Hope Warrior-Michelle

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!

hope bracelet

Let’s get to know a little about Michelle.

 

 

Hope Warrior-Astrid

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.

Astridselfie

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-@chronicallyliving

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

Please read through Ellie’s story.

You can find her on instagram @chronicallyliving.

What type of chronic illness are you battling? I have Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Postural Orthostatic Tachycardia Syndrome (POTS) which is a form of Dsyautonomia and Irritable Bowel Sydrome(IBS). Together they produce huge variety of symptoms, some of the main being; fatigue that isn’t relieved by sleep or rest, chronic pain (joint and muscle, affecting all parts of the body), brain fog/cognitive impairment, nausea and other stomach problems, sleeping problems, constant sore throat and glands, feeling dizzy or faint, and many more.
 
What is the number one thing you’ve learned about yourself since your diagnosis?
Probably that I am able to deal with a lot more than I thought I could; I never expected to be in a situation like this but when you’re put in that situation you just learn to deal with it. 
When were you diagnosed?
I was diagnosed with ME/CFS in august of this year, and then with POTS and IBS in November. I have been suffering with symptoms since the very start of the year. 
What are your current medications/what lifestyle changes have you made to treat your illness?
In terms of medication: amitriptyline for sleep, pain and mood (currently reducing my dose), melatonin for sleep, domperidone for nausea (just about to switch to a new nausea med), fybogel for digestive problems, mebeverine for stomach cramps.tramadol and ibuprofen for pain,
Lifestyle changes: I’m mostly gluten free to help with my IBS, I try and follow a thing called pacing to make sure I don’t overdo my activity, and I take plenty of rest breaks during the day(Where i do nothing but lie there and listen to relaxing music)
How do you keep your mental health intact while dealing with the symptoms/changes of the disease?
I am on low dose antidepressant which possibly helps a bit, but mostly I try and focus on things I can enjoy and the little achievments every day. I’m also helped by being surrounded by loving, caring people who believe me and do their best to understand what I’m going through.
What do you struggle with most? What are you doing to overcome it?
I struggle the most with my fatigue, as it leaves me bedbound and unable to walk further than to my bathroom, and I sometimes can’t even manage that. To overcome it, I’m just having to do my best to keep my activity to a minimum to avid any further dips in energy level, and I hope that eventually I will be able to begin to build up my daily activity.
Any advice for newly diagnosed?
Try and keep your activity to a minimum-do half of what you are able to do! If you overdo it, your illness will only get worse and worse. And try and remember it isn’t necessarily a life sentence : people with ME, POTS and IBS do sometimes recover, and the majority of them experience periods of improvements, especially if you are young the chances of recovering are fairly good.
Rules to live by?
Do not overdo your activity. Love yourself and respect your limits. Don’t let other people tell you what you should and shouldn’t do. Don’t let people make you feel guilty for being ill. Always look for something positive in every day.
What does your perfect day look like?
At the moment, since I can’t leave the house I’d say a movie day with a few friends and maybe a bit of pampering time with face masks etc! 
Go to Snack when flaring:Probably a piece of dark chocolate  (I like 85%) because it doesn’t make me feel sick.
Favorite Author: Probably John Green! But I can’t read currently due to my illness.
Activity that lifts your spirits: Colouring!
Your philosophy/mantra that you’d like others to know about you: Make the best out of a bad situation.
What would you do with a million dollars? Give some to charity, some to my parents, buy myself loads of pyjamas!
Who do you admire? Everyone I see fighting their illnesses with such strength!
What is your mission? To raise awareness for invisible illnesses, especially ME/CFS.
Social media accounts? @chronicallyliving (instagram)
Screenshot_2014-12-10-08-23-30

Hope Warrior- Shawn

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.

Well-Belly-Web

#ShowMeTheMummy-Raise Awareness for IBD

One of my favorite IBD advocates and members of my support team, Colitis Ninja started this awareness campaign and I am so excited to participate in it. What you do, is wrap yourself (I would suggest having someone help) up with toilet paper and hold up a sign stating how IBD has affected you, good and bad. You can read more about the actual campaign on her blog www.colitisninja.blogspot.com

I chose to do my photo while getting my infusion. One of my soul sisters was there visiting with me and she helped wrap the toilet paper so my IV didn’t get in the way and took the photos.

#Showmethemummy

IBD took a lot from me. It’s taken a lot of money, from hospital bills to prescriptions to vitamins to infusions to special food. It took my ability to eat anything I wanted any time I wanted. It made me buy diaper cream and prep. H.  It took my 26th birthday and made me spend it hooked up to IVs waiting for the all clear to get remicade. It took so much blood I had to get blood transfusions. It took my reliability and made me person who sometimes has to cancel plans because they need to be home close to their bathroom, or they are too exhausted to even try to leave the house. IBD took my emotions and threw them into a blender. It took my muscles, it lowered my blood pressure, lowered my iron levels, and stole my energy. It stole my ability to live a carefree life.Thanks to the infusions I receive every 8 weeks, along with prayer, diet changes and daily yoga, I am as close to remission as I am going to get. And even though I no longer am losing blood (thank God),I still have an autoimmune disease that has no cure. I still fight every day to have as much of a “normal” life as possible. The infusions come with their own side effects, and I experience a lot of hair loss, joint inflammation, and am more susceptible to other diseases and virus because my immune system is lowered.

It’s hard to look at the positive of being diagnosed with IBD. But it has made me stronger than I ever have been before. That saying where you never know how much strength you have until being strong is your only choice? That fully applies here. I know that because I can battle this disease, I can battle anything that comes my way.

Having IBD has also made me re-evaluate relationships in my life, and I can say with a full heart that all of my friendships and relationships are high quality, strong and true. I have some of the greatest friends, am closer with my family, and have found a person who will be by my side while I battle this for the rest of my life. I have weeded out the flakes, and I couldn’t be more grateful for that. I don’t have time or energy for someone who is only going to be around when they need me.

IBD has also given me a dedicated yoga practice. I have learned so much about the mind body connection, and I practice yoga every day to stay in tune with my body and to relieve stress. On days when I can’t seem to get anything right, and my balance is off I can come to my mat for practice and remember when I couldn’t stand up long enough to take a 5 minute shower, or wash my own hair. And I am so proud of myself for how far I’ve come.

This disease has also brought me closer to God. I had a relationship before, but I had never fully experienced the power of prayer. Now I can feel it, and I know, and I talk to God every day. It keeps me grounded and lets me know that there is a bigger plan than all of this. I know that I have a purpose, and that comforts me and guides me.

Another unexpected perk (?) of IBD is the amazing circle of friends on social media and support groups that I have found. I often refer to them as my imaginary friends. I’ve never met anyone in my #IBDfamily personally. But I don’t know how I would have gotten through this disease without their support or encouragement. I am so inspired an encouraged by them, and so grateful for having all of these kind souls as a part of my life. It gave me the idea to spark hope and start this blog. It’s lead me to connections with others that would have never been possible without this diagnosis.

And that brings me to the final thing that IBD has given me. A sense of gratitude. I make it a part of my life every day to note the things I am thankful for. It can be something as simple as a cup of coffee, or an email someone sent today, or a phone call with my dad. Or as big as an IBD sister in the hospital healing. I’m thankful every single day, good or bad. I’m appreciative of what I’ve been given, because I know first hand that it can be taken away at any moment.

IBD is not a joke. It’s not a poop disease. It’s not something to be taken lightly. I wouldn’t wish it on anyone, but I do wish it was more well-known and understood. Do you have IBD, or are you a caregiver for someone fighting the disease? Please share your experience using #showmethemummy. Raise awareness with us.

ShowMe1

Hope Warrior- NY Smile Movement

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

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!

martine

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

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!

@mangiapaleo

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.

Hope and Guilt

Guilt. A bad feeling caused by knowing you did or thinking that you have done something wrong, according to Webster.

With this disease, I’ve been struggling with feelings of guilt. Guilt about taking medications, being in pain, being unable to attend events, eating, sleeping, and many other things. Mostly though, I feel my guiltiest when I feel like I’m being lazy, or at the thought of being viewed as lazy.  I often find myself pushing to get through an entire to do list of errands and tasks. And for what? To prove that I have what it takes to run errands and feel accomplished? To show I’m a functioning member of society? To show that I’m capable? These are all noble attributes and nothing worth scolding myself for. So I can knock tasks off my list without a single nap. What am I trying to prove?

I feel like I’m fighting my disease in this manner. I want to do it all. I want to be that friend, that girlfriend, that daughter, that advocate, that yogi, that writer, that inspiration. I don’t want to have this disease impose limits on me or give it control over my life. But, I’m learning, there’s a difference between succumbing to my disease and letting it defeat me: or accepting the disease as part of me and learning to live WITH it.

Yesterday, I was exhausted. And I felt so guilty about sleeping in and laying around for a couple hours watching Netflix and then reading out on the porch. It was Saturday, and I was down on myself for going easy. Granted, I slept less than 5-6 hours a night this week. I was released from the hospital a month ago. I returned to work full time 2 weeks ago. I’ve moved houses, started remicade infusion and now my body has been hijacked by steroid side effects. I’m wringing my eye mask out and stripping out of drenched clothes in the middle of the night from sweating. My face is swollen, my joints ache, and I swing from happy to sad to wanting to throw things every ten minutes. And I’m feeling guilty about wanting to do nothing for a few hours on a Saturday morning.

I don’t want to make excuses. I grew up with a mom who struggled with depression disorders and always needed naps before doing the dishes or couldn’t make it to events or clean or remember commitments because she was too tired. I understand more about her illness now and don’t judge her for needing that time. I know now that this is just part of her, and she does what she can. But I hate when I need it for myself. I have the ambition and I want to feel accomplished. I don’t want to be viewed as lazy or unable.

But I am limited right now.

I’m still healing. And this disease does not have a cure. This disease does not have a cure. When is this going to sink in? Even though I’m nearing remission, I’m still going to be battling this and dealing with symptoms for the rest of my life. This is an autoimmune disease. My body attacks itself. And I’m fueling the fire with guilt about it. So how do I go from battling and fighting to acceptance and building a life around it?

I need a plan.

First of all, time to stop the negative self talk. So, I’m tired. That does not make me a miserable excuse for a human being. It makes me human. A human with a chronic illness. Is it possible to be tired and happy at the same time? What a novel idea.

Step one: If you’re tired, be tired.

But you don’t have to be upset about it. Just be tired, do what you can, and move on .

So you can’t get to all the items on your to do list of the day. Can some things get done tomorrow? Of course. What is really important? Is it even on that list?

Step two: Determine what is important to you

PS.. It should be what makes you feel good. Why have a list of things to do that make you feel worse? You already have a disease trying to do that, remember?

Now time to face the big guns. As much as I don’t want to admit it, there’s a part of me that does care what other people think. Luckily, I have an awesome support system that listens to my ramblings and tends to love me anyway. Other people outside of my circle don’t matter so much. But my inner circle, I don’t want to disappoint them. Sometimes it feels like they’re waiting for me to be “back to normal,” whatever the hell that is. And I don’t know that going back to who I was before is ever going to happen. I might always be a little bit limited. My endurance and strength may never be where they were before, at least physically. Mentally I could blow away the competition in those two categories. I know they’ll love and accept me anyway, but again, I don’t want to disappoint them. They’ve fought right along with me in prayer and hope and positive thinking and I don’t want them to let them down by not healing fully. I know it’s something that will take more understanding and acceptance what this disease really is. And I have to come to terms with this as well. I’m just not the same. And that’s not a bad thing.

Step 3:Talk to inner circle. Believe them when they say you are strong and it’s okay to rest.

They don’t think you’re lazy. They want you to be healthy and happy too. You aren’t letting them down by taking care of yourself. This is the part that you need to do in order to heal and make those prayers answerable.

 

So, these are the things I’m going to work on while embracing (wince) my inflammatory bowel disease. Dear colon, I hug you. Let’s be friends, okay? We’re in this together. Anyone else out there deal with the guilt? How do you manage?

WORLD IBD DAY- Hope in the Beatles

In honor of world IBD day and in honor of my 28th trip around the sun today, I’m reposting one of my favorite posts about my IBD story. I will never forget how this disease makes me feel. I will never stop being grateful, and letting others know they aren’t alone.

Been doing a lot of listening to the Beatles and anything on the Beatles Pandora station lately.

Here Comes the Sun always brings me to tears. Good tears. Something about the smiles returning to the faces, it seems like years since they’ve been here. I can feel that. And it’s such a good feeling.

Man, this last month has been…not describable in one word. Not really describable in one post either, which is why I haven’t been sitting and writing lately. Shame, shame, for I really wish I would have documented more. But I remember. I remember sleeping, or trying to sleep sitting propped up on my mom’s couch with a million blankets, only to throw them all off of me to sprint to the bathroom 6-7 times a night. Laying there with my hands hovering over my stomach, praying and pleading with God to make the cramping pain just stop so I could sleep. I remember feeling such loss and loneliness every time my boyfriend would go home after coming to visit me, just wanting so badly to feel better and be there with him, helping him with the purchase of our new home and packing and moving and just wanting my life back.

Little darling, it’s been a long cold lonely winter
Little darling, it feels like years since it’s been here

I remember the look of exasperation on my mom’s face when I wasn’t getting better, and the look of love as she made all of my meals to try and get some nutrition in me, and her talking to me about how important it is to have faith, and God would get me through this, He would answer our prayers. I remember her sitting in the car and praying with me for good news before we went in to my colonoscopy. Praying for answers, for results, for improvements. I remember her telling me that I will get better. That I’m an overcomer. And telling me it’s okay to cry. It’s not a sign of weakness. It’s a sign of strength. I remember her packing my hospital bag, buying random items from the gift shop to make me smile, taking care of my dog and bringing me water or pedialyte or blankets whenever I needed it.

Here comes the sun, here comes the sun
And I say it’s all right

I remember my dad sitting by my bedside in the atrociously uncomfortable hospital chairs. All day. Every day I was at the hospital that he could be there. Even when I was just sleeping. I remember how tired he looked. How he drove around aimlessly and prayed for answers, and pondered unanswerable questions with me. What causes this disease? Why do I have it? What are we going to do about it? When am I going to be better? How can we get other people to understand this? What’s the bigger meaning beyond this? I remember him going for walks with me down the hall, and joking with the nurses.

Little darling, the smiles returning to the faces
Little darling, it seems like years since it’s been here

I remember the nurses. The good ones mostly. But I also remember the one that blew up my vein when giving me a steroid infusion. And the one that said I was admitted for IBS. (IBS and IBD are two different ailments, one is a syndrome and one is a disease with no cure). I remember Jim, my favorite night nurse from  my first hospital stay at the beginning of the month, making jokes and giving advice on how to talk to the doctors to make sure I was heard. I remember on my second hospital stay, him coming to tell me hospital ghost stories and making jokes while I was getting emotional from the steroids and just not having any answers or improvement. I remember my favorite day nurse Jannell with her poufy hair and outspoken voice, telling me that I was one of the sickest patients she’s ever had, calling me Jack and telling me stories. I remember waking up to her Sunday morning telling me I needed blood asap and we were going to be doing a blood transfusion today. I remember being scared and sad and she told me everything was going to be okay, that she would be here the whole time and that I had choices. That it was going to be a good thing and she would be there the whole time.

Here comes the sun, here comes the sun
And I say it’s all right

I remember the changes in the medications. The discharges. The parasite. The antibiotics. The stomach acid burning. The we’re going to do remicade. The no we can’t do remicade until you’re stable. The phone calls from my doctors cell phone that I needed to make myself available to be admitted to the hospital. The colonoscopy that was useless because I was too inflamed. The TB test that was incomplete because I didn’t have a baseline to compare it to my immune system was so shot. The chest x ray. The blood draws. The IV team being called because I have terrible veins. Baby needles. Poke after poke after poke after poke. The waking up to check vitals. Low blood pressure, high heart rate, danger of organ failure. Blood loss. Cramping. Tears. Weight loss. Worry. Treatment plan change. New doctor. Infectious disease specialist. Lifelong medications. Steroid infusions. Steroid pills. Night sweats. Sharing a bathroom with other patients. Not making it to the bathroom on time. IV poles. Unable to stand in the shower on my own. Passing out while buying dog food. Collapsing on the stairs into the house when my legs gave out from under me. Shaking. Scared.

Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes
Sun, sun, sun, here it comes

I remember the night my boyfriend came to visit me at my mom’s house in the evening. I remember when he looked me in the eye and told me “I need you to get better. Now. I miss you.” I remember his text messages telling me that he was always going to be here, that even though I am sick now, and not to undermine my illness, but this is part of life and we will get through it together. That he’s going to be there for me in the good times and the bad. That we’re a good team and when one of us needs the other one to be strong we balance each other out. I remember getting strength just from holding his hand. I remember just being held in his arms when I was able to move into our new home. Just being so grateful to have time together, to be able to have our new home, to relax and to heal and to make memories and be together. I remember sitting outside and crying just tears of joy at how lucky and blessed I am to be here and able to experience these moments of love and to just feel happiness.

Little darling, I feel that ice is slowly melting
Little darling, it seems like years since it’s been clear

I remember the prayers. I remember my grandma coming to visit me at my mom’s house and crying on the couch with me. I remember her telling me that she does her walks in the basement and says her prayers. That she won’t stop, ever. I remember my aunts sending prayers and prayer chains and being on church lists. My grandma’s brother even did a whole sermon on me. I remember the novelas, my grandma praying every hour on the hour for my healing. Saying she won’t give up. I remember the prayers and visits and emails and texts from wonderful friends that I now consider family, bringing laughter and cheer and Golden Girls cards and books and magazines, and just checking in daily to see how I’m doing, sending pictures and memories past to bring smiles. I remember the encouragement from social networks, people I have never met before praying and sending kind thoughts and positive vibes. The power of prayers. And they were answered.

Here comes the sun, here comes the sun
And I say it’s all right
Here comes the sun, here comes the sun
It’s all right, it’s all right

I remember getting discharged and my mom wheeling me out to the car to my waiting dog, and how he put his head right on my shoulder and just hugged me. I remember being weak and unable to walk through the grocery store, riding an amigo to get food. I remember sleeping and sleeping. I remember the first infusion. And the naps afterwards. And the feeling better the next day. Feeling stronger every single day. Doing a little more each day. I don’t want to forget it. I don’t want to lose sight of the beauty of this life. Because it is so beautiful. There is so much to be thankful for. I know that sick days can come again. I don’t have control over when this can happen. It’s not my plan, it’s His. But I do know that what I can do right now, is shine like the sun. And share love. And light. and hope with the rest of the world. Because it’s there. You just have to believe it.

Here comes the sun. It’s all right. 20140531_210240