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Shop the Lyme gift guide for apparel & accessories that spread hope & awareness! Click for more.

A Lyme Support & Awareness Gift Guide

Today I am beyond excited to share the creative work of some of the most fierce and lovely ladies I’ve been lucky enough to “meet” in the Lyme community. Their stories, talents, and vision all funnel toward the same positive message. And it is one of hope, courage, and compassion.

The wonder of the internet is that though I’ve never sat down and had coffee with any of these ladies, they’ve each had an impact on me. As they’ve shared their healing journeys and creative work, their strength and light have inspired and challenged me in some of the moments I needed it most. And I’m thrilled to share some love for them and their amazing talent here in this Lyme gift guide!

I’ve asked each of them to share a look at what led them to create their pieces, so enjoy hearing from the creators themselves!

Lauren Lovejoy
Lyme Warrior

Lyme Warrior Lyme Won't Sink Me V Neck and Warrior Bracelet

Lyme Warrior is a group of volunteers raising funds for Lyme research. With Lyme Disease being widely disregarded by the medical field, it is up to us to find a cure. It is one thing to fight for what’s right, but it takes amazing people to fight for what’s right while fighting Lyme.

You can find the Lyme Warrior shop here!

Melissa Cox
Lyme Don’t Kill My Vibe

Lyme Don't Kill My Vibe Unisex Tee and Flowy Yoga Tank

As an extension of my blog, Lipstick Warpaint, I created #LymeDontKillMyVibe, a hashtag primarily used on Instagram to spread positivity and awareness surrounding Lyme and associated conditions. The original design + slogan was created in 2014 almost 1 year after I was diagnosed with Lyme. At that time, there were very limited Lyme awareness apparel options that felt truly empowering.

I’m a huge hip hop fan and the slogan just came to me one day while listening to Kendrick Lamar’s “B*tch Don’t Kill My Vibe” back in 2013. It became a near-daily mantra, and one day I decided THIS needs to be a thing. I now have a second edition design which was created in December 2016 with the help of my Lyme fightin’ entrepreneur friend Elise Graham. What I love most about Lyme Don’t Kill My Vibe is it encompasses both strength and community. There are over 25,000 posts on Instagram with the hashtag alone, and it feels like such a positive step toward reclaiming what healing means.

You can purchase them (with new items being added this summer!) at Lipstickwarpaint.org/shop or find me on Etsy

Kerissa B.
Tx Stitch

Lyme Disease Sucks Pin by TX Stitch

I never really felt like I was a creative person before Lyme. There’s something about being forced to be in bed that made my hands feel idle. I started cross stitching and created an Etsy shop and slowly expanded to have exactly 1 patch and 1 pin. I wanted to create something Lyme related that was simple but really told people that it’s not a great thing to have. Thus, the pin was born.

Kacie Fleming
Katya Valera Jewelry

Katya Valera Jewelry Rising Above Lyme Bar Necklace & Frame Necklace Collection

I’d been a fan of Kami’s RAL (Rising Above Lyme) phrase and shirt line since she first released the shirts a while back. Being the spontaneous creative that I am, the idea of collaborating with her for some RAL jewelry flashed through my brain one day, and I jumped right in and contacted her with my idea. Thankfully she loved it, and thus began a good couple months of planning and work!

Originally I envisioned frame necklaces that feature text images designed by Kami, and then I developed the idea for a piece that visually represents the phrase—the bar necklace. We then added a minimalist, very lime wedge-style piece, and the collection was complete. I’m so grateful to have gotten to work with Kami on this collection and to be able to help inspire and encourage others who are on a similar journey.

Shop Katya Valera here!

Chloe O’Neill
More Than Lyme

More Than Lyme Keep on Keepin' On Tee and Canvas Tote

No matter where you are right now, know that you are enough. No matter how scared you feel, know that you are not alone. No matter how often you feel like giving up, remember that you are strong enough to have made it this far, so why not choose to keep on keepin’ on?

Why not take all the adventures you’ve gone on, mishaps you’ve had, and pain you endured, and use them to create a full and happy life for yourself? A life where no matter how hard things have been, or are going to be, you know that tomorrow will be worth it. You know that you are worth it.

You know that you are enough.

Regardless of where you’re at, what you’re doing, or how you feel, remember that you’re more than your doubts, your fears, and illness that hides beneath your skin.

Click to shop MTL! A code that people can use for 15% off is SHAREYOURSTORY. 

Kami Lingren
Rising Above Lyme

Rising Above Lyme Tee and Graceful & Fierce Tank from Living Grace Shop. Click to shop!

Hey, that’s me! 😉 Last year I had the phrase “Rising Above Lyme” on repeat in the back of my mind. Partly because I think it’s so easy to find ourselves consumed by our health challenges. And understandably so. But I didn’t want my story to be solely defined as “sick”. So I created a shirt that would remind me that my life’s purpose and worth are not defined by my circumstances. Rather, by my conscious effort to engage my life in spite of them. And I wanted the message to inspire and validate others who were fiercely healing as well!

This year I added the Graceful and Fierce design, which I feel resonates so deeply with the essence I strive for. To fiercely love, heal, advocate and show compassion, but to also be gentle with ourselves and others as we live, learn and heal. And what a beautiful thing it is to embrace both in our lives.

You can find the entire Living Grace collection hereAnd use code RISING this month for 15% off your order!

Have you been dreaming of creating something to help raise awareness and hope? I hope this Lyme gift guide inspires you to embrace that dream and make it a reality!

Lyme Creatives Gift Guide for spreading Lyme disease awareness and support! Click to shop items created BY women healing from Lyme FOR others also healing!
Lyme Awareness Wear: Gifts and Apparel for those healing from Lyme Disease. Click to check out all of these amazing creatives!

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For those struggling with depression, healing from abuse, anxiety, or living with a chronic illness - the idea of hope can sometimes feel disconnected from our reality. Matt Pappas joins me in this episode to discuss his own journey with hope. What's helped him tangibly engage and define his personal sense of hope and encouragement for listeners who may WANT to hope, but don't know where to start. Click here to give it a listen!

Thoughts on Hope: A Podcast Interview with Matt Pappas

*This post may contain affiliate links, which means when you purchase an item through one of my links I may receive a small commission. Thanks for helping keep this blog going!

It’s been a few months since I launched with my first podcast episode for my channel, Grit & Grace and I loved hearing your feedback and connecting with you all. After that episode I went radio silent as it’s been a difficult few months of juggling treatment and work from home…But I’m finally back with our next episode!

Today’s Guest: Matt Pappas

I recently chatted with Matt from Surviving My Past about the reality and challenges of the word “hope”.  He is active in the online community, striving to bring encouragement to others who share his past of childhood abuse as well as those who battle anxiety, PTSD, and illness.

It can spark a variety of emotions in us when we hear or talk about the idea of hope, can’t it? Engaging hope when you feel hopeless can bring pain or discouragement. We may feel “less than” for not being able to grasp it in way others want us to or how we think it should manifest. All the while, others seem to keep the flame of hope burning inside, despite the struggle of pain, depression, or loss.

But wherever you’re sitting on this topic, you’re welcome here.

In this episode, Matt shares honestly on the ways he views hope, as well as the real challenges that both abuse survivors and the chronically ill face. It’s an insightful conversation, not a head-in-the-clouds message on hope. This is all about grassroots hope, real experiences, and encouragement for the struggling heart.

How do you engage hope? Let us know in the comments!

To connect with Matt more visit his blog at survivingmypast.net and be sure to download your FREE copy of his new book: Surviving Grief.

You can find Matt on the following social media channels:
Twitter: twitter.com/survivingmypast
Facebook: www.facebook.com/survivingmypast
Instagram: www.instagram.com/survivingmypast/

And be sure to subscribe to his podcast!

Want to listen to the episode on Marriage in Chronic Illness? Click here!


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If you're thinking of ways to work from home while chronically ill, Ivy's story of starting her own business is a great place to start! She shares how she started a business that worked for HER.

Behind the Maker: An interview with Ivy Cirillo

Every time the week comes for this series, I feel so much anticipation. I have so much excitement to share the talent and creations of these amazing humans AND I always love how inspiring their stories are.

It takes guts and grace to make it through each day with chronic illness. And I know that it takes a whole different level of drive, determination, and heart to work from home. And these ladies WORK IT. They have repeatedly left me amazed at what they create!

Today’s guest is Ivy Cirillo from the Perfectly Ambitious blog. She is such a talented designer and I can’t wait to introduce her and her creations with you!

A little intro from Ivy:

I hate talking about myself, but here it goes! I’m a 20 something, military spouse, spoonie, blogger, artist, graphic designer, and (soon to be) author! I’m a complete Taurus and I spoil those that I love. More specifically, my husband and our three fur babies 🙂

Biggest dream: Honestly, my dreams have changed a lot and I suspect that they’ll change again in the future. However, at this point in time, my biggest dream is to become a successful published author. Overall though, I just want to find my own success and embrace it!

Current binge-worthy TV show: This is a hard one! Being home-bound, I’m currently caught up with over 20 shows 😂 Right now though, my husband and I are watching Beauty and the Beast during every meal, so I’m gonna go with that one!

Favorite food/meal?
I’m really picky, so I stick to the kids menu when it comes to food. Chicken tenders, french fries, and honey mustard would have to be my favorite though!

Part of the Bees & Butterflies Photo Bundle

Can you tell me a bit about yourself, where you grew up, your fam?

I was born and raised in Florida, with my brother, my mom, and my step-dad. We lived in a small beach town that no one’s ever heard of, unless you lived there, and everyone knew everyone else. Growing up, my cousins were always less than 30 minutes away and eventually we were walking distance. For a very long time, I was the only girl out of the four of us, but that just means I can hold my ground & throw a perfect spiral 🙂

When were you first diagnosed with your chronic illness? What effects has your illness had on your life?

Unfortunately, I’ve had a long battle trying to determine my diagnosis. My first big one was in 2011/2012, but I didn’t receive a bulk of my illnesses until 2016. I believe I’ve got a total of 18 diagnoses now and each one has had a major effect on my life. Over the years, everything has grown harder on my body and it’s effected both my personal and professional life. At the moment, I’ve had to give up school and work, but I’m hoping to get back to them someday!

Resume Template for Microsoft

How did you decide on your business name?

As you can image, with all the time I spend at home, I learn and master skills quite frequently. In doing so, I move on quickly while still enjoying all of my previous and ongoing projects. Of course, my friends and family took notice and deemed me “too ambitious.” So, I came up with Perfectly Ambitious as a way to describe myself and all of the amazing people like me!

How did you choose the products you would sell + create?

Originally, I ran a shop with handmade items (jewelry, decor, etc.) and I soon realized that the upkeep of having a physical product took a toll on my body. After my right heart catheterization, I decided I needed to make a change! So, I turned to my other passions and started selling digital products and services. Now, I focus on graphic design, social media marketing, and virtual assisting!

Blog Organizing Printable created by Ivy Cirillo
Marble Texture Blog Binder

How do you manage running a shop while fighting illness? Do you have others who help you?

When I was selling physical products, I wasn’t managing my shop at all. I constantly needed help and I leaned on my husband a lot, mostly when it came to packing and shipping packages. Now though, I’ve got everything under control and I rarely need help! And when I do, it’s usually just asking which image my husband likes more 🙂

What advice or encouragement would you give to someone who is thinking about opening their first shop?

I’d say go for it! If that’s what you want to do, then don’t let anyone talk you out of it! If you do though, remember not to compare yourself to others. You and your shop will grow in it’s own time and eventually you will flourish! So don’t let someone else’s stats get you down. Just work hard and push forward, I promise it will pay off!

Anything else you want to add or share about you or your shop(s)?

Yes! Even though, I’ve taken a break from my physical shop, I still love creating. So, I’d be more than happy to create something for you or a loved one! Not only that, but I’d love to help you in anyway that I can. So feel free to reach out to me about anything and everything!

Behind the Maker: An interview with shop owner, Ivy Cirillo. Hear how she opened her own business, tips for success, and check out her beautiful designs!

Ivy is a wife, a creator, and a photographer, but her biggest label? Spoonie. On her blog, Ivy writes about all of the things that she loves, and the things that she does, and how being a spoonie affects those things! She shares her projects, her feelings, and the inspirational women in her life. She believes that she is perfectly ambitious, and she’d love to feature those of you who are as well! Ivy is also a military wife currently living in Alabama. She runs her blog and her shop from home and also works on her novels in her spare time.

You can find Ivy on her blog, Perfectly Ambitious and check out her designs in her shop and hire her for a variety of services on Fiverr.

You can also connect with her on the following social media sites:  Facebook | Twitter | Pinterest | Instagram 

To read more stories like Ivy’s be sure to check out the rest of the series!

Want a chance to win one of 11 health prize packs for the chronically ill? Enter from now through December 3, 2016!

HUGE Holiday Giveaway!

 

Today I have something I have been DYING to share with you guys since September. The blogging network I belong to, Chronic Illness Bloggers Network, has organized a HUGE holiday giveaway! And guys, I’m not kidding when I say it’s FULL of fabulous prizes. From gift cards to coaching sessions, pain management products and health/vitamin gift packs – there’s something for everyone of us in the chronically ill community!

Items have been donated by bloggers within the network and a variety of companies we have partnered with over the last year. I’ve personally donated a $20 gift card to my brand new Etsy shop, Eight Fourteen Designs where I offer beautiful wall art printables as well as blog & Etsy shop design!

Win a $20 gift card to Eight Fourteen Designs!

I’m especially excited to see gift certificates to Theraspecs, which I’ve had my eye on for migraine relief! I also remember reading a fellow blogger’s review on the Nimble and how helpful it is for aching hands that struggle opening packages and mail. On the wish list!

The details…

The giveaway will run from Nov. 21 – Dec 3, 2016. There are 11 Prize Packs, each with a value between $400 and $600!! Still letting that sink in…wow.

Here’s a preview of a couple of the prize packs available to win…

Prize Pack 1:Enter to win one of 11 health prize packs! Each pack is worth $400+!!

Prize Pack 6:Enter the Chronic Illness Bloggers holiday health giveaway for your chance to win one of 11 prize packs!

2 of the 11 Prize Packs are available only to US-based winners. As winners are chosen at random, if a non-US-based winner is chosen for one of the US-only prize packs the winner will have the option to either have the prizes shipped to a US address of their choosing or to forfeit the prize.

To see all of the prize packs and enter for your chance to win one of the 11 prize packs, click below and follow the instructions! Good luck to you, friends!

a Rafflecopter giveaway

**This giveaway is sponsored by Chronic Illness Bloggers. Prizes have been donated by the following: Alisha Nurse; Aromafloria; BackPainBlogUK; Bridgwater Crafts; BeingFibroMomBroken Teepee; Chronically Content; Chronic Mom Life; ColitisNinja; The Fay Farm; Fed Up with Fatigue; FibroCane ; Fresh Assist Spray; Gupta Programme; HFactorWater; Kirsten Schulz; Living Well Today; Living Grace Blog; Lupus Chick; Megan SchartnerMelissa Swanson; Mini2z; Organic Aromas; Oska Wellness; The Pain Free Life; Patient Playbook; Perfectly Ambitious Blog; Posture Pump; ProHealth ; Rebuilding Wellness ; Strength Flexibility Health EDS; Sylk USA ; Theraspecs ; Vital Plan **

 

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How to Survive the Holidays When You're Chronically Ill | Three Bloggers Share Their Insight

How to Survive the Holidays with Chronic Illness

 

One of the hardest aspects of surviving the holidays when you’re chronically ill can be the simple task of

FIGURING OUT HOW TO DO IT.

How does one care for their sick self while still enjoying and engaging in the holiday season? How do we manage expectations, both our own and those of family/friends? Where do set our boundaries?

I’m sure we can all agree on this one point: this is going to be different for each of us. We all have our own unique limitations, abilities, personal expectations and individual family dynamics and traditions that will all play a part in how we best navigate this time of year.

But to get the wheels turning, I invited three lovely ladies to share their perspective, tips and any advice they have to share. And, my friend: their words are TRUTH.

Are you overwhelmed by the holiday season due to chronic illness? Check out these 3 bloggers' tips and advice for navigating this holiday season and still enjoying it!

Ivy Cirillo

Perfectly Ambitious
Find Ivy on Facebook | Twitter | Instagram | Pinterest

Navigating regular day to day tasks can be difficult on anyone with a chronic illness, but managing your symptoms during the holidays can be much worse. There are just so many unspoken requirements and expectations that it can be hard both physically and emotionally.

For me, this is the first holiday season after receiving a majority of my diagnoses. So, not only am I going to have to deal with my conditions, but I’m going to have to talk about them too. And since I’ll be expected to attend back to back holiday soirees and remain joyful during the process, I’ve picked up a few tips over the course of the last year.

1. Prepare
Prepare, prepare, prepare! Before any appointment or outing, I always try to make sure that I’ve gotten enough sleep, I’ve eaten, and I’ve kept up with my medicine schedule.

2. Listen
Listen to your body! No matter how much you prepare, there will still be moments when you’re just not feeling like yourself. Our bodies are unpredictable and no one knows your body better than you. So, if it’s telling you to go home early or cancel your plans all together, listen to it!

3. Enjoy
Enjoy each moment that you’re given! Truly joyful moments can be few and far between when dealing with chronic pain and illness, so if you get one, enjoy it! Drink it up!

4. Relax
Make time to relax! Going out can be exhausting and your body is already fighting a tough battle. So, you need to remember to schedule in a little you time! Plan to read a book, get a massage, or binge watch your favorite show while you relax and recoup.

In the spirit of solidarity this holiday season I invited three bloggers to share their tips for navigating this holiday season!

Marya Mesa

Chronic Mom Life
Find Marya on: Facebook | Twitter | Instagram | Pinterest

My first Christmas after getting diagnosed with cervical dystonia in 2010 was devastating. I couldn’t really do anything and had to watch my family do everything from the couch, where I lay in excruciating pain.

Things have improved for me since then and I’m able to participate more fully in holiday celebrations. However, I really have to pace myself according to how I’m feeling that particular day.

For one thing, we don’t have the most elaborate Christmas decorations. I put the tree up in the living room, decorate the mantel and dining room. That’s it.

I’ve had to let go of traditions I did with ease when my kids were younger. One of them was rolling out cookies. I just don’t do it any more. If I’m going to bake, drop cookies are perfectly acceptable and if I can’t do that, store bought items will have to do. It’s really okay.

Planning a schedule with margin is also important. I can’t handle back-to-back commitments without becoming completely exhausted. Not only that, I can always count on getting sick (or someone else in the house will!)

I’ve also stopped wrapping presents unless absolutely necessary and have really come to appreciate the convenience of gift bags.

My past few Christmases have been spent this way and I’m perfectly okay with it as long as I don’t compare myself with other mothers and accept the blessings that are in front of me for today.

How does one survive the holidays while chronically ill? Read how three bloggers approach this time of year in the midst of illness.

Stacey Philpot

Chronically Whole
Find Stacey on: Facebook | Twitter | Instagram

I am a celebrator of all things, big and small. Did you get the job of your dreams? Let’s celebrate. Did you pass the big exam? It’s party time. Did you get through the day without losing your shine? Worthy of celebration in my book.

Yes, I am one of those annoying people with a box of decorations for every holiday, real or imagined. Buying presents, making presents, giving presents- these things are my jam. Or more correctly said, were my jam, before chronic illness took over.

The holidays were once the pinnacle of my celebration loving existence. They now feel like stress. To combat this, I’ve learned to reset my expectations. It’s taken a tremendous amount of time and trial and error. While I once approached the holiday season expecting magical holiday bliss, I now approach the season with the full knowledge my season will look much differently than others. I will not attend every party I would like to. In fact, I will not attend most parties or school plays or special holiday gatherings. Instead of beating myself up over this, I’ve learned to celebrate the “wins.”

When I do make it? I live fully in the holiday moment. I shake off any guilt about the present I didn’t have time to wrap (or buy) and I simply enjoy the moment. I am here, and that is lovely. There are many reasons the holidays may not look or feel the way we’d hoped but I think one way we can prevent disappointment is a simple realignment of expectations. The holidays will not be perfect, but they can be beautiful.

How about you? Do you have any tools that help you navigate the holidays while ill?

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Understanding the Complexities of Lyme Disease: A guest series by Genevieve Goetz

Understanding Lyme Disease (Part One)

Today I’ve invited my friend and fellow Lyme warrior, Genevieve, onto the blog to facilitate a series on understanding Lyme disease. The complexities of this illness often leave many friends, family, medical practitioners confused or in disbelief about the realities Lyme patients live with. So our goal with this series is to unpack the facts of the beast that is Lyme disease and raise awareness for the many warriors across the globe.

By Genevieve Goetz

My journey in life drastically changed when I was diagnosed with Chronic Lyme Disease. I currently live in the beautiful, rural Hudson Valley of NY. Besides writing, I love to garden and grow my own food. Being in nature is so healing for me. I have been practicing yoga for years, and have been teaching for over four years. I am trained in Vinyasa and Prenatal, and love to teach in unusual places like a nonprofit conference room, a government housing center, universities, and farms. But I also love the traditional studio setting.

I traveled for most of my twenties, lots of time in New England/New York area, Hawaii, Japan, and Philly (my hometown). I studied Creative Writing and Photography at a small university, and now due to my illness, I am really using my writing skills and passion, and receiving great feedback and publishings. Having my pieces out there online helps me connect to a great community of fellow Lyme Warriors, who inspire me to continue on my path.

An Intro to the Lyme life…

Lyme patients have to not only take on the burden of healing a disease, they have to constantly explain things they don’t even understand. Not all Lyme patients know how the body works, so going through such a scary medical experience for a long time can be detrimental to improving health. Doctors have their own language, so it is easy to not understand.

The interweaving of your body systems may be a mystery to you. People may even tell you this disease doesn’t even exist.

I started studying Occupational Therapy about two years ago. I took two semesters of Anatomy and Physiology, and Physical Pathology, Medical Terminology, and Kinesiology. Since my Lyme diagnosis and three years prior of misdiagnosing, I have had to put school on pause. But the knowledge stayed with me because I was experiencing such a severe, chronic illness and want to heal.

My experience as a Yoga Teacher and student of Occupational Therapy has given me knowledge on how to survive during these drastic times. Exploring what yoga poses aid and assist in my treatment, practicing deep breathing techniques, and having a mat to center myself has been a blessing. Learning how to create patient-centered treatment plans from an Occupational Therapy perspective has helped me create my own goals and consistent lifestyle of quality healing.

Because of my research, I can determine if scientific theories are coming from a true medical research background, or are just plain false. Having the knowledge on how my own body works has given me great clarity during flare ups and other extreme situations. It’s also helped me keep up with doctor “lingo”, even in the worst of pain.

How does Lyme work? Genevieve Goetz unpacks the basics of Lyme disease in part one of this series.

So what is Lyme disease?

There is so much contradicting information, that it’s hard to put the puzzle pieces together on how this all works. Lyme Disease is transmitted when an infected deer tick bites a person and inputs infectious bacteria, such as Borrelia burgdorferi and Borrelia mayonii, into the person’s bloodstream and tissues. There are many different strains or species of Lyme bacteria, along with other coinfections, that can be passed from a tick bite.

Spirochetes form and grow into a large, thick spiral shape. They attach to any cell in the infected person’s body, enter the cell, and cause a release of digestive enzymes so the cell dies. Then the spirochete can act as the former cell of the host, by wearing the outer cell lining of the initial (now dead) cell. The body’s immune system will check it out, recognize this outer layer as a regular cell and allow the spirochete to grow and travel. Thus spirochetes mimic any system of the body, which leads to a lot of misdiagnoses.

Chronic Lyme can go into remission, once enough Lyme cells are killed and toxins processed out of the body. But this disease is forever, so always check up with your doctor or specialist. Spirochetes survive in the host for a long time. So even when the symptoms disappear, not all of the spirochetes leave your body. It’s also important to note that Lymies should not donate blood or be organ donors.

Readers, the next article’s topic is up to you! What medical questions do you have? What do you need clarity on, or would like some real discussion on? Please send us your questions through this form and we’ll answer in the next article! Thank you so much!

Connect with Genevieve:
www.GenevieveGoetz.com
Email | Twitter | Instagram

For some starter resources on understanding Lyme and prevention visit my Lyme Disease resource page.

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Three bloggers share about the moment they were diagnosed in this collaboration piece. Their words are real, honest, and validating to anyone who has waited for their own answers.

When You Finally Get a Diagnosis

If you have a chronic illness, do you remember the moment you were diagnosed?

I remember the first diagnosis I received. How mixed my emotions were. How strange it felt to finally have an answer after a grueling year of tests and many years prior filled with strange symptoms. Only to find out several years later that I had, in fact, been misdiagnosed. Instead of MS, I had Lyme disease, and a late stage at that.

I wanted to give space to a few other bloggers to share their own experiences here on the blog. To talk about what they remember of that moment a doctor found the answer they’d been searching for. And how their life has changed since.

Each of these stories you’re about to read are so important. They are a reminder of our humanity in illness. The reality of being a patient searching for clarity amidst the madness of our unique illnesses.

I hope their stories resonate with you as much as they resonated with me. Their courage in sharing is oh so beautiful and I’m honored to have them here. Thank you Kate, Shelley and Alisha for being a voice for so many others. <3

When you've waited months or years for your diagnosis, that moment is filled with mixed emotions. Of anxiety and fear, but also relief and validation. Three ladies share their experience of the moment they were diagnosed...

Shelley Smith

Chronic Mom
Find Shelley on Facebook | Twitter | Pinterest

As I sat waiting for the doctor to come in, I realized I was tired of feeling vulnerable. I was weary of placing my life in doctors’ hands and having them let me down again and again. I was done listening to doctors who thought I was crazy because I knew there was something wrong with my body. After two years of looking for answers in all the wrong places I didn’t even care what the diagnosis was, I just wanted answers.

When the moment finally came I wasn’t fully prepared for the answer. I could hardly believe that after all this time the strange symptoms I’d been living with for so long added up to something, and it was something real. I wasn’t crazy, depressed, or lazy, I was sick. All my symptoms added up to a real diagnosis and now I could get my life back.

It wasn’t until two years later that I realized I was never going to get better. It took me so long to find a diagnosis that my body had been permanently affected. This was my new life with chronic illness and I had to learn to accept that my life was going to be different. Acceptance didn’t come right away. There was a lot of grief I had to process first, but eventually I was able to find peace with the messy version of myself that was created by illness.

Because even messy and broken, I’m still me.

Do you remember the moment you were diagnosed? Read these accounts of the moment patients were diagnosed and all the emotions that came flooding in.

Alisha Nurse

The Invisible F
Find Alisha on Facebook | Twitter | Instagram

I’ll never forget the day I was diagnosed with fibromyalgia. I was flooded by emotions. Finally, there was a name to what I’d been suffering my whole life. There was validation.

I recalled the countless times I’d squared up to guilt after being asked what was wrong by family and co workers when I couldn’t go to work or social events. I felt absurd rattling off the myriad of symptoms I exhibited, and felt exasperated every time good meaning people offered the same advice – ‘you need to exercise’, ‘you need vitamins,’ ‘maybe it’s a mental thing,’ – I was living that hell and no one understood. Nothing helped.

Then uncertainty and fear. Now I knew what to call the monster but I wasn’t sure exactly how to fight it. The doctor gave me a little brochure but said there was little information on it. My Google searches offered little results, and no one I knew had ever heard of it.

I started off very dismayed; for years, I spent most of my days in bed, never went out, because I was in so much pain, so exhausted and dizzied. I fought the best I could but felt like I was a spinning top in mud.

A lot has changed since then. A series of events, including finding a full time job forced me to push harder against the gale storms. I changed my diet, lifestyle and outlook, took time to understand my triggers, find the right medication and detox from the things/people that made me flare. It’s been a tumultuous journey but it led to me reclaiming my life, and discovering what I’m really made of.

Having a doctor who is determined to help you get to the root cause of your medical issues is such a gift. There is validation, relief, and so much gratitude wrapped up in the moment they are able to give you insight or a diagnosis.

Kate Eastman

Make It, Bake It, Fake It
Find Kate on Facebook | Twitter | Instagram | Pinterest

Really?! All these crazy things my body was doing; from breathing difficulties, to forgetting how to add up numbers, body pain, to extreme fatigue and nausea…”maybe I was imagining it“?! I left that doctor’s appointment with tears running down my face.

By the time I got home I was fuming. I threw on my running gear. “If this is psychological”, I chanted in my head, “I will go for a huge run and outrun it.” At a steady pace I started off, pushing harder and harder. I was used to running 10 kilometres. This should be easy. 300 metres later I lay collapsed on the bench at the side of the oval. My chest ready to explode. My body in agony. There was definitely nothing psychological about this.

Weeks later, I walked into an appointment with a new doctor my friend had recommended. Was I game to trust a medical professional again? My list of symptoms and inconclusive tests clutched tightly in my hands. She listened patiently and asked the right questions. She even did a psychological screen to prove to me it was not in my head. She ordered more tests. Yet, then and there she suggested I probably had ME/CFS.

Two weeks and I returned to her office. The tests were clear. I met all the criteria. I had ME/CFS. I left the office that afternoon in disbelief. I had a diagnosis. Yet, I promptly turned around and played sport that evening. Life had no time to stop for this diagnosis. It took me years to truly accept my diagnosis and to admit that I was sick. I continued working, exercising, and being busy. Until one day my body had enough and wouldn’t do anymore!

My body continues to do weird and (not so) wonderful things. However, I am thankful I now have a doctor walking that journey alongside me. Who when I lose my faith, continues to push me forward, opens up new treatment options, and supports me in navigating the welfare and insurance systems. Four years in I can see how God is walking every step alongside me, and how there is nothing psychological about this disease!


Do you remember the moment you were diagnosed? Or are you waiting to find the answer to your own medical mystery?

the-moment-we-were-diagnosed

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Illness has a way of shifting the way we not only process our day to day life, but how we view the life. Priorities shift and reality sets in. And we'll each find our own unique perspective in illness. Finding our own way to cope with, survive and even mysteriously thrive in spite of a life of sickness. These 3 bloggers share their thoughts on their perspective now.

How Chronic Illness Shifts Your Perspective: 3 Bloggers Share

Perspective has a way of shifting when your life gets turned upside down by illness. It’s impossible to go through hard things without it affecting you in some way. Whether that be in the form of challenging you, breaking you, or taking away your abilities and a life you once lived.

This month I asked several of the bloggers from my Chronic Illness Bloggers network if they would share some of their honest thoughts on perspective. How it has shifted in illness and what that looks like in the lives they fight to live.

I was moved by their responses and am sure many of you will be as well. Every word and unique perspective is valid and authentically theirs. And it’s a reminder that though we may not be on the same page, viewing life through the same lens – we all have a common thread.

We’re all reaching for a way to survive.

"By being present, I now notice small moments in life and gain much strength from the beauty within nature." - Kirstin Larkin

Kirstin Larkin

Highway to Healing
Find Kirstin on Facebook and Instagram

I once led a fast paced lifestyle running through life without really living it. I was too busy with school, work, and friends to appreciate all the small gifts of life.

When I developed a chronic illness six years ago, a dramatic shift occurred in me mentally, emotionally and physically. I was no longer able to speed through my days and instead was forced to sit alone with my thoughts. I turned to meditation to help me get through the loneliness. As a result, it changed my perspective on life.

I learned that rushing through my days was not a fulfilling way to live. Instead, I needed to be more aware of the life that was around me and appreciate all things large and small. By being present, I now notice small moments in life and gain much strength from the beauty within nature.

In my times of silence, I learned that I am not invincible and my life can be taken at any moment. This has reminded me to be grateful for every breath, every sunrise, and every sunset. I have become a firm believer in showing gratitude for all things because life is fragile.

By changing my perspective on life, I have become a more positive person. I am centered and happy because each decision I make now comes from a place of love. It saddens me that I rushed through the first twenty one years of my life and didn’t truly appreciate all the gifts life gave me.

"Chronic Illness, and its not-so-subtle reminders, drastically change all your choices. It's that daily shadow you just can't shake." - Seda Bryant

Seda Bryant

Overcome Lupus
Find Seda on Facebook, Twitter and Instagram

When you’re given 3 weeks to live and you don’t know if every daily sharp pain is your last, your perspective has to change. While all the flowery quotes and the transformation into a new appreciative version of you ring true, the reality is, your own mortality stares you in the face everyday.

I was a person who felt invincible. Never feeling insecure about my stability or future. Ruled by ambition, I worked a lifetime in 15 years. Literally living a compressed life, I now have the physical health & perspective of a 60 year-old in my 30’s. Facing everyday like it’s the last.

Even five years later, mortality becomes ingrained in your every move. Every time you reach for bottles of meds, eat a meal, take a step. Chronic Illness and its not-so-subtle reminders, drastically change all your choices. It’s that daily shadow you just can’t shake.

So bullshit conversations are no more. The phrase “I don’t have time” becomes true to life. Anyone not beneficial to leaving that legacy you were brought to this earth to leave, becomes inconsequential. You problem solve and slash & cut through doubters, unsupportive family, lovers and draining relationships like a navy seal with a machete in the jungle.

Nothing is worth dragging out. You must streamline all things, and move with the focus and tactical efficiency of a sniper.

So one poignant & powerful little word leads the charge as the new ruling force of your life.

Onward.

Because you literally don’t have time….for anything else.

"Through growth and acceptance of my path - this fight for wellness - my faith has strengthened. And for this, I'm truly thankful." - Terry Mayfield

Terry Mayfield

Color Me Lyme
Find Terry on Facebook, Instagram & Twitter

Despite the plethora of struggles that accompany being chronically ill, housebound, and feeling inexplicably miserable most days, I am happier today than I’ve ever been. I am beyond grateful for the blessings that surround me.

Perhaps this may seem odd or even a bit twisted to some, especially to those who truly “get” the dark, painful, and isolating side of living with chronic Lyme disease, or chronic illness in general.

Learning to cope and live with these debilitating diseases that have consumed my body and enveloped my world has been undeniably trying. At times completely overwhelming, with a fear of no positive end in sight. However, through growth and acceptance of my path – this fight for wellness – my faith has strengthened. And for this, I’m truly thankful.

I try to keep focus on a future filled with boundless energy – feeling healthy and strong. Doing my best to learn from these current health challenges and trials. Constantly reminding myself to be grateful for this life I’ve been given. Sincerely appreciating all of the simple pleasures along my journey – taking nothing for granted.

The years of battling illness, to some degree, have provided me an enlightened sense. Realizing that sweating the small stuff and worrying about what may be out of my control, is a complete and absurd waste of precious time while on this planet. Perhaps I’m even a little less OCD! Bottom line, I am learning to “let go and let God.”

Whether you are a believer or not, my wish for you is as follows: I hope you are able to embrace ALL the good surrounding you, giving thanks along the way. Life is precious and full of blessings. It’s all in one’s perspective.


How about you? How has chronic illness or hardship changed your perspective?

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3 spoonie bloggers share their ideas for how to buy a thoughtful gift for your chronically Ill friend or loved one.

Gifts for the Chronically Ill: How to Brighten Their Day

Have you been on the sidelines wondering what in the world to give your chronically ill friend or loved one? It can be difficult to know what they need, let alone what they would enjoy as someone who lives with sickness. Perhaps they spend their days at home and that fact alone is throwing you for a loop:

What do I buy for someone who can rarely leave home?

Today I’ve invited three lovely blogger friends of mine who are well versed in this whole “living with illness” thing and they’ve got you covered! These ladies have been on the receiving end of great gifts, know what’s helpful and what can brighten the day of someone living with illness.

So without further ado, here are their fabulous ideas. They’re sure to inspire you as you shop!

These 16 gift ideas are inspired by 3 chronically ill bloggers. They have you covered for gifts for the chronically ill!

Genevieve’s List

Whether it be humorous or endearing, a card is a classic for a reason. They can be kept for years and fondly looked back on.
– Genevieve Goetz

  • Flowers – Who doesn’t love beautiful flowers? First check for any scent sensitivities.
  • Card – Whether it be humorous or endearing, it’s a classic for a reason. They can be kept for years and fondly looked back on.
  • Gift Certificates – for Alternative Healing sessions like Acupuncture, Massage, Chinese medicine or a private Yoga class. Check first to see what modality would be best.
  • Online Grocery Shopping – Whether it’s a meal service or a site where items can be pre-selected, free food arriving at the front door is a blessing!
  • Cozy Clothes – Robes, blankets, socks, slippers, the works! It’s a reminder that it is okay to relax and rest, we are supported and secure.
  • Resources – Find community organizations, meetings, health care professionals, federal and local representatives, patient advocates, anything in that person’s area which could be a real game changer.
  • Visit – It is a dark and lonely road being this ill. Having quality time together is priceless, strengthens bonds immensely, and spreads unconditional love and support.
  • Inside Joke Gift – It should be silly and up to your imagination! Being able to see, wear, touch a piece of a great moment makes every day more fun.
  • Advocate – By paying attention to the specific illness, you can go to charity events, give donations, and spread awareness about the disease and its impact on human life.

Genevieve Goetz
genevievegoetz.com
Find Genevieve on Facebook | Instagram

Feeling lost shopping for gifts for the chronically ill? Check out this list written by 3 chronically ill bloggers! | Living Grace Blog

From Karley:

I’ve suffered from chronic illnesses over the last four years and in that time I’ve learned so many things that have helped me get through the tough times. I’ve had some great gifts from people over the years that have also helped me see the light in what sometimes seems to be a dark world.

Reading is a great distraction, not to mention really fun if you pick the right book for your friend.
– Karley Kay Linger

The first gift I think would make a great gift is a heating pad. It has helped me to manage pain, loosen my sore muscles, and just feels nice!

The second is books, whether digital or not. Reading is a great distraction, not to mention really fun if you pick the right book for your friend.

And the last thing that I think would make a great gift would be a certificate for a massage or spa. We spend so much time feeling sick and dealing with our illnesses that we rarely have time to pamper ourselves, relax, and try to forget about it. I know I would want to go! To be able to finally relax and just stop thinking for a while sounds like heaven to me.

Karley
Dangerously Normal Spoonie
Find Karley on Facebook | Instagram | Twitter | Pinterest

Need Ideas for what to buy your chronically ill friend? Check out this list of thoughtful ideas for your friend or loved one!

From Ness:

Buying for someone with a chronic illness can make things slightly difficult. What I would recommend is something pretty, practical and comfortable. Colours, fabrics and pattern can brighten up a painful day.

A pretty new mug is something to get excited about in my world. Beautiful, colourful, curved pottery mugs with Mediterranean colours always catch my eye. If you think beyond the mug it’s also a great talking piece for super Instagram photos for the chronic ill person.

Comfort is also essential when you are unwell so a soft pillow or a pretty soft blanket, socks, or even crochet wrist warmers are great ideas.
– Ness QM

You could even wrap it in tissue in a box with a mission list: “Each week you must post on Instagram an image of you and your Mug and something that made you smile that happened that week.” Funny things like that make me smile and I’m sure I am not the only one.

Comfort is also essential when you are unwell so a soft pillow or a pretty soft blanket, socks, or even crochet wrist warmers are great ideas. I just bought an amazing baby pink lace top pair from Conscious Crafties, a shop showcasing crafts by chronically ill people.

Journaling is something I have recently started. It is so relaxing. A hamper of journal supplies would be a great gift. You could include a nice writing journal, colourful pens, and pretty stickers. You may have to explain to the person all about journaling, but there are some great bloggers that have super ideas.

Take time out, don’t just give the gift.

See if they are on Pinterest or have even heard about it. You could show them all the journaling images on there to get them started. And if your friend or loved one isn’t up to a visit you could enclose a letter telling them all about it.

You could also give a stationary set as a gift. Social media is wonderful, but not as wonderful as a handwritten letter. Make a pledge to be their pen pal. Give the stationary set and time the post so that your first letter to them arrives the next day!

Ness
The Girl With Five Lads
Find Ness on Facebook | Instagram | Twitter | Pinterest

Do you have something you’d add to this list? We’d love to hear your ideas in the comments!

Looking for more ways to support your friend who’s sick? Check out this post.

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Phrases People Should Stop Saying

The Phrase I Wish Was Extinct: 4 Bloggers Speak Out

You don’t have to be chronically ill to come up with your own phrase you wish people would stop using. And if we’re honest with ourselves, we have all been guilty of stringing together a bunch of well-rehearsed words that did more harm than good.

I think there’s a line we often struggle to see. It’s the line that borders sensitivity and awareness.

It’s one thing to say something to the person, see their pained expression or blank stare, and decide to never say it again. Or, even better, try harder to understand what they’re going through. Embrace awareness. Listen.

But to repeatedly say the same rehearsed lines over and over again just because they’re commonplace? They’ve lost meaning, often lack truth and they’re painful to hear. And the aftermath of hurt is not something than can be chalked up to someone just being “too sensitive”, friends. This is a vivid display of a lack of awareness.

So I asked a few of my favorite chronic illness bloggers + friends to share a phrase they wished was extinct and offer an alternative or dose of awareness. Here’s what they said…

A Quote by Matt at: SurvingMyPast.net

“Just Get Over It.”

As some who suffers from Dissociation, Anxiety, and PTSD as a result of childhood sexual abuse and narcissistic abuse, one of the phrases I can definitely do without is, “Just Get Over It”. Honestly that’s about the worst thing you can say to anyone who’s suffered any type of emotional trauma.

Physical wounds can heal, but emotional scars can last a lifetime. You simply don’t “get over” being abused in any capacity. Our minds, our very being, everything about us changes, whether it’s a one-time incident or constantly over years and years.

For many of us, we never had self-esteem, confidence, or an ability to trust and love. All we’ve ever known is fear, pain, and a feeling of worthlessness. Some of our earliest memories were of being torn down, manipulated, and used.

For others, our abuse happened later in life, and completely transformed our identity into someone we never thought we’d become. Therefor we have to work even harder to retrain our minds to see others, and the world overall, and not something we should fear.

Instead of saying, “Just Get Over It”, how about trying something like, “I’ll stand with you”.

Matt
Surviving My Past | My Life with Dissociation, Anxiety, and PTSD.
Find Matt on Facebook and Twitter

 A quote by Brittany @ asouthernceliac.com

“I don’t know how you can live like that.”

There are a lot of phrases I wish would just disappear. As a chronically ill person, I hear so many things that make me wonder if the person thought them through before saying it! Out of all the things I’ve heard, however, “I don’t know how you can live like that” is probably the worst.

Whether it’s about being in constant pain, not being able to drive, having muscles that rebel against me, there are a lot of things about my life that aren’t necessarily ideal. But you get used to it. I do have days when I hate not being able to do things I want to do, and I would love not to be in pain all the time. So, on the surface, “I don’t know how you can live like that” doesn’t sound too bad. But then you think about it.

I live like this because I don’t have another choice. I live like this because I have to. Telling me that you don’t know how I do it doesn’t make me feel inspirational. It makes me feel depressed! Chronically ill people adjust. And eventually? We thrive.

Brittany Wattenbarger
A Southern Celiac | Food. Fashion. Fainting.
Find Brittany on Facebook, Twitter and Instagram

Quote by Kim @ GraceIsSufficient

“God won’t give you more than you can handle.”

I’m not sure where the idea got started, but I haven’t been able to find it in the bible. It can be so harmful to the receiver, making them feel like their faith is weak instead of helping them focus on the struggle as a way to lean on God and all His strength.

As a matter of fact, it even goes against some of the greatest examples in scripture. If you read the Psalms, they’re full of David’s weeping and sorrow – not exactly words that sound like they were written by someone who’s handling life with exuberance and inner strength.

In 2 Cor 12:9 the Apostle Paul says, “But He (God) said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.” Paul boasts about his weakness so that we can see that it’s only through God’s power that he was able to endure.

Instead of minimizing someone’s struggle with a phrase like this, it’s better to just be a listening ear and offer to pray with and for them!

Kimberly Penix
Grace Is Sufficient | Finding Peace and Purpose After Diagnosis
Find Kim on Facebook, Twitter and Instagram

And now for mine:

Please, Stop Using These Phrases

“Just be positive.”

For some this may be their life motto and I truly have nothing against that! I am all for embracing feelings of happiness or gripping onto hope. But, passing me that phrase in response to my sharing how I’m really doing? It’s painful.

Often times those of us living with illness face cycles of grief, loss, and trauma throughout the many different layers of this chronic life. If someone were to slice their hand open with a knife, would you run over to them and say “just be positive! Your hand will feel better!” (If you’re answer is yes, this is probably not the blog for you).

More than likely you would offer to help. You’d clean the wound, take them to the ER if it’s a deep cut, or get them a bandage. There are things you just do in that situation right? In the most basic terms: you support them.

Chronic illness isn’t something that just “goes away” or heals after a visit to the ER. So we find ways to navigate this new life. We don’t live in the depths of negativity, but we do face some heavy, deep emotions and struggle.

Your support will always go so much farther for someone hurting than a careless “cure all” phrase would ever do. So instead of telling someone with chronic illness to “just be positive”: listen. Chances are you’ll hear their bravery, for each day is a battle they’re fighting.

How about you? Is there a phrase you would like to change?

This week I had the honor of joining Sarah Rieke on her podcast, Heart Lessons, to talk about my life with Lyme. To listen to our chat and check out her wonderful blog, click here!

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