Carry On Bags

In light of one of my favourite holidays, Canada Day, during times of glaring contrast with our southern neightbour, it’s so easy to see where Canada outshines other countries in the world, specifically in terms of our health care. Not once did I worry about a bill or affordability in terms of seeking immediate medical care, and with the amount of care I actually needed, without a doubt my parents would have gone bankrupt if we lived elsewhere. We live in a country that allows access to doctors, nurses and medicine without having to sacrifice somewhere else in our life because of the financial strain. And for that I am grateful.
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But this does not come without gaps. Severe gaps in our system that not only IBD patients face but anyone who has gone through a medical trauma or catastrophic injury. Our practitioners can hook up an IV, demonstrate how to maneuver an ostomy, preform hours of surgery, rehabilitate your muscles, plaster on a cast, staple a gaping wound, administer antibiotics, or empty drains. But what happens when you’re physically “better?” ….You’re sent on your way, out of the hospital with a treatment plan and a course of action to keep you healthy, left to navigate the real world on your own. Yet no one tells you your life has drastically been thrown off track and your SOUL has been turned upside down.

Some days I don’t give a second thought to having a J-Pouch or colitis or any sort of inflammation. But I can confirm that not a day goes by that I don’t actively practice mindfulness and consciously put my anxiety and ego in check by vigorously taking care of my mental and holistic wellness. And do you know how hard it is to learn how to take care of my emotional wellbeing without the help from a single professional? HARD.

During a time with organizations like CAMH and BellLetsTalk taking an effective approach to dialogue and stigmatization of mental illness, why aren’t our hospitals and doctors being more proactive to patients of the system? How is it that I spent 14 days at Mount Sinai going though the worst experience of my life without ONCE being asked how I’m feeling emotionally? Without ONCE being offered counselling? Without ONCE being tossed an Ativan?

Why is it that we have to be diagnosed with an illness, or identified has having a mental disturbance before we are offered help? In fact why are we left to seek that help on our own before professionals offer it? I consider myself an extremely reflective and self-intuitive individual but I have yet to check off “find therapist” from my TO DO list which has been on there for the past 3 years. And what about the people who are sent back home and are not as self-aware? Who genuinely just believe there is nothing worth looking forward to or their life sucks and no one to help them recognize that there is positivity after trauma?

Come on Canada, we can do better.

I went to a session about IBD and mental health in March and there were some absolutely wonderful individuals on the panel sharing their stories emphasizing the importance of advocating for yourself and seeking support because of the mental toll the disease can take. However they also discussed the resources and social workers available at hospitals for crisis patients during their time there, before being sent home. And I actually left feeling deflated since those options were never once presented to me. Perhaps I wasn’t “crisis” enough? (Sitting in isolation with C-Diff and an obstruction….on my birthday).
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And what about the caregivers? Where is the support for family members who watch their loved ones wither away or who cry endlessly yet are not able to help? For the people who’s own lives have been thrown off course, careers put on hold, and own emotional health taken a beating? We preach about being there for each other but not once has a medical professional offered help for my family.


In the face of a new political climate I urge you to continue this conversation and take part in an advocacy for anyone who is sent home from our health care system without being quipped to handle the distress our minds have gone through. Sure we can fundraise and send a #bellletstalk tweet. We can participate in our walks and rides and post inspirational quotes, but how often do we show up at someone’s front door unannounced to show that we care? And we can be there for one another physically in person.  And how often do we hold those in power to a higher accountability (and rather responsibility) to make those who are ignorant to the resource, more aware?

I haven’t written for my own blog in a while because I’ve become disconnected with the content behind struggling with IBD. It’s so much easer to find something to write about when you’re experiencing new aspects of the disease every day. People who are out living their best life rarely want to sit down and write about the pain. But what I haven’t become disconnected to is that urge to reach out to others; To have those authentic, vulnerable conversations about chaos, pain, and darkness, because within that exposure is clam, strength, light and humanity.

So many times I’ve thought about shutting this blog down. To end this journey and bring it to a conclusion by thanking the readers and moving on. To delete it, deactivate the account, and be left with only the memories of the positivity it brought.

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Except I’ve decided to make a shift: Although theoretically the content was supposed to be about the ostomy and IBD, in reality there is SO much more to Baggage Claim. And I believe we have a lot more work to do….

I think every single person has a story to share, and I want to help you share it. There is so much power in the human capacity to show compassion by simply listening. I’ve shared my story. You’ve heard it. Now please, let me help share yours. Use this little platform I’ve built to highlight the gaps in our system in an effort to simply make them better. Use this outlet as a means of support that our health care structure lacks. Use this channel as an influence for inspiration, encouragement and connectivity.

Use me to help you with your carry on bags:

Stacey.willins@gmail.com

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IBD Advocacy

  1. What form of IBD do you have?
    The form of IBD that I have is Ulcerative Colitis which means my disease affects my digestive tract, specifically in my colon. When I was first diagnosed it was only the last couple of CM and was considered fairly mild, however about 5 years later the disease progressed throughout the entire large intestine and I was unable to achieve remission which is when I had my colon removed. I know some rhetoric around having a colectomy gives the impression that you can’t have a colitis if you don’t have a colon however after having mine removed, I would never say I am “cured”.

    I have a J-Pouch now, which is an internal reservoir using my small intestine and by no means would I say my digestion is “normal,” as well as all the secondary side effects like canker sores, inflammation of the joints, (especially in my hands) and chronic fatigue ….so I definitely still say I have IBD

  2. Why is IBD advocacy important?
    I try to advocate for people with IBD by simply sharing my story. I  listen to other people’s stories, and connect to them or reach out to them. I think it’s easy to be embarrassed by this disease and want to hide, but I find it’s SO powerful to share our authentic selves and bare our souls to one another.

    When I first started writing about IBD and having an ostomy, I decided  my tag line would be “everybody comes with a little extra baggage,” because everyone  is going through some shit. I honestly believe that if we just stopped and listened to people’s stories about not just hardship and struggle but rather resilience and bravery, we would live in a world with so much more compassion and empathy. So my little bit of work in the IBD community has very simply been by just sharing my story of all the guts and glory and trust that people will be kind and open minded, and in turn share theirs.

  1. Name a Socially awkward moment?
    There are SO many stories I could share. When I was very ill there were multiple times I had accidents in very public places like in grocery stores, restaurants or in my car. This is the same with having an ostomy, I can relate to panicked moments of having leaks or needing to change my appliance in a gas station.

    But there is one moment that really comes to mind. Because I work in child care, I’m considered part of ratio and can never leave the children on their own. One of the worst parts of having IBD for me was the urgency and incontinence, so not having immediate access to a washroom was really problematic for me. Thankfully I had an amazing Director who was incredibly understanding. One afternoon I was with a group of kids and needed the washroom so I called her on the walkie talkie to come relieve me, and then sprinted to the washroom where I spent probably 10-15 minutes. I felt awful because I knew how much work she had to do and it wasn’t her job to be in program with the kids but here I was taking up her time. By the time I walked back to my kids, I had to go to the washroom again, and just told her, “sorry you can’t leave yet,” as I just turned around and went back.

    This moment was particularly hard because it was when I realized I was in no condition to be working. I couldn’t run a successful program if I couldn’t even get out of the washroom, and I really just was too sick to be there so this was the moment that I knew I had to ask for my first leave of absence.

  1. A common stigma you have run in to:
    I know so many people want to help and offer advice but one of the most common stigmas I run into is that by changing your diet you can cure your flare up. This is really not true. It’s an autoimmune disease, it’s systemic and by going vegan, gluten free, dairy free, vegetarian, it will not cure you. Neither will essential oils, yoga, exercise, or natural supplements.

    Do not get me wrong, I strongly, strongly believe in natural, organic remedies, a clean and healthy diet with proper nutrition and hydration, and that a holistic approach to your well being is so benefical to your health, and very likely will help your IBD. But in reality there is no known cause or proven cure and I personally was very resistant to people trying to cure my flare up by telling me to just mediate more. It’s hard not to be insulted because as a patient you bet your ass I was doing EVERYTHING I could to save that little organ of mine

  2. What do you want other people to know about IBD
    I think people forget that there is a massive mental and emotional piece that comes with IBD so it’s just as important to take care of your thoughts and heart and holistic well being. For me personally the mental toll really came after I had my colon removed, and there really isn’t a lot of support in the medical community for your emotional wellness, so it’s really important to be proactive and advocate for yourself when you notice something else is “off” inside of you. I could honestly talk for hours about the mental impact IBD causes for patients but I just want other people to know that although people may look okay, physically IBD is really hidden and that rings true even if they’re in remission too, so again reaching out to one another is so so important and being kind and connecting to other people is really powerful.

    That being said it’s also so important to continuing fundraising and raising awareness, so there is a MASSIVE amount of gratitude I feel for anyone who donated to this year’s Gutsy Walk. We raised over $6000 for Crohn’s and Colitis Canada and I cannot express how appreciative that support is. Even just simply showing up to walk beside us means the WORLD and I’ll never accurately be able to explain my humble thanks.

    Keep talking. Keep sharing. Keep helping to carry others’baggage.

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A Hard Pill to Swallow (Part 2)

About a year and a half ago I posted an article written my best friend, Sara to shed some light on her baggage dealing with Eosinophilic Esophagitis. Although we don’t have similar symptoms, we both face an autoimmune disease attacking our digestive tract, and we both know the anxiety of facing the real world when people are unaware. SO here is a follow up to her first post about real life challenges (and in my opinion real life resilience, perseverance, and bravery). Sara has been nothing but supportive for me and is the epitome of compassion and grace. Please, read her story with an open mind and show empathy for anyone who is struggling.

” In honour of the upcoming National Eosinophil Awareness Week, I thought I would once again share a few personal stories regarding my rare autoimmune disease. I had written a blog post in the past where I outlined the definition and basics of my diagnosis and disease, Eosinophilic Esophagitis, or EoE. This time around, I thought I would discuss some of my day-to-day life and struggles with EoE. 

To start off, I want to acknowledge how blessed I am to have been diagnosed with EoE over 12 years ago by an understanding and educated gastroenterologist. I am well aware how lucky I am that I have never needed invasive surgery, or a feeding tube which many sufferers of EoE have had to resort to. I am also very lucky that I did not have awful EoE when I was an infant or a child. My heart goes out to all the babies, children, and parents of kids with EoE. 

That being said, EoE still affects my life on a daily, if not hourly, basis. I have tried to explain to others my mindset about eating a family meal together, sharing a meal at a restaurant, or simply having to eat a meal in front of coworkers, my students, family or friends. Throughout the years I have had plenty of embarrassing experiences. I learned that when I go out to eat, I should situate myself close to the bathroom. Prior to sitting down for a meal, I visually or verbally check to notice where the nearest washroom is and plan my exit strategy. I often look for exit doors and try to notice if the washroom only allows one person at a time. I have had to go outside to vomit countless times, and often find it less embarrassing than others hearing me vomit in a public bathroom. I also learned to carry items like sanitizer, wet wipes and tissues with me in case I am not close to a washroom.

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Here are just a few of my unpleasant experiences caused by EoE:

1.) High School: I got home from school and was eating an early dinner before heading to my part-time job at the mall. I ate a bowl of pasta, stood up, and with no rhyme or reason, vomited my entire meal up on the table directly beside my parents who were also eating. My meal looked almost the exact same as it did before I ate it, except it was covered in a thick mucous slime. My mom offered support and held it together like a champ. My dad, who has a weaker stomach, began gagging and had to run to the washroom. 

2.) Meet the Parents: The first time meeting my husband’s parents (my boyfriend at the time), we went for dinner on their boat and ate on the dock. His dad cooked BBQ chicken, which I didn’t know at the time was a trigger food of mine. About three bites into my dinner, I felt my food get stuck and I knew I was going to vomit. With no bathroom near me, and nowhere to hide, I ducked beside a car and began shoving my finger down my throat to release the impacted food. While doing this, I often burp loudly as air has been trapped in my esophagus and needs to be released before I can vomit. I was absolutely mortified. 

3.) Restaurant: I was eating sushi with a friend when I felt rice become impacted in my esophagus. I made my way to the bathroom, locked the stall, and took off excess layers of clothing. I began sticking my finger down my throat to release the food stuck, and began vomiting loudly. I flushed the toilet and went to wash my hands with teary, swollen eyes, when I realized two other girls were in the bathroom as well. They walked into their stalls and continued talking while I assume they thought I had left. They said something along the lines of “Whether you have the flu or an eating disorder, why would you be at a restaurant vomiting? That’s disgusting.” I wish they hadn’t, but those words have stuck with me.  

4.) My First Panic Attack: I was at my sister-in-laws house for Christmas Eve this past December. There were around 20 people gathered around a table with extra chairs to fit everyone. I had been situated about 5 chairs into the room, and for some reason I hadn’t thought through any exit strategy. I began eating my dinner and felt food get stuck in the first few bites. I stood up and had to ask four people to move their chairs in to let me out. This process took longer than normal and I felt panic immediately beginning to set in. I visualized myself having projectile vomit in the middle of Christmas dinner, which wouldn’t be the first time. I looked down at my hands and they began to tremble as my eyes filled with tears. The washroom door was closed and locked and I started crying uncontrollably. I made my way down the hall and found an empty bathroom with vomit in my hands and mouth. I continued vomiting while beating myself up about why I hadn’t sat in a chair on the end, I wasn’t closest to the washroom, I wasn’t aware if the washroom was full and I didn’t plan my exit. It was the first time that I was entirely incapable of calming myself down and I couldn’t catch my breath. My husband and his family were completely supportive and accommodating. However, I was mortified that I was so close to aggressively projectile vomiting in the middle of Christmas dinner. 

While none of these are my finest moments, they all contribute to how I deal with my EoE on a daily basis. Over the years, I have become more anxious about having to excuse myself during meals. I worry before, during and after almost every meal that I eat when I’m not alone. Although I have a strategy, it doesn’t always work, and I’m still fine tuning it. 

If you take anything away from reading this I hope that it is simply that everyone has a struggle they are battling. It would be so kind if we all kept our judgement to ourselves, and perhaps opened up a conversation about each other’s struggles, no matter what they may be.”

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My Relationship with Food

When I first started blogging I thought I would have a whole section about food and my diet as someone with IBD and an ostomy. And that is probably one of the most commonly asked questions I receive from readers or generally anyone. But in the 3 years since I first got really ill I haven’t once been able to specifically write about it, because there is no simple answer. My relationship with food is so complex and overwhelming that I haven’t quite been able to articulate, let alone practice what a healthy diet looks like. Until now.

I thought I would first explain why someone with IBD or an ostomy (at least in my own personal experience) has such a difficult relationship with food and why it’s so difficult to explain:
Continue reading “My Relationship with Food”

2017 Year in Review: My thank you to the universe

In 2015 I wrote about my love for the worst year of my life, and the amount of personal growth that year offered me. The universe completely humbled me and reminded me that I do not dictate it’s ultimate plan, but I can control how I handle what it throws at me. In 2016 I wrote about how as healthy as I felt (aside from the 2 weeks from hell in September) my emotional and mental health took a toll as the entire year was spent waiting for my medical drama to be over. My whole life was put on hold the past two years and I watched and cheered my friends on as they lived their best lives, doing all the things you’re supposed to do in your 20s, while I waited. And waited. And waited.

When I was put in the hospital for the first time, I was there for 2 weeks and forced to drop 3 courses, weeks away from my exams. And I remember crying to my Mom about how this 2 week stint pushed back my “plan” and just threw everything off. It was so frustrating because I had finally made a move to make a change and the universe said “forget it.” But I was so so wrong about what else it had in store for me….

After that initial 2 weeks I was hospitalized 6 more times in the matter of 2 years. A total of 4 times because I was sick, and 3 times because of surgeries. Talk about a plan being thrown off. I spent that 2 years thinking after each admission, I could get back on track with my life. I wouldn’t have to be bedridden (or toilet ridden) recovering, or relying on the financial and emotional support from my parents, take more time off work, worry about accidents or leaks, or being bald. It was just one thing after another that I thought had to happen before I could start living.

But it really wasn’t until February 2017, after my final surgery I started to look a head. No more surgeries, no more medications, no more ostomy, no more UC (although I will say it again and again, that a JPouch is NOT a cure ), no more leave of absences, no more debilitating illness (knock on wood). That’s when I started to make my move. Literally.

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Slowly things just fell into place this year. I was potty trained. I had a new apartment. New city. New job. New friends. New car. New hair. New adventures. New opportunities. I said I was going to do all these things after my medical drama was over. And I did. And I’m proud.

Sometimes I find myself still struggling with how “behind” I am compared to my friends (who talk all things engagements, weddings, houses, husbands, in-laws, babies, and more babies). But then I look back at 2017, and what a whirlwind of a year it was and I’m reminded that it’s okay. It’s okay that I was robbed of 2 and a half years but I’m slowly making ground. Also, it’s okay because who really gives a fuck what everyone thinks your life is “supposed” to look like. (Mind you, I love hearing about all things mentioned above because my friends are drop dead gorg. brides and make hella cute babies).

I also look back at this year and realized that in January I never said, “By this date I’m going to buy a new car, “ or “in November I’m going to go to Amsterdam,” or “I’m going to work in Oakville.” Those things just happened. I opened my soul up to the idea of possibilities, and trusted that the universes owed me big time.

Each year I write about my own personal growth, (and hair growth) and how through all that adversity, I learned and persevered, and it’s made me more self aware and reflective. And that’s true to 2017 as well. But now that I’ve checked off so many boxes this year, I come into 2018 with such an open mind it’s terrifying. For the first time, I don’t know how UC, my baggage, my health or how any of the past 2 years will affect the New Year, yet somehow it’s all changed me and is a part of me now, so it will.

2017 was difficult for a lot of people I know. It was a hard, hard year for some of my favourite people and I hate to boast about how wonderful it was for me. Yet I am again humbled because some of my lowest points were also this year (queue panic attacks) but those moments are what make the good ones great. I also think that because my year was so fantastic, I was able to be there for those people better than I could have if I was ill. It was my turn to lend a hand, and I hope I did those people justice.

So for 2017, I wanted to give a big big thank you to the universe for coming back around and repaying me for the shitty times. 2018, I come with such gratitude and candidness that I’m so welcome to whatever comes. It’s exciting, and nerve wracking literally having no plans for the whole year (aside from all the weddings) but that leaves all the more room for opportunity. But please universe, whatever you do, be gentle on me.

Because I just unpacked my bags.

9 Misconceptions People Have About UC

With the recent diagnosis of Ulcerative Colitis for Georges St. Pierre, my heart goes out for not only him but all newly diagnoses patients and those just beginning to navigate the new world of IBD. It’s proof that IBD strikes those even in peak physical condition and no individual is safe from their own bodies attacking them, which is a really frightening thought.

I then began to read some of the articles published about the UFC update and it became really enlightening as to how many misconceptions there are about IBD and ulcerative colitis. Language like “he came down with colitis,” and “he’ll be out for a minute,” was being used which initially infuriated me. It got even worse when these reports tried to explain (briefly) in laymen’s terms what colitis was, using phrases like “disease of the colon,” “causes minor inflammations,” or, “can cause intestinal damage.” But I also recognize that I have this tiny platform that I may be able to use to correct some of these misconceptions and hopefully redirect some of this inappropriate rhetoric in our community. Continue reading “9 Misconceptions People Have About UC”

Cancer Stands No Match for an IBD Warrior

Sometimes the universe can be SUCH an asshole. How can it one moment be so kind and easy on me, and then turn it’s back on someone far more deserving of a warm place to land? I question the universe every day and wonder why one moment it’s being mean and grueling when the next it’s sending butterflies and rainbows. Why one moment it’s coddling me, and the next it’s flipping off my soul sister. Universe…I don’t get ya.

When I was in England I experienced one of the most stressful environments to date. And as I’m sure many IBDers can empathize, high stress environments are notorious for bringing on a flare up. (Big shout out to teachers with IBD because if you’ve never been on the verge of shitting your pants in front of 30 grade 9s, I assure you it’s horrendous). I quickly spiralled into the worst flare ups I had ever had up until that point and unfortunately I was an ocean away from my gastroenterologist. I also only had a total of 4 friends there. 4. (…. Some of who at the time were only just crossing the line between acquaintances and friends and talking about IBD was definitely TMI). So you can imagine how difficult these few but long couple of months were: sick, lonely and very far from home.

But I very distinctly remember being at now very dear friend Kelsey’s house, predrinking one Friday (likely after having some sort of deep fried food at TGIFridays, preparing to go to some club we were far too old to go to) feeling absolutely EXHAUSTED. I couldn’t keep my eyes open, my legs felt heavy, and I couldn’t catch my breath. So I decided I needed to call it in and go home to sleep. I briefly explained that I was having a flare up and I wasn’t feeling good, not expecting anyone to really understand. But Kelsey piped up and said, “Oh don’t worry I totally get it. My best friend at home has Crohn’s and sometimes she can’t go out either for the same reasons.”

I was floored. Rarely had I met someone who knew what I was talking about and be so understanding. But Kelsey went on to explain how her friend was deciding to go with a surgical route and how brave she was and how debilitating the disease could be so she’s decided to take back control. And I remember thinking, “Wow I hope my situation never gets that bad…It won’t though because I have UC and not Crohn’s.”

Fast forward 3 years and there I was, scrolling Instagram while on a medical leave after going the surgical route, looking at beautiful photos probably of Kelsey and Laura exploring all that this big beautiful world has to offer, when I come across this above mentioned friend who was back in the hospital with another flare up. And I thought, you know what, I’m going to take a chance and reach out to this girl. We can swap stories and perhaps I can be of some comfort since I did go through with the surgeries and it seemed like she was still deciding what her next best course of action could be. And if she was a friend of Kelsey’s, she must be pretty fantastic.

One Instagram message later and BAM: Instant friends. Instant soul sisters. Instant support system. I talk about it all the time but somehow IBD has brought this amazing connectivity though social media and this powerful ability to bond people who can compassionately offer a listening ear or perhaps an emoji hug. It really is incredible because just like that, I had this immediate attachment to someone I had never met. And I’m so thankful every day this happened.

Lindsay has brought so much joy to my life in the last year or so (?) that I’ve known her. She is kind, and positive and genuine. She brings a breath of fresh air to that IBD life when she sincerely wants to talk more about how someone else is doing rather than her own struggles. She gets pure delight from watching her friends and family living their best, adventurous lives while nurses poke and scope at her own. She sees this world through eyes of wonder and beauty and shares it with her inner circle so they too can feel inspired.

How often can you connect with someone over the Internet but feel comfortable enough to talk about your bowel movements? Or our energy levels, or medications dosages, or our mental health, or our sex lives, or our self-image, or our jobs, or our perceptions of the world? How often do you meet someone in person for the first time but feel like you’ve known them for years? How often do you snap chat someone from the toilet or send videos to talk because your hand is tied up in an IV and can’t text? How often do you bring snacks to the hospital only to get the stink eye from the crazy roommate and then weeks later dance the night away? Let me tell you…not often.

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 But maybe this is the universe paying us back. By saying I’m sorry I’ve been such an asshole to you two, but here ya go…you have each other.

I wont go into too much detail about Lindsay’s story because that’s not mine to tell. But I can tell you that she’s now fighting the fight of all fights. After she kicked Crohn’s ass along came PSC, a rare disease that damages and blocks the bile ducts around her liver. Now requiring a liver transplant we spoke about how this is just one more blip in her story but after that surgery we can conquer the world. Until that was put on hold because the big C word has invaded. The universe keeps throwing curve balls at Lindsay but because she’s been so strong and resilient, and in its determination to knock her down he’s thrown in cancer. But I can tell you that it’s not going to work. You will not break her.

Lindsay: you are an absolute inspiration. I thought my baggage was heavy, but here you come along carrying a ton of bricks, with ankle weights on. All with that brilliant smile on your face. If any readers want to know a story of resilience and kick ass determination…it’s this girls. Not mine. You are so loved by so many people and we can’t wait to see you punch the universe right in the face.

Kelsey: Thank you for introducing me to this kind, gentle soul. Thank you for inspiring both of us to be brave and honest by opening up with words and photos. Thank you for showing us what this whole world has to offer, and instilling that love for life in little humans. Thank you for being Lindsay’s best friend and allowing me to take on a small portion of your role while you’re in Spain. I will keep her safe and close in hopes of doing you justice

Cancer knows no race, no age, no religion, no gender. Cancer doesn’t care if you have your whole life a head of you, or if you’ve already enjoyed one long and meaningful. Cancer doesn’t care about your bank account or your weight or your marital status. It doesn’t care how many children you have or how many obstacles you’ve already overcome. It’s the universes ultimate trick and it’s mean. But it’s not without vice.

I’ve been witness to the power the World Wide Web has to offer and how quickly it can bring people together. I’ve asked you time and time again to rally behind me and either offer your own stories, your own words of wisdom, your own time in comfort or even your own wallet in my fundraising efforts. And now I come to you once again with the same request. Read Lindsay’s story. Look at her beautiful photos. Take a moment to find gratitude in your own lives. And reach out to her. It humbles me every time I see how compassionate readers can be in the kind words you’ve offered me in the past, and now I’m graciously asking you to extend that benevolence off to my IBD soul sister.

We got ya girl

https://www.gofundme.com/help-lindsays-fight-against-cancer

Standing Up After Falling Down

For the first time in two years I am not missing out on the Fall. For the first time in two years I am not slipping into a darkness anticipating an upcoming surgery, and then kept tucked away inside while I recover. For the first time in two years I’m not saying, “We’ll see how my recovery goes,” before making plans or “Don’t get too attached because I’m going to be out of commission.” For the first time in two years I’m not wrapping my head around yet another hospital admission. And for the first time in two years I’m not drowning in chaos.

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In 2015 I was coming to a very real conclusion that I could not battle UC on my own and needed surgical intervention. If you remember we were “celebrating” my birthday with wigs on our heads because I had lost all my hair and somehow convinced everyone that if I had to wear a wig, so did you. And it was also on my very birthday in 2015 that I 100% knew it was time for surgery after cleaning myself up after an accident that happened in my own home, because the proximity from the couch to the toilet was apparently too far. Bella spent her birthday overshadowed by all my mayhem and yet again put on the back-burner. September was spent going back and forth about my decision until October when I finally knew and I was preparing myself, off on another leave of absence. And By Halloween I had an ostomy which was followed by recovery throughout November.

 

In 2016 I also wasn’t making plans to tour wineries or carve pumpkins because I knew my second surgery was coming and I would be tied up for another 6 weeks. Little did I know that that surgery would be the worst few weeks of my entire life and that birthday was spent puking at Mount Sinai, recovering from not only an operation but also CDiff and an obstruction. Bella spent her birthday sleeping on a chair in Emerg. Little did I know that that recovery would also be for my emotions and mental health, because my poor brain couldn’t keep up with the beating my body just took. And little did I know that that recovery was still happening a year later when I recognize the magnitude it took on my heart.

But 2017…2017 is my time to finally embrace the crisp air, changing leaves, cozy blankets, red wine and celebrations. Knowing that I missed out on the season for the past two years, I have a best friend who is outdoing herself to make this year special with celebrating our birthdays for what they actually are. Bella and I are celebrating another year older, not another surgery checked off the list, or putting UC behind us, or the launch of a blog. Just another year older.

I have cards this year that read, “I’m actually thrilled to be writing you a card that has nothing to do with anything but your birthday,” and, “so much to celebrate!” or, “I’m so excited to watch you start your lives here!” Finally I’m not getting birthday cards along side get well cards but instead, housewarming cards. And I’m READY to celebrate, along with this gorgeous season and all it has to offer. Processed with VSCO with a5 preset

I’m a sucker for a crisp Fall day that brings a feeling of nostalgia, romance, freshness and a new beginning. The teacher in me embraces the Fall as something new as I pack away shorts and tanks and bring out new warm blankets. This year the Fall is bringing a new comfort to a new home, a new confidence to a new job, new eyes on old scars, new tastes of wine, tea or lips, new hairs to comb and maintain, new age of 28 years young, and a new roommate to a new city.

During my 2016 train wreck of a surgery I very distinctly remember staring at the ceiling at 1:30am, on Day 11 at Sinai thinking, “What if I’m NEVER better? What if this is how my life is. Sick. Painful. Nauseated. Dehydrated. Sad.” This very real fear developed under dark circumstances but actually trickled out into the real world for weeks and perhaps even months. And every once in a while if I don’t catch myself I sometimes find myself slipping back into that fear. But not today. Today I’m dehydrated from drinking too much tequila and happy from a night spent celebrating. Celebrating nothing but birthdays.

 

For the first time in two years I’m embracing the Fall. For the first time in two years I’m soaking in the sunlight and breathing in brilliant cool air. For the first time I’m handing over my VISA saying, “Yes, book that AirBnB,” when it comes to making plans or, “when can I see you next?” For the first time in two years I’m wrapping my head around the fact that my baggage is actually rather light. And or the first time in two years I’m seeing the dust settle.

 

Being on the Other Side of the Hospital Bed

I’ve heard that smells are often a common trigger for memories because they connect to certain areas in the brain responsible for sensations and emotions. When I was last discharged I bid a fair adieu to those foul, antiseptic, nauseating, sterile scents of a hospital and didn’t look back. But I didn’t think I’d experience them again so soon….this time as a visitor.

This past week I experienced first hand what it was like to stand bedside to a loved one. Getting the call that an ambulance was coming and to meet at St. Mikes, we raced against traffic and this time I was the one paying to park (but only once thanks to friends who share their underground parking). I stood while we waited in emergency for X-Ray results and a prognosis, only to feel the stomach churn of bad news and then continue to wait for a bed upstairs.

It’s odd being in this new role, and suddenly I felt a new perspective take on a whole different meaning. I always felt sad for my family and friends who had to endure long waits, uncomfortable chairs, paying to park, searching for the correct room, lugging care packages and being on call for any new developments. But for the first time I REALLY understood that none of that matters. They didn’t care about watching NBA playoffs on a small screen or having to wear a gown and gloves while in isolation. They cared about me.

When then nurse came to tell us they had finished resetting my Dad’s broken bones the first thing she said was, “He’s a little out of it, but he’s funny!” I can only hope that I offered the same comic relief as him from my own hospital admissions. Seeing how friendly he was to the nurses, doctors and roommates I again, only hope I offered the same positivity as him and gracious attitude as you always meet someone who is worse off than you.

I’ve been there Big Guy. I know the struggle of restless nights and a dreary looking recovery ahead. I know feeling of life being put on hold and the “what now?” questions. I know how difficult it is to depend on other people. I know how frustrating is it to feel like something so simple like walking or going to the bathroom can be taken for granted. I know the “why me?” feeling. But it’s just a blip. A small blip in your life, and now I’m strong enough to help carry your baggage too.

Dealing With Trauma When Everything Else is Perfect

 

A lot of people go through trauma. And we all deal with it differently. I would even argue that my experience with IBD can barely be considered trauma because of how much positivity came from it. But it was. It was traumatic in the sense that it was deeply agonizing and the emotional response was as soul jerking as the physicality.

I didn’t recognize my illness as trauma because it happened over such an extended length of time. And each set back was just the universe chipping away until eventually two years later I realized how much of me was missing (literally an entire organ). But there was this whole shift in my brain, altering my perception of life and resilience. And it’s only now when I can process the magnitude of all of it that I realize how traumatic it really was.

So how are you supposed to just move on? Everything is peachy keen and we just forget about it? Like nothing happened we just go on with life and that’s that? That’s what it feels like. It feels like I have this happy little life and I should be content and calm. But I don’t. Somehow I feel the sadness and grief hitting me like a ton of bricks.

I realized something was wrong when I had two panic attacks in one week. I’m not going to go into a whole lot of detail because I’ll likely write about this in a separate post but when you’re jolted awake by pure terror, it’s probably your body saying we have an issue. And it wasn’t until my sister commented, “maybe you have a bit of PTSD,” that I really considered the past two and a half years as real trauma.

From my understanding most people experience trauma as one horrific, catastrophic event that they then deal with after. They have time to process this one event and navigate the pain in a safe place. And in no way do I devalue anyone else’s anguish because I am well aware that my baggage is no heavier than the next guy’s.

But for me it wasn’t just one event, which is why this healing is so confusing. It was 7 hospital admissions. It was talking about surgery for 6 months and doing everything we could to avoid it. And then it was surgery. And another surgery. And another. It was pulling out strands of hair one by one, for months. It was waking up each morning realizing my cheeks were bigger than the day before. It was 2 C-Diff infections. It was puking in emergency room because of a bowel obstruction…on my birthday. It was shitting my pants in my car. It was missing out on fun because I was sleeping. It was falling down the stairs because I lost so much muscle mass in my legs. It was looking in the mirror and not feeling pretty…for years. It was dehydration. It was thousands of dollars spent on ostomy supplies. It was losing friends who didn’t know how to deal. And it was looking at my stomach seeing 7 incision scars. It was chaos.

But each little chip was just a minor event. That just came and went and we dealt with as one little blip after another. But no one calculated that one minor event after another equals real trauma. Real grief and real pain. So here I am in my happy little apartment, when everything is perfect being hit by a truck of distress.

So now what? Well luckily I have a person who will drive me around in the middle of the night during a panic attack, just talking me down. And that person won’t laugh or dismiss how horrendous I feel, while also reaffirming that I don’t need to go to the hospital because I’m not actually having a heart attack. That’s step one.

And from there I take one day at a time. I stretch. I slow down. I write. I sleep. I eat well. I breath. Eventually I will get counsel, because it definitely is at the point where I can’t navigate on my own. But in the mean time I’m reaching out. I can’t possibly be the only one who is dealing with trauma only after everything is supposed to be healing. It’s like feeling sick when you’re in remission. And I know there has got to be IBD people out there who know what I’m talking about. So if you do, please…get at me.

In the mean time….I’m going to have some mimosas.
Happy long weekend lovers!