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Livin' the Crohn's Life by Livin' The Crohn's Life - 2M ago

Sometimes, it can be easy to feel like we don’t matter. That unless our name has a tiny check mark next to it, what we say is not important. That unless we have the follow count of a small country, we can’t influence others. That unless we are in a position of power, our voices won’t be heard.

Sometimes I debate whether or not I should post the things I write. Is anyone going to read them? And if yes, are those people actually going to be affected by what I say? Am I creating change, or just saving more data to the cloud that will be ignored?

It’s easy to fall into traps like these. It’s easy to look around at people who are smarter, prettier, more popular, or more talented than you and convince yourself that because that person is in some way “better,” you don’t matter.

But you do matter. The words you say matter. The actions you take matter. They matter a lot. And it’s important to know that.

We are all different. We have different gifts, different challenges, and different perspectives. And it is because of those differences that we all matter; without one of us, the world wouldn’t be the same.

There are parts of all of us that nobody sees, but those parts of us still matter. And there are things we say that nobody hears, but those words are still important. Something big that I’ve realized is that you can’t let other people determine your own self worth. You matter, and that’s a fact. And you don’t need other people to validate it for you. Because even when no one sees you or listens to what you have to say, you still matter.

So, why does it matter that you know that you matter? (Try saying that 10 times fast). Well, without self-worth, you won’t have a purpose. You won’t have a reason to fight through whatever obstacles are in your way. And when you don’t have a reason to fight, it’s easy to let yourself fall into a dark place, and it’s easy to get stuck there. But you have the ability to avoid that. All you have to do is tell yourself “I matter.” The thoughts you have are valuable. The words you say are important. The actions you take make an impact. You, and everything you do, and everything you are, matter.

It’s good to remind yourself that you matter to other people. But the best thing you can do is find at least one reason why you matter to yourself and remember it. And the next time you get caught in a dark place, you’ll have that reason to pull yourself out. And no one can take that reason away from you, because it’s the truth; you matter.

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I’m going to confess something here. Sometimes when I’m really bored I go on pinterest. And after a few minutes of scrolling through crockpot recipes, if I’m really bored, sometimes I search for “inspirational quotes.” And I watch the swirly thing swirl and wait for the sunsets and calligraphy to pop up on my screen.

But that’s not my confession. My confession is that I hate myself for doing this. And I hate “inspirational quotes.” Why? Because a lot of them are wrong.

For example,

“Make your own happiness.” Um… okay is there a recipe for that? Like do I have to smile all the time because my face gets tired easily.

“Just go with the flow.” Okay sounds great thanks. But what exactly is the flow? Is my flow going the right way? Probably not…

“When nothing goes right, go left.” Awesome! Cool! That seems easy. Wait… which way is left again? Can I go straight? What about east? Oh that’s the same as right? Wait shouldn’t I be going with the flow? Am I creating happiness right now? Ahhh!

Who comes up with these things? Do they really think that making sunshine is the key to life?

I used to love quotes like these. I would by lying if I said I didn’t have them hanging in my room. In fact, this used to be one of my favorites: “Life isn’t about waiting for the storm to pass. It’s about learning how to dance in the rain.”

It seems like a good perspective to have. When there’s a storm cloud above you, don’t hide in your basement and pout. Go outside and dance! Be happy!

But there’s a problem with this perspective, and there’s a problem with the message this quote sends.

Yeah, it’s fun to dance in the rain. Until you get wet and cold and tired. So sure, if the storm is short or if it’s not raining that hard, dancing in the rain might work out. If you’re nervous for a test, you can learn how to motivate yourself with your nerves instead of waiting for them to go away.

But what do you when the storm isn’t stopping, and it is raining hard, and there’s thunder and lightening? Should you still dance in the rain?

According to the quote, you should. But that’s where it’s wrong. Because this quote suggests the false idea that we always have to be happy. That if we aren’t happy, we’re letting the storm win and we’re failing as individuals.

However, happiness is not a state of being, or an end goal, or anything besides what it actually is: an emotion. And having one emotion all the time is basically the same as having none.

It’s true that life isn’t about waiting for the storm to pass. It’s not good to hide and let your problems, your pain, your sadness, and your fear keep you from going places and doing things. But life is also not just about dancing in the rain. Forcing yourself to be happy without taking time to feel your honest feelings, accept your challenges, and cope with your struggles is the same thing as hiding from them.

As a society we’ve created the dangerous idea that if we aren’t happy, something is wrong with us. That If we can’t figure out how to dance in the rain, something is wrong with us.

But it’s okay to sense the storm surrounding  you and be upset. It’s okay to hear the thunder and be scared. Because sometimes it’s not possible to dance in the rain, and that is okay.

I dislike inspirational quotes because while they can help us seek out the positives, they fail to tell us that it’s also okay to recognize the negatives. They send the message that happiness is the best way to handle pain, but that isn’t a realistic approach.

No, life is not about waiting for the storm to pass. It’s about recognizing the storm and accepting it for what it is. It’s about pulling on rain boots and a rain jacket and borrowing your friend’s umbrella. It’s about going outside and feeling the wind blow through your hair but not letting it knock you over. And if you want to dance in the rain, go ahead. And if you don’t that’s okay too.

You don’t need to be happy all the time. Of course it feels good to be happy, but once in a while it’s okay to let yourself feel frustrated and sad and scared because those are feelings too. And even though you might always have to brave some kind of storm, if you’re not in a dancing mood, it’s okay. Because you don’t have to dance in the rain.

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Livin' the Crohn's Life by Livin' The Crohn's Life - 6M ago

It’s January 1st. Today, people are working out, eating salads, and meditating. But in three months, a good chunk of them probably won’t be. That’s the tough thing about new years resolutions; they’re hard to keep.

Imagine that your goal for the new year is to exercise every day. On January 1st, you go to the gym. On the second, you go. On the third, you go. On the fourth, you go. But on the fifth, you have a cold. You tell yourself, “whatever, it’s just a cold, other people workout when they have a cold,” and so you go. On the sixth, your cold is pretty bad, but you go anyways. But on the seventh, you’re really really sick. So you stay home and don’t exercise that day. Does this mean you failed? Has your success been ruined after only 6 days by something out of your control? I guess it depends who you ask. If you ask me, I would say your goal was pretty bad in the first place, because your ability to achieve it is out of your control. All it takes is one day without exercising and BAM! You failed!

It’s hard to set good new year’s resolutions because there are so many factors in our lives that we can’t control. And when you’re chronically ill, your body is likely one of those things that feel out of control. So how do you set long-term goals when it’s almost impossible to know how you’ll feel the next day? Here’s what I recommend:

Focus on routines, not on results. Don’t set a goal to lift “x” amount of weight within 2 weeks. Because if you’re struggling for part of those 2 weeks and you don’t reach your goal, you’ll feel disappointed even though you couldn’t control the situation. Instead, create a goal that is focused on a routine. Something open-ended like “exercise 3 days a week.” When you set a goal focused on a routine, you can achieve it even when you hit a bump in the road, and you can change your approach based on how you feel. If you aren’t feeling well, maybe you only exercise for 10 minutes that day. Or maybe you take a walk instead of going to a class at the gym. While your fitness level might not improve as quickly as it would have had you been focused on a specific result, you save yourself from “failing” due to your illness. And in the end, the routine you form is more important than one result.

There’s no doubt that chronic illness can make you feel like you’ve lost control of your body. It can make you think that you are a failure when you can’t do something because of how you feel. This year, the challenges you face due to chronic illness might stay the same. And they will probably still be out of your control. But setting routine-focused goals gives you back some of that control and works with your condition instead of against it so that you can succeed.

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What do you think of when you hear the term “awareness month?”

Colorful ribbons? Charity walks? Fundraisers? Pink football jerseys?

In some ways, I think awareness months are great. They recognize conditions that are rarely cared about by those who don’t have them. They are times when people come together and show support for others who are sometimes like them, and often times not. They inspire people to donate to important causes. And they help people realize that they aren’t alone.

But when October ends and November begins, we shed our pink shirts and pull out the purple. We throw out the pamphlets from last week’s charity event and start planning our outfit for the one next Saturday. We move on from October’s cause(s) and onto November’s.

And I get it. I get that we can’t possibly support every cause, attend every event, donate to every foundation, and spread awareness about everything all the time. I get that when October ends, we do have to shed the pink and move on with our lives. And I get that one month of advocacy is better than nothing.

But what I don’t get is why we send the message that recognizing a cause for one month each year is enough.

It’s not.

May is IBD awareness month. But my condition is chronic. And yes, one month of support is great because there are many conditions that receive hardly any attention. But when that month ends, I’m still the same person. I still have the same disease. And I still want people to care as much as they do in May.

Awareness months are great because they bring people together. But more often then not, they don’t keep those people together. They are a glimpse into a life where people truly support and advocate for others that they might not even know. But then that glimpse is over and it feels like it will be forever before people will care again.

The causes we support during awareness months are causes that affect people every single day. And those people deserve more than just one month of support. 

So here’s my idea: we keep awareness months the same as they’ve always been. But during the other 11 months, we don’t turn a blind eye to the struggles of other people. So when May ends and June begins, we can still put away our purple. But we can’t stop caring. We can’t stop supporting. We can’t stop advocating. Because on June 1st people are still fighting IBD. Every day of every year people are dealing with something, and every day of every year those people deserve support. So we can move on from one charity event to another. But we can’t forget about the people who we raise awareness for. They don’t get to pack up their disease and wait for next year’s fundraiser; they need our support and our understanding all the time. 

We are all dealing with something. And even though we don’t all have an awareness month, or week, or day that recognizes our struggles, it doesn’t mean that they don’t matter. So the point I’m trying to make is that although awareness months do raise awareness, we don’t need matching shirts, fundraisers, and charity walks to show people that we care. We don’t need to wait around for a specific month or week to show support. All we need is to be mindful of what other’s might be going through and be there for the people around us as much as we can, whether it’s awareness month or not. 

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Livin' the Crohn's Life by Livin' The Crohn's Life - 11M ago

If you had to teach people one thing that was important to you, what would your lesson be? How to cook? How to draw? How to remember where you parked at the mall? Sign me up for that class, please. 

7 years ago when I was in third grade, the kids in my class had the chance to get up in front of everyone and teach something to each other. And I remember this day very clearly because I took it upon myself to teach the class how to draw. Now, even though I don’t remember if I taught my friends how to draw a dog, or a dolphin, or a duck, I knew that it was going to be the best day ever because my classmates would finally stop drawing ugly stick animals. So I proudly stood in front of the whiteboard and carefully drew the best animals I could, step by step. When my turn was over, I sat down and listened to the next person to teach the class how to put on a swim cap, and I guess the story ends there. 

As you can imagine, I’ve come a long way since third grade. I’m sure you have too. But I can’t think of a time since that day that I’ve taught a group of people something that I truly care about. And that’s sad because there is so much that I want people to know. About me, about each other, and about life in general. But in the real world, we aren’t just handed opportunities to sit everyone down and teach them something. We have to make those opportunities for ourselves. So, 7 years later, here I am, writing to you. I may not have a whiteboard, or a worksheet, or a presentation, but that’s okay; there won’t be a test on what I say. All I ask is that you read my thoughts and try to learn. 

Below is something that I wrote a little while ago. I’m calling it “If I could teach the world,” because it’s about what I would do if I could teach the world. Original, right?

~

If I could teach the world, I would teach it empathy. Because a world without empathy is a world filled with people who can’t understand one another, and there’s no point in a world like that.  

I want to teach people to show empathy because, without it, they can only comprehend what’s visible. And there is so much more to all of us than what’s on the outside. Without empathy, we see the shell of a person, and we can only understand what’s within the contents of that shell. But inside that shell there are ideas. There are feelings. There are memories. There is pain. But without empathy, we can’t understand anything inside that shell because we are too focused on the shell itself. 

I’ve realized that often times, a person’s shell is a lie. On the outside, I look healthy. But on the inside, I am struggling to feel good. Now, you might be thinking it would be much easier to just teach people about chronic illness than to teach them to have empathy. But not everyone is interested in the science of my disease. Not everyone will think my Crohn’s jokes are funny. However, everyone can try to understand what my life is like. 

And here’s the thing with empathy: it’s all about understanding other people by putting yourself in their shoes. With that being said, you don’t have to live someone else’s life to understand how they live. And you don’t have to see what’s inside someone else’s shell to believe that it’s there. 

I don’t want people to live my life; I want them to understand it. And people don’t need to see the challenges I face to believe that they’re there. 

By now you are probably thinking, “that’s great that empathy is all about understanding and believing and whatever, but how do I do that?”

Well, lucky for you, I have created a cheesy little acronym to help you become more empathetic. It goes like this:

E – Evaluate. Think about someone’s actions/body language and reasons why they might be behaving that way. 

M – Mindfulness. Be mindful of how a person is feeling beyond what you can see on the outside. Also, realize that while something like a paper may seem small to you, it might be a big deal for someone else, so think about how this person specifically perceives their situation. 

P – Pretend. Imagine that you are that person for a minute. How would you want someone to respond?

A – Ask. If you don’t know how someone is feeling, ask them! Don’t assume that a person is fine just because they look ok. 

T – Think. Reflect on whether your attitude towards this person has shown them that you understand and/or feel what they are experiencing. If not, repeat steps P and A. 

H – Help. Rather than feel bad for someone, ask them if there is something you can do to help them feel better or provide some words of encouragement. 

Y – Yay! You have shown this person empathy and hopefully helped them feel more understood. 

So, the next time your friend cancels plans because they’re tired, don’t assume they are being lazy or rude. You don’t know what tired feels like to someone else, but you can be understanding and supportive of their decision to rest because you’d want that reaction from them if you were in their place. 

And as you go about your day, think about the people around you and what they might be dealing with. And when you’re observing or interacting with others, think about how they feel inside and put yourself into their shell; it just might change the way you see things.

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Disclaimer: I am not being sponsored by any of the apps below to promote their product. These are just some apps I find helpful and I hope you do too! I also realize that there are probably thousands of apps out there that do the same thing as the ones I mention but these are just my top 5 and they may not be everyone’s top 5. 

I know you are probably thinking, “5 apps? How much storage does she think I have?” But the thing is, you probably don’t need all 5. If you don’t take medicine, you don’t need the medication tracker. And, these apps aren’t going to transform you into some super organized, perfect person who never forgets about anything. But hopefully, they will make it easier for you to be a little more on top of your game. 

After only two paragraphs of background rambling (a new record!), here are my top 5 apps to get your life as together as possible. 

1: Round Health – This app is a medication tracker and I think it is the best one there is. You enter in your medications, dosages (not required) and the time you want to be reminded to take your meds. You can also set a time frame around your reminder and be reminded a few times within the same hour or two to make sure you don’t just delete the notification and forget (like me). This app also has a calendar and every day you take all of your meds (by clicking “taken” on the app or swiping on your lock screen), the day gets filled in. This helps you stay motivated to take all of your meds and you can track your progress. Of all the medicine reminders I’ve tried, I defininitely put this on on top!

2: Bullet Journal – I have heard a lot about paper bullet journaling lately and really want to get myself into it. Most bullet journals have several trackers and planners to stay on top of things in a colorful and creative way. This app does not have all of the functions of a traditional bullet journal, but there is a habit tracker, to-do list, and mood tracker. The app itself is very simple and the design is visually attractive. If you are looking for a more in-depth journal this might not be for you but personally I think it offers just enough. 

3: MyIBD (or a similar app depending on your physical/mental health conditions) – This app is helpful in tracking your symptoms, making it super easy to answer questions at your next appointment. I use this app to track my Crohn’s Disease but I’m sure there are apps for most other illnesses as well. If you can’t find an app specific to your condition, there are also general health/chronic illness trackers that will get the job done. I prefer this app for myself because it is easy to see how my entries compare over time and all of my information is ready to show my doctor if I can’t questions about my symptoms on the spot. 

4: Notes – Yes, I know this probably came with your phone and is nothing exciting. But the notes app is super helpful. There are tons of similar apps out there so you don’t really need to have this exact one, but I like the simple design of this app even if it is boring. All you have to do is create a new document and type whatever you need to remember, save, or share later on. Notes makes it easy to share information with other people and is also a great place to write things down to share at a later date. 

5: Headspace – Headspace is a mindfulness app that allows you to choose a focus and meditate to hopefully resolve some of your stress. Before I got this app, I thought that meditation was just for people who sat with their hands on their knees and practiced breathing excercises for 3 hours straight. However, headspace has totally changed my mind about meditation and I no longer consider it a “weird” activity. Chronic illness can cause people to deal with a lot of stress that is often hard to manage when combined with the regular stresses of daily life. This app helps me to unwind at a specific time of day (that you can set for yourself) and relieve some of the stress that I feel. 

So, there you have it! My top 5 apps for a more-organized lifestyle. Let me know if you’ve tried any of these apps before and leave any suggestions for apps you like in the comments below. I hope you find some of these resources helpful!

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With summer finally here, I thought I’d share a few ideas of how to pack for vacation with IBD. This is the first post in my “Five Fast Tips” series, a collection of easy short-cuts and tricks especially helpful to those with IBD. 

~
  1. Use a pill box!
    • use (a) pill container/s that has/have one box for each day and bring 1-2 days more than you need. This helps you  emember to take your medicines and provides you with easy access to them without needingto deal with all of the annoying bottles every day. If they are neatly packed in a pill box, you won’t have to worry about spilling them, and I don’t thinkanyone wants to swallow 8-month-old hotel floor lint. 
  2. Actually bring them!
    • It sounds simple enough, but let me tell you, it happens. And who wants to drive to a random Walgreens, argue with the pharmacist about getting your prescription medicine right there, right then, and waiting 2 hours for the three pills you need, all while thinking about the ones you left sitting on the counter at home, when you could be relaxing on the beach? Even if you are an expert packer, double check that you actually take your medicine with you. 
  3. Keep things close.
    • Picture this: Let’s say your name is Bob and you have IBD, which you manage with pills that you take 4 times a day. You’re finally on the airplane, ready to sit back and dream about all the fun things you will do on your vacation. You are so proud of yourself for pulling it together and packing all of your medicine neatly in your carry on bag. You lay back and close your eyes; this flight is gonna be a long one. And then, with a jolt, you wake up to your phone buzzing in your pocket. Your 4 o’clock alarm is going off, reminding you to take your afternoon medication. If you don’t take these pills within 30 minutes, your symptoms are going to go out of control. Relax, you tell yourself. They’re right here in the side pocket of the bag. You are so prepared for this! You reach under your seat, only to find that your luggage is nowhere to be found. That’s when you remember that you  had to check the bag at the gate. And your neatly packed pill box is now under the plane completely out of reach. Did I mention there are 3 hours left before landing? Oh, and the baggage claim is all the way on the other side of the airport. And this is a holiday weekend, so you can expect 15-30 minute delays. And by the way, you’re not talking about a misplaced Tylenol. The person sitting next to is not going to be able to help out. So, if you think this scenario sucks, lucky for you, there are ways to prevent “fails” like this one. When traveling, always keep your medication in your personal item. Whether it be a purse, or backpack, or briefcase, or whatever, do not let your precious pills go under that plane! Even if you don’t take medication during the hours of the flight/ride, keep them close in case of delays or emergencies. Don’t be a Bob. 
  4. Snacks. Lots of them.
    • This goes for everyone, IBD or not. Especially if you are going on a long trip. Make sure you food you know is “safe,” too. There’s nothing worse than having to choose between a spicy fried chicken sandwich or a creamy pasta dish on a long flight when you know very well that both of those foods will result in the biggest stomach ache of all time. So bring your own food, and watch everyone else glare at you while you much on granola bars when they’re stuck with some nasty airplane food. 
  5. Pack in advance!
    • It’s always smart to pack in advance. That way, you have time to get the things you might not have and are ready to go when it’s time to leave. While it’s easy to blow things off until the morning of, when you have to pack a few extra things due to IBD, this isn’t such a good option, and that’s okay. Make sure you have enough medication for the time you will be gone and bring your medical information, medication list, and other “emergency” items should something come up. It is also wise to locate a pharmacy, hospital, and/or doctors office near your destination should you need medical attention while traveling. 
Please comment below with any of your own tips or ideas for my next Five Fast Tip topic!
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The CCFA’s TakeSteps walks are by far the nation’s biggest IBD events of the year. Through these walks, funds are raised, awareness is spread, and most importantly, support for an otherwise hidden disease is provided for millions of American’s who thought they were fighting alone.

It’s a time to celebrate the breakthroughs of last year and hope for a cure in the near future. It’s a place for IBD fighters and their families to come together and realize that they aren’t alone. It’s an event that not only raises money for research, but encouragement for those who tirelessly fight IBD every day. Plus, they do have free bananas, so, I mean, who wouldn’t want to show up? 

I know you’re probably thinking, “seriously? That’s just like every other charity walk! They’re all the same; depressing stories of sick people, cheesy team names, matching shirts, and the bothersome task of hounding down your neighbors for cash to reach your fundraising goal.” But for people who live with IBD, putting the cheese aside, walks like Take Steps are a big deal. 

But why? Why do I walk, you ask? (Or maybe you don’t care, but just go with it, ok?) Most people would assume that I walk for myself. It makes sense; I, the Crohn’s fighter (I refuse to say sufferer because my life does not suck), walking to raise money to cure the suckish disease that I have. To meet new people. To eat free bananas and collect pamphlets telling me all of the horrible complications that could occur with the medicine I injected into myself that morning. However, while all of that is true (beside the pamphlet part; those are boring), I don’t walk for myself. I walk for them. 

Now, I sure you’re wondering who they are (once again, if you don’t care, just go with it.) In truth, I’ve never met one of “them,” but I do know they exist, and I do know they need help. They are those who, like myself, live  with IBD, but unlike myself, aren’t able to live a pretty much normal life. They are those who, just like me and many of you, have tried bazillions of IBD medications, but unlike me, weren’t able to find one that worked. They are the those who, like myself, have gotten very sick at one point, but unlike me, not been able to see a doctor and/or pay for the treatment they so badly need. They are those who, just like me, who want to raise awareness and find a cure, but unlike me, are unable to do so. But sadly, we often forget about “them.” We show up to “charity walks” and look around at all of the people, often times close friends and relatives, who identify as fighters, warriors, and survivors of a disease, and we think to ourselves, “these people aren’t sick! They’re normal people! They don’t really need my help; they seem totally fine!” But the truth is, there are so many more people who are too busy fighting, too weak, too sick, and too exhausted, that they can’t show up to the walk, they can’t raise money, and they can’t help find cures. 

So, when I show up to a TakeSteps walk every June wearing an ugly t-shirt, eating a free banana, and holding a stack of medical pamphlets I’m never going to read, while I’m walking for myself and my disease, I am also walking for “them” and their disease. Because it’s not my disease; I’m not the only one. And neither are you. 

So, how can you become a part of TakeSteps? It’s surprisingly simple. There are walks all across the country that you can become a part of. On the CCFA’s TakeSteps website, you have to option to join a team, create your own, or walk by yourself. (But there are tons of people there anyway, so you’re not really alone). To be a part of the walk, you don’t even need to fundraise, or wear a cheesy shirt, or do anything besides show up. So, while it is obviously more fun to organize a team, have matching outfits, and reach a fundraising goal, if you are uncomfortable and unable to do so, the CCFA respects this and welcomes your participation. 

Whether you have been a part of TakeSteps for 5 years or have never heard of it before, take some time to look into a walk near you. Remember, simply showing up and providing support for IBD is enough. And, if you fall into the “them” category, know that there are people who are supporting, raising funds for, and walking for you. 

So, you might say that TakeSteps is just another “charity walk.” But you know what? That’s ok. Because no matter how cheesy, how awkward, how annoying you find it to raise money, throw on some purple, and show up to a walk at 9 a.m., realize that your efforts are needed. Think about the hundred+ other supporters who did the same thing as you. Now, multiply that by the number of walks in the country. Now, think about all of those people, many of which have IBD and many of which do not. Think about how much support and how much awareness is created during those few hours on a sunday morning. (You can go home and sleep afterwards.)

Each of those people who take the time and the effort to show up to TakeSteps prove a point. They prove that IBD, no matter how invisible,  should not be a hidden disease. They prove that taking complicated medicines and eating special diets don’t make you weird. (I mean, I’d much rather get a free banana that a free bag of stale almonds!) And most importantly, they prove that those who fight IBD are not alone. So, if you are able to, strive to be one of those people. And if you aren’t, know that I, along with many others, are walking for you. 


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