Support

Health Activist Writer’s Month Challenge- Day 14

Posted on by flareuphope

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

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

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

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

Or someone shares their experience and gets shamed for it.

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

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

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

It gives me all the ill feelings.

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

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

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

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

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

Hope Warrior- Shawn

Posted on 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.

Well-Belly-Web

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!

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

Posted on 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!

@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 in Support Systems

Posted on by flareuphope

I have never been as sick in my life as I have been over this last week and a half. I’m starting to feel like there’s some improvement on the horizon though. I wasn’t able to make it to work today, but I did, so far at least, keep my bathroom visits under 10. I don’t know what the deal is but I seem to be the sickest in the middle of the night. Starting around 1 or 2 I’ll be up every few hours with some severe cramping and the usual toiletry images. This happened again last night but I was able to go about 6 hours today without a painful visit. Hopefully things continue to improve. 

I’ve been sipping on some bone broth daily, trying to get some nutrients. I swear this is a superfood. Thank you to @mangiapaleo for introducing me and @zucchiniandcarrots  for encouraging me to drink it (look them up for awesome paleo and autoimmune protocol dishes). Also thank you to everyone else on instagram and otherwise who has been encouraging my healing and sending positive thoughts and well wishes my way.  The floodgates of the IBD community support have opened since I started feeling so terribly, and I don’t know what I would do without this encouragement and cheer. Every single word helps and gives me hope that we will all heal. This disease, like any autoimmune disease is hard. It’s hard emotionally, physically, mentally, spiritually, it makes you think about every answer you had in your life previously and what you thought you used to know. It challenges you to see any sort of positive outcome when your in the depths of pain and depression. But there is light out there. And that support is out there. 

If you’re suffering from an inflammatory bowel disease, or any autoimmune disease in general, I really encourage you to reach out to support groups, online forums, Instagram communities or even other bloggers. I personally don’t have a Facebook but I’m sure there are support groups out there as well. There’s only so much understanding that your loved ones can provide. And believe me, I am blessed enough to have a very supportive, loving and encouraging support system. My family and my boyfriend have been my rocks through this, listening to me when I cried out of fear or pain, making me smile or laugh when I needed some light, calling to check in, or just wrapping me up in their arms when I wasn’t feeling strong enough. Even my dog has spent the last week snuggled up behind the back of my knees, offering comfort and love. Oh boy, here come the tears. I am so lucky to have and so grateful for all them. There have been times over the past few days that I wanted to just give up. But I didn’t. Mostly for them, because I knew that they were cheering for me. 

 Seriously though, you HAVE to surround yourself with love and beauty in these situations. If you don’t have the physical support system that I do, look elsewhere. I’ve made so many connections with my #ibdfamily on twitter, instagram and through this blog. Your family and friends can be there for you as you go through this, but it’s very hard for them to understand what it’s really like. They certainly try, but there is something to be said about talking with someone who knows exactly what your going through and can relate to your fears, side effects, pain and attempts to heal because they are going through it to. And I really think it helps when you can support them as well. We are all in this together, and the more we support each other, the more awareness we spread, the more positive impact we have, and the more opportunities we create for a cure to be found. 

“It is important that we share our experiences with other people. Your story will heal you and your story will heal somebody else. When you tell your story, you free yourself and give other people permission to acknowledge their story.” Iyanla Vanzant.

 

What is your story? What are you going through right now? How can I help give you hope?

Share it with me.