[
As I celebrate another birthday, I find myself reflecting on the invaluable lessons that life has taught me over the years. With each passing year, I have grown in wisdom, resilience, and a deeper appreciation for the journey itself. From navigating the complexities of mental health, chronic illness and advocating for rare disease awareness, to the rollercoaster of entrepreneurship and holding a full time job as a therapist, my path has been filled with challenges, triumphs, and profound realizations. Here are 36 of the lessons I have learned and nuggets of wisdom I have earned.

1. It's Okay Not to Be Okay
Emotions are natural and ever-changing. Embrace how you feel in the present moment, without judgment or resistance. Allow yourself the space to experience the full spectrum of emotions, as they are neither good nor bad, but simply a part of the human experience. Denying or suppressing emotions can lead to further distress, while acknowledging and processing them can promote healing and growth.
2. Be Kind Anyway
Kindness is a strength, not a weakness. When faced with a choice, choose kindness every single time, even when it's challenging. Kindness has the power to transform anger, negativity, and misunderstanding into empathy, positivity, and connection. It takes courage to be kind in a world that often values selfishness, but the ripple effect of kindness can touch countless lives.
3. Everyone's Fighting a Battle
Just because someone's struggles may seem different from your own doesn't make their experiences any less valid or difficult. Honor and respect the unique challenges and battles that each person faces, without comparison or judgment. We all have our own journeys, and empathy and compassion can bridge the gaps between our diverse experiences.
4. Be Patient with Yourself and Others
Healing, learning, and building meaningful connections take time and patience. Progress is rarely linear, and setbacks are a natural process. Extend patience and grace to yourself and others as you navigate the complexities of life. Celebrate small wins along the way, and trust that growth and progress will unfold with perseverance and self-compassion.
5. Empathy is Built on Shared Emotions
You don't have to go through the exact same experiences as someone else to understand and connect with their emotions. Empathy is a bridge built on the shared human experience of emotions, allowing us to resonate with others' feelings, even if the circumstances differ. We can cultivate deeper empathy and understanding by tapping into our own emotional experiences.
6. Self-Care is Non-Negotiable
Taking care of yourself is essential, not optional. Make the conscious choice to prioritize your well-being by engaging in practices that nourish your mind, body, and soul. Whether it's seeking therapy, practicing mindfulness, journaling, or engaging in activities that bring you joy, self-care is a vital investment in your overall health and ability to show up fully for yourself and others.
7. Community is Everything
Find your tribe, the people who uplift, support, and understand you. Show up for them, stand up for them, and speak up for them. A strong, supportive community can provide a sense of belonging, validation, and empowerment. It takes a village to navigate life's challenges and celebrate its joys, so cherish and nurture the connections that sustain you.
8. Mental Health is Health
There is no separating mental and physical health; they are intrinsically intertwined. Prioritize your overall well-being by addressing both your mental and physical needs. Just as you would seek medical attention for a physical ailment, prioritize seeking support and care for your mental health, as it is equally vital to your overall well-being.
9. Vulnerability is a Superpower
Vulnerability is not a weakness but a strength that allows us to connect authentically with others and embrace our full humanity. Lean into vulnerability and own it, for it is through vulnerability that we unlock our greatest assets and potential for growth. When we have the courage to be vulnerable, we inspire others to do the same, creating a ripple effect of authenticity and connection.
10. Perfection is a Myth
Embrace imperfections, for they are what make us human. Striving for perfection can lead to unnecessary stress, self-criticism, and a constant sense of falling short. Instead, celebrate the beauty in imperfection, and find joy in the journey, with all its messy, imperfect moments. Perfection is an unattainable ideal, but embracing our flaws and growth opportunities can lead to a more fulfilling and authentic life.
11. Advocacy is Empowering
Standing up for others and giving them a voice is a powerful act of empowerment. Don't wait until an issue directly affects you to take a stand. Advocacy can break down barriers, challenge stigmas, and create positive change. By using your platform and privilege to amplify marginalized voices, you can be a catalyst for greater awareness, understanding, and inclusion.
12. Resilience is Built Over Time
Resilience is not an innate trait but a muscle that is strengthened through facing and overcoming challenges. Each obstacle we encounter and overcome contributes to our ability to bounce back and grow stronger. Embrace difficulties as opportunities for growth, and trust that the resilience you cultivate will serve you well in navigating future adversities.
13. Celebrate Small Wins
Progress is often made in small, incremental steps, and it's essential to acknowledge and celebrate these small wins along the way. Recognizing and appreciating the milestones, no matter how seemingly insignificant, can fuel motivation, boost confidence, and provide a sense of accomplishment that propels you forward on your journey.
14. "How Can I Help?"
Instead of immediately offering solutions or advice when someone shares their struggles, ask them how you can help or show up for them. This simple question demonstrates empathy and a willingness to understand their unique needs, preventing potential misunderstandings or assumptions. By actively listening and responding with compassion, you create a safe space for genuine connection and support.
15. You're Not Alone
Shared experiences can be one of the most powerful and validating forms of healing. Be brave enough to share your journey with others, and you may find solace in realizing that you are not alone in your struggles. Connecting with those who have walked similar paths can provide a sense of understanding, community, and hope.
16. Education is Key
Knowledge empowers and breaks down stigmas. Seek to educate yourself and others on topics related to mental health, rare diseases, or any other areas of interest or concern. Understanding leads to greater awareness, compassion, and the ability to make informed decisions and advocate for positive change.
17. Listen More
Healthy and effective communication starts with active listening. Make a conscious effort to listen more than you speak, truly hearing and understanding the perspectives of others. By creating space for others to share their stories and experiences, you cultivate empathy, build trust, and deepen connections.
18. Creativity Heals
Expressing yourself through creative outlets can be a powerful form of healing and self-discovery. Give yourself the space and freedom to explore your creative side, whether it's through art, writing, music, or any other medium that resonates with you. Creativity can provide a cathartic release, a means of self-expression, and a source of joy and fulfillment.
19. It's Okay if They Don't Understand
Not everyone will understand your thought processes, reasoning, or ideas, and that's okay. Your path is uniquely yours, and it's not for others to fully comprehend or validate. Trust in your own inner compass and stay true to your authentic self, even when faced with misunderstanding or criticism from others.
20. Perspective Changes Everything
Shifting your perspective can reveal new insights and possibilities. Step back and view situations from different angles, or metaphorically "hang upside down" to gain a fresh perspective. This practice can challenge assumptions, broaden your understanding, and open your mind to alternative solutions or approaches.
21. Take Your Seat; Don't Wait to Be Invited
Your voice is important and deserves to be heard. Don't wait for permission or an invitation to share your thoughts, experiences, and ideas. Claim your seat at the table and contribute your unique perspective with confidence and conviction, knowing that your contributions have value.
22. Healing Isn't Linear
The journey of healing is rarely a straight line. It's a process filled with ups and downs, setbacks, and breakthroughs. Embrace the messiness and non-linearity of healing, and trust that even when it feels like you're taking two steps back, you're still making progress in your own way and at your own pace.
23. Support Systems are Crucial
Surround yourself with a network of supportive individuals who uplift, encourage, and believe in you. A strong support system can provide a sense of belonging, validation, and accountability, helping you navigate life's challenges and celebrate your successes. Nurture these connections and don't be afraid to lean on your support system when you need it.
24. Authenticity Shines
Being true to yourself and embracing your authentic self is a powerful force that attracts genuine connections and opportunities. When you show up as your authentic self, without pretense or masks, you radiate a magnetic energy that resonates with others. Authenticity breeds trust, respect, and a deeper sense of fulfillment in your relationships and endeavors.
25. Keep Learning
Cultivate a mindset of curiosity and continuous learning. Stay open to gaining new knowledge, perspectives, and wisdom from those around you. Ask questions, seek out diverse experiences, and embrace opportunities for personal and professional growth. A commitment to lifelong learning will enrich your life and expand your horizons in ways you can't yet imagine.
26. Balance is Key
Finding harmony and balance in life's various demands is essential for overall well-being. Strive to create equilibrium between work, personal relationships, self-care, and other responsibilities. Prioritize what truly matters to you, and don't be afraid to set boundaries or make adjustments to maintain a healthy balance that supports your physical, mental, and emotional needs.
27. Your Values Should Be Lived, Not Strived For
Your behaviors and actions should reflect your core values and beliefs. Spend time understanding your internal compass and what truly matters to you, then align your daily choices and decisions with those values. By living in accordance with your values, you cultivate authenticity, integrity, and a sense of purpose that guides you through both internal and external challenges.
28. Prepared Adaptability
While it's important to have plans and goals, recognize that change is the only constant in life. Embrace a mindset of prepared adaptability, creating flexible plans that can accommodate unexpected shifts or obstacles. Focus on what you can control, and develop strategies for navigating change with resilience and minimal stress.
29. Stop Outsourcing Your Validation
Cultivate self-trust and self-belief by validating yourself from within. Stop seeking external validation or approval, and instead, become your own biggest supporter and cheerleader. Trust your instincts, celebrate your strengths, and have confidence in your abilities and worth, independent of others' opinions or judgments.
30. Boundaries Protect You
Healthy boundaries are essential for maintaining your well-being and preserving your energy and resources. It's your responsibility to communicate and enforce boundaries that align with your values and needs. Boundaries create necessary space and protect you from overextending yourself or compromising your integrity.
31. Happiness is Not a Destination
Happiness is a fleeting emotion, not a permanent state of being. Instead of chasing an elusive idea of happiness, strive for contentment and acceptance of the present moment. Allow feelings of happiness to come and go without clinging to them, and find joy in the journey itself, rather than waiting for a destination that may never arrive.
32. Share Your Gifts
You have unique talents, perspectives, and gifts to offer the world. Stop overthinking or doubting yourself, and courageously share your gifts with others. Your contributions have value, and by putting your work out into the world, you have the potential to inspire, uplift, and make a positive impact on those around you.
33. Contentment Comes Through Acceptance
Embrace who you are and where you are in life with acceptance and contentment. Rather than constantly striving for something different or "better," find peace in the present moment and appreciate the journey that has brought you to this point. Acceptance cultivates gratitude, reduces stress, and allows you to fully experience the beauty and richness of each phase of life.
34. There is No Finish Line
Don't get caught up in the pursuit of an elusive "finish line" or end goal, forgetting to enjoy the present moment. Life is an ongoing journey, filled with countless experiences, lessons, and opportunities for growth. Savor each step along the way, and resist the temptation to constantly look ahead, missing out on the richness of where you are right now.
35. Stop Blaming Yesterday's Version of Yourself
Release self-criticism and judgment towards your past self. With the wisdom and perspective you've gained, it's easy to look back and wish you had known or done things differently. However, blaming or berating your past self serves no purpose. Instead, extend compassion and understanding to your former self, recognizing that you were doing the best you could with the knowledge and resources available at the time. 
36. Nothing is Worth Your Peace
Prioritize your inner peace and well-being above all else. While challenges and conflicts are inevitable, never compromise your sense of peace or sacrifice your mental and emotional health for temporary gains or external validation. Cultivate practices that nurture your peace of mind, and have the courage to walk away from situations or relationships that consistently disrupt your inner calm

Chapter 36 begins...
Reflecting on these life lessons, I feel a deep sense of gratitude for the journey that has led me to this point. Each lesson, whether arising from struggle or success, has been a stepping stone toward greater self-awareness, empathy, and a stronger connection to my true self.
As I look ahead, I know there will be new challenges and chances for growth, but I carry these lessons with me as a source of strength and wisdom. They remind me to embrace vulnerability, to lead with kindness, to advocate for those whose voices may not be heard, and to prioritize my well-being without apology.

]]></description></item><item><title><![CDATA[Authenticity Over Perfection: Lessons From My First Speaking Engagement]]></title><link>https://findyourrare.com/blogs/rare-perspective/authenticity-over-perfection-lessons-from-my-first-speaking-engagement</link><category><![CDATA[RARE. Perspective]]></category><sr:tags><![CDATA[Anxiety, Authentic Self, Healing, mental health, Perfectionism]]></sr:tags><dc:creator><![CDATA[kristine hoestermann]]></dc:creator><pubDate>Tue, 29 Oct 2024 03:44:46 +0000</pubDate><sr:image>https://cdn.shopify.com/s/files/1/0004/2513/2076/articles/blog-thumb-nail.png?v=1730173852</sr:image><description><![CDATA[

 
 Public speaking is often dubbed the ultimate fear, right up there with spiders and accidentally texting your ex. It’s incredibly nerve-wracking when you’re stepping into a space like mental health, where vulnerability is both celebrated and judged. When I was invited to present at the Mental Health Marketing Conference, I initially felt a rush of excitement and pride. But as the event approached, excitement gave way to anxiety, and I found myself grappling with the fear of not being enough. I could feel the perfectionist in me clawing her way in, causing me to freeze and overthink. What if my playful, somewhat unconventional style wasn’t taken seriously? What if I failed to connect with the audience?
The Tug of War Between Perfection and Authenticity
As someone who thrives on creativity, I envisioned a presentation brimming with Bitmojis, Taylor Swift memes, and maybe even a dance party starter (because who doesn’t love a spontaneous Taylor dance party?). But as the conference approached, the little voice of doubt started to chime in. I began to question whether my vibrant approach might be seen as a little too… well unprofessional.
For a long time, we have been taught that vulnerability is a weakness. Sharing personal, genuine experiences publicly can feel like walking a tightrope, and I found myself spiraling. In my frantic quest for the perfect presentation, I lost sight of my true self—a colorful, innovative spirit who communicates best through humor and relatability. The internal struggle between pursuing perfection and staying true to who I am was very real. It ultimately came down to one question: Was it worth sacrificing my authentic self for what I thought was expected of me? Spoiler alert: the answer was a resounding no. 
Finding My Voice Amidst Anxiety
Fast forward to the day of the conference, and there I was, backstage, overwhelmed by a swirl of anxiety threatening to consume me. As the announcer unexpectedly went off-script to acknowledge the work I had done, it struck me: I wasn’t there to be everyone’s cup of tea; I was there to share my unique perspective and voice—flaws and all!
When I finally stepped onto that stage, I decided to lean into my quirks. Bitmojis? Check. Memes? Double check. And yes, I even launched the Taylor Swift dance party starter! At first, panic clawed at me, but then I remembered that authenticity often requires a sprinkle of vulnerability. It turns out that even in a professional setting, sometimes joy and humor are the best ways to connect.
The Power of Authenticity
As my presentation flowed, I could feel the energy in the room shift. Sure, some folks might have raised their eyebrows, but I caught a glimpse of an attendee whose eyes lit up with understanding. That moment was everything. It reminded me that being genuine is not just okay; it’s downright powerful.
As my presentation ended, only one thought was going through my head: in mental health tech, marketing, or therapy, authenticity isn’t just appreciated—it’s essential. As I have reflected over the last few weeks on the experience as a whole, here are my big four takeaways:
🔑 Embrace All That Makes You RARE.
 


Striving for Perfection vs. Authenticity: It’s all too easy to get caught in the perfection trap, losing touch with your true self. Embrace your quirks—they’re your superpower!

Owning Your Voice: Your message won’t resonate with everyone, and that’s perfectly fine. Stay true to yourself, and your authenticity will find its audience.

Managing Anxiety: Anxiety is a natural sidekick when stepping out of your comfort zone. Recognize it, embrace it, and then let it go. Authenticity can be your liberating superpower, and shared experiences such as anxiety can forge deep connections.

Genuineness is Enough: Perfection is overrated. Being real is more than sufficient; sometimes, it’s just what someone else needs to hear.

 
Own all that makes you... you 

Looking back on the entire experience, I’m immensely grateful. It reinforced the undeniable power of authenticity and encouraged me to embrace my true self in every facet of life. To anyone grappling with similar fears, remember: your voice matters! It’s perfectly okay to be different. Your beautifully RARE qualities are the very things that will leave a lasting impact, and your unique voice could inspire someone to embrace their own.
So, share your Bitmojis, sprinkle in those Taylor Swift memes, and kick off that dance party! Someone out there is waiting for your message, delivered in a way only you can.

Ready to Embrace Your RARE?
If you’ve ever felt caught between striving for perfection and being authentically yourself, you’re not alone. Let’s keep this conversation going— drop a comment about your experience with anxiety and authenticity. If this resonates with you let's connect and continue to build a community that celebrates being unapologetically ourselves. 💬✨
If you missed my session Leveraging Your Clinical Skills (or Department) to Increase Your Sales Funnel and Close Deals at the Mental Health Marketing Conference, click here for the session materials.]]></description></item><item><title><![CDATA[Jerry Williams & MSU]]></title><link>https://findyourrare.com/blogs/live-large-stay-rar/jerry-williams-msu</link><category><![CDATA[Live Large & Stay RARE.]]></category><sr:tags><![CDATA[]]></sr:tags><dc:creator><![CDATA[kristine hoestermann]]></dc:creator><pubDate>Wed, 01 Sep 2021 20:48:43 +0000</pubDate><sr:image></sr:image><description><![CDATA[Q1: I was diagnosed at age 27 with polymyositis, after a difficult three-year journey to get a diagnosis. My first diagnosis, after a 15 day hospital stay, was psychosomatic illness. I was discharged in a wheelchair, unable to walk, lift my arms, and in severe pain and I was told it was all in my head. Pain was my first symptom followed by muscle weakness and scarring skin rashes on my body and my scalp. I still didn’t have the ‘right” diagnosis though and it wasn’t until about 15 years later that my diagnosis was changed to Dermatomyositis. I am living with what we refer to as refractory dermatomyositis. I have tried all available treatments over the years and none have worked for me longterm.
 
Q2: Dermatomyositis (DM) is a rare, systemic autoimmune disease that can affect the muscles, heart, lungs, skin, gastrointestinal system, and other organ systems, and can be painful. It can also cause extensive fatigue and cognitive dysfunction (brain fog). DM affects more women than men, and it affects black women even more so. Skin rashes, if present, can help make a diagnosis easier, however, healthcare providers are not trained well enough to see them in people with melanin-rich skin. Interestingly, the name of the disease means muscle and skin inflammation, but some present with only lung disease, or only muscle, or only skin . . . some present with all. With dermatomyositis, they’re many known autoantibodies, each with its own indicators of potential progression, but there is still a lot of work and research to do with these. There is a subset of patients without a known autoantibody, like me. My antibody panel, and even my blood work, do not show any of the findings doctors look for, such as elevated muscle inflammatory markers. Each person with DM, even with the exact same autoantibodies, is different in how they present and how they respond to the off-label medications used to treat it. There is one medication, just recently approved by the FDA to treat dermatomyositis, an IVIG product, which does help some, but not all. Other treatments are often off-label immunosuppressive medications that put us at risk for infections. Over my time living with DM, I have been hospitalized more times than I can count, but I have been in ICU on a ventilator 3 times; twice due to meningitis and encephalitis, and another due to a bowel perforation leading to removal of half of my colon and several feet of intestine, which my doctors believe is likely caused by long term use of corticosteroids. I also experienced a rare side-effect to one medication leading to two strokes in 2016 over a two month period. I feel very lucky and blessed to be alive. Some of the things we have to do to help ourselves with DM: - Protect ourselves from the sun’s UV rays. Some must avoid the sun altogether, including the sun we get inside our homes, while in a car, at work, etc., as the sun’s UV rays can cause flares and rashes. Even fluorescent lighting can cause these exacerbations for some. Wearing sunblock, using umbrellas, wearing UV protected clothing and large brimmed hats, (don’t’ forget the sunglasses) are all helpful. - Exercise is an important treatment for myositis. Keeping our muscles moving, even when it’s painful, is important to prevent muscle atrophy and to keep compensatory muscles to prevent falls. We need to talk to our doctors and PT/OT teams to create a plan so that we don’t injure ourselves or overdo it with exercise. - Using assistive devices like canes, walkers, rollators, wheelchairs. I personally use a wheelchair or scooter for any long distances. At home I use walking sticks to move around. - Cancer screenings are important as DM may be associated with malignancy. - Find support! Myositis can be a very lonely disease and meeting others living with it is so valuable. - Finding a new normal and grieving the losses from DM can be extremely healthy. I have had to grieve over and over again for my losses, like the inability to walk without assistance, having to leave the workforce and go on disability, and many other things. - Advocating for ourselves is a must. Research is evolving in the myositis space and things that once were are no longer. When I was first diagnosed, I was told not to exercise, that it would further damage my muscles. Years later we now know this is not true and that exercise benefits myositis patients. The same is true for pain. There are specialists who still tell patients that pain is not a part of myositis. At MSU we are working to prove that pain is real with myositis so that we can work to manage the pain.
 
Q3: May is Myositis Awareness Month and we host an entire month of education, added support, fun activities for patients and caregivers, and more. We also host the Myositis Empower Walk, this year on October 2nd, in-person just outside of Las Vegas, and via interactive live stream. This was created in loving memory of Robert “Bob” Landman by his family to support the patient-centered work of Myositis Support and Understanding (MSU). The Landman family wants to prevent other families from having to go it alone. Bob passed away in 2015 due to complications of dermatomyositis, just before MSU was founded. He was misdiagnosed over and over and by the time he was diagnosed with DM, it was too late for any treatments to work. I am so thankful to the Landman family for sharing their journey, from their dads symptoms to diagnosis, and from his death to how they found MSU and found a passion in helping other families affected by myositis. The 3rd Annual Myositis Empower Walk is open to everyone and includes various activities leading up to the walk itself, right from home. This is our signature community-building and fundraising event.
 
Q4: Just because I can do something today doesn’t mean that I am cured or even feeling well, or that I will be able to do the same thing tomorrow. I often look “healthy” outside of my assistive devices, but inside I am hurting and my muscles are very weak. Dermatomyositis can be an Invisible illness to others so educating and sharing our experiences is important to help them to better understand.]]></description></item><item><title><![CDATA[An Endo Journey Guest Blog By Josie Cummings]]></title><link>https://findyourrare.com/blogs/live-large-stay-rar/an-endo-journey-guest-blog-by-josie-cummings</link><category><![CDATA[Live Large & Stay RARE.]]></category><sr:tags><![CDATA[blog, endo, endo awareness, guest blog, josie, pain]]></sr:tags><dc:creator><![CDATA[kristine hoestermann]]></dc:creator><pubDate>Wed, 07 Apr 2021 13:23:48 +0000</pubDate><sr:image>https://cdn.shopify.com/s/files/1/0004/2513/2076/articles/AN_ENDO_JOURNEY.png?v=1617801446</sr:image><description><![CDATA[

 
So many people do not understand what the medical term of endometriosis is so this is the medical explanation and the first time I’m talking about a small part of my story without going into to much detail :If you have someone struggling or dealing with a chronic illness or any illness in your life just being there is enough . Understanding that they have support is all they need.Endometriosis is a disorder that results in the endometrium, or tissue normally lining the inside of the uterus, to grow outside of the uterus and can lead to scar tissues or adhesions. It commonly affects the ovaries, fallopian tubes and tissue lining in the pelvis, and is often painful, especially during menstrual cycles. Fertility problems may develop. Treatments include hormonal birth control and/or surgery to remove scar tissue. Endo is an illness that is very different for each warrior. For me endo has effected my everyday life. When I started my journey it frustrated me at the mount of pain that I was experiencing and that no one believed  me. The only people at the time that believed in me was my family and my partner at the time. I truly cherish the people that were in my life at that point because it truly was the biggest struggle that not only effected my life but it effected there’s. Understanding that my struggle turned into there struggle and It was challenging for me to see my pain reflect onto them. This is something I felt that I had to change and I separated myself from many people that I loved because of my illness. When I finally got diagnosed I did not get the answers I thought I was going to achieve. I was in pain 100 percent of the time and  I couldn’t engage in daily life. It felt like my whole world fell down around me. I was an athlete and all I wanted to do was be apart of a team and do what I loved and I no longer could do that. I felt like my body was failing on me and I did not know what to do. So I pushed all my energy into school but I struggled for a lot of my high school years.  I was taking 22 pills a day trying to keep myself functioning and from falling apart. Many treatments did not have good results and left many in worse shape then when they started. After many treatments and feeling like I did not have a choice. I settled on a drug called lupron. Lupron is a form of chemotherapy to treat males with prostate cancer. I did 2 years worth of lupron treatments which made my hair fall out, increased weight gained and changed everything about me that I thought I new. ( I did this to decrease the scar tissue and tumors in my body)Fast forward to finding a new treatment, finding a doctor that beloved in me, three surgeries later, changing my diet to no dairy, eggs and red meat and getting into university. I was able to start to regain the life I once new when I was 13 years old. Pain decreased allowing me to gain much more of my life back. In the last 9 months I have been able to loose weight and mentally regain the person I thought I lost so many years ago. Looking at myself now and realizing that I still have bad days and understand that those bad days are ok and to honor myself for everything that my body has been through.Currently, I am on 2 pills a day, a patch and an IUD. I also am very aware about my diet and exercise. I am finishing university this year and looking into how I’m going to help the Medical system. Yes I am still sick, yes I have hard days, and yes I am still fighting but you gotta keep getting up and killing everyday no matter now much you might want to quit. Keep going ! I am so thankful for my family, friends and my partner that help me keep going everyday ! I am so very very thankful for you ! ]]></description></item><item><title><![CDATA[2020 A Very RARE. Year]]></title><link>https://findyourrare.com/blogs/live-large-stay-rar/2020-a-very-rare-year</link><category><![CDATA[Live Large & Stay RARE.]]></category><sr:tags><![CDATA[]]></sr:tags><dc:creator><![CDATA[kristine hoestermann]]></dc:creator><pubDate>Thu, 28 Jan 2021 21:17:21 +0000</pubDate><sr:image>https://cdn.shopify.com/s/files/1/0004/2513/2076/articles/2020_review.png?v=1611868642</sr:image><description><![CDATA[

We really can’t believe that 2020 is almost at a close. Not going to lie, we wished and hoped for this year to be over. This year has been one of the most trying times in history for every single one of us. The division amongst one another was tangible and the disruption of everyday life is still running rampant. 

There were so many times that we talked about throwing in the towel. Where we just weren’t sure if we could hold our heads above water anymore. So many times we felt defeated. Beat down. Even held down, despite some of our hardest efforts to accomplish what we set out to do. 

I think many of us are hoping that 2021 will be lighter, easier, and more gracious to us. To be honest we are trying not to put so much pressure on 2021 because lets face it, those are some pretty big shoes and expectations to fill!

As we sat down to look at what we were able to accomplish this year amongst one of the most trying years in history, we actually realized that we accomplished ALOT. More than we even realized. To date RARE. Is now in 45 states and 5 countries. We have released 25 podcast episodes since the Because We are Strong Podcast started in September. We created 465 products and a one of a kind accessible sweatshirt. And one of our biggest accomplishments has been the ability to donate over $4,000 dollars to nine different charities. Not going to lie, we needed these accomplishments. Sometimes when life is dark and you feel smothered by things you can’t control you lose site of what you have actually accomplished. 

It’s easy to do that. To lose sight. We realize now that we might not have accomplished what we have if we weren’t challenged the way we were this year. Now dont get us wrong, we would prefer to never have a year like this again ! But at least we are able to be grateful for what it has pushed us to do. 

At the end of the day and then end of this year we hope that you all are able to see what you have accomplished amongst the storm. Those are the accomplishments that mean the most, because to accomplish something when your weathered and beaten down is one of the greatest victories. The victories that leave you exhausted, beaten down, frustrated, and ready to quit, are the greatest ones because you realize that what almost killed you didnt. And through it all you still accomplished amazing things. 

Live large and Stay RARE. 
]]></description></item><item><title><![CDATA[September Awareness]]></title><link>https://findyourrare.com/blogs/live-large-stay-rar/september-awareness</link><category><![CDATA[Live Large & Stay RARE.]]></category><sr:tags><![CDATA[]]></sr:tags><dc:creator><![CDATA[kristine hoestermann]]></dc:creator><pubDate>Thu, 24 Sep 2020 13:50:05 +0000</pubDate><sr:image>https://cdn.shopify.com/s/files/1/0004/2513/2076/articles/Copy_of_Circular_Cutaways_Tumblr_Banner.png?v=1603258172</sr:image><description><![CDATA[
Were mixing it up a little bit and really want to start highlighting some amazing causes and awareness topics every month. The month of September we want to recognize four causes that we feel are incredibly important. Each month houses several awareness themes, so if there is one that is special to you that you want to see highlighted please don’t hesitate to reach out to us! 
 
For September we are recognizing PCOS, Childhood Cancer, Suicide Prevention and awareness, and Chronic Pain. Each cause has its own unique reason of importance that we hope to highlight and share with you all.
 
PCOS or Polycystic ovary syndrome. PCOS is a hormonal disorder common among women of reproductive age. Women with PCOS may have infrequent or prolonged menstrual periods or excess male hormone (androgen) levels. The ovaries may develop numerous small collections of fluid (follicles) and fail to regularly release eggs. This is a huge invisible struggle for many women. So many women are unaware they even have PCOS until they attempt to have children. Imagine being ready to have a child and finding out the reason you are having so many issues getting pregnant is because of something you didn’t even know you have. Aside from the physical affects of PCOS there are a lot of mental affects that women with PCOS deal with, especially those who are having trouble getting pregnant. PCOS is recognized by the color Teal. To learn more about PCOS please visit PCOS Challenge at
 
https://pcoschallenge.org/about-pcos-challenge/#:~:text=PCOS%20Challenge%3A%20The%20National%20Polycystic%20Ovary%20Syndrome%20Association%20is%20the,PCOS%20serving%20over%2052%2C000%20members.
 
Childhood Cancer affects families in a multitude of ways. Whether is through rare disease or a form of chronic illness, or a perfectly healthy child finding out they have cancer - childhood cancer does not discriminate. In 2018, an estimated 15,590 children were diagnosed with cancer in the United States. Everyday 43 kids are diagnosed with childhood cancer. That is 43 families and their lives EVERYDAY that are turned upside down. Childhood cancer survivors are twice as likely to suffer chronic health conditions. Despite all of these facts childhood cancer research receives just 4% of the annual budget from the National Cancer Institute. Childhood cancer awareness has an important place in our hearts because of our COO and her family. Her son Owen has a rare disease called Beckwith-Wiedemann Syndrome, which gives her son an increased risk of developing childhood cancer. To learn more about Childhood cancer and how you can help please visit Alex’s Lemonade Stand 
 
https://www.alexslemonade.org/childhood-cancer/about-childhood-cancer/facts
 
An often invisible struggle that we do not see until it is too late is suicide. Suicide is another area of life that isn’t recognized or talked about nearly enough. Suicide has the potential to affect everyone regardless of race, gender, age, or nationality. Suicide is something that isn’t talked about until it affects you directly and that needs to change. Maybe if the person who was struggling just had someone who was aware enough to start the conversation with them, they may have chosen differently. To learn more about suicide visit To Write Love on Her arms
 
https://twloha.com/learn/
 
Chronic Pain. A silent and very isolating struggle. One that you truly can’t understand unless you experience it. People who struggle with chronic pain are often not believed because they carry on with their daily lives. They do not have much of a choice. Chronic Pain is another cause near and dear to our hearts because our COO has struggled with it for years and will for the rest of her life. She has often said that it is one of the most frustrating chronic illnesses to have because people do not think it exists if they see you smiling and living. With more understanding and awareness we can learn the struggles of chronic pain and help those who deal with it on a daily basis. Chronic pain can also be linked to suicide because of how tormented people can become with crippling pain. To learn more about chronic pain please visit the U.S. Pain Foundation 
 
http://uspainfoundation.org/-


]]></description></item><item><title><![CDATA[What The Fork Is A Spoonie?]]></title><link>https://findyourrare.com/blogs/live-large-stay-rar/what-the-fork-is-a-spoonie</link><category><![CDATA[Live Large & Stay RARE.]]></category><sr:tags><![CDATA[]]></sr:tags><dc:creator><![CDATA[kristine hoestermann]]></dc:creator><pubDate>Wed, 26 Aug 2020 03:43:00 +0000</pubDate><sr:image>https://cdn.shopify.com/s/files/1/0004/2513/2076/articles/Screen_Shot_2020-08-25_at_11.48.15_PM.png?v=1598846023</sr:image><description><![CDATA[
The Spoon Theory by Christine Miserandino www.butyoudontlooksick.com
 
"My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing. As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know? I started to ramble on about pills, and aches and pains, but she kept pursuing and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick. As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try. At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands. I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted. Most people start the day with an unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control. She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become? I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a neverending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus. I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this. I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me. We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night. When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all. I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared” Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons". After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.” Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".
 
 
© 2003 by Christine Miserandino Butyoudontlooksick.com Feel free link to “The Spoon Theory” at www.butyoudontlooksick.com/the_spoon_theory - Thank you!]]></description></item><item><title><![CDATA[A RARE. Education]]></title><link>https://findyourrare.com/blogs/live-large-stay-rar/a-rare-education</link><category><![CDATA[Live Large & Stay RARE.]]></category><sr:tags><![CDATA[]]></sr:tags><dc:creator><![CDATA[kristine hoestermann]]></dc:creator><pubDate>Thu, 20 Aug 2020 19:15:00 +0000</pubDate><sr:image>https://cdn.shopify.com/s/files/1/0004/2513/2076/articles/Screen_Shot_2020-08-17_at_7.05.17_PM.png?v=1597950945</sr:image><description><![CDATA[Hi there &amp; Welcome to A RARE. Education;
I’m your host Kristine Hoestermann and I'm here to give you the inside scoop on RARE.s latest venture. In case you don’t know not only am I the founder and CEO of RARE I am also a clinical social worker in the District of Columbia specializing in school-aged social-emotional learning and behavior development. As we are heading into another school year I’ll be showing you how to apply the strategies that you need in order to make this coming school year a successful one.Each week, we’ll take a deep dive into topics such as creating structure, keeping consistency, task management, intrinsic based incentive systems, and social-emotional development. Each episode will arm you with the information you need to implement a system that works for you and your family. You’ll also get the chance to hear from guests who are teachers, counselors, speech pathologists, and occupational therapists. I hand-selected these guests because I know they will provide you with the answers you’re looking for when it comes to remote learning and student services.Each episode will be jammed packed with tools that you can implement right awayAs well as strategies you can use over time.Students and parents are faced with a huge mountain of challenges when it comes to virtual learning. I created this podcast and the accompanying resource center because it was clear to me that the system has failed families in response to this pandemic. The health threats of the COVID-19 virus has caused our society to unexpectedly jump into the world of remote learning and virtual existence. It sounds good in theory what our education system has failed to do is show us how to make a functional classroom at home and foster social-emotional and behavioral development while in isolation.As both a therapist and a RARE. advocate, I want to shed light on the invisible struggles that we are faced with and provide respite where I can. That’s why I created the “RARE. kinda education” A one-stop reliable and evidence-based resource center full of recommendations, tutorials and pre-made systems to help you create a successful classroom at home.In addition to the wide release content each week, here you will find three-tier options offering varying bonus episodes, tutorials, customizable resources &amp; more. Take a look around &amp; see if any match the needs of you &amp; your family.Regardless if you choose to join or take what you learn on the go I am here to help cause no one should have to figure it all out alone. See you Monday-kP.S. In case no one told you today, you are doing great!______________
Become a Patron!]]></description></item><item><title><![CDATA[Sidelined]]></title><link>https://findyourrare.com/blogs/live-large-stay-rar/sidelined</link><category><![CDATA[Live Large & Stay RARE.]]></category><sr:tags><![CDATA[]]></sr:tags><dc:creator><![CDATA[kristine hoestermann]]></dc:creator><pubDate>Thu, 16 Jul 2020 13:10:00 +0000</pubDate><sr:image>https://cdn.shopify.com/s/files/1/0004/2513/2076/articles/enough_blog_banner_1.png?v=1594921053</sr:image><description><![CDATA[


We all know what it's like to be sidelined in life. Sometimes it's money or losing a job, and now many are feeling the effects of COVID-19. It's a constant feeling of sitting in the passenger's seat of the car alternating between full speed and hitting the brakes for the people in the sick community. It's an isolating feeling when your sickness throws new things at you, be it a small flare-up or a bad day or getting booted off the playing field with a massive flare, a new medication with awful side effects, an injury, or something else. All invisible illnesses and rare diseases are unique, and with that comes different struggles and pains. It's an odd handful of painful fibromyalgia days, lousy stomach days, a day off of a medication that sends me into an emotional spiral, a debilitating dislocation/subluxation, horrible dizziness or nausea from POTS, or something of the sort. Some flares are only days while others and some result in weeks laid up in bed. It feels nearly impossible to keep my like on track. I continuously fall off the wagon, color me a three-time college dropout that's an unemployed adult with no driver's license.

Where I am right now is the result of the terminal tackle that sidelined me. Only a little more than a year ago, at seventeen, my entire life fell to pieces. Without warning in months, everything I had worked for ripped away from me, it was like watching a bomb explode in slow motion, and nobody in my life could do anything but watch. I had worked for years, putting forty plus hours a week into my training; on top of school, I attended dance class upon dance class. I put everything into dance; it was my safe space. In dance, my OCD and depression fell away; it was my safe place. Until it wasn't.



I vividly remember the day I got in my step dad's car while my dance class was still going on behind me, I didn't remember the past hour, or why I was even leaving early. The following week a similar experience occurred. I told my mom, "I don't feel up to conditioning today, I just need to go and be a part of the team." Not one to sit out, I pushed myself to participate. I woke up on the floor mid pushups with the music blaring, having passed out without my teacher noticing (the assumption I was taking a breaking). These memories play over in my mind as I contemplate how I got here. Shortly after these incidents, I had to quit dance. I had to forfeit my college plans and every dream I had of going pro. I missed my last dance showcase, the one where I should have been the show's star. Not only was I deprived of the chance to chase my dreams, but I lost many friends as well. So who was I? The consolation prize for my efforts a shackle attaching me to my bed. A combination of defeat, confusion, and no energy, my hope faded. A year later, I'm lucky enough to have a diagnosis and a family who helps support me and pays my doctor bills, but I don't know what I'm doing. I can't get a job or hold down community college classes, but I'm here. I'm sharing my story and trying. And sometimes, when you're sidelined, trying is all you can do.

keep dancing.
-Linds
]]></description></item><item><title><![CDATA[Where is your heart?]]></title><link>https://findyourrare.com/blogs/live-large-stay-rar/where-is-your-heart</link><category><![CDATA[Live Large & Stay RARE.]]></category><sr:tags><![CDATA[]]></sr:tags><dc:creator><![CDATA[kristine hoestermann]]></dc:creator><pubDate>Thu, 09 Jul 2020 10:19:34 +0000</pubDate><sr:image>https://cdn.shopify.com/s/files/1/0004/2513/2076/articles/Pink_Quote_Women_s_Equality_Instagram_Post.png?v=1594309324</sr:image><description><![CDATA[


Dedicated to those who stoke my fire - Thank you for continuing to remind me everyday why what I am doing is so important. Thank you for being my motivation
-Mom of a mountain mover


 
Something that I find incredibly difficult when it comes to Beckwith-Wiedemann Syndrome is figuring out other peoples reaction to Owen’s physical differences. You might wonder why I even care what others are thinking. Especially because I have always been someone that could care less what other people think of me. That all goes out the window when those opinions are directed at your child. I cant help but instantly feel rage creep up from my stomach when I see someone judge my son. It is one of the hardest things thus far that I have been faced with, while at the same time is my biggest motivation.
 
It is very difficult to figure out whether someone is staring at Owen because they are disgusted or because they are curious. I dont necessarily mind the stares if the intention behind them is innocent. You may think I am crazy for saying people could think nasty thoughts about a 2 year old, but I promise you they can. I have had plenty of nasty stares and ignorant comments directed towards him, which I wont even give credit to by repeating. 
 


Owen and his tongue at rest


 
When your motivation humbles you
 
There are many times that I get so caught up with everyday life and the stress it brings, that I sometimes forget what or who it is that motivates me. Yet there always seem to be moments that humble me and make me remember why I started this journey in the first place. I remembered my motivation really quickly while we were on vacation last week. My family and I went out to eat at an outdoor restaurant near the beach in South Carolina. The place was family friendly so it was perfect for us. Many of my siblings and I had our children with us and they were able to run around and play without judgmental looks - well sort of. 
 
Owen was being his usual personable self, going up to people, saying hi, and flashing his big smile at them (one of my favorite things about him). From afar, I saw him attempting to talk to a couple at a table. I then noticed the man he had gone up to start to mimic his tongue. I have seen this before and usually it is innocent. Most people think Owen is purposely sticking his tongue out and trying to play a game with them. This time, however, the man wasn’t sticking his tongue out. He was trying his hardest to make his tongue look like Owen’s looked. That was when I got up.
 


Doing his two favorite things - smiling and eating


 
Confirming what I already knew
 
As I got closer, it seemed as though my fear was confirmed. The man was making fun of Owen. If you know anything about me you know that I go for the jugular when it comes to my children. But in that moment, I had a decision to make. I could freak out and cause a scene and waste my breath on clearly an ignorant person, or I could take Owen by the hand and take him away from the situation. I chose to not waste my breath. Not usually the path I take, but nonetheless it was the better choice in this situation.
 
In that moment I realized that situations like that are exactly why I am doing what I am doing. Unfortunately people are ignorant. Some are ignorant because they don’t know and some are ignorant because that’s just who they are. It would be naive of me to think that everyone who looks at Owen can see beyond his physical differences. I know now that its not the case. So what I am choosing to do is use those shitty moments as fuel. Fuel that will continue to ignite and stoke a fire larger than any ever seen. 
 
You can take control with your reaction
 
You see, you have a choice to make in every situation and you have the ability to dictate the outcome based on your response. In that moment, I wanted nothing more then to humiliate the grown man who was shamefully making fun of my two year old son, but what would that have done? My silence and aggressive stare towards him spoke volumes. He heard my voice without me having to speak a word. My motivation was instantly propelled forward.
 
Now, I can’t promise that will be my go to reaction. Actually, I can promise that it most likely won’t be. I can also promise that no matter what ignorance Owen experiences, I will be there to guide him through it and to hopefully change peoples perspective. For their sake I hope their ignorance catches me on a good day !
 



 
Live Large and Stay RARE.-tt
]]></description></item><item><title><![CDATA[5 RARE. Products To Step Up Your Summer Game]]></title><link>https://findyourrare.com/blogs/live-large-stay-rar/5-rare-products-to-step-up-your-summer-game</link><category><![CDATA[Live Large & Stay RARE.]]></category><sr:tags><![CDATA[]]></sr:tags><dc:creator><![CDATA[Theresa Thomas]]></dc:creator><pubDate>Thu, 25 Jun 2020 12:32:00 +0000</pubDate><sr:image>https://cdn.shopify.com/s/files/1/0004/2513/2076/articles/1BC12015-5052-4A47-BA48-3C527AEB83A2.PNG?v=1593089190</sr:image><description><![CDATA[

So we know everyone has been cooped up and on lockdown because of COVID but you can still step up your summer game with 5 of our favorite RARE. Products from our 2020 Summer line. Trust us, we put a lot of love and attention into this line because let's face it, many of us put on some extra LBS during the quarantine. We always think its necessary to be comfortable in the skin your in, and while that isn’t always easy we sure as hell are going to help you try! Check out our 5 top-rated items from our 2020 Summer Line!
 


Scripted RARE. High waisted two-piece bathing suitThis wins our number 1 spot because it fits and flatters literally every body type! K and I are two totally different sizes and yet this looked great on us both! It allows you to be comfortable yet flatters your figure and gives you the confidence to strut your stuff in style!

Jump into Summer Scripted RARE. JumperThis jumper is one of our personal favorites because of its functionality. Like we said we are ALL about comfort and this offers the best of both worlds. It’s possible to be comfy and adorable all at the same time with very minimal effort. This jumper looks super cute styled with a pair of vans or chucks as well as with a pair of wedges. You can dress this up or dress this down. You can even wear it to the beach with flip flops. It has a super cute high neckline and the working drawstring hits right at the appropriate spot in the midsection. You do not want to wait to snag this up!

Carpe Diem Strappy TankWe chose this strappy tank as one of our next features because it is a fun spin on a classic tank top. It elevates your game with the strappy back detail. This is easily a signature piece that you could wear with a cute pair of high waisted jeans on a night out with your girlfriends.

Personalized Everywhere Floral Utility ToteOkay, so as women we all know that a good bag is essential to function every day. As a mom, I literally have everything but the kitchen sink in my purse. A good bag is even more essential if your making beach trips or summer trips in general. Our Utility tote boasts a bold colorful pattern and has so many pockets. There is more than enough room for everything you need on summer day trips.

Effortless Elegant One Piece Off the Shoulder Bathing SuitEvery woman needs a good one piece and let's face it one-pieces can be very tricky. I always had such a hard time finding a one-piece that was flattering, especially since I am tall. I always hated the fact that I didn’t feel attractive in a one-piece. Well, that has certainly changed. This one-piece is incredibly flattering and features a super cute ruffle that can be worn in a few different ways.

 
So whether you are someone who dresses up, dresses down, or puts comfort above all else we have one of everything that will work for you! 
 
 
]]></description></item><item><title><![CDATA[Ten Things You Didn't Know about the Brand]]></title><link>https://findyourrare.com/blogs/live-large-stay-rar/ten-things-you-didnt-know-about-the-brand</link><category><![CDATA[Live Large & Stay RARE.]]></category><sr:tags><![CDATA[]]></sr:tags><dc:creator><![CDATA[Theresa Thomas]]></dc:creator><pubDate>Thu, 18 Jun 2020 02:25:00 +0000</pubDate><sr:image>https://cdn.shopify.com/s/files/1/0004/2513/2076/articles/453B60E0-F0AE-47EE-AA65-2A1227CF2512.PNG?v=1592470938</sr:image><description><![CDATA[
If you have followed me for a while now, you most likely know that in January k, and I decided we were strong together, and I became the COO of RARE. An apparel and accessories brand that dedicates its platform to raising awareness for rare diseases and invisible illnesses. K started RARE. as a way to begin communicating and accepting her new life. We realized, however, that there are so many unique parts of RARE. that you probably did know. RARE. has meaning and intention throughout the RARE. and today, we wanted to let you in on ten things you may not know about our brand.
 

How did RARE. Get its name? When k's symptoms began back in 2016, she started to find her creative side. She was getting pretty good at it and decided to make a small shop to help keep her morale up at the time. It was named The Krafty Kousins and featured all custom made to order items. It wasn't until Kristine, and her wife got into a fight that RARE. in September of 2018, that RARE. was born. [Fun fact, k was only ever going to put it out as a season line! It was not until November of 2018 that she decided to move forward with RARE. as a business]

How/ Why did RARE. Start? RARE. It started as a way for K to have a safe place to go. At the age of 27, she began to experience the onset symptoms of her disease. She felt alone and isolated. She felt like there wasn't a space that she fit into, so she created one!
Where are the items from RARE. Made? Everything at RARE. is handmade by K and I. We do not outsource any of our items as of now. They are all made and packaged by us with love, sweat, and tears. [And maybe some alcoholic beverages on the side for the rougher days!]

Where is RARE. Located? RARE. operates in two different states. K runs from her home in Washington, DC (were hoping to change that), and I work from my home in Pennsylvania. We spend roughly 4-5 hours on the phone daily between texting, facetime, phone calls, and of course, Alexa drop-in. In constant communication, we make all our decisions together with conversation-starting before seven and at times way past midnight.
How did Kristine and I become business partners? The short answer? (the one that makes k cringe every time we say it) We met online! Insane, we know. I found RARE. And k through a hashtag I was searching. I reached out to her to work together and to help promote her brand because I strongly believed in its mission since it aligned with my mission so well. One thing leads to another, and a few months later, I was on her Verizon bill! [Fun Fact k has my original email to her from August 2019 hanging in a frame in the RARE. studio. A reminder that always makes us laugh when spotted]

Her Verizon bill?! What?!Yep! Her Verizon bill! K officially asked me to be her partner in January, not long after she offered to put me on her Verizon Plan. Without even discussing it with her wife, sorry, Carrie! K knew that we had a long way to go before we started making money and be able to pay ourselves however knew the work that we would have to put in, she felt one way she could help compensate me was to add our family to her business account. Mike and I went to our local Verizon store that day, and by nightfall, we were all one big family plan. The best part is this all happened before we met in person. Yep we know, we're borderline certifiably insane! [Fun Fact: the Verizon man who assisted us thought I was k's sister, and I had no problem making any of the transactions!]

What was it like when we finally met? Honestly, it felt like I already knew her. By the time we met, we had been talking every day and were planning Rare Disease Day for February. For me, I felt like I was meeting someone I had known for a long time. K, however, in her typical awkward fashion, was so anxious and nervous that she made her wife meet me at the door while she hid upstairs, her face beat red when she finally came downstairs.
What have we accomplished so far since starting to work together in January?Not to pat ourselves on the back or anything, but when we look back at the last four months and all of the hardships in the world and our lives, we wasted no time. For being only two people who jumped into business together, working in different states, merging two entities, and learning each other's work styles, we have to say we have accomplished more than we ever thought possible. In just the first month of joining forces, we planned a rare disease event in DC, created an ambassador program and onboarded 56 ambassadors, and revamped our social media platforms. We did this all while K. her rare disease in DC, and I manage Owen's rare disease in PA. We quickly knew that this was our destiny, and with that faith, we continued to hustle through and create more contacts and community. We can't wait to see what is in store of us, RARE. and our herd.
How do you come up with the designs on RARE.'s website?Honesty, through pure inspiration. Everything we do and create has meaning and intention. There is not a single design on the website that doesn't have some sort of a story behind it. That's what makes RARE. so special. There is the meaning behind every single piece we create. It has been amazing to see the inspiration that has come from other stories, our pain, and the strength that we have found in each other.
What is your shop with a purpose feature?Another massive accomplishment that K and I listed as a 2020 year goal was our shop, your purpose feature. We have always donated 15% of every sale to support the research and advancement in rare diseases. However, we wanted our customers to be able to choose where that 15% was going. To allow your purchase to have a voice and for your purpose and passions be known. That is where our shop your purpose feature comes in. At check out, customers can choose from a list of several different organizations and decide where that 15% from their purchase will go. We will continue to update the non-profits listed as we highlight different causes throughout the year. Don't hesitate if there is a passion you don't see listed, drop us a line and we will see if we can bring your passion to light. [Fun Fact In the first two weeks od June we have raised over 500$ for the seven non-profits that are currently listed to choose from]



We could go on all day about the crazy journey life has put us on, but it's Thursday almost the weekend and we want to get you back to your day :pHowever, we can't wait to continue to share with you the pieces that make RARE., our crazy partnership that turned into a beautiful friendship and the fantastic herd of people who we have found. RARE. has always been a place for k to go, now it's our place; we will continue to work to share this space with everyone while continuing to create change, grow awareness and make a difference in this world.
Comment below if there are any questions about the brand or our journeys (together and apart) that you want us to answer directly or upcoming blog ideas. We love hearing from you! Thank you for being here.
-xott&amp;k 
















]]></description></item><item><title><![CDATA[Will you I ever be enough?]]></title><link>https://findyourrare.com/blogs/live-large-stay-rar/will-you-ever-be-enough</link><category><![CDATA[Live Large & Stay RARE.]]></category><sr:tags><![CDATA[]]></sr:tags><dc:creator><![CDATA[Theresa Thomas]]></dc:creator><pubDate>Thu, 11 Jun 2020 06:56:00 +0000</pubDate><sr:image>https://cdn.shopify.com/s/files/1/0004/2513/2076/articles/define_enough.png?v=1591858580</sr:image><description><![CDATA[
 

In a world where hate seems to so easily seep out of people's souls and out of their skin, it is hard to remember that you are enough. It can be hard to remember that you and everything about you, is what makes you amazing. The differences in each and every one of us are what make the world an amazing place if we just allow each other to celebrate those differences. Those differences are what allows us to be greater than hate.
 
Differences aren’t easy but they are what make us unique. Our skin color, our hair, our personality, our thought process. All of those things make up who we each are as an individual and no one should be ashamed of the pieces that make them whole. We have the opportunity as a community of people to make a change in the world and we can only do that if we come together and love each other for our differences.
 

The skin you're in
 
 
You are no less of a person then I am because of the skin your in. Your value as a person doesn’t decrease if you were born with conditions that are otherwise deemed, “less then perfect”. We all have something we can take from each other and learn from if we just allow ourselves to listen. Listen to one another on both sides of the fence. There is value in every thought and conversation. There is so much we can learn from one another to make the world a better place for each and every one of us who are living in it.
 
I remember when Owen was born. I was so scared of how the world would look at him. What would he learn from the world, being a boy who was born physically different than the rest? I look back now and ask myself why did I let my brain go there? Why for a second did I think that the judgment of the world mattered? What I should have been thinking was what can the world learn from my son? And trust me there is a lot that can be learned.
 
You were born with value
 
Every day I look at Owen and see hope. I hope that as a community of blended different races and different abilities, we can see the value that each person plays in the world. I hope that we can look at one another and see the beauty in what makes us different, whether that be our skin color or like Owen, being born with a rare disease. 
 
Every single person has value no matter how they entered this world they entered the world. You and everything that makes you whole is ENOUGH. When we start as a community to value each and every individual, their life, and the way the universe made them, that is when we can all be greater than hate.
 

 //  ]]></description></item><item><title><![CDATA[Leave YOUR Mark]]></title><link>https://findyourrare.com/blogs/live-large-stay-rar/leave</link><category><![CDATA[Live Large & Stay RARE.]]></category><sr:tags><![CDATA[]]></sr:tags><dc:creator><![CDATA[Theresa Thomas]]></dc:creator><pubDate>Thu, 28 May 2020 22:51:00 +0000</pubDate><sr:image>https://cdn.shopify.com/s/files/1/0004/2513/2076/articles/E67C3A84-62BF-4AD2-9481-EBDF75979665.png?v=1590706618</sr:image><description><![CDATA[
It wasn’t until Owen was recently hospitalized that I realized how much of an impact he has had on people. Most of those people he has never even met. Choosing to share our family's story has turned into so much more than I expected. Sometimes it's overwhelming. Sometimes it’s stressful and quite honestly sometimes I wish I didn’t do it. But what I realized is, when times get hard for my family, that is when I really see the mark Owen is leaving in people's hearts. Although sharing our story can be hard and draining, I see the impact it is making. I see how helpful it is to others. Don’t get me wrong, I am in no way tooting my own horn. This isn’t about that at all. What it is about is the ability we all have to make an impact on others and to leave our mark, even when we never expected that was something we were capable of.
 
Leaving your mark usually means being uncomfortable
 
When I think about the impact our family's story has made on others in just one short year, I realize that every single person has the ability to create so much change for others. It’s not comfortable to share our story. A lot of times it is difficult. Sharing Owen’s smiles and laughs is the easy part. The hard part is sharing the struggles he goes through and the differences he has compared to other children. It’s hard as a mother to question if you are doing more harm to your child by putting him out there in front of the entire world. That question has been posed to me on numerous occasions. From the beginning, critics have always felt the need to make me feel like I was setting Owen up for destruction. Like somehow celebrating and highlighting the life and differences he has, in some way would draw negative attention to him.
 



 
Walking away doesn’t always mean walking backward
 
At some point in your life, you have to make a decision. You have to decide what is right in your heart. You have to decide what path is the right one for your family and loved ones. More often then not that path is not necessarily one you would have chosen. More often then not that path is treacherous. It has twists and turns and struggles you can't even imagine. That path most likely requires you to walk away from a life you once loved. A life that at the time you felt defined you. I have done that walk. I have walked away. Walking away from a life you once loved for one that comes with incredible uncertainty is extremely hard. I still struggle every day when I think about what my life used to look like. The life I had before my back surgeries. The life I had before Owen and his rare disease.
 
The unexpected and the feelings that come with it are OK
 
It is okay to feel those feelings. Those feelings don’t make you any less of a mother to mourn the life you once had. It makes you human. Your grieving a life you once had and you are allowed to do that. Grieving a life you used to have doesn’t mean you love your child any less. It doesn’t mean that you don’t still love the life you have now. What it means is that a deep part of yourself that you once loved and cherished is becoming someone else. Someone you didn’t expect. At some point, everyone goes through a crossroads in their life. It’s at that time that you have to decide how you are going to handle it. Will you succumb to the sadness of losing things about yourself that you loved so dearly? Or will you try and make the most of your situation and leave a mark or imprint in the hearts and lives of others?
 
What mark will you leave?
 
I have chosen to do my best to leave our mark. I have decided that although it's hard, God is leading my family to share our story. To share Owen’s life, his struggles with Beckwith-Wiedemann syndrome, as well as his triumphs. It’s not a road I would have chosen if you asked me ahead of time. Never in a million years would I have thought this is where I would be right now. But one thing is for sure. I would not change a single hair on my son's blonde little head. I love him more and more every day. He not only leaves an imprint on other's hearts with his story, but he leaves one in mine every day. He makes me so proud to be his mother and to know that he is helping bring hope to other BWS families makes the journey we are on so much easier. We decided how we are going to leave our mark. Now the question is, have you?
 
Live Large and Stay RARE.-tt
]]></description></item><item><title><![CDATA[A RARE. Herd - A community I never knew I needed.]]></title><link>https://findyourrare.com/blogs/live-large-stay-rar/a-rare-herd</link><category><![CDATA[Live Large & Stay RARE.]]></category><sr:tags><![CDATA[]]></sr:tags><dc:creator><![CDATA[kristine hoestermann]]></dc:creator><pubDate>Thu, 21 May 2020 17:33:00 +0000</pubDate><sr:image>https://cdn.shopify.com/s/files/1/0004/2513/2076/articles/41E7026E-2109-418C-9606-D1FD3A1B85D6.png?v=1590082111</sr:image><description><![CDATA[
This is a place to celebrate what makes you rare and share it with the world. This is our story. We embrace what makes us different and the challenges we overcome every day.
 
My journey to finding RARE. Began before I even knew what was happening. I wish I could say I went through all the stages and found the silver lining on the other side. But that's not my story. I am far from what one might call maintenance of my disease, and every day is a physical, emotional, and mental battle. I continue to struggle to accept the new version of myself and most days outright refuse to acknowledge my new limitations. From being a ridged planner always with a schedule and to-do list, I am not at the hands of a disease that barely has a name. Although challenging at times, I'm not angry, but four years later, I still am in disbelief. However, there are good things that have come out of this change. Over the last four years, I have learned so much about myself and the rare disease world, and through this journey, I continue to gain insight like never before. Being a part of this community has allowed me to see things I couldn't possibly see before living in the land of the sick as I like to call it. Among the most astonishing is how many people silently suffer from rare and invisible challenges. The realization so many are fighting a battle, no one else knows anything about sparked a fire within my soul to create and cultivate a safe, unique and, RARE. community. Wanting people from all different paths to feeling safe and welcome, the herd began to develop. So I hit the ground running, trying to create this space that is now known as the "the RARE. herd". 
 
 By definition, herd means to gather and move as a group. After doing my research on what it meant to be in the rare disease community, I learned the symbolic meaning of the zebra and why it was a staple; the zebra represents community, freedom, balance, and individualism. Wanting people from all different paths to feel safe and welcome, the herd began to develop. And today, I am more than honored to be apart of the most supportive, amazing herd. All of you. 
 
We are proof that there is power in numbers. The sense of community, blending of all types of humans and willingness to love the uniqueness of one another is truly a powerful thing. RARE. was initially started with one voice, my own, but has grown to a voice more powerful than I could have imagined. Our voices are growing louder together, and together, we will make a change.]]></description></item><item><title><![CDATA[You Should Go & Love Yourself]]></title><link>https://findyourrare.com/blogs/live-large-stay-rar/you-should-go-love-yourself</link><category><![CDATA[Live Large & Stay RARE.]]></category><sr:tags><![CDATA[]]></sr:tags><dc:creator><![CDATA[Theresa Thomas]]></dc:creator><pubDate>Thu, 30 Apr 2020 19:07:00 +0000</pubDate><sr:image></sr:image><description><![CDATA[
So I decided to follow up on my most recent blog post and talk about loving yourself. My last blog talked about the difficulties of blogging, mainly because of how people start to perceive you. Many of the comments on my last blog post referenced just that. So many bloggers and influencers are nervous about what people are going to think of them. Some even worried that they would be perceived as narcissistic because of selfies they post. I'm here to tell you to LOVE WHO YOU ARE!
 
Confidence vs Narcissism
 
Let's get something straight. There is a major difference between loving yourself and being IN LOVE with yourself. Let me explain. There is absolutely nothing wrong with loving yourself. You are allowed to love who you are. There is nothing wrong with taking a picture of yourself and loving the way you look in it. That is called CONFIDENCE. Admiring what makes you beautiful as a person inside AND OUT, in my opinion, shows emotional security. Loving yourself is not easy. You might not love yourself every day. But don't let someone else's negative opinion stop you from striving towards it. 
 



 
In today's world it is so easy NOT to love ourselves. There is always something you could pick apart about yourself no matter how confident you are. There are times when I love my body and times I wish I didn't have so many stretch marks on my stomach. You can always see the negative in something if you allow yourself to. Change your mode of thinking. Yes. I have so many stretch marks on my stomach that my belly looks like a dried-up raisin. Actually, my 4 year old described it as a dodgeball. Gotta love the honesty of children. I now choose to look at my stomach and see the reason it is that way. The reason is the two beautiful blonde boys that I wake up to everyday. I would take a dodgeball raisin belly any day if it meant having them as my children.
What is so wrong with looking at yourself and saying, "I look pretty damn good"? We live in a world where everyone strives to be so perfect, yet the minute someone accepts their imperfections, feels beautiful and shares it, we call them conceded, or self absorbed. What the hell is up with that?! Whatever happened to women acknowledging not only their own beauty, but the beauty of the women around them? We really need to get our shit together as a society and stop shaming the women who are brave enough to love themselves and to show it to the world.
 
Are you up for it?
 
I have a challenge for all of you. The next time a bad thought comes into your head about someone, immediately try and think of a way to compliment that person. Think of something that would build that person up and help them love themselves like they should. Part of the reason woman have such a hard time loving themselves is because women around them judge and belittle them. Let's knock that shit off. Let's be women who support each other.
 
So if you are becoming brave enough to love yourself regardless of your flaws I applaud you! Take that selfie and freaking LOVE YO SELF! Be proud of who you are and don't give a ish what someone else has to say, because chances are they are way further behind in the loving themselves department than you are...
 
Live Large &amp; Stay RARE.
-tt
 

 

// ]]></description></item><item><title><![CDATA[When Planning Fails]]></title><link>https://findyourrare.com/blogs/live-large-stay-rar/when-planning-fails</link><category><![CDATA[Live Large & Stay RARE.]]></category><sr:tags><![CDATA[]]></sr:tags><dc:creator><![CDATA[Theresa Thomas]]></dc:creator><pubDate>Thu, 23 Apr 2020 14:59:00 +0000</pubDate><sr:image>https://cdn.shopify.com/s/files/1/0004/2513/2076/articles/Screen_Shot_2020-04-23_at_6.50.35_AM.png?v=1587663392</sr:image><description><![CDATA[
Have you ever felt so frustrated with where you are supposed to be in life? With where your life is going? We live in a world where people try and plan EVERYTHING! Plan our days. Our nights. What we are going to eat. What we are going to wear. Plan meetings. Plan date nights. Decide when the right time to have children is. I'm not saying I am against planning, it helps to have an idea what direction you want your life to go. I am saying that you need to be prepared for the plan to fail, and sometimes fail miserably. What then will you do? What plans do you have in place for when planning fails?
 
Back up Plans for your Plans
 
 
This is a question I wish I reflected on before the failing of my "plan". Why? Because my life plan is nothing like I planned it to be! Ha! Life has a funny way of allowing you to think you have it all figured out, then WHAM! It flips you and your plan upside down and doesn't care what effect it has on you. If someone would have told me eight months ago that I would turn into a blogger I would have laughed. I thought I had everything figured out until my back issues crept up on me again. If you aren't up to date on my elderly spinal problems you can catch up here.
 
The twists and turns my life has taken have caused me to really evaluate things. I no longer am going to assume that because I have a plan in place that's what my life will amount to. The truth is, regardless of planning, we really have no idea what our life will become. You can literally change your path and course of direction by simply deciding to turn left instead of right! That's a powerful thought if you really sit down and think about it.
 
Remember who you are
 
 



 
If your life takes a turn you're not expecting, if you remain true to who you are, you will figure out what your path really is. Take me for instance. I still have no idea what my path is, but here are some things I do know. I am determined, a hard worker, and I can adapt if I allow myself too.
 
If I continue to keep those qualities, whatever unexpected turn my life goes down, it will shape my bigger picture for me. I am a firm believer that you have to be proactive when it comes to managing bumps in the road. Having three back surgeries before the age of 30 has taught me that being adaptable to change is an absolute must. I need to stay true to who I am and at the end of the day the change in my path won't matter. I'll get to the end goal, whatever that may be, whether I keep going straight, or I take an unexpected detour.
 
Gain control by Letting it go
 
So, for those of you who are struggling with where you are, just remember that every experience you have in life helps get you to where you need to be. We are not always meant to have control. Which is the WORST! I struggle with that so much, but the moment you accept you don't have control is when you actually do...
 
xx
-tt
 
 
 
 
]]></description></item><item><title><![CDATA[In Every Language No means No]]></title><link>https://findyourrare.com/blogs/live-large-stay-rar/in-every-language-no-means-no</link><category><![CDATA[Live Large & Stay RARE.]]></category><sr:tags><![CDATA[]]></sr:tags><dc:creator><![CDATA[Theresa Thomas]]></dc:creator><pubDate>Thu, 16 Apr 2020 13:10:00 +0000</pubDate><sr:image>https://cdn.shopify.com/s/files/1/0004/2513/2076/articles/Turquoise_and_Purple_Bordered_International_Women_s_Day_Instagram_Post_b5518ae0-5250-41c6-94cb-fb4f567696ae.png?v=1587043918</sr:image><description><![CDATA[

 

Scar, - noun
- a mark left on the skin; a lasting effect of grief, fear, or other emotion left on a person's character by - a traumatic experience.

 
Most people think that scars are what they can see. What they can touch. People don’t realize that there are many scars you can’t see. Scars of memories. Scars of abuse. Not every scar can be seen with the naked eye. Those are the most painful scars because people have a hard time believing they are even there. 
 
I’ve never openly spoken about my silent scars. The scars no one can see. I can count on one hand the number of people who know about them. It’s not easy to talk about scars that are so deep their invisible to the outside world. They're invisible to the people who love you most, yet their present every day for the person who carries them, much like the deep scars I carry on my back. My silent scars are just as deep and just as present. The only difference is I alone can see them.
 
A sudden silent attack
 
Scars like the ones I'm about to share are tricky. They have a funny way of sneaking up on you. You don’t get a say whether the horrible memory those scars keep will pop into your mind. That’s why silent scars are the worst kind. They are the kind that takes jumping over hurdles to conquer. They are the kind of scars that you feel you need to somehow explain for them to make sense to those who can't see them. I am here to tell you unless you have experienced sexual abuse, you will not be able to fully understand how those who have, react and handle them. I don't even fully understand some of my behavior and reactions to my trauma.
 
Abuse affects everyone differently. For those who have never experienced it please be thankful. You can tell who the people are that have never experienced abuse. They are the ones that can’t understand why someone would hold in a scar-like sexual abuse for so long and then “decide” to bring it up years after the fact. I envy those people. I envy their ignorance. Their ignorance means they never have had to bear one of the worst invisible scars you could ever have. Their ignorance is truly bliss.
 


What we bury remains alive
 
People who have been abused don't get a choice. They don’t get a say when the memories of their abuse creep into their consciousness. You live with those memories or should I say, nightmares, for life. They are buried in the darkest depth of your soul, yet those memories can rise quickly and fiercely to the forefront of your mind. They could be triggered by a smell, a sound, what someone around you is wearing, or what someone says. A simple look can unearth a horrible memory that you tried so hard to keep from defining you.
 
Everyone’s story is different so I can only speak to my own. I won't get into the details of my abuse because I have no desire to fully relive it. What I will tell you is that I encountered sexual abuse twice. Once when I was in grade school and once shortly after I graduated high school. It took me a very long time to realize none of what I experienced was my fault. Sounds crazy right? Thinking that you are at fault in some way. It is crazy. But that is where your mind goes, or at least where mine went. I kept trying to come up with a reason for why those things happened to me. It was as if giving the abuse a logical reason for happening would have helped me cope better. But it didn't. And there was no logical reason for my abuse.
 



 
When control is taken from you
 
When you are abused, the control you were used to having over the decisions you make, was stolen from you. I chose for years to bury it. I chose to survive and control my secret scars, which allowed me to take back the control that was taken from me more than once. The issue with burying sexual trauma is that it will come up later. Why is abuse as far as 18 years in my past coming to fruition in my marriage? Do you think I want it to? Do you think I want to be having these conversations with my husband? For me, I choose to do my best and not let my encounters with sexual abuse define me. That doesn’t mean I don’t carry those scars &amp; memories every day. That doesn’t mean they don’t cause issues in my marriage because my husband doesn’t finally understand. 
 
People who have never experienced abuse can’t understand why all of a sudden someone might bring abuse up. They must be lying right? They just need attention. Why would someone come out with abuse years later? As a victim, let me be the first to tell you, WE DON'T KNOW! That lack of control I was telling you about earlier? Welcome back. We do not have control over when our scars decide to resurface. We don't have full control over what aspects of the abuse we remember versus what we don't. The very nature of sexual abuse is the loss of control, or rather the fact that it is stolen from you. What people don't realize is that lack of control doesn't just relate to the physical aspect of abuse. Your lack of control over your emotions and how you process trauma was stolen from you.
 
Do people lie? Do people falsely accuse? Absolutely. I know that without a doubt. And that is a horrible thing to do to someone. But why is it that because people can’t understand the "why", that automatically makes the victims story questionable or somehow less authentic? Before you automatically question the authenticity of someone’s abuse, educate yourself on how people deal with trauma. Victims live with the memory of their abuse for the rest of their lives. It’s a scar that never fully heals. A scar that no matter how much you try to cover up, will always exist. It’s a part of that person. 
 
We don't want you to understand
 
As victims, we don’t want you to be able to understand our ordeal. To be able to fully understand, you would have had to be in our shoes. In the room where all control was taken from us. In the situation where we thought we knew the person we were looking at but they instead turned out to be someone, we couldn’t recognize. I would never wish it on anyone. Not even my worst enemy.
 
I want women like me to know that if they suffered abuse it was not their fault. I want them to know there are far too many people out there that know our struggle. To all the mothers who are raising boys, myself included; raise them to respect women and to cherish them as something special, not just something they can have their way with when it suits them. Raise them to care for women and love them for more than just their bodies. Teach them that women serve a much bigger purpose in the world than being a pretty face or having a sexy body. But most importantly raise them to understand that NO MEANS NO!
 
XOXO-tt
 



 
*If you or someone you know is looking for resources and help to deal with sexual assault please visit The National Sexual Violence Resource Center
 

// ]]></description></item><item><title><![CDATA[The Struggle to Move On.]]></title><link>https://findyourrare.com/blogs/live-large-stay-rar/the-struggle-to-move-on</link><category><![CDATA[Live Large & Stay RARE.]]></category><sr:tags><![CDATA[break up, find your rare, ownit, rare disease, share your rare, silence, story, struggle, the new me, this is rare]]></sr:tags><dc:creator><![CDATA[kristine hoestermann]]></dc:creator><pubDate>Thu, 09 Apr 2020 04:15:00 +0000</pubDate><sr:image>https://cdn.shopify.com/s/files/1/0004/2513/2076/articles/Blog_Header_page.png?v=1586421747</sr:image><description><![CDATA[
Who was I before this. by findyourrare
 
 
I spent 27 years with someone I loved. I adored who the human she had become over those 27 years. She had long, thick hair. The kind that looked good no matter how she did it. Her skin was smooth, and she was never sick. She could get ready in 10 minutes flat, hated to be late, had an excellent memory, and was a phenomenal athlete. She was giving and kind. She was loud and insecure but never tried to hurt anyone. She struggled with her weight even when she was 90 pounds. She always went with the flow. Down for a good time and never wanted to be a bother despite how she felt inside.
 
Life Happens.
 
She was a family girl traveling back and forth to see them for almost every event. She was patient even when mad. She was focused and determined to be the best therapist she could be, and I supported her ambition and drive; however, in August of 2016, I noticed a change in her. Though subtle, I knew this was the start of the end. I tried to ignore the signs and the pain, but the girl I knew and loved stopped coming home one day. The time we had together became limited. Until one day, I never saw her again. She never said goodbye or even let me know she was going to leave. It was easy to pretend that we hadn’t separated. She left things behind that made it feel like she was still there. I knew she wasn’t, but it became easy to pretend when everyone around me continued to act like we were together.
 
Lost in Silence.
 
The pretending that masked the pain began to grow tiring and made me feel invisible. It finally came to light that we separated and many were devastated and didn’t want to believe it, how can this be?! You guys looked fine. No one gave me space to feel our break up. They were blinded by their own grief. Countless times I would try to move on, only to be confronted with more pain and suffering. There were things we shared that I no longer could do, food that I no longer cared for, and being alone started to feel more comfortable than being in a crowd. I am more reserved now and extremely cautious. There is a burning feeling inside, anger, grief, and sadness flood me daily. After 27 years, you become comfortable with who you are, but I no longer take no comfort being trapped in the life we built together now that you are gone.
 
SETTING MYSELF FREE.
 
It beens 4 years since you left, I still struggle to know who I am. I don't know where I'm going but I know it's time to go. Forever a piece of me will always be with you. I can't hide anymore I need to tell our story, I need to let you go.
 
 
 
xx - k
]]></description></item><item><title><![CDATA[Autism - The Perfect Puzzle Piece]]></title><link>https://findyourrare.com/blogs/live-large-stay-rar/autism-the-perfect-puzzle-piece</link><category><![CDATA[Live Large & Stay RARE.]]></category><sr:tags><![CDATA[]]></sr:tags><dc:creator><![CDATA[Theresa Thomas]]></dc:creator><pubDate>Thu, 02 Apr 2020 03:03:00 +0000</pubDate><sr:image>https://cdn.shopify.com/s/files/1/0004/2513/2076/articles/Screen_Shot_2020-04-01_at_4.31.50_PM.png?v=1585796987</sr:image><description><![CDATA[
Autism Is not something Owen has, yet it is not foreign to my family. My husband works with autistic children and adults so it’s not something I am completely unfamiliar with. However, I didn’t gain a true appreciation for autism and the struggles that come with it until Owen was diagnosed with sensory defensive disorder. Sensory defensive disorder affects Owen in a lot of ways. He gets overwhelmed easily by certain things such as personal space, light touch, the inability to manage his frustrations, and the inability to regulate his body temperature. If we take him somewhere that has too many lights or sounds he has a meltdown. Of course, I didn’t learn any of this the easy way. I learned it all the hard way, by having him in situations that caused his meltdowns because at the time I didn’t know any better.
 
Children with autism can also have sensory issues. However, sensory issues are not the only struggles they have. Dealing with Owen’s meltdowns has given me a much different perspective on the battles mothers of autistic children face. Meltdowns are hard. They are exhausting. They are challenging, and honestly, they make you question if you know what the hell you're doing. I wouldn’t even say the meltdowns are the worst part. The worst part is people's reactions. People who have no idea your child isn’t throwing a fit because their a typical two-year-old, rather, they are completely melting down because they cannot regulate the input of stimulus they are receiving. They have no control over their outbursts.
 
Learning &amp; Connecting with others
 
One of the things I am most grateful for since starting my blog is the ability gives me to connect with people. Through my blog, I became connected with Bri. Bri is an adult with the same syndrome my son has (Beckwith-Wiedemann Syndrome). When I connected with her Owen was one year old. To be able to talk to an adult who has the same rare disease like my son is so comforting. I can see someone defy some of my deepest darkest fears that I have for my son. Connecting with her gives me hope. Bri and I met in person this past summer at a BWS conference and quickly became friends, which is why when her son was given a diagnosis of autism, I knew I wanted to do a blog with her about it.
 

 
I knew that Bri could give a first-hand account of the struggles that come with autism. A look into what a mother goes through. I decided to send her some questions with the hope that by sharing her family's story, someone may feel less alone. We want other families to know that it is okay to mourn the life you thought your child would have. The life that you pictured without their diagnosis. It is healthy and healing. Our hope is mothers will know that they are doing the best they can, and yes, you are doing more than enough!
 
XOXO -tt
 
When did you first start thinking Soren might have autism? What signs did he show?
 
I'd say his age was 2.5 when I accepted that he had autism, although I sensed his sensory sensitivity right away when he was born. He had a harder time breastfeeding. At the end of each day as an infant, he cried for hours and hours which a lot of people attributed to colic. I also attributed it to him being just overstimulated and needing to process all the stimuli that were overwhelming for him. As Soren grew into a young toddler, he had problems swallowing foods so we went through feeding therapy. He still only eats certain foods as his palette is just very sensitive. He also had delayed speech, so we started seeing a speech therapist when he was about 2. I didn't start thinking about autism until his speech therapist had been working with him for quite a few months and she noticed he had similarities with her other clients that had autism. His behaviors, according to our speech therapist, also aligned with some behaviors associated with autism. He is very routine and has a tough time with change and transitions. He notices when things are placed in different areas and often corrects it by placing them back to where they were original.
 
What avenues did you go down to try and find information about autism?
 
We used the government-funded Early On program - which is where we found his speech therapist. I also talked with his pediatrician and had him pre-screened at age 2, which was deemed low risk. We were referred to a food therapist from his pediatrician as well. Through Early-on we were linked with a team as he became 3 so we could have him tested educationally and get the best preschool placement for him. We had him undergo different tests with different specialists outside of our speech therapist. We were scheduled for his first IEP evaluation for March 17, 2020. Michigan closed schools on Friday, March 13th and with schools closed, Early On programming shut down as well. So, literally only a couple of days before his IEP evaluation, it was postponed indefinitely due to the COVID-19 shutdown. 
 
What are some of the daily struggles Soren has because of autism?
 
Verbal communication, however, I'm thankful he's great at communicating non-verbally. He's not afraid of grabbing my hand and showing me what he needs but he cannot verbalize what it is he needs or feels. This is hard because right now I know I'll never know if someone made him feel bad, sad, or hurt him if I'm not right there with him because he cannot tell me. 
 
What was the hardest part of receiving Soren’s autism diagnosis?
 
Our family had to mourn the idea of what he may be like as he grows up. I dealt with a lot of guilt and worried that I could have done something during my pregnancy that caused his autism. I worried if I was doing enough as a mom to aide him fully in his development. Mom's guilt is real. What I always try to tell myself is that I am doing plenty for my son and there's nothing I did that caused him to have autism. 
 
How does his autism affect your families day to day life?
 
We work hard to make each day into a stable routine that our son can expect. We do go outside the routine here and there but do so gently. There are certain parts to the day he can always expect to be there and happen. When things happen outside our family's control, it does cause for a tougher time with redirecting and transitioning him. Babysitters don't exist. We used to try to have high school babysitters, but it never worked out well. Even having adult babysitters that he's known his whole life watch him is very tough on him. My husband and I get very little time outside our home just the two of us. We started only having people watch him after we tucked him into bed for the night. This way he didn't know we weren't home and there was someone else in the house. It sounds strange, but it was the only thing that worked for a while so we could have our own time together outside the home. The people who have been able to watch him the best have been both our sets of parents. Right now with the COVID-19 social distancing - we have no one who can help or can and all his programming has shut down. 
 
What are you hoping the world learns from Soren’s story?
 
That you are not alone in your journey. That each child with autism is different. Just like those with BWS, autism is a spectrum. You are doing all you can to advocate and care for your child. Listen to your gut and your heart. You are your child's best and biggest advocate. I pushed for a food therapist because I was the ONLY one who noticed his struggle. Many people didn't agree with me and I had to push hard to get a referral for food therapy. Once in food therapy, the therapist told us that she was grateful our son was in therapy. She saw so many symptoms of silent acid reflux as well as developmental delays in terms of the way his tongue was supposed to work.
 
Why do you think awareness of autism is so important?
 
Awareness is important because it helps each family learn better techniques to help their child. It allows them to connect and bond with others out there going through a similar journey. Awareness helps teach our society more about autism and how the two can help others they may know or how to welcome and interact with those with autism. 
 
How does Soren’s autism affect you as a mother? Can you describe your worries and fears? Your joys? Struggles?
 
Before my son was born, I was told I was one of the most patient and loving people by many of my friends. I also worked with children with autism as a Community Living Support for 4 years in my 20s. So, I thought I had patience down. Once Soren was born, it tested my patience and love in a way I'd never experienced before. There's something different when it's your child and you can't clock in and then clock out and have only an 8 hours shift a day. It's 24/7! Needless to say, I failed in the patience department. A lot. I was so overwhelmed when he was first born and also had post-partum anxiety. I yelled locked myself in my bedroom closet away from my child for a moment's peace. Now that he is a toddler, I had to learn that Soren does better with gentle teaching and discipline (which honestly I did better with as a child too and as an adult). I have to be very calm when disciplining or teaching him. As someone who thought I was so great at being patient....being calm while doing so with my son was way different and harder! I worry I'm not doing enough, or that I don't know enough. I'm worried I will let my son down and others will be unkind to him and he will feel bad about himself. However, there are joys with autism. On Monday, March 30, he said a full phrase! It was incredible to hear him say full words in his sweet voice. I cheered him on and he kept repeating the phrase. I feel joy anytime I see him experiencing joy and feel joy when a developmental leap happens! 
 
What do you think would be helpful for mothers receiving an autism diagnosis for their child?
 
Know that it's okay to cry, feel upset, and even disappointed. You are allowed to have your own emotions about this whole diagnosis. Don't stress yourself out by googling. I have a generalized anxiety disorder and when I focus on news like this, I start to google crazy and it overwhelms me and feeds my anxiety. Find the support and resources that work best for you as a mother and for your child. Not every resource that is out there or support group for autism will be the best for what you need and that's okay. Find the places, groups, and people that are. Lastly, you are an incredible mother. You were chosen to be your child's mother for a reason and you are doing an incredible job. You also are a person outside of being a mom. It's okay to take time for yourself. It's okay to have work, a hobby, a passion outside of your child and it's also okay to have a hobby that includes your child's diagnosis!
 



]]></description></item><item><title><![CDATA[A Mom's Journey with Medical Marijuana]]></title><link>https://findyourrare.com/blogs/live-large-stay-rar/a-moms-journey-with-medical-marijuana</link><category><![CDATA[Live Large & Stay RARE.]]></category><sr:tags><![CDATA[]]></sr:tags><dc:creator><![CDATA[Theresa Thomas]]></dc:creator><pubDate>Thu, 02 Apr 2020 02:52:00 +0000</pubDate><sr:image>https://cdn.shopify.com/s/files/1/0004/2513/2076/articles/IMG_4317.JPG?v=1585796401</sr:image><description><![CDATA[
Several times I thought about writing a blog post on this. Each time I came close, I pulled away because I was unsure what kind of judgment and scrutiny I would receive. But the more I thought about it, I realized that writing a blog post on my medical marijuana journey may help someone. It may help those who are suffering needlessly in pain. Someone who may have thought about trying medical marijuana but because of the stigma and lack of support &amp; information, they decide against it.
 
Chronically getting on my nerves
 
I have not been shy when it comes to sharing my struggles with pain management. Since 2016, I have been trying to manage some of the worst nerve pain I have ever experienced, nerve pain that most people do not understand. I can't blame them, I didn't understand the severity of it until I suffered from it myself. It is something I wouldn't wish on my worst enemy.
 
My journey with my back surgeries as well as my chronic pain started in 2016. My chronic pain went uncontrolled until August of 2019 until one day I had enough. I cast my judgment aside and researched medical marijuana. Using medical marijuana is one of the best decisions I made for myself. I am not 100% pain-free but I am able to function and live this new life of pain the best way I know-how.
 
Putting myself and my pain first
 
When I decided to look into obtaining my medical marijuana card, I first needed to talk to my husband about it. That was not an easy conversation. He initially was not onboard AT ALL. He likes to say that he wasn’t being judgmental, but part of him was. I can't blame him. He had a lot of questions that I could not answer. Such as - are you going to be high taking care of our kids? How do they figure out your dose? Is there anything else you can try? Will you build up a tolerance and then need more to manage your pain? Will you become dependent on it? I didn’t have the answers he was seeking. All I knew was that I had literally tried every prescription medication under the sun and I was still suffering. I could not do it anymore.
 
Starting the process
 
I knew that if I was going to explore the marijuana route to manage my pain, I wanted to do it the right and legal way. For those of you who aren’t aware, there is a process you have to go through to get your card. They don’t hand them out like chocolate at a candy store. You need to register for your card, see a licensed marijuana provider, and bring all of your supporting documentation with you. The doctor you see then looks over everything and decides if you fall in one of the approved severe medical conditions. When I went to my appointment I had over three years worth of supporting documentation.
 
Up to this point, I had undergone extensive therapy and surgeries to try and control my pain. I had tried multiple nerve medications &amp; narcotics, most of which made me unable to function and take care of my children. I was constantly exhausted to the point where I could not keep my eyes open. To date, I have been put on Gabapentin, Lyrica, Ativan, Baclofen, Cymbalta, Tylenol #3, Trazodone, Gralise, Silenor, and countless other medications to try and manage my chronic pain. I have been on most narcotics you can think of including Dilaudid, which is a highly addictive and dangerous Opioid.
 
My husband came with me to my appointment because he had a ton of questions, as did I. We met with the licensed physician and went over my history and he felt that medical marijuana could help me and thankfully severe nerve damage and pain were on the medical marijuana treatment list. He gave me a list of dispensaries near me and told me I should receive my card in the mail in about 10 business days.
 

 
None of what I was prescribed helped my nerve pain, they knocked me out and made me sleep. None of what I was prescribed allowed me to successfully care for my children and it did not relieve my pain. So I stopped taking everything all together. Being a mother and caring for my children was my top priority, so I suffered in pain while doing so.
 
Changing the narrative
 
Our society has somehow conditioned us to think there is nothing wrong with a cabinet full of prescribed narcotics. As long as a physician has prescribed it, it must be safe and effective. That could not be further from the truth. Not only were NONE of my prescriptions effective, but most of them also have horrible and dangerous side effects. I had a phone conversation about my older sons IEP that I do not even remember it. That is a huge problem. I never once abused any of the medicines I was prescribed but being someone who is in pain every second of every day, I can see how someone would.
 
Cannabis, Nerves, and Uncertainty
 
When my card came in the mail I went to a dispensary. I am not going to lie, I was nervous and felt very out of place. I wasn’t quite sure what to ask for or what I was even looking for! The one thing I loved was the fact that they have a pharmacist on site. I was able to sit with them and go over my history and my pain level. They asked what medicines I have been on before and if they ever helped control my pain. I stressed to them the importance of being able to function and take care of my boys. That was and still is always my main concern.
 
After speaking with them for about a half-hour they gave me a few different options of things to try, along with a book that I could log my doses with. The book had a spot for me to track which type of marijuana I was using, how many doses I took, and what the effects were. I would not be being honest if I said I wasn’t nervous to use marijuana. It’s interesting when you think about it. Never was I nervous after a doctor's appointment when I was handed a script for a new med. I was never nervous to have a few extra glasses of wine to help numb my pain - yet we all know the road medicating with alcohol can lead you down. Yet, as I was leaving the dispensary I felt incredibly stressed out.
 
False Sense of Security
 
I was stressed out because I was in uncharted territory. I had no idea how marijuana was going to affect me. But then again, what is the difference between going home with a script from my doctor for a new nerve med or a new narcotic? Nothing! Except it was prescribed to me in a doctor's office. Every time I went home with a new script it was for medicine I had never tried before. Yet somehow I was not nervous how that new med would affect me. I wasn’t nervous to pop it any time during the day. Why do prescriptions give us such a false sense of security, especially when they can be so harmful and addicting?
 
Shredding the stigmas
 
Since starting on the medical marijuana program my pain is much more controlled. I can care for my children without falling asleep and I am in much less pain while doing so. Medical marijuana allows me to function much more appropriately than I did on Dilaudid or any of the other meds I took.
 



 
I want to shed light on the stigmas of marijuana users. People assume they're always getting high. That is not the case at all. I use marijuana every day and people would never know it. You would be shocked at the different types of people that come into the dispensary - businessmen and women, your normal every day looking mom, an adorable little old lady in a sweater she probably knitted herself. So many people are using it appropriately and effectively, they're just not talking about it.
 
I hope that with more education and more people talking about how helpful marijuana is, the pothead stigma that comes with it can be erased. There are so many benefits marijuana has for people who are suffering. There are even benefits for communities such as autism. No one should suffer when there is something that can help them. Something that can ease the suffering and still allow them to completely function and go about their everyday life the best they can.
 
Taking my life back
 
Marijuana has helped me get a part of my life back. Am I pain-free? No. I never will be. Permanent nerve damage is just that - permanent. But I can manage it much more effectively than before. I can take something that doesn’t give me any nasty side effects or put me at risk for drug abuse. I can take care of my children and I can function much more than I could before.
 





 
You would never judge someone who is on antidepressants, or who takes prescription medications for pain. So before you judge someone for using marijuana do the research. Look into the benefits vs the risks. Educate yourself! You will be surprised at what you discover!
 
Live LargerXOXO-tt
 
*For more information on medical marijuana watch here as Sarah-Jaana, a Cannabis educator talks about marijuana and its benefits.*If you or anyone you know have questions about medical marijuana you can contact Sarah-Jaana Patient Advocate &amp; Medical Cannabis EducatorEmail: Sjconsulting8@gmail.comIG - @sarahjaanamarijuana FB: www.facebook.com/SJCoachingandConsulting
]]></description></item><item><title><![CDATA[Finding RARE.]]></title><link>https://findyourrare.com/blogs/live-large-stay-rar/finding-rare</link><category><![CDATA[Live Large & Stay RARE.]]></category><sr:tags><![CDATA[]]></sr:tags><dc:creator><![CDATA[Carrie Hoestermann]]></dc:creator><pubDate>Thu, 26 Mar 2020 22:43:00 +0000</pubDate><sr:image>https://cdn.shopify.com/s/files/1/0004/2513/2076/articles/Screen_Shot_2019-12-04_at_5.13.52_PM.png?v=1585262676</sr:image><description><![CDATA[Since the onset of my symptoms in 2016 I have struggled to fit my rare into a box, I like things in separate containers (despite functionality) it keeps things neat, organized, everything has a place and most importantly it is predictable because it can be planned for. However, my RARE. has led me far away from anything I had planned into a world of unknown. I wish I could say that in the four years since my onset I sit here having gone through all the stages of grief all the way through acceptance to gratitude, but that's not my story. ]]></description></item><item><title><![CDATA[Decisions]]></title><link>https://findyourrare.com/blogs/live-large-stay-rar/decisions</link><category><![CDATA[Live Large & Stay RARE.]]></category><sr:tags><![CDATA[Blog, BWS, COVID-19]]></sr:tags><dc:creator><![CDATA[Theresa Thomas]]></dc:creator><pubDate>Thu, 19 Mar 2020 17:32:00 +0000</pubDate><sr:image>https://cdn.shopify.com/s/files/1/0004/2513/2076/articles/wordsmatter.png?v=1584639153</sr:image><description><![CDATA[
Have you ever had to try and make decisions based on something unknown? Sounds kind of impossible right? How could you possibly make an informed decision about something when you don’t have all the facts? You don’t have all the answers or information. Imagine how terrifying those decisions become when you're making them about your child. As a mother, you always want to make the best decisions possible for your children. Let me be real with you, the majority of the time I am not quite sure the decisions I make for Owen are the right ones. A lot of the decisions I make are based on what information is currently available, and that information is limited.
 
Uncharted Unknown Territories
 
When I talk about the lack of information on Beckwith-Wiedemann syndrome that is in no way discounting the tremendous work my son’s doctors have done in terms of his care. The Children’s Hospital of Philadelphia and their BWS research team are the best there is and I could not be more grateful to live where we do. But let's face it, they still don’t have all the answers. Owen’s syndrome was discovered in the 60’s so there is A LOT of work and research to still do. So if I go to Owen’s doctors and ask them a question that there is no research on yet, the answer is - no our research doesn’t show that.
 
For example, Owen gets constant chronic upper respiratory infections. He has been hospitalized for them several times, but right now research shows no correlation to BWS. Even though so many BWS mothers say that their child struggles with the same issues. We also have questioned behavioral issues related to Owen’s syndrome. Again, there is not enough research yet to suggest a correlation. There are so many unknown things that make managing and navigating his rare disease so difficult.
 






 
Why do we wait to be effected to care
 
I am normally not a nervous mother. I am usually very confident in the decisions I make for my children. But with Owen the tables have turned. When there are new outbreaks such as the COVID-19, I instantly feel stressed and overwhelmed. With how quickly Owen picks up an upper respiratory infection, the unknown of a new virus and its effects on him stress the hell out of me. It’s not just the unknown that bothers me, it’s all the efforts that are exhausted on trying to immediately figure out how to control and treat coronavirus. What about the over 7,000 rare diseases that need the same attention? Why does something have to kill people for there to be an urgent aggressive need to control and manage it?
 
I guess I just wish that those who struggle with silent illnesses and silent diseases got the attention they deserve. Why do they have to get incredibly sick first for people to care? I hope that with my voice and the voices of others we can change that. I don’t want other mothers to feel the stress and anxiety I feel when I have to make decisions for Owen that are blind. It is a horrible feeling. God forbid I make the wrong one, Owen is the one who has to pay the price and I am the one that has to live with the decision I made for him. Sit on that concept for a second, I’m sure it will make you uncomfortable.
 
Decisions &amp; their consequences
 
The finality of the decisions we make as parents is stressful. We try and make the best ones we can and I know they won’t always be the right ones. I know that as a parent, I am flawed and I will make mistakes. The difference is, those mistakes shouldn’t be ones that could cost my child their life. It sounds dramatic, but that is the reality of rare diseases and their unknowns. Sometimes the only way to find something out is to see the after-effects.
 
One thing that has been said a lot during this coronavirus outbreak is that only certain classes of people are at high risk for the virus. I hate it when I hear that. We say only has if it's supposed to bring us all comfort. But what about the PEOPLE that make up the “only”. People don’t seem to care about the “only” until they become one of them. Owen is one of those “only’s”. If Owen had COVID-19 it could very well be fatal. Because of his enlarged tongue, his airway is easily compromised. An illness like this for him could completely shut down his respiratory system. Owen does not even handle the common cold with ease. He was hospitalized last year when his cold turned into pneumonia and put him in respiratory distress. 
 
For the good of everyone
 
So before you judge a mother or anyone that is dealing with a rare disease, research what they are fighting. Try and understand their struggle. Learn about what they are going through. So many times mothers are called crazy when they speak up and advocate for their children. Why?! They are doing exactly what a mother is supposed to do! Try and understand why so many people are worrying about COVID-19, and why for the “only” people, social distancing is crucial.
 
 
🤟🏻-tt
 





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]]></description></item><item><title><![CDATA[Never Prepared..]]></title><link>https://findyourrare.com/blogs/live-large-stay-rar/never-prepared</link><category><![CDATA[Live Large & Stay RARE.]]></category><sr:tags><![CDATA[]]></sr:tags><dc:creator><![CDATA[Theresa Thomas]]></dc:creator><pubDate>Tue, 17 Mar 2020 18:40:00 +0000</pubDate><sr:image>https://cdn.shopify.com/s/files/1/0004/2513/2076/articles/IMG_3331.PNG?v=1584471204</sr:image><description><![CDATA[
A little over a year ago my family and I faced a situation that we never saw coming. A situation that statistically is very low and that "only" happens to medically compromised adults or children. You are never prepared for situations like the one we were in last January. You are never prepared to watch your child struggle and labor to breath. His eyes rolling in the back of his head when he wakes up coughing in his sleep. You are never prepared. Not then and not ever.
 
Last January Owen was 11 months old. I remember the winter being such a difficult time for him. Anytime he got a cold it would be really bad. He would have it for weeks and it almost always turned into a sinus infection, ear infection, or like last January, respiratory distress and pneumonia.
 
I constantly had him at the doctors, I kept telling them that he can't ride out colds like normal children. I just continued to be told that there is no research that shows that colds are worse for children with Beckwith-Wiedemann syndrome. Every time, I was told to let him ride it out and come back in a few weeks if it wasn't gone. I was ALWAYS back.
 
Owen - one of the "only"
 
If you are new to our family and our story you might not know that Owen was born with Beckwith-Wiedemann Syndrome, a rare genetic disease that causes him to be much larger than the average child. His rate of growth is affected and certain areas of his body. He also has an increased risk of developing cancer. You can read more about our journey with BWS here.
 
BWS also causes Owen's tongue to be extremely large. His tongue was so big when he was born that it obstructed his airway, causing issues with breathing and feeding. When he was 7 weeks old it was decided that he needed to undergo a tongue reduction surgery, where they removed over two inches of his tongue to help him safely breathe.
 


















 
Owen's tongue has since grown. It interferes with his airway and his ability to breath or clear things out of his lungs when he is sick. Whenever he gets even the common cold it more than likely ends with a hospital visit and or hospital stay. In January of last year, Owen went into respiratory distress and I was never prepared for it.
 
Owen had been sick for a few weeks. He was seen multiple times by pediatricians who all told me the same thing. It's a viral virus. There is not much they can do. Let him ride it out. So despite my frustration that is what we did. It only took about 12 hours for him to decline from viral cold to emergent hospitalization.
 
Always remembering Sunday
 
It was a Sunday. I was on call for work and was in all night. By the time I got home I had about an hour left before I needed to wake Owen up and take him to his routine cancer scans. I decided to stay awake and pour myself a cup of coffee. I smelled it and immediately felt better about the fact that I hadn't slept in over 24 hours. Coffee can do amazing things!
 
I was sitting sipping my coffee, when our yellow lab, Maci, started acting erratically. It was like she was trying to tell us something. Owen started to cough very loud and violently. So loud that he woke my husband up. We both went into his room and he was having trouble breathing. He was so congested. So much more than he was before we put him to bed. He started coughing again and wound up vomiting all over. My husband and I turned the light on in the bathroom and put him in the tub. It was then that I realized he needed to go to a hospital ASAP.
 
I'm not sure why I made the decision to drive him that day. Maybe it was panic, maybe it was exhaustion, or maybe it was survival mode. Either way I grabbed him, got his clothes on, and got him in the car. As I raced out of our driveway I started to think about where I would take him. In my mind I thought Children's Hospital of Philadelphia would be the best place. He goes there, all of his doctors are there, and his syndrome is known there. The problem was, CHOP would have taken at least 35 minutes and it didn't seem like he had 35 to spare.
 









 
I decided that I would go to the nearest hospital and then we would most likely get transferred to CHOP once they had Owen more stable. In hindsight I should have called an ambulance, but hind site is always 20/20. When I got to the hospital I came in and told them he was having a hard time breathing. When he finally got onto a pulse ox his blood oxygen level was in the 80's and his breathing was really labored. Normal is 95-100%, and they prefer babies to be in the 98% range. I knew just by looking at Owen that this was not good. When I looked at him he could barely keep his eyes open. I knew this was no longer "just a cold"
 
Every ounce of strength to fight
 
Owen was transported to CHOP because he was only 11 months old, needed to be on Bipap, and all of his specialists for BWS are there. The fight Owen gave the transport team was impressive but horrible to watch as a mother. Imagine watching your child who is so sick he can't even keep his eyes open, fight with every ounce of energy he has when the transport team tried to strap him down in the stretcher. He was 7 months old and it took two grown men to restrain him. I don't have a word that can accurately describe how watching that felt. There isn't any way to describe what it is like to watch your child fight so hard for something, all while knowing that fight won't change the outcome. Hopeless comes close, but I can promise you the feeling is much worse than hopelessness.
 




 




 
Owen's common cold turned into pneumonia which he could not tolerate. Thankfully over the next day he responded really well to breathing treatments, steroids, antibiotics, and IV fluids. They agreed that if he did not drop his oxygen levels while sleeping we could take him home. We luckily were able to go home on our second day in the hospital.
 
Going back in time for the future
 
There is a reason I decided to go back a year in time and re-live those awful two days. Those two days that felt like weeks. I relived it so that you can see what common colds and mild viruses do to children who are compromised. They don't just bounce back like a healthy child would. That is what makes this whole situation with COVID-19, terrifying for mothers like me. We know that a virus like this could kill our child. How do we know? Because we have lived similar situations.
 
I can assure you no one likes being "that" mom. The mom of a medically complex child who has to break out the hand sanitizer and the masks. It sucks being that mom. But if being "that mom" is what it takes to keep my child from getting sick, then nice to meet you my name is THATMOM.
 
Share the word not germs
 
What we are being asked to do right now is to band together for the good of everyone. Those categories of people who this virus can be deadly too are part of the everyone. It's our social responsibility to take proper measures to keep ourselves and others safe. Why? Because we don't live on this earth with just ourselves.
 
We share it. We share it with the healthy, the young, the sick, the poor, the elderly, the rare-disease fighters, the chronically ill. WE SHARE IT! So as the mother of a high-risk child please share the world with my family without sharing your germs. Stay inside. Wash your hands. Be smart. No life is worth the beer you would have had on Saint Patrick's day. Make decisions regarding those who can't help the category that they fall in. Think of those that are in the "only" category. One of those "only's" is my son, and he has a name. His name is Owen. Think of him.
 

 
🤟🏻 -tt




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]]></description></item><item><title><![CDATA[Trust The Process]]></title><link>https://findyourrare.com/blogs/live-large-stay-rar/trust-the-process</link><category><![CDATA[Live Large & Stay RARE.]]></category><sr:tags><![CDATA[]]></sr:tags><dc:creator><![CDATA[Theresa Thomas]]></dc:creator><pubDate>Sun, 08 Mar 2020 03:37:00 +0000</pubDate><sr:image>https://cdn.shopify.com/s/files/1/0004/2513/2076/articles/F9EF1F15-991E-4969-96E4-F3E318930EEE_27a5135b-579f-4c6c-b29c-b6d00da0e001.jpeg?v=1583638639</sr:image><description><![CDATA[
If you are anything like me, trusting the process can be really hard. Being at the bottom of the barrel in a family of 11 makes you want to control everything you can. Trusting the process means you HAVE NO CONTROL EVER! The lack of control that comes with trusting the process is terrifying and nerve wracking. I hate every part of it. However, I realized that in order to trust the process and achieve the greatness that you know you are capable of, means getting out of your own way. In my case that means letting go of control and trusting that I am going down the path that I am meant to go down.
 
A totally different life
 
My life is no where near where I thought it would be at this moment. If you would have asked me a year ago if this is where I would be - a blogger, a COO of a company, and hosting a massive rare disease event with MTV’s Teen Mom, I would have laughed at you.
 

 
This time a year ago I was working a hospital job I loved. A job that fulfilled everything I have ever wanted. I was helping people. Saving their lives. Making a difference. But I know now that God had different plans for me. Whether I liked it or not. Don’t get me wrong I mourn my career. I loved it even when the days were long. I worked so hard for it. There still will always be a hole in my heart when I think of my career. But like I said, control isn’t always up to us.
 
Get out of your own way
 
Sometimes we get in our own way. I am the queen of getting in my own way. Because like I said, I like to control as much as I possibly can. I swear that control stems from being number 8 of 11 children and having to guard my food from my savage siblings. Where I am at in my life right now is the most out of control I have ever felt. I became injured again at work, haven’t been able to go back, have a child with a rare syndrome that presents so many unknown factors, and I agreed to take on being the COO of a company before even meeting the person on the other end of the phone. WHAT AM I DOING ?!??!?!?
 
Risks are worth taking
 
Life is never without risks. You never truly know what the right decision is until you make it and see the affects of that decision. What do I see right now in front of me? OPPORTUNITY! Am I scared shitless? YES! It wouldn’t be a risk if I wasn’t. All I know is that right now amidst all the chaos and confusion I feel peace. I feel peace because my heart is exactly where it should be. I am striving toward making a better world for my son. If you don’t know much about me, you will quickly learn that my family - especially my children, are my driving force. NO ONE will get in the way of my goal to provide them with a world that accepts them for who they are - rare syndrome or not.
 

 
Create change for a reason
 
No one should have to go to a doctors appointment and be looked at by the physician like they have three heads. No one should have to TEACH physicians how to care for them. I should not have to hear “let me google that” by a doctor that I am coming to to care for my son. If I have learned anything in the past 12 months, it’s that things won’t be figured out for you. Things will NEVER change unless you use your voice to do so.
 
When I got hurt again at work and was faced with loosing my career, I was heart broken. I still am. But you know what isn’t broken? My voice. My loud, obnoxious, German Irish voice. That will never be broken. My back might be but my voice isn’t. You know who needs my voice the most? My children. My son. The 1 in 11,000 child who doctors need to google to figure out where to start when it comes to his care.
 
Trusting the process &amp; knowing your why
 
When I start to wonder where God is leading me I look at my children. I look at Owen. That curly blonde headed mess of a child. With a spicy attitude and sweet disposition. The boy who is to big for his age. The boys who’s tongue hangs out of his mouth and the child who has overcome so much in two short years. I look at his sweet face and remember that this is where God is leading me. I am this boys mother for a reason. He is mine - Beckwith-Wiedemann syndrome and all. And I will move heaven and earth for him. I will make change for him. I’m his mother and that is my path...
 

 
XOXOTheresa
 

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