Hope Warrior- Kenzie

The lovely woman I’m about to introduce to you all this week is perhaps one of the most resilient human beings I have come to know. Her posts are honest, raw and give a clear picture of what life with autoimmune disease(s) is like. Even though she has been through plenty of trials and tribulations, Kenzie has faith and remains beautiful and looks for the good through it all. Her motto, #bethecactus, is so fitting to describe her. Make sure to check her and her sweet dog Ophie out on her website here and Instagram @accordingtokenz
Thank you so much for sharing your story Kenz!
 You are one of the lucky gals that has the gift of the diagnosis that just keeps on coming. Will you please share your current diagnoses? 
My primary diagnoses are rheumatoid arthritis, Addison’s disease, inflammatory bowel disease, and lyme disease. We’re still ‘sorting out’ a lot of the specifics, but my Addison’s disease is well-controlled for the first time since I was diagnosed in June, and my RA is responding very well to my current treatment!
So, you’ve been through a lot of first times receiving the news that your life is going to change, yet again. Can you share what it feels like when you receive a new diagnosis?
It’s frustrating, obviously, and it’s hurtful…also obviously! The very first time I was told I had rheumatoid arthritis, I experienced a lot of relief because I finally had something tangible to account for my symptoms. I could’ve never imagined at that time that I’d go through the “newly diagnosed” stage with 3 other diseases, too! 
What medications/treatments/surgeries/lifestyle changes have you gone through to manage your disease symptoms?
I’ve had two joint surgeries, a subtotal colectomy, two additional abdominal surgeries, sinus surgery, port-a-cath placement surgery, and good ole’ wisdom teeth removal surgery!
I’m currently on 10 oral medications, 2 IV infused medications (Remicade and iron sucrose) and a once weekly injectable therapy called Methotrexate.
Ophie is absolutely adorable, and I love that she is in your life. How does she help you cope with everyday chronic life?
Ophie holds me accountable on days when I’d rather not get out of bed due to feeling overwhelmed, depressed, etc. She also provides special comfort on the days when I cannot get out of bed due to pain, swelling, and other debilitating symptoms. She’s taught me a lot about patience and simply enjoying each day for what it brings — good or bad. She’s motivated me to keep active and her personality is such a reminder to not take anything too seriously!
What other coping mechanisms do you use most often?
I do a lot of journaling/writing in solitude. Walking with Ophie, practicing yoga, employing mindfulness strategies, coloring, spending time outdoors, snuggling up with a heated blanket, and reading often distract me from distressing days/outcomes!
Who inspires you?
People who are out there making things happen in spite of the hand of cards they’ve been dealt. Britt Johnson, aka “HurtBlogger” is one of my closest friends who is living proof that we can find joy in the most difficult seasons. I’m also deeply inspired by literature, and psychology experts in particular. Kay Redfield Jamison, Emily Dickinson, Sylvia Plath, Henri Nouwen, and Laura Ingalls Wilder are just a few of my favorite individuals. 
Sometimes it is hard to see the light in the darkness, but what is the best thing you’ve find about having chronic illnesses?
The numerous connections and friendships I’ve formed with other individuals who fight a chronic illness day in + day out just like I do. Becoming active on my blog and on Instagram has allowed me to connect with more people who “get it” than I could have ever imagined or thought possible! It’s a really, really special community to tap into.
What keeps you hopeful?
Reflecting on the truth(s) so evident in my life. I’ve been taken down so many times by both chronic and mental illness, and I’ve made it through each and every one of those difficult seasons. Somehow. Some way. My strong faith in something so much more perfect and Heavenly following this life gives me the courage I need to face each day with a certain stubborn minded resilience that hasn’t failed me yet. 🙂
What have you accomplished that you are most proud of?
Traveling has always been an important part of my life and spirit. There was a time when I thought I had to give that up. I’m always proud to reflect on the adventures I’ve taken even though the odds are often stacked against me. In spite of chronic illness and many, many complications, I’ve traveled to South Africa, Swaziland, Jamaica, Germany, England, France, Austria, Alaska, California, Colorado, Texas, Illinois, Pennsylvania, and Washington D.C. over the past several years. The list of places I want to go grows longer and longer as the list of places I’ve been grows, too!
Do you have a saying or quote or song that you turn to when you need to flip your mood around?
 
I’m notorious for ending a good vent session/medical field misadventure story with… “…but, if you don’t laugh, you’re gonna cry!” Disclaimer: I often do both! 😉 
 
I’ve also adopted the motto + hashtag #BeTheCactus after a good friend likened me to the cacti family’s resilient, hardy nature. They withstand even the most treacherous conditions while remaining wondrous and beautiful.
Tell me about some of your favorite things. (food, beverage, location, activity, people, hobby, animal, etc you name it!)
I love memoirs. My favorite would have to be Kay Redfield Jamison’s “An Unquiet Mind.” Kate Middleton is a timeless, classic style icon of mine that I keep up with relatively closely. My latest TV obsession is the Game of Thrones series. 
Okay, Rapid Fire time!
Chocolate or Vanilla? Vanilla
Coffee or tea? Tea
Injection or IV? IV
Hot or cold? Cold
Sweet or sour? Sour
Charmin or Cottonelle? Cottonelle! Always Cottonelle!
Dog or cat? Dog!
Running or walking? A few years ago I would have said running…but I’m a walking girl now!
Road trip vacation or resort vacation? Road trip!
Yoga or Cardio? Yoga
Android or iPhone? iPhone
Sunshine or rainy day? Sunshine
Dinner out at a restaurant or a nice home cooked meal? Nothing like a home cooked meal!
Doing the dishes or doing laundry? Laundry
Comedy or horror? Comedy
Fiction or nonfiction? Nonfiction
Cake or pie? Pie
An audiobook or a netflix marathon? A good, true-crime podcast! Does that count? 🙂
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Hope Warrior-Jordan Wilson

I was lucky enough to meet Jordan in person at an Ulcerative Colitis Patient Panel hosted by Pfizer about a year ago. He was one of the first patients with a jpouch that I had ever met in person, and he gave me hope that if I ever had to take that route for treatment, my life wouldn’t be over. Instead of letting the diagnosis of Ulcerative Colitis shatter his life, he’s taken this new lifestyle as a second chance to enjoy as much as possible. Thanks for taking the time to answer a few questions and share your story, Jordan!
When were you diagnosed with Ulcerative Colitis? 
I was diagnosed with Ulcerative Colitis in June of 2010.
What do you remember most about that day? Looking back, if you could tell yourself one thing about the diagnosis you were about to receive, what would it be?
I remember waking up from the colonoscopy and having my mom in the recovery room with me.  I was still pretty out of it but my doctor said he could tell right away it was UC.  I was pretty cloudy for most of the afternoon and I don’t think the severity of the diagnosis really sunk in until the follow up appointment.  Looking back, if I could tell myself one thing about the diagnosis, it would probably be to make sure to listen to my body.  There were times where I was so consumed with having the right mental attitude about it that sometimes I would ignore the obvious physical pain I’d be in.
I love that you hashtag some of your posts #lifeisa10. Will you share a bit about what life is like with a jpouch? What other medications/treatments/surgeries/lifestyle changes have you gone through to manage your disease symptoms?
Yeah that’s the hashtag I thought of using for all of my Instagram posts!  It just sums up how I feel now.  I’ve been living with a healthy j-pouch since the spring of 2013.  It really has given me a second lease on life.  I was in real bad shape before my surgeries.  Of course, life is different now, and as cliche as it sounds, it is a “new normal”.  But it’s so much better than being sick. I went through the catalog of medication before my surgeries, pills, enemas, infusions, suppositories, etc.  Now the only thing I take is a multi-vitamin and a probiotic.  A lot different from the days of 18-20 pills a day.  I also pay attention to my diet and exercise, eating pretty clean 6 days a week or so and working out just about every day, at least once a day.  The mental benefits are just as important as the physical benefits I’ve found.
By the way, congratulations on making the homepage for the Crohn’s and Colitis Foundation! Love what you are doing to raise money for the foundation. I really can’t pick between you or Will riding shirtless, so I’m donating to both campaigns. Either way, so fun! What is your favorite part about being an IBD Advocate?
Thank you!  Yeah this whole riding shirtless bet has given me a ton of new motivation to stay in shape!  We’re humbled to have been chosen as the national faces of the spin4 crohn’s & colitis cures event for the Crohn’s and Colitis Foundation.  My favorite part of being an IBD advocate is the opportunity to travel while helping others.  I’ve been lucky enough to go to Washington, D.C., Fort Lauderdale, Orlando, New York, San Francisco and Atlanta while sharing my story and contributing to different advocacy projects.  I’ve made it my mission to be a voice of positivity among IBD advocates because I feel there is a lot of negativity out there, especially in the online communities.  I didn’t have anyone I could talk to who had gone through what I went through, so I want to be that guy people can turn to.  I feel like if we can use our past experiences to help someone, it’s our duty to do so.
What are some of your other favorite things to do outside of IBD awareness and education?
(favorite books, music, podcasts, hobbies, activities)
Outside of creating IBD awareness I enjoy my “day job” which is a Realtor in Orange County, California.  Another opportunity for me to help people.  My hobbies and passions include fitness, reading (I’m in a book club and read a new book each month), riding my motorcycle, traveling, cooking (more importantly, eating!), and just spending time with friends.  
What is something you have accomplished that you are most proud of?
I can think of two accomplishments right off the top of my head that I feel most proud of.  I was able to study for and successfully pass the state real estate exam from a hospital bed.  It was during the 5 month period of my j-pouch surgeries when I had some downtime and was able to study and take the necessary tests.  The second thing is all the advocacy work I’ve been able to accomplish just since September of 2016.  It’s given me a renewed sense of purpose and I’m really passionate about using my experience to help others.
 Who inspires you?
Someone that inspires me is my friend/mentor Jay O’Brien.  I’ve known him for about 16-17 years.  He recruited me to work with him in the real estate office.  The way he handles his business inspires me to strive to provide the best experience possible for my clients.  Not only that, he’s also one of the most generous and selfless people I’ve ever met.  He continually does things for others, not expecting anything in return or recognition.
What are some of your coping mechanisms for dealing with stress?
I’m not sure if I have any coping mechanisms for stress.  I think I’m pretty lucky that I’ve trained myself to be more patient and calm these days.  I do a pretty good job of letting things roll off my back and not taking too much too seriously.  I use exercise as a way of meditation.  Whether it’s weightlifting or indoor cycling, I use that time to clear my head and recharge.
What has been the best thing that has happened so far that would not have happened if you did not have IBD?
Other than meeting other amazing advocates like you?  Honestly, the people I’ve met through my advocacy work have been absolutely incredible.  Being introduced to the IBD community has been one of my life’s highlights. 
 What keeps you hopeful?
What keeps me hopeful is the thought that the best is yet to come.  So far things are getting better and better and I can’t wait to see where things are headed.
Do you have a favorite saying, quote, mantra or song that you turn to when you need to flip your mood around?
Life is a 10!  I am always reminding myself that it could always be worse.  Even after all the pain and discomfort I’ve been through, it’s nothing compared to what others are going through.
Okay, time for rapid fire this or that:
Chocolate or Vanilla?Vanilla
Coffee or tea?Neither.  Does Red Bull qualify?
Hot or cold?Cold
Sweet or sour?Sour
Charmin or Cottonelle?Cottonelle, I’m all about the little ridges
Dog or cat?Dog
Running or walking? Or Cycling? Walking and Cycling 🙂
Road trip vacation or resort vacation?Resort vacation
Android or iPhone?iPhone
Sunshine or rainy day?Sunshine
Dinner out at a restaurant or a nice home cooked meal? Dinner out 
Doing the dishes or doing laundry? Laundry
Comedy or horror?Comedy
Fiction or nonfiction?Fiction
Cake or pie? Cake
Final question:
You’re in the waiting room about to leave after a follow up visit with your GI. Someone else is in the waiting room and they were just diagnosed with a chronic disease. They catch your eye and then ask you “How do I get through this?” 
What do you say?
In this situation I’d give them a couple pieces of advice.  First thing I’d say is to keep your sense of humor through the journey.  If you don’t learn to laugh (at yourself, especially) you’re going to lose your mind.  The second piece of advice I’d give is to be your own advocate.  Learn as much as you can, take your health into your own hands, and never stop asking questions.  You’re going to get through this.
Make Sure to Say hello to Jordan and follow his awesome advocate work on his social media accounts below. 
Facebook:
Instagram:
@The_Real_JMW
Snapchat:
@TheRealJMW
Twitter:
@TheRealJMW

Hope Warrior- Nicole

Cheers to another Hope Warrior Wednesday! This week our featured warrior is Nicole. Nicole is a sweet mom, wife and fellow spoonie who shares her faith and hope on her blog and instagram posts. Make sure to stop by and tell her hello, and find some delicious recipes on her website! 🙂 Thank you, Nicole!

What chronic condition or illness are you currently battling?

When I was 24 I was diagnosed with endometriosis.  However at the time my doc didn’t explain how it’s an autoimmune disease or how to help support my body.  So life went on and I lived in blissful ignorance.  At age 31 I started to feel my health crashing. I was drained in every aspect of the word, and had every single thyroid symptom in the book (at the time I didn’t realize they were thyroid symptoms).  I would cry to my husband, desperate to get back to normal and be the mom and wife I wanted to be.  Finally in my struggle to try to lose weight, I stumbled across Paleo.  Through the reading of blogs and listening to podcasts for how to live the paleo lifestyle, I kept hearing about Hashimotos.  I had every symptom!  I went in for my routine annual and begged my doctor to test my thyroid. Initially she only tested my TSH.  I persisted because it came back “normal”.  So she tested my antibodies and they came back slightly above the (again) “normal” range.  Thankfully this threw a red flag to her because she sent me in for a thyroid ultrasound. The results came back that I had multiple modules on my thyroid and it was enlarged.  She referred me to an endocrinologist.  This was truly the turning point in my health journey.  He did a biopsy of the nodules to rule out cancer, which thankfully it was negative for, but I received the diagnosis of Hashimotos.

Just recently I’ve been working on getting my hormones healthier and through this research I’ve discovered that I more than likely also have PCOS (polycystic ovary syndrome).  Though I can’t say for certain until I get the diagnosis from the doctor.

What do you remember most about the day you were diagnosed? Looking back, if you could tell yourself one thing about the diagnosis you were about to receive, what would it be?

I vividly remember the day I received the Hashimotos diagnosis.  Since I’d been learning about this disease the last few months I knew the negative connection between gluten and the thyroid.  I asked the doctor ways I could reverse Hashis and how to go about changing my diet for this.  I will never forget what he said in reply as he laughed at me… “No. No. Food has no impact on health.  The plan will be to let your thyroid die, then we put you on thyroid meds for the rest of your life.”  I sat there stunned.  I turned to my husband who seemed to have the same reaction as me. I shut down.  It seemed to me like I was one of those people in a movie where others are talking to them but the voices are muffled and they aren’t listening.  They zone out.  That’s exactly how I felt.  My husband and the doctor talked a bit more, though I have no clue what about.  We left and I drove home following my husband since he’d come straight from work.  I didn’t make it far before I had to pull over because I lost it.  I cried so violently that I couldn’t see the road.  I was so scared and had no idea what this meant for my future.  I knew the stats.  By Gods grace I regained my composure and drove the long drive home.  That very night I gave up gluten for good and became my own warrior.  Eased into Paleo and never looked back.

If I could go back and give myself some advice, I’d say “Trust your instincts!  You know your body well, listen to it on this journey!  Pray!!  Taking care of yourself isn’t selfish, it’s necessary for your whole family, because THEY NEED YOU TOO!”

What medications/treatments/surgeries/lifestyle changes have you gone through to manage your disease symptoms?

Whew! lol Where do I start?!  Since I fired my endocrinologist that day, I was going in blind and had to figure this out on my own.  The one thing I can say is that I am forever grateful to those that came before me and shared their story because through them I was able to find quality research to guide me.  There were a few supplements that it seems every hashis patient needs…selenium, zinc, a high quality multivitamin, vitamin D, and a B complex (especially because I have MTHFR).  I’ve also added in and taken out countless others over the last three years.  Currently I am taking naturethroid at a very low dose (subscribed by my PCP who practices a more functional med way).  I also take vitamin C, magnesium, strong probiotics that I rotate every few months, glutathione, and vitex for hormones.

A few of the lifestyle things I practice and enjoy are epsom salt baths (magnesium), yoga, lifting weights, and dry skin brushing.  I overhauled every body, makeup, and house cleaning product in our home as well since all of those can be massive endocrine disrupters.

The biggest proponent in changing my health has hands down been my diet though.  Since switching to Paleo most of my thyroid symptoms dissipated in less than three months.  I still get occasional flares from stress, accidental gluten exposure at restaurants and even traveling (but it brings me too much joy to stop traveling!).

You have some great creative recipes and food photos on your Instagram and blog. What inspired you to share what you have learned about food with others?

I initially learned about hashis through Instagram after finding Paleo bloggers who had it.  So I was inspired to share my journey as well in the hopes of paying it forward and helping others the way I was helped.  Eventually I started a blog which was more so about my emotions on what was going on than recipes.  As I started to get my happy back, I began to feel inspired to share my recipes on their too.  Instagram has been such a gift to me on this journey. I’ve made friendships with so many incredible warriors and learned so much about living a healthy lifestyle.

What are some of your other favorite things to do?

(favorite books, music, podcasts, hobbies, activities etc)

Oh goodness, there is so much!  I think my husband is sick of hearing me say “I was listening to this podcast and learned…”  I LOVE podcasts so much because I can work and learn at the same time.  If I’m not listening to podcasts then I have music playing.

I live in Michigan so in the summer I love to stand up paddle board, jet ski and go for walks with my family.  I have gained an intense love for gardening this year and am often seen chasing my 5 chickens away from my tomato plants.

I love to travel and have a mile long bucket list of places I want to see around the world.

I really enjoy lifting weights, doing yoga, and reading books of all kinds!

What is something you have accomplished that you are most proud of?

Being a mom is by far my proudest achievement.  Nothing can compare to it. I have two daughters, ages 8 and 11, and would gladly welcome many more if God wills it.

Who inspires you?

So many people on Instagram I see doing such amazing things to help others and fight for their own health all at the same time. They inspire me beyond belief.

In life as a whole, I am immensely inspired by Saints and the lives they lived.

What are some of your coping mechanisms for dealing with stress?

Pray. Pray. Pray. It is my ultimate defense against stress.  I can always tell when I haven’t spent enough time with God. My world seems darker and little things bother me that normally wouldn’t.  Another thing I practice is deep breathing (inhale and the stomach fills like a balloon, exhale and bring the belly button in to the spine).  Last but definitely not least is hugs from husband. Melts the blues away

What has been the best thing that has happened so far that would not have happened if you did not have your chronic illness?

My motto is “everything happens for a reason”.  Even with as hard as living with an autoimmune disease can be, I truly believe it’s been a blessing in disguise.  It’s made me overhaul my diet, my home and evaluate my priorities in life.  It’s a gift I give to my family at every meal, every breath of clean air in our home, and sip of filtered water they take.  More than anything I want to set them up for a lifetime of health.  Children’s bodies are fragile and it saddens me to see the way parents feed their children in our generation.  It will affect them for the rest of their life.

What keeps you hopeful?

Ultimately my faith in God is where I receive my hope for all things.  It’s also found in the joy of little things. A gloriously colorful sunset, a butterfly that floats in out of nowhere, a vegetable that I grew and prepared for dinner, and cuddles with my family all bring glimpses of hope that this world is really a beautiful place and joy can be found anywhere despite any difficulty.

Do you have a favorite saying, quote, mantra or song that you turn to when you need to flip your mood around?

Besides the quote “Everything happens for a reason”, I cling to the Bible verse “For nothing will be impossible for God.” Luke 1:37

My song addiction lately is Lauren Daigle “O’Lord”

Okay, time for rapid fire this or that:

 

Chocolate or Vanilla? Can I say both? Lol!  I looove good quality chocolate but also love vanilla in all things.

 

Coffee or tea? Hot coffee (black, decaf (Swiss water process, organic), with collagen peptides).  Cold iced tea.  

Hot or cold? I loathe being cold.  

Sweet or sour? Sour 

Dog or cat? I used to believe I was a cat person, and although I love our cat, my dog (golden retriever) holds a special place in my heart. 

Running or walking? Walking!!  I am so NOT a runner!

Road trip vacation or resort vacation? Resort all the way.  My husband has spoiled me with some really amazing trips.

Day at the beach or day hiking in the woods? Hiking in the woods (as long as there’s no ticks UGH!). But I do love the beach! 

Android or iPhone? iPhone all the way

Sunshine or rainy day? Sunny days

Dinner out at a restaurant or a nice home cooked meal? Since I do all the cooking, (and love it!) home-cooked meal but it’s nice to have a day off now and then too.

Doing the dishes or doing laundry? Laundry is less painful

Comedy or horror? Comedies forever.  If I’m watching a horror film it’s because I’m being tortured.

Fiction or nonfiction? 75% of the time I’m nonfiction. 25% fiction.

Cake or pie? Apple pie

Fruit or vegetable? Raspberries and lacinato kale 

Sunrise or sunset?  Sunset. But I’m an early bird lol 

Final question:

You’re in the waiting room about to leave after a follow up visit with your doctor. Someone else is in the waiting room and they were just diagnosed with a chronic disease. They catch your eye and then ask you “How do I get through this?” 

What do you say?

Faith.  Hope in God.  Even if you’re not a Christian, He exists and loves you more than you could ever fathom and He can use this trial to bring you closer to Him. You just have to allow Him to.  Even in my darkest times when I felt like I would never get better, when I was struck with anxiety, depression, anger, and only the tiniest shred of hope, God was always there.  It was me who had left, not Him.  God is good. So I had to learn to stop focusing on the bad and focus on the good in all things.  Whenever I’d be zeroed in on all the negative, I never felt happy. When I stopped doing that and would try to find joy in even the small things that’s when I started to get better.

Hope Warrior- Amber Tresca

Today I bring you, in my humble opinion, the guru of IBD (inflammatory bowel disease): Amber Tresca. Amber is an IBD advocate. She works hard to bring forth the facts about IBD, answer questions and support patients as the navigate the confusing paths that these diseases take us down. She does amazing work on her blog, podcast, twitter chats and all of the articles she writes. Amber is the real deal when it comes to advocacy, and I’m so honored to share a bit about her here. Thanks for participating and all that you do, Amber!

 When were you diagnosed with Ulcerative Colitis?

I was diagnosed with ulcerative colitis in the fall of 1989; I was 16 years old.

What do you remember most about that day? Looking back, if you could tell yourself one thing about the diagnosis you were about to receive, what would it be?

What I remember most about the day I was diagnosed was that everyone seemed to know the language of healthcare but me–the many questions from physicians and nurses when I was admitted to the hospital were completely foreign. If it were possible to tell my 16-year-old self one thing, it would be that the way things are today is not how they will stay.

 

In my opinion, you are the information guru for IBD. If you don’t have the answer, you usually can find a trustworthy resource! That’s pretty awesome. What is your favorite part about being an IBD expert?

My favorite part from being an IBD expert is being able to make a difference in people’s lives. There have been many instances over the years where I’ve been able to provide a key piece of information that helped someone with IBD alter their path in a positive direction.

What are some of your other favorite things to do outside of IBD awareness and education?

Outside of my IBD life, I enjoy movies, crafting, playing with my kids, and am an avid reader.

What is something you have accomplished that you are most proud of?

I’m proud of my most recent venture, with is the About IBD Podcast. Podcasting is not something that I had any experience with, yet I leaped in with both feet and my work has been well received.

 

Who inspires you?

I’m inspired by my children as well as the many IBD advocates and industry professionals that I work with in the IBD Social Circle.

What are some of your coping mechanisms for dealing with stress?

Stress is always a huge issue for anyone with a health condition and my stress relief usually involves spending a day away from work and in the kitchen cooking and baking, preferably for dinner guests.

 

What keeps you hopeful?

What keeps me hopeful is learning from the many researchers and practitioners whose daily work seeks to better the lives of people with IBD through research and the improvement of patient care.

Do you have a favorite saying, quote, mantra or song that you turn to when you need to flip your mood around?

A mantra that I’ve taken from one of my favorite books, Dune, by Frank Herbert, is called the Litany Against Fear. It’s quite specific to the book but it reminds me to have courage in the face of fear, because fear is transitory.

“I must not fear.

Fear is the mind-killer.

Fear is the little-death that brings total obliteration.

I will face my fear.

I will permit it to pass over me and through me.

And when it has gone past I will turn the inner eye to see its path.

Where the fear has gone there will be nothing. Only I will remain.”

Time for rapid fire this or that:

Chocolate or Vanilla?

Chocolate

Coffee or tea?

Coffee

Hot or cold?

Hot

Sweet or sour?

Sweet

Charmin or Cottonelle?

Neither! Seventh Generation

Dog or Cat?

Cat

Running or walking?

Running

Road trip vacation or resort vacation?

Road trip

Android or iPhone?

iPhone

Sunshine or rainy day?

Sunshine

Dinner our at a restaurant or a nice home cooked meal?

Dinner out

Doing the dishes or laundry?

Doing the dishes

Comedy or Horror?

Horror

Fiction or nonfiction?

Fiction

Cake or pie?

Cake

 

Final Question:

You’re in the waiting room about to leave after a follow up visit with your GI. Someone else is in the waiting room and they were just diagnosed with a chronic disease. They catch your eye and then ask you “How do I get through this?” 

What do you say?

What I would say is that you will get through this because you will not allow it to defeat you. How you feel today won’t be how you feel tomorrow or the next day because you’ll get your spark back, and you’ll find that it shines brighter than it ever did before.

 

You can find Amber at the links below! 

Facebook: https://www.facebook.com/ibdcrohns/

Twitter: https://twitter.com/aboutIBD

Instagram: https://www.instagram.com/about_IBD/

Pinterest: https://www.pinterest.com/aboutibd/

Google+: https://plus.google.com/+AmberTresca

About IBD Podcast: https://itunes.apple.com/us/podcast/about-ibd/id1228402052

Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703

Blog: http://aboutibd.com/ 

Hope Warrior-Callie

Have you ever come across an Instagram post and just thought, “YES! This is my language! Finally someone is speaking it.” Well, Callie at @riverandquill is this person for me. I found myself nodding my head, smiling, laughing, tearing up and saying OH MY GOSH YES to so many of her interview responses. She has an amazing talent for writing, and I think many of you will find her journey with chronic illness, hope, and grief very relatable. Grab a cup of tea or coffee and settle in to read my interview with Callie to below. Make sure check out her social media and then blog here as she writes about her journey with health and healing. Thank you for sharing your story, and filling others with hope, Callie!

What chronic condition or illness are you currently battling?

I have Interstitial Cystitis. It is basically a chronic bladder infection, but it is not due to bacteria, just a neglectful bladder lining.
What do you remember most about the day you were diagnosed? Looking back, if you could tell yourself one thing about the diagnosis you were about to receive, what would it be?
The day of diagnosis is one of two of the most terrible days of my life.  I walked into a room with what looked like torture device chairs, which in the end did live up to my predictions, and I sat through the most painful procedure of my life.  I peed blood for days afterwards, but I had a diagnosis.  I would take having another baby over that any day.  The hardest part was that no-one could offer any encouragement.  Immediately after the procedure, a nurse walked in with a death diet, and by that I mean, the most depressing diet I have ever encountered.  The IC Diet is terrible, and depressing, and it was the cherry on top of a devastating day.  Stretch someone’s bladder until it bleeds, then hand them a brochure with “no” signs through coffee, beer, and chocolate.  Yeah, I was ready to die.  I drove myself home, because I had no idea the procedure would be so painful, and collapsed in my husbands arms when I got home.  I hesitated to walk through the door though.  I wanted him and needed him, but admitting that I was forever different, forever the girl with the chronic disease; it just felt so foreign and I didn’t want to bring this alien back into my home.  It’s hard to describe to anyone who hasn’t gone through it, but suddenly you are someone else, and it’s extremely hard to deal with.
If I could have a little conversation with former me, I would validate the fear and the sadness.  Grief is most definitely something we need to go through when experiencing a chronic disease diagnosis, but I would also give loads and heaps and oodles of hope.  I would tell myself that although I now have a chronic disease, it does not change the person underneath all the pain.  She is still there.  She will cower in a corner for a while, but she will emerge.  I would tell her that she needed to take some time to grieve and some time to believe, some time to do things that brought joy, and time to just relax.  I would tell her she is enough, that she is loved, and that this isn’t the end.
(Note from Jacklyn: OH MY GOSH YES. All of this. on repeat)
What medications/treatments/surgeries/lifestyle changes have you gone through to manage your disease symptoms?
I have been to more doctors in the past couple of years than I would like to admit to.  I tried bladder installations at the very beginning.  They work for some, but they didn’t work for me.  I believe now that this is because my IC is hormonally driven.  I was breastfeeding my daughter at the time and my estrogen and testosterone levels were both very low.  No amount of medication was going to help me until my hormones balanced.  I didn’t know any of this until I started seeing a functional doctor last fall.  A functional doctor is an actual MD who not only looks at your symptoms, but looks into how your body is running in general in order to try to determine areas that it needs some help.  For example, my CoQ10 levels were the lowest he has ever seen in a patient, so I take that as a supplement now.  CoQ10 does a great many things, and is present in all of your cells.  It gives you energy, and keeping it in check keeps your cardiovascular system in check as well, so yeah, glad I figured that one out.  The most helpful supplement/therapy so far has been testosterone replacement.  Who knew that girls needed this, right?!  Apparently, many women’s natural testosterone levels drop after having babies, and mine was low and not coming up with regular exercise or a healthy diet, so we are supplementing and it is helping GREATLY!  I stopped taking it for a week, just because I am a momma of three, and hey, life is busy, and I hadn’t picked up the new bottle.  I flared for a week, messed up my period, it was crazy.  Other therapies and meds that have helped me include Elmiron, but I order mine through a pharmacy in California that is hundreds of dollars cheaper (most people pay $800 a month for this medication – it’s insane and wrong and a whole other blog post).  I also take Vitamin D, Desert Harvest Aloe Vera, Cystoprotek, Magnesium, and a very strong probiotic.  If our gut micro biome is off it can throw our entire body, and in my case, my bladder.  Physical therapy is another amazing treatment that I have used to help my symptoms.  It’s pelvic floor physical therapy, which I write about in my manuscript, and is quite the experience.  Who knew there were PT’s for vagina’s, right?  Now that I have totally thrown you, I will just continue like I have said nothing about vaginas or vagina therapy.  Relaxation and stress relief have been huge to my recovery, as well as believing in healing.  I just flared for the first time in months and even after my months of feeling good it was hard to believe I would get back to where I was, but I am getting there.  I know how hard this is to believe, but it is truly the first step to getting things under control.  I use essential oils, CBD, and other natural products to manage stress, but I also allow myself time to do things that I love: read, write, play, walk, whatever!

 I really love your writing on your blog and Instagram posts, you have great voice. What inspired you to start writing about your journey with chronic illness?

Thank-you!!!  Chronic Illness isn’t like getting slapped with a strep throat diagnosis.  It’s forever, or at least it feels like it is going to be.  The medical community lacks in their social-emotional support for patients, and this is something I felt that I had a responsibility to fill in for.  I’m not sure in what capacity, but I just knew I had to start talking.  The suicide rate in those with IC is 11%, whereas the national average is 3%.  Those mathematicians out there will note that this is triple, almost quadruple the national average.  I had suicidal ideations repeatedly after my diagnosis and up to a year afterwards.  I was a happy, well-adjusted person before.  The pain brings you to this panic filled place and it threatens to keep you there forever.  I knew how much it meant when people gave me encouragement that things would not always be so bleak and that’s what motivated me to start this blog.  I wanted to be the words that maybe didn’t bring someone completely out of despair, because the grieving is legit and needed, but I wanted to shine a little light down to them and at least get them on the first step toward believing they could get their pain under control.  Doctors don’t do this.  I should say, most don’t.  I have an amazing one now who absolutely does, but you can’t just tell someone they have a disease, give them a brochure and then walk away.  They need more.  That’s where I hope my blog can come in for some people.  I want to lead them to a healthy place, through encouragement and through resources.  No-one should ever feel as alone as many do with chronic disease.  I guess, mostly I just want them to know that I’m there with them.
What are some of your other favorite things to do?
(favorite books, music, podcasts, hobbies, activities etc)
I have always loved to write.  It is what helped me out of the depression brought on by IC.  So, I suppose my blog is as much a help to others as it is to me.  I also love to spend time with my family, going on adventures, which mainly involves walks, or playgrounds, but hey, you can find adventure anywhere, right?!  I used to knit before I had tiny people climbing on me all the time, but maybe I’ll do that again some day. 🙂  I also love to read.  If I could lose myself in a book every day and my kids would manage to stay alive, I would totally do it.  I like to think that I hike.  In reality I have gone on a trail once in the past few years, but, since this is my interview, I think I can just go ahead and say I hike.  I’m a hiker.
What is something you have accomplished that you are most proud of?
I wrote a manuscript.  It may be terrible, but I did it.  I am actually in throws of trying to find an agent, and that is a rough business, but in the end, published or unpublished, I did something I have always wanted to do, so, yeah, I’m pretty proud of that.
(note from J: THAT IS AMAZING. Congratulations!)
Who inspires you?
Others with chronic disease.  I see them going out and living their lives, despite their pain and their fear and I just admire them so much.  As far as celebrity inspiration goes, I would have to say Anne Lamott.  Her words always reach me.  It’s like they were written specifically for whatever place I am in, when I’m in it.  I’m also inspired by the beauty that surrounds me every day: my daughters giggle, flowers, the breeze.  It’s just inspiring to be alive and to be able to experience any of it. 
What are some of your coping mechanisms for dealing with stress?
Writing is huge! Also just going outside and getting away from my thoughts as much as I can.  Calling someone and crying until the world feels less scary helps too.  Also, lathering myself in essential oils is a new one.  Plus I smell good, so there’s that.
What has been the best thing that has happened so far that would not have happened if you did not have your chronic illness?
This has been the easiest question to answer, by far, no question.  Meeting my IC Sisters has been the best thing to happen to me.  About six months into my disease, another nursing mom from the ICNetwork support forum emailed me.  The support forum was terrible for me.  Too many people complaining and just in it, and I was sure I would never get better based on the state of all of them.  BUT, my friend Lucy made it worth being on there, as she and I connected and she then connected me to a group of 5/6 women who all have IC and all within 10 years of my own age.  Some of them were in remission, some of them were as miserable as myself, but we all had been through it.  They were such an encouragement to me, and continue to be, daily.  We talk via Facebook messenger basically nonstop.  The friendship we share is one that can only be experienced when you have a disease and they are the dearest of dear to me.  I joke that if we ever met in person we will probably just cry for a solid hour, taking pee breaks every few minutes.
What keeps you hopeful?
I was in remission for three months, and I am pretty sure I know how to manage this devil of a bladder of mine now.  I have hope because others have conquered, and I have too.  Life is still in front of me, IC or not.  It’s no longer my defining feature or lead role.  It’s just a member of the chorus.  Hardly even know it’s there most of the time.
Do you have a favorite saying, quote, mantra or song that you turn to when you need to flip your mood around?
Well, I suppose that would be smart, but not really.  I need one.  I usually just cry and loathe and then find a Bible verse, pray, and try to have a really successful internal pep talk.  Sometimes it works.  Sometimes it doesn’t.  I’ll be working on this one.
Okay, time for rapid fire this or that:

 

Chocolate or Vanilla? Chocolate but damn you IC, now I have to do Vanilla
Coffee or tea? Always coffee, but again, IC insists it only be a cup or two.  I used to drink pots
Hot or cold? Hot
Sweet or sour? Sweet
Dog or cat? Dog (but I love my cats!!!)
Running or walking? Walking. Duh. Walking.
Road trip vacation or resort vacation? road trip
Day at the beach or day hiking in the woods? Beach
Android or iPhone? iPhone
Sunshine or rainy day? Sunshine
Dinner out at a restaurant or a nice home cooked meal? Out
Doing the dishes or doing laundry? dishes
Comedy or horror? Comedy
Fiction or nonfiction? impossible – both
Cake or pie? pie
Sunrise or sunset? sunset
Final question:
You’re in the waiting room about to leave after a follow up visit with your doctor. Someone else is in the waiting room and they were just diagnosed with a chronic disease. They catch your eye and then ask you “How do I get through this?” 
What do you say?
Believe you can

Hope Warrior -Kristen Boehmer

It’s a new Hope Warrior Wednesday!

I’m so happy I get to share a little bit of Kristen’s story and how she copes with having a chronic illness. She’s a busy gal, but was able to answer a few questions. Make sure to check out her website Living Loving Paleo and her instagram @livinglovingpaleo for some mouthwatering food photography and her life with Crohn’s Disease.

Meet Kristen!

I was checking out your story on your website (I will link it here), and boy have you been on an unbelievable journey. I know you were young when you were first diagnosed with Crohn’s Disease, but do you remember how you felt when you received the diagnosis?

Being diagnosed with a chronic disease isn’t something that I could fullyunderstand as a kid, which in some ways, made it easier to cope with. My parents immediately took full responsibility for my health, but at the same time, I did have to grow up quickly.

Taking 96 pills a week at age 12 is a lot to swallow, no pun intended. What would you tell a pre-teen going through something similar right now?

I would tell a pre-teen that no matter what, they should never, ever give up. It may feel like your world is falling apart, but if you allow it, your illness can actually become your greatest gift.

It is really frustrating when I feel like some doctors are not hearing me. It sounds like you went through something similar. How do you advocate for yourself now?

I’ve found a practitioner outside of conventional medicine who really listens, and that’s made all the difference. Thankfully I’m healthy enough now that I don’t need any sort of outside intervention.

What is your current treatment plan? (Natural and pharmaceutical if applicable)

After spending many, many years on medications, I’m now able to control my disease completely through diet and lifestyle. I eat what makes me feel good and live a life that I love.

 Your website has lots of delish Paleo recipes. What inspired you to start Living Loving Paleo?

I wanted a place where I could share my journey (outside of social media) as well as my recipes, so a blog felt like the perfect format.

How do you balance working full time with managing your chronic condition and spending time with your family?

While I have Crohn’s Disease, it’s thankfully no longer something that I need to manage. I work from home and accomplish much of what I need to get done while my husband’s away at work (he works 48 hour shifts as a fire fighter), so that when he’s home, we can spend much of our time together.

You talk about the fatigue, waking up tired and going to bed tired when fighting infections and the ongoing battle an autoimmune disease fights with your body. Do you still have days like these? What do you to conserve energy?

My health is by far the best it’s ever been, so thankfully those days are VERY far and few between! If I do come down with a cold or the flu, I simply set everything else aside and completely focus on my health. My immune system is fully functioning now, so I’m very rarely sick for more than a couple days.

 We went to San Francisco on our honeymoon and feel in love with the city. I am so jealous that you get to live near a city with the best coffee and some awesome food options! Eating at a restaurant can be difficult for IBDers who are afraid or embarrassed to ask their food to be cooked in ways specific to their needs. Do you have any tips for handling these scenarios? 

I have a great dining out guide where I’ve shared all my best tips and tricks! It

can be found here – http://livinglovingpaleo.com/2016/06/15/tips-dining-

paleo/

I truly believe that our environment can play a huge part in healing. Do you have an area in your home that helps you gives you the hope you need to keep fighting? What does it look like?

I really do my best to keep my entire house filled with calm, healing energy.

How do you treat yourself when you want to indulge?

I get a mani/pedi or a massage and take myself out to lunch!

What are some of your favorite books and or music/podcasts?

I love reading and have too many books that I’ve enjoyed to list off. As for podcasts I love Balanced Bites, The Sessions With Sean Croxton and The Tim Ferriss Show.

If someone were to ask you to tell your story in one sentence, what would it say?

Although my journey hasn’t always been easy, it’s given me the most beautiful life I could ever imagine.

 Do you have a mantra or an image that you use to give you strength or encouragement?

I recently heard Tony Robbins talk about achievement versus fulfillment, and it really stuck with me. I don’t have a specific mantra or image, but I believe in filling my own cup up before I can give to anyone else. When I’m fulfilled and loving life, I put out my best work.

What are some of your hobbies and activities you enjoy?

Cooking, reading and being outside with my husband and dogs.

Where are some of your favorite places to travel?

Hawaii for sure!

 

Who gives you hope? Do you have any “Hope Warriors” that inspire you?

While my husband has always been my number one supporter, he’s taught me to love and cherish myself first, so I’ve become my own “hope warrior.”

 

Thank you so much for sharing, Kristen!  I’m so glad you’re doing well and enjoying a beautiful life. Love your story, and I’m honored to share it. 

Happy Wednesday Folks!

Hope Warrior-@chronicallyliving

Folks, I’d like you to meet Ellie. She’s a brave young girl who is facing any autoimmune diseases that keep her at home. She is currently unable to leave the house for long periods of time, even a trip to the doctor seems like a road trip across the country. But she doesn’t let this stop her from keeping a positive attitude and raising awareness for her diseases and many others.

Please read through Ellie’s story.

You can find her on instagram @chronicallyliving.

What type of chronic illness are you battling? I have Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Postural Orthostatic Tachycardia Syndrome (POTS) which is a form of Dsyautonomia and Irritable Bowel Sydrome(IBS). Together they produce huge variety of symptoms, some of the main being; fatigue that isn’t relieved by sleep or rest, chronic pain (joint and muscle, affecting all parts of the body), brain fog/cognitive impairment, nausea and other stomach problems, sleeping problems, constant sore throat and glands, feeling dizzy or faint, and many more.
 
What is the number one thing you’ve learned about yourself since your diagnosis?
Probably that I am able to deal with a lot more than I thought I could; I never expected to be in a situation like this but when you’re put in that situation you just learn to deal with it. 
When were you diagnosed?
I was diagnosed with ME/CFS in august of this year, and then with POTS and IBS in November. I have been suffering with symptoms since the very start of the year. 
What are your current medications/what lifestyle changes have you made to treat your illness?
In terms of medication: amitriptyline for sleep, pain and mood (currently reducing my dose), melatonin for sleep, domperidone for nausea (just about to switch to a new nausea med), fybogel for digestive problems, mebeverine for stomach cramps.tramadol and ibuprofen for pain,
Lifestyle changes: I’m mostly gluten free to help with my IBS, I try and follow a thing called pacing to make sure I don’t overdo my activity, and I take plenty of rest breaks during the day(Where i do nothing but lie there and listen to relaxing music)
How do you keep your mental health intact while dealing with the symptoms/changes of the disease?
I am on low dose antidepressant which possibly helps a bit, but mostly I try and focus on things I can enjoy and the little achievments every day. I’m also helped by being surrounded by loving, caring people who believe me and do their best to understand what I’m going through.
What do you struggle with most? What are you doing to overcome it?
I struggle the most with my fatigue, as it leaves me bedbound and unable to walk further than to my bathroom, and I sometimes can’t even manage that. To overcome it, I’m just having to do my best to keep my activity to a minimum to avid any further dips in energy level, and I hope that eventually I will be able to begin to build up my daily activity.
Any advice for newly diagnosed?
Try and keep your activity to a minimum-do half of what you are able to do! If you overdo it, your illness will only get worse and worse. And try and remember it isn’t necessarily a life sentence : people with ME, POTS and IBS do sometimes recover, and the majority of them experience periods of improvements, especially if you are young the chances of recovering are fairly good.
Rules to live by?
Do not overdo your activity. Love yourself and respect your limits. Don’t let other people tell you what you should and shouldn’t do. Don’t let people make you feel guilty for being ill. Always look for something positive in every day.
What does your perfect day look like?
At the moment, since I can’t leave the house I’d say a movie day with a few friends and maybe a bit of pampering time with face masks etc! 
Go to Snack when flaring:Probably a piece of dark chocolate  (I like 85%) because it doesn’t make me feel sick.
Favorite Author: Probably John Green! But I can’t read currently due to my illness.
Activity that lifts your spirits: Colouring!
Your philosophy/mantra that you’d like others to know about you: Make the best out of a bad situation.
What would you do with a million dollars? Give some to charity, some to my parents, buy myself loads of pyjamas!
Who do you admire? Everyone I see fighting their illnesses with such strength!
What is your mission? To raise awareness for invisible illnesses, especially ME/CFS.
Social media accounts? @chronicallyliving (instagram)
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