Hope Warrior -Kristen Boehmer

It’s a new Hope Warrior Wednesday!

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

Meet Kristen!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

paleo/

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

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

How do you treat yourself when you want to indulge?

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

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

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

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

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

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

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

What are some of your hobbies and activities you enjoy?

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

Where are some of your favorite places to travel?

Hawaii for sure!

 

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

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

 

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

Happy Wednesday Folks!

Hope Warrior-Sarah

Hi folks.  Can you believe it’s April? Thank the Lord tax season is about to be over and my work schedule will calm down a bit.  Sorry I haven’t been posting much lately. Unfortunately,  my real job has priority right now as it pays for the superwoman infusions I get every 8 weeks that keep me standing. Please forgive me for my absence, and welcome April’s Hope Warrior.
If you haven’t had a chance to connect with Sarah Choueiry of the Crohn’s journey foundation, you’re a fool. Jk. But really. She’s amazing and has such an awesome energy. Links to her social media accounts are below. Make sure to give her a follow and share some love and encouragement.

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Hi Sara! Thanks for sharing your story with us.

What type of chronic illness/autoimmune disease (s) do you live with?

​I live with an Inflammatory Bowel Disease called Crohn’s disease. ​

When was your diagnosis? How did you cope?

​I was diagnosed at ​14, struggling with symptoms since I was 12. I remember it took my mom threatening my regular doctor with a lawsuit if he did not send me to a specialist. My gen doctor was saying things initially that implied what was happening was in my head or part of becoming a teenager. I remember the day I stepped into the GI’s office, she looked at me and read my symptoms and said “you either have Crohn’s disease or ulcerative colitis, we need to have a colonoscopy.” I also remember that first colonoscopy because they put me in twilight. Let’s just say it scarred my memory!
When I was younger I did not cope, my parents did. They tried to alter my food to a soft, low residue (as recommended by the GI – aka white bread, white pasta, white everything ) and encourage me to take my pills without hounding me about it. I remember multiple trips a month to the emergency room and wishing that I did not always have to go to the bathroom every place I went. Besides that my memory of Crohn’s at the time I was diagnosed was limited to that.

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

​I actually just had my first (and last) surgery (Feb 3) to remove what was supposed to be 10 cm of my small intestines, but actually ended up being 45 cm of my terminal ilium and part of my colon. Based on what the surgeon said, I no longer have any Crohn’s in my body! I hope not, after that surgery, was not easy for me.
Prior to that I switched GI’s about a year ago and so grateful I did. My new GI utilizes alternative medicine in her practice, from herbal medications to aid with calming the body to help reduce adrenal fatigue, creating teas just for my bodies needs at that time and making me tinctures just for my body.  ​She looks at the whole body and not just the symptoms. As for treatment, I was on humira in the beginning of 2013 and stopped some time in the fall because it did not appear to work anymore. I was then placed on entecort in the winter (2013), until surgery in Feb. I also did a couple rounds of Xifaxin while on the intro to Gaps diet and I felt amazing. The purpose of doing that was to help lower the collection of bad bacteria in my gut (SIBO = Small intestinal bacteria overgrowth), which I am convinced over 80% of people with IBD struggle with. I also altered my diet this past year and have been doing a variation of AIP with SCD and that has reduced the amount of discomfort and bloating I used to experience after meals immensely. I try to work on mindfulness every day through daily meditation, daily gratitude and yoga 3-5 days a week. I try to get outdoors as much as possible. Overall, I just try have fun in life and never forget the importance of socializing and being in my community of those I love. These are all the things I work on a daily basis and not easy to do, but worth it. (PS: I am horrible at grammar so forgive me 🙂 )

If you could tell yourself one thing looking back on your diagnosis, what would it be?

​I wish I would have told myself not to blindly listen to the doctor and explored diet. As a teen I was social, i worked out and I had fun BUT my diet was not the best. What I eat now is a total 180 from what I ate back then. I hate that the GI doctor told me that diet does nothing to help IBD. Just so disappointing. ​ ​Also that we were not encouraged to do things that helped reduce inflammation. ​Just a bummer and upsets me a lot at times. I do not believe diet is a cure in no means BUT it is a great way to help reduce inflammation and reduce your symptoms. I mean how can food we put in our body NOT impact how we feel!?

What do you do to relieve stress?

​I work on relieving stress daily. Not sure why but I tend to run more anxious. I think a lot of people with IBD do. Maybe from all the trauma we have been through?​ ​So this is something I try to focus on daily. I like to go on walks, yoga, spend time with family, talk to my close girlfriends, write in my journal, cook, go to the farmers market, sit at the beach and meditate. ​I would say those are my go to’s! So important to find what relieves your stress and do it as often as possible.

What inspires you?

​Hmm I would say the vision of a healthy me inspires me. I feel like I have opened my eyes the past couple years to a different world out there in terms of how to find happiness and health in my life and I have been working hard to get there. What inspires me are those who look at life with hope, love and determination, which makes up most of the people in my life. Another thing that inspires me are my close friends, parents and husband because they are so amazing, strong and beautiful inside and out, and to have them in my life inspires me to be the best person I can be.

Who do you turn to for hope or inspiration?

I​ turn to my IBD family I have created when I need hope or inspiration when it comes ​feeling discouraged about having IBD. It is comforting to have people who can relate to you, and just get you and say the right things to pick you up because they have been there!

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

​There are two things I do that help uplift me. First, non stop dance parties in my room while playing my hipster bbq radio station on pandora.
In terms of quotes, this helps me the most and I read it when I feel my life is out of my control and I need balance:
God grant me the serenity to accept things I cannot change,
The courage to change the things I can,
and the wisdom to know the difference. ​
What keeps you hopeful?

​My future, healthy self. ​

Rain drops on roses and whiskers on kittens. ..what are some of your favorite things when you are feeling bad?

​I would say it is all listed above. What I do when stressed and what I do to make me happy are all things I would call my coping mechanisms. The biggest one is to find daily gratitude on the shittest day. Last, be patient, compassionate and kind to yourself. Listen to how you speak to yourself in your head and question if that is what you would say to your daughter or mother if they had IBD. If not, then change that inner dialogue.

Social media accounts /website?

www.thecrohnsjourneyfoundation.org
http://instagram.com/crohnsjourney/
https://twitter.com/SarahChoueiry
http://www.facebook.com/MyJourneyWithCrohns

Hope warrior- The Wolf and Me

Hi everyone!  Happy Warrior Wednesday. It’s invisible illness month. I wanted to bring attention to the lovely Cass, the person behind The Wolf and Me. If anyone knows what it’s like to have an invisible illness, it’s her. She battles each one with a fierce attitude, and is always sharing encouragement with anyone else fighting the same fight. Send some love her way and check out her blog, instagram or twitter! Happy March, hoping spring arrives quickly if you’re dealing with any of this crazy winter like we have been. Now read on to find out more about The Wolf and Me. She has some great insight on coping with a chronic illness.

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1. I have a lovely (sarcasm) variety of chronic illnesses 11 in total! My main culprits of hard times and pain are SLE Lupus, chronic fatigue syndrome, fibromyalgia and connective tissue disease…The last is still under investigation. I have other things like Raynauds syndrome too but it’s not a naughty as the others.

2. My journey into the chronic illness world began when I was 20 although I’m sure it began at 15 however I was undiagnosed then! At 20 I became ill at university with the flu that seemingly never ended and it was here that I was diagnosed with CFS and fibromyalgia. Since then the other diagnosis have come in almost one a year.

Coping with diagnosis is tough but for me it was coping with what diagnosis meant that was tough more than coping with hearing what is wrong. Especially so young when I wanted to be going out and having fun but ended up staying in all the time sleeping….although I watched some great movies during this period.

3. Treatment for me is complicated due to the amount of different illnesses in play. My lupus is controlled through chemo currently methotrexate with cytoxan coming in and out of play….This treatment reduces my immune systems white blood cells and thus stops it focusing on destroying me. I am also on Hydroxy chloroquine for this and folic acid to help with the chemo.

For pain I take 900mg of Gabapentin a day and codeine. This helps with fibro and lupus pain.

For me though, the best thing I did was get creative again. I now paint and draw at times of extreme pain. I find that distracting myself this way keeps me active and positive. Along with this I have changed my diet cutting out dairy and introducing items like pineapple that are natural anti-inflamtories.

4. My diseases are triggered by many things, some I can control and some I can’t.

My biggest triggers are illness and stress. I can’t do much about getting sick especially when on chemo but the stress I’ve worked very hard to understand and try to control. I now know when I’m under too much stress and can pull back to find a happier place but this has left me unable to do certain things such as too much traveling.

Other triggers are certain foods like rice that cause me pain, lack of rest and the cold weather!

5.Advice for newly diagnosed : There wouldn’t be just one thing there would be an entire book full of things! But to pick one thing it would be “Don’t panic”. By this I mean don’t start Googling the diagnosis, don’t rush through the millions of questions, don’t lose sleep over it. Take it one step at a time and know that everything will be okay.

6. I have numerous quotes and songs I go to at times of trouble. I love to read certain books especially mainly any book with an internal struggle within it such as Lord of the Rings or even the Hunger Games books. I also love my vinyl collection and when I’m really struggling I turn to Fleetwood Mac as I find their songs to be the kind that reflect many emotions so there is always one that will lift you up.

7. Being hopeful really is a constant state of mind that I have worked hard on over the years. I find that by saying to myself the things I’ve achieved throughout the day I can be hopeful for tomorrow.

It’s very easy to focus on the things we’ve lost or the things we cannot do anymore, like my beloved swimming. So I find by focusing my energy on the things I can do I can be hopeful that tomorrow will be another day full of achievements.

8. To cope with stress I always head straight to arts and crafts. I find that many of them have meditative qualities, even doodling can be therapeutic.

Along with this I also find fresh air helps immensly. When I can I will go for a walk but that’s not always possible. On bad days just sitting by an open window and practising deep breathing really helps me to calm down.

9. Ohhhhhh I have a sweet tooth! When I feel really low I turn to carrot cake it is my ultimate treat! I don’t deny myself treats for fear of putting on weight etc. I think everyone deserves to have something they love every now and again if it’s going to bring a smile to their face!

10. What inspires you? This is a tough question as for me I believe hope comes from within yourself. I am constantly inspired by all of my friends and family everyday in reality. My partner for example is so head strong and grounded that this inspires me to remain in the now.

What inspires me the most are people who are positive in the face of adversity. Sometimes we become so involved on being ill that we forget that everyone on the planet is dealing with something we don’t know about or maybe understand. If you can get up and smile everyday then you are inspirational.

11. My picture would be a simple beach. The water would be clear and the sun would be shining. There would be calm colours all around me and tall trees in the distance with bird song. It would be a place I could sit and read a good book, feel no pain and maybe just watch the waves roll in and out.

12. My website all about chronic illness and positivity can be found at
http://thewolfandme.com

If you want to follow me then come say hi on instagram @thewolfandme or
on Facebook
https://m.facebook.com/pages/The-Wolf-and-Me/253558044825384

Lastly I just want everyone to know that time is a wonderful thing and however hard it maybe now it does get easier! Love to all

Hope In Vacations

I can’t say I’m entirely thrilled to be back home in -23 degree mornings (yes, that is a negative 23 temperature), but man, I missed the privacy of my own bathroom and only having to share it with one other person. Little blessings.

Vacation was different this year. This was my first non-sick/IBD related day off from work in over a year and a half. You could say I was looking forward to it. I wasn’t even realizing that this was my first vacation with my IBD. The thought did not even cross my mind at all. I was thinking of sun, and sand and not having to think about anything else but just relaxing and doing whatever I wanted. I still had the mentality that vacation was going to be about lounging and laughing and eating and drinking and just letting go.

At my infusion before we left for vacation.
At my infusion before we left for vacation.

My infusion was the Friday before we left, and we were driving to avoid the chance of me getting sick with my immunities being so low right after the remicade (we both came back home with colds anyway) and my fiance drove the whole trip. I was nauseated a couple of times and had some cold sweats but mostly got through okay. Absolutely no urgency. We stayed overnight in Georgia so I could get a goods night sleep and be in full vacation mode when we arrived on Sunday. I think part of me was thinking that not only do I have time away from work and obligations, but part of me kind of thought I was going to be on vacation from this disease as well.I was so ready for Sunday and to be feeling better. As we were driving in to FL and a few miles away from the house, we had the windows down and the sunshine filtering in and it all felt wonderful. I closed my eyes and felt the wind come through the window onto my face and just smiled, feeling so grateful that I was well enough to be there.

The first couple of days were great. We went fishing and relaxed, went out to the everglades and just did whatever we wanted. I was still seeing some blood, but I wasn’t in any pain or too concerned, just waiting for the remicade to do what it needed to and watching what I ate to try to avoid anything I knew triggered a flareup before. I smuggled my own Ketchup in my purse. I don’t drink anymore because it triggers inflammation for me, but I was able to find some iced coffee everywhere and was a happy girl.

Every time my fiance and I have previously been to Florida on vacation, we usually spend a night at an oyster bar filling up on ketchup and horseradish and crackers and beer. It’s one of my favorite memories on our first vacation together, sitting on the patio with a corona and oysters, laughing and carrying on without a care in the world.
We went out to one oyster bar on our 4th or 5th night there, and I ended up breaking down. Reading over the menu, there was a large warning specific to “persons with autoimmune diseases” that eating the raw oysters may cause severe illness or even death.
Oh.
I never thought I would cry over oysters. Or in public. At a restaurant of all places. It was like a scene from a stupid cheesy movie when the waitress comes over to ask for your order an you’re trying to pretend like somethings in your eye. Sometimes I just get so tired of this disease surprising me. And on vacation?! Vacation is where you’re supposed to leave all your problems behind, right?
As I sat quietly through dinner of french fries and my smuggled Ketchup I tried really hard not to let the tears drop down my face. I just wanted a vacation. A vacation like I remembered. Like I used to have.
When we left the restaurant, I cried for a little while though I really didn’t want to. And then I asked my fiance to help me redefine vacation. If vacation wasn’t going to be what it used to be, I needed to change the way I thought about it.
I can’t take a vacation from my disease. It’s part of me, and I can’t neglect to take precautions, take medications, and take care of myself. Even for just a little while. I can, however, go to the beach. I can take walks to wherever. I can put my toes in the water. I can walk on the pier. I can drink coffee. All kinds of coffee. And smoothies. I can do yoga. On the beach. I can go visit old trees, and get close to alligators. I can eat strawberries fresh off the farm. I can watch the sunset. I can make the most of what I’ve been given, and not focus on what I’m unable to do.

This vacation helped me realize that many things are still going to need to be redefined in my life in the future. I’m still mournful there are things I used to be able to do but choose not to do now because they make my quality of life lower due to the disease I have. It’s not easy to give up some of my favorite things. The letting go allows something else to be discovered, however, and I know that there’s more out there for me to find. I’m grateful that I was given the opportunity to try some of these things once before, and that I have memories of those moments to call on and relive when I want to. This vacation reminded me of what a gift my life is, and what a gift each moment is. I really never know if there will be a next time. Neither do you. Hopefully, I can remember that more often.

Here I am, focusing on what I can do:  a bridge in front of a tree that is over 150 years old.
Here I am, focusing on what I can do: a bridge in front of a tree that is over 150 years old.

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.