Hope Warrior-Michelle

Posted on February 4, 2015 by flareuphope

February is a good month for heart opening. If you celebrate Valentine’s Day or not, take a moment to say I love you to those you care about. Send a card, make a phone call, share a smile. Bring a little light into the world.

This month’s featured Hope Warrior is Michelle Eberwein from hopeinbracelets.com

She’s pretty incredible. And she makes some beautiful bracelets for all sorts of causes to bring awareness to those conditions. Make sure to check out the bracelets using the link above, and share it with someone you know. This is one of my favorite bracelets she designed, called Hope (go figure that I like it). Can’t wait to order it for myself soon!

Let’s get to know a little about Michelle.

What type of chronic illness/autoimmune disease (s) do you live with? I have Rheumatoid Arthritis, Fibromyalgia, Degenerative Disc Disease that has resulted in a 3 level lumbar spinal fusion, permanent peripheral nerve damage in leg resulting from a foraminotomy surgery done in 2014.

When was your diagnosis? I broke my back in 2006 after slipping on my basement stairs. I didn’t know that I had degenerative discs until then. I waited until 2007 to get my 2 level spinal fusion because it was hockey season & both my boys were on teams. They were 10 & 8 at the time. I was diagnosed with RA in 2006 approx 6 months after my fusion. And fibro approx 8 months after that. Doctors felt the trauma from the surgery caused my immune system to turn on itself.

How did you cope? medications, injections and lots of ice.

What medications/treatments/surgeries/lifestyle changes have you gone through to manage your disease symptoms? 2 level lumbar spinal fusion in 2007, started RA meds in 2007. 1 level spinal fusion in 2013, bilateral foraminotmy in 2014. I took myself off all RA medications in 2011. The medications were making me sicker than the disease itself. I started researching nutrition and incorporated healthy, anti-inflammatory foods into my diet to put my RA in remission. I an manage my Fibro now with foods as well.

If you could tell yourself one thing looking back on your diagnosis, what would it be? Research and see what “natural” treatments can be done first. Pharmaceuticals are not always the first answer to a disease.

What do you do to relieve stress? Honestly, I watch reality tv LOL I am a sucker for all the “Real Housewives” shows. It takes my mind off my pain when I can just lay on my heating pad and watch mindless tv. 🙂

You really design some great bracelets to raise awareness. How long have you been creating? What inspires you? I started making bracelets when I was recovering from my spinal fusion surgery. I started making “hope” bracelets. After I was diagnosed with RA, there was not much information on the internet about it. And people thought it was just arthritis. I felt a passion to not only raise awareness for RA but for everyone else suffering from other illnesses that had no cure. People inspire me. Words cannot describe the feeling I get when someone sends me a card or an email telling me that my bracelet that I made for them has given them hope. Or made them smile. Or made them feel not so alone. Other people are the true inspirations.

Do you have a saying or quote or song that you turn to when you need to be uplifted?

My husband bought me a sign that is hanging in our bedroom where I can read it every day: “Find a heart that will love you at your worst and arms that will hold you at your weakest.” We got married at 18 and have been married for 26 years. He is my strength and is the only person that knows my pain and struggles. Love him dearly.

What keeps you hopeful? Science. So much is being discovered…new medications, therapies, etc so I am hopeful that a cure will be discovered for all this pain and suffering from our illnesses.

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

making bracelets!! 🙂 and hugging my dog

What are some of your favorite things? watching hockey, my 170lb English Mastiff named Bauer that lays in bed with me, anything pink, veggie sticks, night time with stars in the sky, coffee

Anything else you’d like to share! I never thought a bracelet could be so powerful to someone. I am grateful that I can create some beautiful designs that make people happy. It makes sitting at my desk with ice packs not even a factor as long as a bracelet touches someones heart!

Hope Warrior-Astrid

Posted on January 7, 2015January 6, 2015 by flareuphope

Please bear with me while the blog undergoes some updates. It’ll be back to being pretty, clean and organized soon!

It’s a brand new year, thank goodness. I had the greatest new years eve, this year surrounded by many of my favorite people. Last year I had to worry about being close to a bathroom, this year, I knew I would be okay. Last year, I was about to face the biggest health disaster of my life so far, and this year, I was laughing and smiling and crying tears of joy. Totally different from last year. I’ve never been so grateful in my entire life. There are days I wake up and I honestly have a hard time believing that the treatment is working. But it is. I’m alive, I’m well, I’m happy, and I’m so, so blessed.

To kick off the new year, I’d like to share Astrid’s story. When I was at my lowest point with this disease, she was always leaving me encouraging messages and continues to cheer me on as I do well, and when I need a little boost. She seems to do that for everyone that she sees struggling or battling an aggressive disease like IBD. If there were more people in the world that shared the same caring attitude that Astrid did, no one would ever feel alone. Do yourself a favor and check out her art in the links below. Thanks for being you, Astrid, and for letting me share your story. Happy Warrior Wednesday!

Hello My name is Astrid and I am an IBD/ UC warrior.

I was honoured when Jacklyn from FlareupHope asked to feature me as one of her Wednesday Warriors, I felt a sense of sisterhood with Jacklyn when we first bonded on IG. It was comforting to find others with IBD and sharing our stories make me feel less alone and scared.

What type of chronic illness/autoimmune disease (s) do you live with?
I was diagnosed with Mild to moderate Ulcerative Colitis

When was your diagnosis? How did you cope?
June 2013, The diagnostic was a relief as I needed to know how to proceed with a game plan.

What medications/treatments/surgeries/lifestyle changes have you gone through to manage your disease symptoms?
I have a very sensitive system to start and when I started taking Asacol, couple doses Salofolk following my doctor’s instructions, I felt more sick. I was only able to be on the medication for 2 weeks. My symptoms worsen and brought me to a full flare , that is when I went on a 5 weeks prednisone starting at 40mg to take the inflammation down.Because I didn’t want to rely on long term medication to maintain my everyday living, I worked really hard to find ways to manage my symptoms through diet change. I found the Paleo lifestyle a spring board to my healing regimen .

If you could tell yourself one thing looking back on your diagnosis, what would it be?
Don’t be afraid. This is a true test and will actually make you stronger . You are stronger than you think, you can heal your body, just listen to it.

What do you do to relieve stress?
Yoga, drawing and painting, walking in nature, bellydancing

You are an extremely talented artist. How long have you been creating? What inspires you?
Thank you for your compliment about my artistic abilities. I have loved creating as long as I could remember, silly putty was my favourite toy as a kid, I always had a pencil and paper with me, drawing was my thing, then I learned to paint in school. I am inspired by shapes, colours and texture from nature and love the uninhibited feeling in my children’s artwork.I love painting flowers.

Do you have a saying or quote or song that you turn to when you need to be uplifted?
This too shall pass

What keeps you hopeful?
Meeting more and more IBD/ AI warriors who is dedicated to healing the body through a holistic approach. My first GI told me that I would be 1 in a million if I can control my UC with diet alone. I really should buy more lottery.

What are some of your coping mechanisms for dealing with stress?
Focusing on Breathing, seems so simple but I often forget to take deep breathes until I do yoga or bellydancing. Putting things in perspective when a stressful situation arise. Is my world really going to crumble? Is my family going to be harmed? Am I going to live through it? I used to jump at other people’s requests or demands. I would put their needs or wants first. Now, I prioritize my life better, my health and family always come first.

Rain drops on roses and whiskers on kittens. ..what are some of your favorite things?
A perfectly sharpened black drawing pencil, epsom salt bentonite clay bath, coconut anything, lavender, the smell of my children’s hair (when it’s cleanish ), a juicy grass fed steak

Social media accounts /website?
http://www.healmeinthekitchen.com
www.astridfoxartanddesigns.blogspot.com
IG: @astridfox_art

Biggest change you’ve made since diagnosis? I am better at managing stress now and have found a positive outlook in life. I have learned to calm my fight or flight habit and start living life with different perspective.
I have learned to adapted to evolving healing eating plans as my body changes. I started with going grain-free right when I was on my short course of prednisone, , then I embraced the Paleo lifestyle, now I have fine tuned it with AIP ( Autoimmune Protocol ) with low FODMAP. I cook 90% o f my foods, spend 80% of my waking time in the kitchen. I read labels because my wellbeing depends on it. I almost never eat out but you can often spot me with my thermal flask of bone broth at restaurants while out with my family.

Best thing about having this disease?
Having to learn how to face my fears and dig deep into my darkest places, I have become the person I have always want to be, I have learned to live with less fear and without regrets. (I love this-J)

What have you accomplished that you are most proud of?
M y greatest accomplishment besides being a parent is building a business from ground up. 17 years ago, My husband and I took our passion, along with our inexperiences and decided to start our own business. When we opened our retail fashion boutique in 1998, apparently our neighbouring business ,at that time, thought that we ( our business) would only last a couple of months. That neighbouring business has since sold and change a couple of hands over and we are still the longest standing business with the same owner in the hood. Being entrepreneurs isn’t easy but we stood the test of time with our boutique/cafe, Global Atomic Designs and Black Echo Coffee, in the fashion district of downtown Vancouver, Canada. We having survived the economically ups and downs throughout the years and continue to push trend boundaries .We have earned international recognition in what we do like making into the NY Times 36 hours guide.

Astrid is a whole food advocate, recipe developer, ferment fanatic, mother, wife, artist and entrepreneur. When she is not playing kitchen scientist, she is most likely plotting her next painting move from her yoga mat. Carving time to fill her different hats can be challenging, but she finds joy in balancing a holistic lifestyle to support her continuing battle with Ulcerative Colitis. She owns a fashion boutique/ cafe www.globalatomic.com and www.blackechocoffee.com in downtown Vancouver, Canada with her husband.

You can also follow her creative art progress on http://instagram.com/astridfox_art

Hope Warrior: Alyssa

Posted on December 17, 2014December 17, 2014 by flareuphope

How the weeks fly by, it’s another Warrior Wednesday! Please meet beautiful Alyssa. She doesn’t let IBD stop her from reaching her dreams, and she always keeps a gorgeous smile on her face! It’s hard to keep that mentality when you’re facing a chronic illness everyday, but she does it, and she does it well. Don’t forget to check out the t-shirts she designed to raise awareness for Crohn’s and colitis. She’s rocking one of them in the photo below. Links are at the bottom of the page.

Here is a little bit about Alyssa:

My name is Alyssa Clements and there are many things in my life that define me, but my Crohn’s disease is not one of them. I am a first year medical student at the Philadelphia College of Osteopathic Medicine (currently on a medical leave), I was lucky enough to be Miss Ramapo Valley 2014 (a local title holder in the Miss America Organization) even while being ill, I am always looking for a new challenge and planning for the future. I try to raise awareness for Crohn’s and colitis, and health and wellness in general, and am passionate about raising funds for a few charities close to my heart. I recently competed for the title of Miss New Jersey and was voted People’s Choice! While it is hard to always stay positive and energetic when struggling with a chronic illness, I know that doing so will help me defeat this disease. So for now, I’ll just keep smiling!

What type of chronic illness/autoimmune disease (s) do you live with? I suffer from IBD, more specifically Crohn’s disease.

When was your diagnosis? How did you cope? I was diagnosed at the end of February of this year, 2014. At first, I was not very worried, as I was doing very well with a few mild medications. Then suddenly I was hospitalized again and again for obstructions. I had to be placed on heavy immunosuppressants and spent so much time in doctors’ offices and hospitals. I coped by keeping myself busy, by doing something I never thought I would do, compete for Miss New Jersey. I also spent a lot of time raising funds for my favorite charities, including the CCFA.

What medications/treatments/surgeries/lifestyle changes have you gone through to manage your disease symptoms? In the beginning, I was just on Lialda and Entocort. I also was placed on a no fiber diet, so I could not, and still cannot, eat any fruits, vegetables, seeds, nuts, whole grains, and the like. After my disease got worse I was placed on Humira every other week, which was helpful but feels like acid going into my body! I was also on prednisone tapering up and down for many many months. Then, I continued to get worse so the Humira was upped to every week, and hey added Azathioprine. Finally, after 8 weeks on this regimen, it was decided that my terminal ileum was so strictured and scarred that it would need to be removed. Two days before my ileocectomy was scheduled they found two abscesses in my sigmoid colon, which results in moving the surgery back a month and making me NPO (nothing by mouth) and on IV steroids 4 times a day and TPN (total parenteral nutrition) through a picc line I had place. This lasted for a month. Finally, last week on 12/10/14 I had my ileocecectomy, the removal of my terminal ileum and cecum. I was started on food the next day, and released on my birthday, the 13th! I am still in a lot of pain but it was so worth it. I feel like I am getting my life back. In 4-6 weeks I should be fully healed and on a normal diet. I will restart my Humira as a preventative measure to stop the Crohn’s disease from spreading.

If you could tell yourself one thing looking back on your diagnosis, what would it be? Definitely to get the surgery way sooner, because I wouldn’t have had to take yet another year of medical school and suffer for so many more months. They truly believe this surgery will give me the remission I have been dreaming of.

What do you do to relieve stress? I really enjoy playing the piano, it helps me to express myself and take my mind off of what is going on. I also love going to the movies and hanging out with my boyfriend and family. I also love to raise money for IBD and design t-shirts to raise awareness and funds. I call them IBDtees!

Do you have a saying or quote or song that you turn to when you need to be uplifted? “It’s kind of fun to do the impossible.” – Walt Disney. Walt Disney is a true inspiration to me, he was so creative and innovative. I really believe that fighting Crohn’s is like doing the impossible, and that I am a superhero for doing so!

What keeps you hopeful? Having great physicians, supportive family and friends, and an inspiring boyfriend keep me hopeful. I also am very optimistic and stay strong through it all.

Rain drops on roses and whiskers on kittens. ..what are some of your favorite things? Two things, my little maltese puppy Louie, and Walt Disney World! (I have been there 61 times and am only 23!)

Social media accounts /website? Instagram & Twitter: @Alyssa_Alda and @IBDtees, Facebook page: https://www.facebook.com/IBDtees

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Hope Warrior-@chronicallyliving

Posted on December 10, 2014December 10, 2014 by flareuphope

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

Please read through Ellie’s story.

You can find her on instagram @chronicallyliving.

What type of chronic illness are you battling? I have Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Postural Orthostatic Tachycardia Syndrome (POTS) which is a form of Dsyautonomia and Irritable Bowel Sydrome(IBS). Together they produce huge variety of symptoms, some of the main being; fatigue that isn’t relieved by sleep or rest, chronic pain (joint and muscle, affecting all parts of the body), brain fog/cognitive impairment, nausea and other stomach problems, sleeping problems, constant sore throat and glands, feeling dizzy or faint, and many more.

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

Probably that I am able to deal with a lot more than I thought I could; I never expected to be in a situation like this but when you’re put in that situation you just learn to deal with it.

When were you diagnosed?

I was diagnosed with ME/CFS in august of this year, and then with POTS and IBS in November. I have been suffering with symptoms since the very start of the year.
What are your current medications/what lifestyle changes have you made to treat your illness?

In terms of medication: amitriptyline for sleep, pain and mood (currently reducing my dose), melatonin for sleep, domperidone for nausea (just about to switch to a new nausea med), fybogel for digestive problems, mebeverine for stomach cramps.tramadol and ibuprofen for pain,

Lifestyle changes: I’m mostly gluten free to help with my IBS, I try and follow a thing called pacing to make sure I don’t overdo my activity, and I take plenty of rest breaks during the day(Where i do nothing but lie there and listen to relaxing music)
How do you keep your mental health intact while dealing with the symptoms/changes of the disease?

I am on low dose antidepressant which possibly helps a bit, but mostly I try and focus on things I can enjoy and the little achievments every day. I’m also helped by being surrounded by loving, caring people who believe me and do their best to understand what I’m going through.
What do you struggle with most? What are you doing to overcome it?

I struggle the most with my fatigue, as it leaves me bedbound and unable to walk further than to my bathroom, and I sometimes can’t even manage that. To overcome it, I’m just having to do my best to keep my activity to a minimum to avid any further dips in energy level, and I hope that eventually I will be able to begin to build up my daily activity.
Any advice for newly diagnosed?

Try and keep your activity to a minimum-do half of what you are able to do! If you overdo it, your illness will only get worse and worse. And try and remember it isn’t necessarily a life sentence : people with ME, POTS and IBS do sometimes recover, and the majority of them experience periods of improvements, especially if you are young the chances of recovering are fairly good.
Rules to live by?

Do not overdo your activity. Love yourself and respect your limits. Don’t let other people tell you what you should and shouldn’t do. Don’t let people make you feel guilty for being ill. Always look for something positive in every day.

What does your perfect day look like?

At the moment, since I can’t leave the house I’d say a movie day with a few friends and maybe a bit of pampering time with face masks etc!
Go to Snack when flaring:Probably a piece of dark chocolate (I like 85%) because it doesn’t make me feel sick.

Favorite Author: Probably John Green! But I can’t read currently due to my illness.
Activity that lifts your spirits: Colouring!
Your philosophy/mantra that you’d like others to know about you: Make the best out of a bad situation.
What would you do with a million dollars? Give some to charity, some to my parents, buy myself loads of pyjamas!
Who do you admire? Everyone I see fighting their illnesses with such strength!

What is your mission? To raise awareness for invisible illnesses, especially ME/CFS.

Social media accounts? @chronicallyliving (instagram)

Remission

Posted on December 3, 2014December 3, 2014 by flareuphope

This girl is one of the most amazing people I have met in this community. Not only does she give all she’s got to fight her autoimmune diseases and everything that comes with it, she fights for everyone else that’s suffering. Through her #purpleproject care packages, caring tweets, and hilarious sense of humor, she’s always bringing a smile to someone’s face. I picked this post to share today to give a little insight as to what it’s like to have an autoimmune disease. “Remission is a sigh of relief, Remission is family, friends and never cancelling plans. Remission is Hope, a Future, Remission is smiles. Remission means normal.”
Kelly, thank you so much for all that you do and all that you fight for, and all the joy you bring to people who need it. I couldn’t be prouder to have you as part of my IBD family, and I know we’ll be in this fight together through Remission and beyond.
What is Remission to you?

Hope Warrior- Shawn

Posted on November 19, 2014November 19, 2014 by flareuphope

Hi folks! Sorry I have been away for so long. I caught a terrible cold and was spending all of my energy on my day job and am just now getting it all back again and getting back into the blog! I promise it will be better than ever before, stay tuned for the next few months to see what’s coming!
In the mean time, I’m happy to introduce you to this week’s Wednesday Warrior, Shawn.
She’s a great example of how your life doesn’t have to revolve around your disease, and you can do amazing things still! Using ulcerative colitis as a driving force and determined to put herself and others fighting autoimmune diseases into remission without having to rely on harsh drugs and awful side effects, and she’s doing great work on this!
Check our her contact info at the end of the blog, and thank you Shawn for sharing!
Here’s Shawn’s story:

I was diagnosed with ulcerative colitis in 2008. At the time, I just took the medication (mesalamine) I was given and it went into remission without a problem. I had a few small flares over the next few years, but was able to get over them pretty quickly. It wasn’t until August of 2013 when I was hit with an intense, debilitating flare. Tests revealed my UC had spread. My gastroenterologist was the worst! He gave me no insight as to how this could have happened and refused to entertain any idea that diet played a role. Instead, he handed me a prescription for prednisone and mesalamine and made sure I was aware that I would need to be on medication the rest of my life. This infuriated me, but looking back now, I’m so incredibly happy that I had the worst doctor ever. It forced me to do my own research on causes and treatment of the disease because I was determined to get off prescription medications! 18 months later and it has become almost an obsession…I WILL figure out how to make people with autoimmune diseases well again without the use of debilitating prescription meds. I have found my calling!

Since that moment of enlightenment, my life has been a whirlwind! First and foremost, I completely changed my diet and in doing so, have been able to get my UC symptoms about 90% under control. I currently follow a STRICT paleo diet, eliminating ALL grains, dairy, processed foods, sugar, and legumes. For 6 months, I even took it one step further and followed the Autoimmune Protocol which eliminates nuts, eggs, and nightshades…foods that can cause inflammation in those that are sick. In doing so, I was able to take my healing even further, get off ALL medications, and add these foods back in with no symptoms! Food is medicine and it has been a game changer for me. Another plus? It has MADE me learn how to cook and it turns out that the kitchen is my happy place! I have eaten some of the best meals of my life while focusing on eating for my health. This is MY #1 PIECE OF ADVICE…even if your doctor tells you diet has nothing to do with your disease, IT DOES! At minimum, it is absolutely critical you get rid of all processed foods and grains. It’s not that bad, I promise!

Secondly, I had to make some major lifestyle changes. Living a rested, stress-free, health-fulfilling life was now my biggest priority. I had spent years in a super stressful job, had a crazy workout routine, ate at a caloric-deficit everyday in an effort to get to my ‘ideal’ weight, dealt with dramatic relationships, and spent one too many nights out until the bars closed. I simply could not live this lifestyle anymore, my health was more important. I immediately adopted a more ‘grandma-like’ lifestyle! I make sure I get at least 8 hours of sleep every single night which means some nights, I’m leaving social outings early, something I have learned to be OK with doing. I also don’t drink alcohol anymore (except for a very occasional glass of red wine) and have had to adapt to being the only one ordering water! Although I still workout regularly (I am a personal trainer after all!), I make sure to listen to my body and tone it down when I need to in order to avoid physical stress. I no longer allow dramatic people into my life. If I do have a stressful day, I make sure to spend at least a few minutes that day in full-on relax mode, focusing on deep breathing and muscle relaxation. This is my version of meditation! I also spend about 30 minutes every night doing restorative yoga poses to detox my body and mind from the day. In purposefully de-stressing my lifestyle, not only have I been able to physically heal, but it has helped me mentally cope with the battle at hand. This is my #2 PIECE OF ADVICE…get rid of as much stress as you possibly can and get some sleep! Eliminating stress is the only way to truly heal.

It may seem like this major life overhaul I’ve had would be hard, overwhelming, and not fun, but it is just the opposite. I’ve never felt so empowered in my life! I’m not letting this disease win! Yes, I have bad days. There are days when I don’t feel well and it’s frustrating. There are times when I want to go out with my friends and have a beer and a giant plate of nachos. There are times when I just don’t want to think about any of it for a second. But, I recognize that its normal to have bad days and negative thoughts. I don’t beat myself up about it. Its what you do with the negativity that matters. For me, I’ll take a nap or read my Us Weekly (my guilty pleasure) to take my mind off of it for a bit. If I’m frustrated, I’ll go get a great workout in and sweat the frustration out! After I take this time away, I turn my feelings into motivation! I head to my computer and do more research, looking for even more information that will help us all beat this disease. My bad days only fuel my fire! And this is my #3 PIECE OF ADVICE…YOU are not YOUR DISEASE! Don’t let it take over who you are. Let it motivate you to live your healthiest life and use those lifestyle changes as empowerment!

I have a ways to go, but in the past few months I have learned so much about treating and preventing autoimmune diseases WITHOUT prescription drugs. It is a possibility and so exciting! As I get information, I will be sharing it to help everyone else via my blog: www.well-belly.com. You can also sign up for twice monthly newsletters focused on wellness as a lifestyle on this site too! If you need ideas for what a meal should look like on a Paleo diet, follow me on Instagram: @well_belly.

I would love to hear from anyone who is struggling with their battle, has questions, or just wants to chat! Email me: wellbellynutrition@gmail.com.

Hope Warrior-Colitis Ninja

Posted on October 15, 2014October 14, 2014 by flareuphope

I found Colitis Ninja on Twitter when I was looking for support/trying to find anyone to relate to what I was going through when I was in and out of the hospital in May. Her mission is incredible, the sole purpose is to support people suffering from IBD, and not just the patients but also the caregivers (so important!!). Her honesty on her blog is so refreshing and she’s just a great friend to have and an important part of the IBD community. Plus she’s quick to respond to any question and checks in to see how you are doing! It’s continues to impress me the love and support I get from strangers and other people I have never met before.

I’m so thankful for what Colitis Ninja has created, and for the hope that she brings for anyone suffering with a disease. The disease sucks. It’s not just a poop disease. It’s real, it hurts, and it’s scary. When you can find strangers to support you in your fight for a cure, or for remission, or for recovery from surgery, or just to make it through the day, it brings a light into your life that might have been dimmed out a little bit.It’s encouraging, it’s empowering, and it helps me continue to kick this disease in the tushe (yea, tushe). So thanks for sharing that light, Colitis Ninja. You are so appreciated.

If you are suffering from IBD, or know someone that is, or just want to learn more about the disease, Colitis Ninja is an incredible resource and so, so supportive. Give her a shout on Twitter, or watch some of her YouTube videos and reach out on FaceBook. And don’t forget to subscribe to the blog. I was lucky enough to get her to answer some questions for me about her experience with IBD. Look into participating in her #showmethemummy awareness campaign (Look for my post soon!)

BLOG: www.colitisninja.blogspot.com

FACEBOOK: www.facebook.com/colitisninja

TWITTER: @ColitisNinja

YOUTUBE: www.youtube.com/colitisninja

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

This is a hard one. I have learned that I am stubborn (in both good and bad ways). I am also very prideful, and I’ve learned that sometimes I just need to let things go.

When were you diagnosed?

Valentine’s Day 2011. I was blessed to get a quick diagnosis. I had only been suffering for a month and a half.

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

I now have a j-pouch. I had the ileal pouch anal anastomosis surgery… in short, I had my colon removed. Right now, thankfully, I am not on any medications.

I tried multiple medications/diet changes and in the end, I had to have surgery.

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

For me, prayer–and lots of it!!! But not just that, being able to talk with others about it has been very helpful. Knowing I’m not alone in my suffering. Support is SOOO much more important that most people realize. A lot of people suffer unnecessarily alone and in silence.

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

I guess the thing that has hurt me the most (aside from the physical pain) is that I feel as though I was “robbed” of my black belt. Some people may think that is silly, but I fell in love with karate long before I started practicing it. I was 6 months away from my black belt when UC hit. I couldn’t go to my classes because I was glued to the toilet and anemic. Then there’s the whole Prednisone issue. It made my joints stiff and very achy. Not good when you’re in difficult stances. I have taken a step back and realized that just because UC came at the wrong time, it doesn’t mean I’ll never reach my goal. I am feeling much better since my surgery and I’m hoping that I can get back into it around the beginning of the year. Maybe even compete. The only thing is, I’ve moved 3 hours away from my dojo and finding a new (and suitable) one has proven to be another obstacle.

Any advice for newly diagnosed?

My first thought when I was diagnosed was, “Good! All I have to do is take my meds every day and I’ll be alright!!!” Then it became the biggest and most frustrating battle of my life. I would tell someone in the same situation that this battle is neither fun nor easy. I would tell them don’t let it get you down! Find support. Don’t be afraid to try different treatments or diets! There are many people out there who claim to have been successful on alternative remedies. Never lose your passions. Never let this disease knock you down. You will have downs, but you will also have ups. You are stronger than you think you are.

Rules to live by?

Never lose sight of who you are and what you want to accomplish in life.

Quote you turn to when you need to be uplifted:

“Now this is what the LORD says–the One who created you, O Jacob, and the one who formed you, Israel–‘Do not fear, for I have redeemed you; I have called you by your name; you are Mine. I will be with you when you pass through the waters, and when you pass through the rivers, they will not overwhelm you. You will not be scorched when you walk through the fire, and the flame will not burn you. (…) Because you are precious in My sight, and honored, and I love you, I will give people in exchange for you and nations instead of your life. Do not fear, for I am with you…”

–Isaiah 43:1-2 & 4-5a

Music/Song:

So many. First, anything by Owl City. I dare anyone to listen to his songs and contain themselves. Such upbeat and encouraging stuff. My favorites include (but are not limited to) “When Can I See You Again?,” “Galaxies,” and “Dreams and Disasters.” Also, I adore Jon McLaughlin. That man has talent!!!

Go to Snack when flaring

Chocolate. Potatoes. Macaroni.

Activity that lifts your spirits:

Karate. Drawing. Blogging.

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

I am a Christian. I am far from perfect. Without Christ, I would have given up on life a long time ago. I’ve had many battles (a lot of them UC related, but not all), and without the strength and grace He has given me I would be a wreck right now. I’ve had many nights and angry words with Him, but He always has my best interests at heart and He has NEVER given up on me even though I’ve given Him several reasons to.

What would you do with a million dollars?

Firstly, I’ll be honest, I would pay off the student loan debt I’ve acquired. I would invest some of it in Colitis Ninja to raise awareness and probably donate some to some of my friends who cannot pay their medical bills because of IBD.

Who do you admire?

My husband, Dave, for his wisdom. Don Byington, my karate instructor. Multiple IBD fighters (too many to name!!!).

What is your mission?

I am VERY passionate about raising awareness and helping other people through their suffering. I want others to know that they are not alone. I want others to see that although these times are hard, there is also a beauty in the suffering. That’s been my experience anyway. I want to make others laugh. We do enough crying and mourning over our diseases, sometimes we just need some joy in our lives.

Hope Warrior- NY Smile Movement

Posted on October 1, 2014 by flareuphope

Browsing through #randomactofkindness (RAK) on instagram one day and I came across @nysmilemovement. A whole year of RAK’s documented. How cool. And what an impact they’re having! From leaving lottery tickets in grocery stores for strangers to find, to volunteering to pet sit, to giving away arcade tickets, smiles and hope in humanity are being shared everywhere, Join in the movement! Get to know a little more about Alex and a little more about Alec below, and then find @nysmilemovement on instagram and @ROCsmilemovement on twitter! And then go spark some hope with your own SmileMovement! Let me know what you do in the comments!

How did you come up with the idea for 365 days of Random Acts of Kindness?

Earlier this year I saw a couple of inspiring posts throughout the week on social media and spent some time pondering the effects that such kind deeds can have on the world…I thought up my first idea soon after and decided to attach quarters, with kind notes attached, to vending machines at a Tops market near my house. The joy I got after seeing the “free candy recipients” post a picture of their combined smile to my feed was so contagious I couldn’t stop! I then made a personal goal to perform the 365 days of Random Acts of Kindness and the rest is history!

What project/activity has impacted you the most so far?

I can’t choose just one so I’ll give you my 3 personal favorites!

1) I got contacted by a mother who really wanted to give her son WWE tickets for his birthday. I had just sold the tickets however, but had an opportunity to win another pair that night if I somehow won another 16 person competition at the nearby bar that night. I ended up winning the whole thing and surprised the mother, and her son, by giving him the tickets for free on his birthday! 🙂 Seeing his smile was absolutely priceless.

2) Shoveling out cars on my street for 2 hours after a snow storm so my random neighbors could get out easily in the morning 🙂 Actually putting in all that sweat and effort for others felt great to know I saved each of them that task.

3) Personally Messaging all 700+ of my followers has been amazing so far. Spending the time to view most/all of the pictures on each account and tailor each message to every person has brightened dozens of people’s days. I approached this with the mindset that “You never know quite how rough someone’s day/week/month could be and how much that person could benefit from the tiniest thoughtful gesture of kindness to show you’re thinking of them”. I’ve connected with 230/700 people so far that I’d normally never interact with otherwise. Of the people that responded, SO many of them said that I had made their day and that “you have no idea how badly I needed this…thank you”. Over and over I’ve seen that response this past week and it just reemphasizes how important such a small gesture can truly be. On top of that, I’ve gotten to know so many of my “followers” that I’ve never talked to before and have found many things we share in common after lengthy convos. It. Has. Been. Great!! Can’t wait to conquer the next 2/3 :]

Rules to live by?

I grew up with the golden rule and have been stickin’ to it ever since (thanks Mom haha). Treat others the way you’d like to be treated. It’s that simple!

Quote you turn to when you need to be uplifted:

“No act of kindness, however small, is ever wasted”.

Music/Song:

“Don’t worry, be happy” 🙂 Also, Funk. Funk warms the soul and gets the people movin’! haha

Activity that lifts your spirits:

Random acts of kindness ALWAYS lift my spirits whenever I’m having a crummy day. Putting a smile on the face of a random person, or even a friend/family member, is priceless.

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

For so many years of my life I never truly understood the power, and meaning, of giving with the intention of getting nothing in return. Now, that is how I live my life. Many of the RAOK I do, I don’t even get to see the reaction of the people who end up receiving them. I just try to do everything with strong faith that they’ll reach a person who needs it, (hopefully) appreciates it, and (hopefully) pays it forward. I believe in “creating waves”. The power of the ripple effect that follows from a single good deed can be tremendous! The best part? We all have that power!!

What would you do with a million dollars?

I’d travel for awhile and then invest a big chunk into my big RAOK career idea that will be very well spent towards inspiring & uplifting the country if it all pans out! To be continued… 🙂

Who do you admire?

I admire anyone and everyone in this world that lives their life with undeniable passion working towards their dreams. Anytime I see someone like that I admire their drive and it reignites the fire in me to keep doing the same!

What is your mission?

A huge goal of mine is to inspire people across the country to start their own “SmileMovements” in every state. I want kindness to become such a common gesture that it’s rare to see someone not smiling!!

My mission is to make my stamp on this world by doing everything in my power to make it a happier place to live. One small act at a time. One small city at a time. One state at a time. One Country at a time. Bit by bit I will be spreading kindness and inspiring people to pay it forward as long as I live.

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.

Mangia Paleo-Hope Warrior

Posted on August 26, 2014 by flareuphope

On Wednesdays we meet warriors. This idea of sparking a little more hope in the world isn’t just something I can always find from within myself. I’ve found that the spark grows more when there are others out there you can draw inspiration from, relate to, who provide a sense of humor, a little support and a whole lot of light when you’re reaching for the stars in the darkness.
Laura and I were diagnosed with ulcerative colitis close to the same time, and her Instagram (@mangiapaleo – follow her!) account displaying how she was using food as medicine to fight her disease into remission was so reassuring to me. Plus she displays the best sense of humor and doesn’t hide about the difficulties and frustrations the disease can cause. When we could laugh about poop together, even through cell phone screens and laptops hundreds of miles apart, I knew I had found an IBD (inflammatory bowel disease) family member. I wouldn’t have gotten through my hospital stay with a good attitude and faced recovery without having her cheers and healing vibes.
So meet Laura, a true IBD Warrior. She has some great recipes and info about ulcerative colitis on her blog as well!

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

I’ve learned that I am more resilient than I would have ever known. It also surprised me that I took a negative diagnosis and turned it into something that, hopefully, instills inspiration and strength in others.

I think you definitely do that with all of your efforts. When were you diagnosed?
March 2013

What are your current medications/what lifestyle changes have you made to treat your IBD?
Immediately after my diagnosis I began the paleo diet lifestyle. My diet excludes grain, gluten, dairy, legumes, sugar and anything processed. I am currently taking a maintenance drug but do not believe it contributes positively to my health-or at all. *shrug* My diagnosis was just last spring, so I’m still experimenting with what I can and can’t eat or do with my ulcerative colitis.

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

A huge part of why I stay strong is my accountability from my blog. I feel a sense of purpose when I post new recipes or health information. Upon being diagnosed I also believe I was given an obligation to raise awareness and help others in their journey. Being an advocate for IBD is a reminder that I am in control of my disease and that my diagnosis brought me to a healthier way of living.

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

My independence is something I really value, but I can get lonely occassionally. My friends and famiy have been an amazing support, but sometimes you just want someone to surprise-pack a healthy lunch for your or ask how your day was and give you a hug when you come home.
Having IBD is one of those diseases where it is easy to seclude yourself and believe that no one understands what you are going through. But I have overcome that by speaking out about it.
Since I have been very open, honest and candid about my disease I have met some amazing people through my journey. You’d be surprised how many people/acquaintances in your life have Crohn’s an colitis!

Any advice for the newly diagnosed?

I have 3 pieces of advice:
Even though you may not feel like it, you are in control. You own your body.
Do your research on health and nutrition.
Talk about it. Raise awareness and help the average person better understand our illness. It’s a great way to build a network of support, too.

Rules to live by?
Always bite your tongue when you hear someone without IBD tell you they have a stomach ache. Oh, and eat clean and get plenty of sleep!

Quote you turn to when you need to be uplifted:
“Every day may not be goo, but there is something good in every day.”

Love it! Musice/Song: “Three Little Birds”- Bob Marley
I also have a short Spotify playlist called “IBD Flare.”

Go to snack when flaring: Bone broth and roasted carrots with turmeric and ginger.

Activity that lifts your spirits: Cooking, CrossFit, and doing anything outside in beautiful weather.

Your philosophy/mantra that you’d like others to know about you:
I always keep my sense of humor.

Flare Up Hope

it starts with a spark

Hope Warriors