Hope Warrior- Kenzie

Featured by flareuphope

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? 🙂

Hope Warrior-Jordan Wilson

Featured by flareuphope

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:

https://www.facebook.com/jordanmichaelwilson

Instagram:

@The_Real_JMW

Snapchat:

@TheRealJMW

Twitter:

@TheRealJMW

Hope Warrior- Amber Tresca

Featured by flareuphope

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:

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

Featured by flareuphope

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

The Paleo Partridge- Hope Warrior

Featured by flareuphope

Thanks for tuning in this Wednesday folks!

Have you met the Paleo Partridge? AKA Martine? She is an amazing lady who creates some delicious AIP recipes to help ease her IBD, and makes many other tastebuds happy as well! Martine battles Crohn’s Disease, another inflammatory bowel disease that can cause some nasty pain and symptoms. But she’s a warrior and fights it with a positive attitude and is super relatable in her posts. She’s also been very encouraging to me personally as I battled my last flare, and her support was/is so appreciated still. Check out her website www.thepaleopartidge.com . You can also find her on instagram posting mouth watering dishes and gorgeous shots of her travels @the_paleo_partridge. Get to know the Paleo Partridge below! Thanks for answering some questions for me, Martine. You’re the best!

What is the number one thing you’ve learned about since your diagnosis?

I’m stubborn, doggedly so. This can be a weakness as much as it can be a strength, and I realize that while being obstinate about certain things-like your health-can bring great outcomes, it can also become a negative force. So it’s very much a process. (haha! Just ask my near and dear). I will say, though, I’m so proud of the determination I’ve exercised when it comes to my physical, mental and emotional wellbeing-I’ve made leaps and bounds progress and feel healthier than I ever have since my diagnosis of Crohn’s Disease.

When were you diagnosed?

I was diagnosed with Crohn’s Disease at 15. Goodness! It’s hard to believe it’s been a couple decades since that diagnosis.

What are you current medications/what lifestyle changes have you made to treat your IBD?

I currently take Humira 40 mg every two weeks as well as on-and-off Cipro and Cortifoam (a rectal steroid) for stubborn perianal Crohn’s. I started following a paleo lifestyle about eight months ago and implemented the autoimmune paleo (AIP) protocol four months ago with some unsuccessful attempts at reintroductions of eggs and nuts. So now I follow AIP for the long haul, and that is A-OK by me because I’m feeling fantastic.

For some people, medication is enough, but I’m not one of those people. On conventional treatments but without paleo and AIP, I struggle with abdominal pain and cramping, painful abscesses that drain causing fistulas, chronic anemia, zero energy, joint pain and horribly high inflammatory markers.

I’m so grateful to have found out about AIP because it eliminates all of those horrible symptoms. I don’t experience the constant problems with abscesses, and my blookwork has improved so much. I’m especially excited about consistently keeping my C-Reactie Protein (a sensitive inflammatory marker) in the normal range. I’m also ecstatic that my iron levels recently came back up on their own without the need of an infusion.

(THIS IS SO AWESOME TO HEAR!!)

How do you keep your mental health intact while dealing with the symptoms/changes of the disease?

Looking after my emotional and mental wellbeing has been the most challenging aspect of having a chronic illness. And even though I’ve been battling autoimmunity for so long I’ve only recently made progress in maturing my heart and mind.

About a year ago I found a Certified Hakomi Therapist (CHT) and worked very hard with her for several months in order to learn to love all of me, cranky colon included! I spent years loathing the part of my body affected by Crohn’s which means I spent those years actually hating a good part of me because I viewed the diseased part of my body as an invader, a betrayer and a monster. My therapist helped me learn to nurture and love my large intestine, which led to an incredible inner peace and calm as well as a feeling of wholeness, which had been missing since my diagnosis as a teenager.

What do you struggle with most? What are you doing to overcome it?

I still struggle with keeping my emotions in check, specifically I fight against negative thought patterns and anxiety related to the daunting permanency of an autoimmune diagnosis and the trauma of bad (and sad) memories related to suffering with this disease.

In order to keep all of that in check and not slip back into my old habits of self-loathing, I maintain a regular practice of yoga and meditation. The movement of body and mind augmented by breath is tremendously therapeutic and calming; it helps me regain focus and not allow that antagonism between body and mind emerge again. I’m so grateful for my practice of yoga and meditation; the practice has changed my life and I don’t know where I’d be without it.

Any advice for the newly diagnosed?

Hold your head up high. Don’t let IBD or any disease rob you of your self-worth. You are an amazing human being! Be proactive. Educate yourself. Work with the medical professionals to find a treatment-conventional, alternative, or both- that works best for you.

Rules to live by?

Never let the disease define you, you are so much more than the diagnosis. Oh, and prioritize sleep-get your eight hours, kids! 🙂

Quote you turn to when you need to be uplifted:

Hmmmm….this often changes, but I usually write down an affirmation for the month on a sticky note and put it on my computer. This month’s affirmation: “Your dream doesn’t have an expiration date. Take a deep breath and try again.” I love that! It keeps me focused and hopeful.

Music/Song:

Anything by Vampire Weekend- I totally dig every single track on every one of their albums (yep, I’m a fan-girl). Also, can I just say Stephen Paige (formerly of Barenaked Ladies) has the most awesome voice ever, and I crush on him regularly.

Go to Snack when flaring:

Roasted chicken and well-cooked mashed carrots with a big dollop of coconut oil, yummy cozy, soothing, low-residue comfort food.

Activity that lifts your spirits:

Yoga, yoga, and yoga. Meditation. Also dancing to a good beat! 🙂

Your philosophy/mantra that you’d like others to know about you:

I like to remain curious and thoughtful about the world because if you’re bored, you’re boring. And that’s just not cool.

Come Walk With Me

Posted on September 5, 2017 by flareuphope

When I woke up from the anesthesia after my colonoscopy in 2013, I was told that I had Ulcerative Colitis and that there was no cure. I was told there were treatment options available and we would discuss them next week.

And that was it.

I wish that there was not any more IBD diagnosis. Unfortunately, it is becoming more prevalent and pediatric cases are increasing as well. Every year 70,000 people are diagnosed with IBD. Let’s give these people some hope. I recently found out that the office I used to seek treatment for my Ulcerative Colitis will not hand out the new patient packets for their IBD patients. Free resources that they won’t utilize. This is unacceptable.

was left to my own devices to search the internet and social media trying to figure out what the hell was happening with my body. I was given very little hope and a whole lot of fear. At the time, there were less than 100 hashtagged #ulcerativecolitis posts on Instagram. Now there are over 127,000.

I don’t want anyone to ever wake up to those words again and be left to read the worst of the worst on chat forums on Google. There are so many resources available now, and so many treatment options that remission is possible if you have the right care team and find what works for you. This is why I walk for the Crohns and Colitis Foundation. Come join me on Sunday, October 1st at 1pm at Hawk Island (1601 E Cavanaugh Rd, Lansing, MI 48910) and take a walk with me.

Or if you can’t make it, if you would consider donating I would greatly appreciate any contributions to my team fundraiser.

Thank you for supporting me. I hope to see you there!

Hope Warrior- Nicole

Posted on August 16, 2017August 16, 2017 by flareuphope

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:

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.

How to Enjoy Your Wedding Day When You Have A Chronic Illness

Posted on June 4, 2017June 2, 2017 by flareuphope

I’ve received a lot of requests for this post over the last year, and figured our first anniversary would be a good time to answer those questions. Here are my top 5 tips for enjoying your wedding day despite a chronic illness.

Make time for yourself.
Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography

The morning of our wedding was absolutely gorgeous. I spent some time alone in the morning before everyone arrived at the house doing yoga, sipping on a cup of coffee and writing a letter to my soon to be husband. (Instead of sand or candles, we decided to write each other a letter and to put it in a box together to open on our first anniversary. Every anniversary after we will write another letter and open the one from the year before.) I watched the sun rise over the river, wrote in my journal a bit and basically gave myself a few moments to just be.

Eaton Rapids Wedding Photography - Millers Dairy Farm - Phil Black Photography — Eaton Rapids Wedding Photography – Millers Dairy Farm – Phil Black Photography

I knew that if this short hour to myself would likely be my only alone time, and I savored those moments and gave my body some well deserved self care and relaxation. It really helped me get present for the rest of the day and to make sure I was focusing on what really mattered. This step is important throughout the wedding planning process also. It can be so challenging not to get wrapped up in the pinterest boards and the details and trying to make everyone else happy that you forget about yourself and to pay attention to what you need. When you’re fighting against your body, you have to listen to what it says while it is whispering instead of waiting until it is screaming at you to stop and make a change. Make it a habit to make time for yourself.

2. Surround yourself with people who lift you up.

Ain’t nobody got time for negativity. I’m so blessed to have the most amazing tribe of girlfriends who all bring their own unique character traits to the table. My girls balanced me, kept me grounded, supported me and kept me smiling. My husband’s guys kept me laughing and everyone was troupers as it started to rain moments before we were about to walk down the aisle.

My family that day was amazing. My dad particularly went above and beyond to make sure everything was as it should be and that everyone was having a great time. We were overwhelmed by the love and generosity by every guest and were surrounded by love all day.

I know that not everyone has this type of environment or support systems. If this is the case, consider who you really want to be surrounded with when you make the biggest promise of your life. What kind of energy do you want to bring to your day? Physical energy is flaky with autoimmune disease, and I find that when I’m surrounded by people who are at a lower vibration (or who don’t enjoy life), I lose zest.

Invite the people who bring light in your life. Make them a part of it. Don’t feel guilty if you don’t invite your coworkers dog-sitter or your mom’s cousin’s kids that you haven’t met, ever. This is about you and your husband and who you love, and who loves you best. You won’t regret surrounding yourself with awesome people, you might regret inviting Debbie Downer.

3. Put someone else in charge on the day of.

Whether you hire someone, loop in a friend or family member, or get the DJ to take over, get someone to take the lead on the big day.

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My best friend from high school was my hostess with the mostess, and even while pregnant she took charge and smiled the whole time. My cousins were in charge of pouring champagne, and my stepsister served drinks with the help of her friend. My in-laws were in charge of clean up the next day. “People want to help you, and you should let them,” was the persistent advice of my future mother in law.

This was probably the hardest advice that I had to take. I’m big on “No thanks, I’m good,” and can handle everything on my own. I know I can handle it, but sometimes you just shouldn’t have to. Particularly on days like today where the celebration is about you. Pass the torch and let someone else take over making sure the centerpieces are all set and that the guys have their boutonnieres and to make the decision on whether to continue the ceremony in the rain or take an hour to move everyone inside. This is your time to enjoy all the things you created, not to think or stress.

4. Whoooosahhhhhh

Breathe. And be grateful.

Not everything is going to go exactly as you planned.

And those moments are the best ones. Let go of expectation, and just enjoy every moment for what it’s worth. We had the most relaxing morning at my home getting ready, and all of a sudden I was supposed to meet my future husband for our first look in 15 minutes and my makeup wasn’t done and I wasn’t dressed and we had taken zero bridal party pictures and everyone was asking if I was okay. I felt myself rushing and getting tied up in freaking out for a minute and then took a breath and remembered that the show can’t start without us. We’ll have plenty of opportunities for pictures, for everything little. We’re getting married today. I’m alive. Nothing else really matters. So I took a deep breath, let it go, and went back to enjoying myself.

Things are going to happen that you don’t expect or maybe didn’t want to happen. But in the end, these moments will be the best and you’ll look back on them again and again throughout the years.

You might cut your foot open 5 minutes after wearing your shoes and have to change into flip flops right before you walk down the aisle, but at least you’re comfortable.

It might be sunny until the moment you have to walk down the aisle and then it may decide to rain. But you’ll get the greatest picture with your dad in an umbrella.

You might not get all of the pinterest-worthy golden hour photos you anticipated, but you’ll have some hilarious moments with the bridal party as you are stuck in an old ice cream parlor.

The best man might swear in his speech and it may go on for a while, but you will laugh and it will be one of your favorite memories and something that will be talked about forever.

The flower girl and ring bearer might not want to walk down the aisle. But they are absolutely adorable so it doesn’t matter.

The dog might follow you everywhere all night and even interrupt the daddy-daughter dance, but you’d rather have him there with you than not at all.

Those unplanned, unintentional moments are the best.

5. Pay attention to your hands.

Weird advice, I know, but hear me out.

You will look at your hands every day of the rest of your life. Likely they’ll now have a ring on the left hand to help you remember this day, but if you focus on your hands, you’ll remember more of the moments.

With chronic illness, our hands often go through a lot. They are constantly being washed to prevent infection, sometimes they are being poked with an IV for medications, and sometimes they are squeezing or clenching in pain. Our hands hold a lot of memories. Having good ones when you have to go through something tough can make it a little easier. Here are some of my favorite memories:

I think about the mimosa I held and the piece of turkey my future cousin-in law handed me while my makeup was getting done.

My hand tapped on my future husband’s shoulder when we met for our first look.

My hand gripped by bouquet that was made by my cousin, wrapped with my great grandmothers brooch she wore to her wedding. My fingers touched my necklace that was made from diamonds from my other great grandmothers ring.

My hand linked through my dad’s arm as he walked me down the aisle.

My hands met my husbands as we stood in rain, looked into each others eyes and stated our vows.

My hands were lifted as we were married and ran together down the aisle out of the rain.

My hands wrapped around my friends and family as we laughed and took pictures.

My hand was covered with my husbands as we cut our cake.

My hand held a glass of champagne as we said cheers, and held the hands of others as we prayed.

My hands wiped away tears as both sets of my grandparents danced as they shared the dance for the “longest married couple.”

My hands held more hands as we all danced and laughed and danced.

And most importantly, my hands were held, by my best friend, my forever partner in life

and were promised they’d always have another to hold.

My World IBD Day/Birthday Wish

Posted on May 19, 2017 by flareuphope

My birthday wish this year is not for a cure for IBD.

This year, I’m asking for something that might be much harder to accomplish: better care for patients.

My wish is that no one ever wakes up post colonoscopy to be told:

“You have a disease with no cure, come back in two weeks.”

Instead, I wish for an IBD army of advocates to be in every hospital, with arsenals of accurate information and resources they are ready to provide to that new patient so they are filled with hope instead of fear. Let’s avoid the Doctor Google search and arm patients with the facts right from the start.

I wish for mental health care to become a standard component of the IBD treatment plan. When a patient feels isolated, lonely and full of anxiety at the thought of even leaving the house, it is hard to feel better or to heal at all. I wish we would teach coping skills and connect patients with mentors who can relate to their experiences. We must have the tools to fight IBD together and find ways to work, have relationships and (most importantly) enjoy life again.

I wish for patients to be seen as people instead of dollar signs and numbers. I want to break the communication barrier between the front of the office, the patient and the doctor. Let’s celebrate the nurses and doctors who empathize, and teach the ones who don’t. I want two-ply toilet paper in every hospital bathroom, and ear plugs and eye masks to help patients rest. Let’s stop with the 4 am blood draw and focus on the patient who needs rest in order to heal.

I wish for prednisone to only be prescribed when absolutely necessary. I want patient care to move on to better alternatives for treatment that don’t cause such long term damage. We must educate about alternatives, and that surgery to remove an intestine is not a cure. We need to talk about life after surgery, about ostomy bags and j pouches and remission, and how the fatigue never goes away.

My wish for World IBD Day is that we connect with one another, with pharmaceutical companies, hospitals and GI offices all around the world. Let’s share our stories and compare what is working and what needs to change. I wish for those changes that will improve the lives of patients and caregivers and for those that will give a little hope to the newly diagnosed. Let’s make a change and spark some hope globally.
Happy World IBD Day.

Hope in a New Infusion Center

Posted on April 9, 2017April 9, 2017 by flareuphope

Good morning!

I’m writing to you from my Lazy Boy chair. My dog is under my feet and the cat is to my left contemplating walking over my keyboard. I have a cup of yogi tea this morning, Blueberry Slim Bliss Green Tea to be exact. So yummy. I just finished a delicious breakfast of leftover gluten free pancakes topped with a ton of strawberries and maple syrup. My husband made a huge batch of the GF pancakes yesterday, and we finally got the recipe right where they taste like real pancakes, not biscuits. Today mostly though, I feel relief. This last week was a struggle, and I’m ready for a new week with a fresh start. I love Sundays.

I had my remicade infusion on Friday, finally, so I slept about 11 hours on Saturday night. I woke up yesterday morning ate breakfast and then went back to bed for another 3 or 4 hours. It was a slow day, and I didn’t do anything productive but rest and allow the medication to do what it is supposed to do. I’m feeling better today. Not a ton of energy, but I don’t feel like I need to take a nap right now.

If you don’t follow me on Instagram (@flareuphope) or Twitter (@flareuphope), you probably don’t know the trouble that I went through over the past week to get this remicade infusion. I post in Instagram the most often out of all of these outlets. Anyway, I’m sharing this because it’s not an example of patient care, and it really taught me the need for patients to advocate for themselves, and to find new ways when you can’t break through the bureaucratic tape. Also, make sure to call a week before your infusion if they don’t check your order until you arrive. If there is a mistake or something is missing, they might not catch it until you arrive for your appointment, and at that time there is likely not much you can do to get it resolved. Even if it is a standing order that has been used previously, that doesn’t mean it will be okay the next time. If you are concerned at all or don’t feel confident with the center, call ahead, double check the order and make sure it is good to go before you get there. I don’t think this is something a patient should have to do, it is something that should be reviewed ahead of time and it is not the responsibility of the patient to read an order that they have no training in reading. However, if they do find an error, they cannot “unsee” it and it is your care that gets put on hold. You have to advocate for yourself because no one is going to do it for you.

As much as I can avoid it, I will no longer do business with the hospital due to the lack of care I have received. It is a huge hospital in this area, and my PCP is affiliated with them. I will continue to see her because she’s my biggest supporter of my care, but I will not see this hospital for any other care beyond that. There was nothing she could do in this situation aside from make sure my complaint got to the right department and hope that change is made so other patients don’t go through this.

We are now driving over an hour away for these infusions. It’s not convenient, but at this point the level of care outweighs the distance. My new infusion center is at U of M, and my GI is there as well so if there are any issues ever, they can page her or the on call doctor and get an answer right away. They also read the orders before you arrive so it is ready when you get there and any questions are in the process of being answered. It is professional and patient centered. They way it should be.

Here’s the letter that I wrote to my primary care doctor about the situation that had occurred.

Hi Dr. *****,
I’m sorry to have alarmed you with the panicky message. I was having an anxiety attack and you were the only person I could think of who might have some pull to fix it at the time. I know now that there is not anything you can do but perhaps you can report this situation to the right people to make sure it doesn’t happen to someone else. This was not patient care and puts me at risk for a flare.
On March 17th, 2017 I called and scheduled my regular Remicade Infusion for 5pm on March 31st. I have been getting these infusions exactly every 8 weeks for almost 3 years. I have never missed one, I make sure to schedule the appointments with enough advance time and I arrive to my appointments early with all orders on file and labs completed as requested.
On March 31st I arrived at Sparrow Infusion Center at 4:50 for my appointment. I was given an ID bracelet, lead to my room and my vitals were taken. I settled into the chair with a cup of hot tea and waited for the nurse. At 5:20, I was told that my standing order, the one that has been on file for the last 6 months and that I have received 3 infusions with prior, had a problem. The problem was on the very last line, where it stated “IV filter every 8 weeks X 1 (term).” It was missing the word year in place of term.
The nurse explained to me that they were being audited at the infusion center and could not use this order as it stands, even though it had been used in the past 3 infusions exactly as it was with no issues or questions. I did have my new order, the only difference being the amount of fluids I received afterwards. My new order was supposed to be used for the next infusion, but was dated in time for this one so could still be used.
The director, Dr. XXXX who must approve the new order had not been reachable since 1pm, and as it was now 6 pm on Friday, I was told there was nothing I or they could do to resolve this situation, there is absolutely no one else who can approve the order but Dr. XXXXX. I asked Nurse XXXXX to check with her manager and explained the building of antibodies, and she did, but they said the manager couldn’t even approve it, approval had to come from the director. I asked if I could come in tomorrow, she said no. At the very earliest it would be Monday but that was not likely, as it took 72 hours to get new orders approved, even with these circumstances where I was not at fault.
When I asked why this had not been caught earlier so that this situation would not have occurred and it could have been resolved, XXXXX stated she did not know but I could let Patient Services know my experience. I asked why this was caught at 5:20 instead of prior to my infusion and she said there hadn’t been time to review my order before I arrived.
I left 2 messages with the manager of the infusion center hoping that I can get in on this Friday as I cannot afford to miss three days of work this week to get this infusion, I get them on Fridays because I need 2 days to recover. I called the infusion center on Saturday and spoke with XXXX who confirmed there is nothing anyone can do, they DO NOT have a contingency plan in place for new orders and mistakes, and there is no back up person who can sign new orders, and only schedulers can set up new appointments and they are not in until Monday.

I called that infusion center twice last week and left more messages, and have yet to hear back from anyone. After the most recent phone call, I had enough and called U of M. I was able to get the first available appointment on Friday, and everything went smoothly aside from a blown vein, but that wasn’t their fault.

I’m hoping that the patient centered care will continue with this new spot and that the other infusion center will make some changes. I hate to think of anyone else going through this.

If you made it this far, thanks for reading!! I appreciate all of your support while I was going through this stressful and infuriating time fighting for my medication. How do you advocate for yourself in situations like this? Comment below or message me on Instagram or Twitter and let me know your tips. Have a great week!

Hope in Movies without Popcorn

Posted on March 19, 2017March 19, 2017 by flareuphope

Good morning friends. No smoothie to share today as my husband is still sleeping and I didn’t want to wake him with a roaring blender. I do have a cup of Tazo Earl Grey tea sitting here though. I love the smell of Earl Grey. That hint of lavender is delicisou Do you have a favorite kind of tea you’ve been drinking lately? I’m always looking for new ones to try.

I still don’t think I am recovered from daylight savings. Monday was great, and it all went downhill from there. I’ve missed my morning yoga practice every day. Just can’t quite wake up out of the fog. It could be this weather too. It’s been a winter advisory pretty much all week, grey sky, sleet, snow or ice. Shmarch. 2qqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqqsw

That was a hello from Jojo the Cat. She’s also been a devil to deal with in the mornings and wakes up about an hour before dawn encouraging everyone else to get up and greet the day with her. Even with a full bowl of food, she is a morning person on steriods and just wants you to wake up, wake up, wake up! I should just start getting out of bed when the animal alarm clock wants me to instead of dozing in and out of dreams for another hour. I’m just so tired. The fatigue never goes away.

When I’m done here, I’ll be working on my grocery list and will try to head up to the market before everyone else and their brother get there. I love going to Horrocks, it’s a local farmers style market that we have here. They sell delicious varieties of fresh produce and locally sourced meats as well as other items from area bakeries. And they have free coffee. Can’t beat that.

After groceries I’m going to see Beauty and the Beast with my Aunt and cousin. I’m not much of a movie goer these days, but I loved the cartoon and I’m really excited to see the live version. Going to a movie is one of those situations that revolve around food, and I just have a hard time getting excited about those anymore. Movie theatre popcorn may be the one food item I miss the most post UC that I can’t find a replacement for. The smell, the mouthwatering buttery salty flavor..mmm. My college roommate and I used to go to the movie theatre just to get a bucket of popcorn and then go home to watch our own movies or shows. It was my favorite snack.

Digestive diseases aren’t usually a fan of the little kernels however, and my Ulcerative Colitis is completely against it. So, I’ll probably be smuggling in some coconut chips and maybe I’ll find some corn syrup free gummy bears I can slip into my purse. Living on the edge and smuggling snacks.

It is amazing how many situations in our culture revolve around particular meals or snacks. This has been a huge adjustment for me in coping with this disease, finding other foods or finding other ways to celebrate. I know it can be much harder for those with feeding tubes or other illnesses, and I’m lucky I have foods that I can eat. Change is difficult, and watching others not have to make those changes while you do can lead to a pit of self despair. I try not to go there and just make a decision to find a new way to enjoy it. Like today, for example. I could be jealous of the people with giant buckets of popcorn that surround me, but instead I’ll choose to be grateful for the time spent with my aunt and cousin, and to look at this opportunity as a blessing instead. It helps me to reverse the negative thought process towards gratitude. Do you come into these kinds of situations? Try it out and let me know what you find happens. Or if you have any other tips for those food centered holidays and gatherings.

Enjoy your Sunday. 🙂

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