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- 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

Gratitude 

My husband and I are taking off for Thanksgiving weekend and exploring the Upper Peninsula. Our car is loaded up with snacks, snowpants and blankets. The dog is curled up next to me in the passenger seat and I’ve got a thermos of coffee still hot from 6 am. 

I have so much to be thankful for this year, and in the spirt of Thanksgiving I’ve spent the last month trying to make myself more aware of those things. It is so easy to get wrapped up in what isn’t going as I had planned and to forget about what I’ve been blessed with. 

I’m taking this weekend away from social media, away from blogging and away from it all. Disconnecting in order to reconnect with what is truly important. 

I hope you all have a wonderful Thanksgiving holiday and that it reminds you to stop for a moment. Stop worrying, rushing, stressing, wasting and just be in the moment. Be with the people you love, in spirit or in person. Look around you. Notice the smells, the sounds, the temperature .  There is good stuff to find, I promise. The holidays can bring out some of the worst in us sometimes, but try not to let the pressure the season brings steal your joy. Stay focused on the good. Enjoy yourself. With chronic illness we don’t always know what’s going to come next, and life sure isn’t easy. Choose to make the most of it. Choose to be grateful. Choose to find hope in those stressful moments. 

Have a wonderful weekend. Thanks for being a part of this community  

Health Activist Writer’s Month Challenge- Day 14

Oh boy. Please keep in mind that this is a rant and ramble and if you’re easily offended, just skip this entry.

Diving right into it, the atmosphere on social media, Twitter in particular, has totally bummed me out lately. I don’t know what is about having 140 characters that causes people to just complain and attack and complain some more.

It sucks the life out of me and makes me not want to be a health activist in the first place, and makes me question if I want to keep writing.

There’s a ton of false information out there, and people retweet the click bait headlines without bothering to read the actual article and then are attacked for retweeting it and it just turns into this argument of one chronic illness person who was simply trying to share some good news, or what they thought was good news, to an attack.

Or someone shares their experience and gets shamed for it.

Or someone shares their political views and gets blocked by everyone else.

Or someone complains about the way one disease gets treated over another. Or one persons treatment choice over another. Or gets attacked for not knowing something about their disease.

It’s like we’ve forgotten to be humans. We’ve forgotten how to support one another and can only compare the bad stories.

It gives me all the ill feelings.

When I first came to Twitter, I found a community, a place to relate to people who were experiencing the same disease that I had, and place for support, for laughs, for encouragement.

It’s been a while since I have felt supported out there, truthfully. I’m not saying the advocates themselves aren’t doing a good job. Most of them are and I’ve been lucky to meet some them and feel supported by them in person or on other social media outlets. What is it about twitter that has changed where this is so hard to find? Are the people who are having a good life just not sharing it because they are too busy living it? Or has Twitter just become the place to complain about your life, and it’s not a spot to find support any longer?

This might cause some ripples, and I really am not trying to point anyone out or say that Twitter isn’t helpful. I’ve met some of my favorite health advocates out there. I’m just saying what has come across my feed recently, and it makes me sad. I’ve muted a lot of people lately, and I’ve added accounts that promote positive messages.

I’m certainly not saying that everyone has to be happy all the time. It’s important to share your truth, but that doesn’t mean attacking others for their experiences and it doesn’t mean every post has to be droopy and dreary, or every post has to be sunshine and rainbows. I just miss the rawness and hopefulness of it. Where’s the encouragement and laughter?

I’m ready for Tuesday because I’m not going to get sucked in to the complaining and attacking that occurs on social media, and I’m not going to let determine my outlook anymore. I’m not going to contribute to the divide. I am going to continue to promote my own message of health and positivity, and continue to share my story authentically and offer support and encouragement to anyone who accepts it.

Gratitude Challenge Day 9- Quote

R.M. McNeil (my grandma)

My grandma said this to me a few months ago and it has stuck with me as a mantra for my life. With everything that’s going on in the world, giving back and giving an hand up or a hand out is important, and it’s a value I hold dear. These words remind me to be kind and generous and helpful, whether that be with my time, words or dollars. My grandmother has taught me a lot over the years, and I’m so grateful for her heart and the influence she has had on mine. 

Gratitude Challenge: Day 8- Hero

I don’t think I could write a post that named everyone I felt was my hero.  I am constantly inspired to be a better person by my family, my inner circle of friends and my husband. For this purpose though, I’d like to take a little bit of time to talk about the people I have met the last few months.

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I’m honored and humbled to have been surrounded by these amazing and strong people at patient panels recently. At each panel, there were about 3 out of the 16-17 of us that had not had any surgery. Almost everyone else had had their colon removed and now had a jpouch or were in the process of having the surgeries. Everyone had their own ulcerative colitis story to tell, but more importantly, everyone was there because they wanted to make changes and improvements for other patients.  There were laughs, tears, hugs, debates, and a passion for improving the quality of care and treatments for this disease. There were friendships built, connections made, ideas sparked, and mostly…hope resurfaced. There are people missing from these pictures, some that weren’t at the conference and some I couldn’t get a selfie with but you all know who you are, and I’m so grateful for all of you.

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There’s only one colon in this picture, but a whole lot of love. 
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My favorite ninja, and my first IBD friend. 
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This girl is so sweet. 

Health Activist Writer’s Month Challenge: Day 4, A letter to my Newly Diagnosed Self

Sorry for the delay, I was away for the last two days participating in a patient panel for Ulcerative Colitis and I could not get the internet to work on my phone so just had to wait til I got home to write.

Day 4: Do you remember the day you were diagnosed? Perhaps you were scared, felt alone and surely you had tons of questions. Write a letter to yourself for the day you were diagnosed, knowing all you do now.

Dear Self:

By now you are probably coming down from the anesthesia and are realizing that while you finally have a diagnosis of Ulcerative Colitis, you have no idea what that is. The doctor told you to go to the internet to do some research, and I am here to tell you that there is a lot of scary stuff out there, so be careful and cautious about what you read. Start building up a support team, right now. Make sure you have a GI you can trust, a primary care doctor who stands up for you and supports you, a yoga practice that grounds you, and family and friends who will not let you down.

This is going to be the hardest thing you will go through in all the years of your life so far. Your life is going to change. There are going to be lulls and uproars and pits of despair and highs of gratitude. Hang on. You will find a treatment that works for you. Do not despair when something isn’t going right or nothing seems to work. You will find what works for you. You will be sick, but you will heal, and you will have a new appreciation for the good days that you do get. A huge appreciation. Learn coping skills and stress management.

Get on Twitter and Instagram. There are people out there who know exactly what you are going through and they will be some of the best people you meet in your life. Hold them close, they will be huge resources and sources of inspiration for you right when you need them.

This disease is individualized. Don’t judge others for their treatment plan and don’t compare it to yours. Find what feels good for you. ADVOCATE FOR YOURSELF. If something doesn’t feel right, speak up. This is your body. These are your veins. You know yourself best and you have rights.

You are not alone. Life may not be the same, but the new life you get is still pretty damn awesome. Don’t let go, keep fighting and get involved with as many opportunities as you can to raise awareness and change the way chronic illness patients are treated.

You can do this.

 

 

The Health Activist Writer’s Month: Day 3

Quotation Inspiration. Find a quote that inspires you (either negatively or positively) and free write about it for 15 minutes. 

“Hope” is the thing with feathers –
That perches in the soul –
And sings the tune without the words –
And never stops – at all –
And sweetest – in the Gale – is heard –
And sore must be the storm –
That could abash the little Bird
That kept so many warm –
I’ve heard it in the chillest land –
And on the strangest Sea –
Yet – never – in Extremity,
It asked a crumb – of me.
-Emily Dickinson
This is more of a poem than a quote, but I love it anyway. To me, there is no life without hope. It doesn’t take a lot of effort to have hope, it takes a lot of effort to destroy hope. It doesn’t ask for anything in return. It’s always there, sometimes you just have to look a little harder for it.
I find comfort in looking for hope. I don’t like to ask why certain things happen, why I was diagnosed with an autoimmune disease, why some people are having problems healing and why I’m lucky enough to be in remission. I don’t ask why. I may never know the answer. I don’t look for the reason, I look for what good could possible come from a situation. I know it’s not easy for everyone to do, but I promise it makes life so much better.
There’s something to be hopeful for even in “the Strangest Sea” or the worst flare or the loneliest night. It makes your soul come alive. It sings. It floats. It lifts you up.
Hope is powerful. Some people think too much hope can lead to disappointment, but I don’t feel that way. I’d rather live in a world with too much hope than to not have any at all.