Tuesday, July 31, 2012
On the day before my 21st birthday, my Mom informed me that I was now an adult and that I didn’t have to listen to my parents anymore (folks, you heard it here first!). I laughed at this, and inside I thought, can I really be turning 21? How is that even humanly possible?
As part of my summer research job, I was headed out of town on my birthday for a project. Everyone at work was apologetic about the untimely trip, my parents disappointed that they wouldn’t get to spend the day with me. I was unperturbed - completely happy and willing to travel for work on my birthday. And here is why:
I spent my 16th, 17th, and 19th birthdays in the hospital. I couldn’t eat the birthday cake, and all I wanted to do was stay wrapped in my covers and continue to watch McDreamy save lives on Grey’s Anatomy. My 19th birthday was particularly memorable. I was just under two weeks away from my ileostomy surgery, which I was so excited for I probably qualified for some diagnosable mental condition. The GI finally convinced me to try some pain medication, after I had refused it for some time (note: not because I was stoic, because I’d never had it for IBD before and thought it would as effective as Tylenol for a massive head injury). And once I had the pain medication, life was awesome (pain control, where had you been all my life???). I was still in pain, but all of a sudden I didn’t care so much and my eyes just went a little blurry and I was instantly more comfortable. Everyone I had possibly ever known (and maybe even some people I didn’t know) came to say happy birthday and give gifts. I promise (sarcasm implied) if you want gifts for 6 months, have your birthday in the hospital and then get an organ removed. An appendix will do, no need to go for the colon. So if you can imagine me, sitting on my bed, happy as a clam and slightly (or okay, mostly) out of it, with gifts piled around me and people everywhere - then in walk people with guitars and they start singing happy birthday. I asked my parents about this, I swear I didn’t hallucinate it. As crazy and silly as that memory seems in hindsight, the very idea that two years later I could be pain-free and working on my birthday flabbergasts me. I was too sick to work, too sick to travel, too sick to enjoy my birthday.
So cue my 21st birthday: I was serenaded with happy birthday at work (being sung to by the chief cardiac surgeon was hilarious), piled in a car with my co-workers, had dinner, went for a run, watched the Olympics, and went to bed. A normal day. An ordinary day. But those of us with IBD know that normal is extraordinary, and days like that don’t come as easily or frequently as we’d like. As I was running, I took this photo and couldn’t help but smile at where I’ve been, and more importantly, where I’m going.
I know my future with IBD still exists, there are still uphill battles to lose and conquer, scars to earn and strength to be lent to me by those I love. But today, I am 21 and things are bright and shiny.
Fingers crossed, eyes wide open - adulthood, here I come.
Thursday, July 26, 2012
Here is a disclaimer before you continue to read: I strongly dislike standardized test. Strongly. But I can diplomatically acknowledge their role in the admission process. As if the SATs weren’t annoying enough, here I go, trudging into the unchartered territory of the GREs and fancy words and algebra. Woo freaking hoo.
And so, in an effort to study and complain all in one, I’ve decided to write my own sentences using the crazy words the GRE wants me to know, but in a gutsy style of course. To anyone studying for the GREs along with me - I salute you and here are some ways to remember the following words:
Accretion [growth, increase by successive addition]: The accretion of my home pharmacy has taken several years and will likely continue until I will require a separate house just for meds.
Anodyne [soothing]: Having a heat pack when I’m sick is not only necessary, but I find the warmth has an anodyne effect on me.
Apogee [farthest or highest point]: When I was in Peru, it felt like I was at the apogee of the universe.
Belie [to give a false impression of]: I am often frustrated that my exterior appearance belies the disease brewing inside of me.
Boor [a rude person]: People think do not understand IBD are such boors.
Capricious [changing one’s mind impulsively]: When I was on Prednisone, I wanted to eat everything and was capricious when it came to deciding what I wanted first.
Alas, I must continue to study - ah the things we do for graduate school! As you might have noticed, I’ve only worked through the A, B, C’s of the book so far, so don’t worry, I’ll be sure to share my words!
Friday, July 20, 2012
We are so excited to share another amazingly gutsy guest post! Meet Alex - a force of nature who is never going to give up. He blogs for LOOP and his optimistic attitude is contagious!
'Zip Lines, PICC lines and Tofu: Facing the Challenge'
I looked down from 50 feet in the air from the top of the climbing tower; got ready to be hooked up to the zip line and psyched myself up to jump into the empty air below me …. What was I thinking! I am afraid of heights. As a kid I refused to go on the rope mesh bridges in jungle gyms that you may find at McDonald’s, what changed? Maybe I have learned to conquer my fears; maybe I am getting braver with age; maybe I’m crazy; maybe my Crohn’s has taught me that I have to challenge myself, push myself and face my fears – let’s go with the latter.
Last week I spent the week in Fenton Michigan … it was great opportunity to meet other kids my age with the same challenges I have had to face and openly talking through our challenges. It could have been the friends that I had just met that applied a little peer pressure on me to face my fears. Maybe it was all of the above that gave me the security to zipline … four times … over a creek at CCFA’s Camp Oasis.
Crohn’s has given me courage there is no doubt about that. When you get compression fractures in your back at age ten and can still remember images of not being able to get out of a tent for hours because of those fractures your perspective on life’s challenges changes. The smaller or simpler challenges don’t seem as difficult and as hard to overcome after that.
Crohn’s has a way of breaking down those mental barriers or fears. I was always a picky eater as a kid. And the food group I disliked the most was the vegetable group. Broccoli, salad, brussel sprouts, you name it, I wouldn’t eat it. Two months ago, my nutritionist told me I should go on a semi-vegetarian diet. Ahhhhh! She said it would really help? She also said that she had tried it with one other person before me who gave up on it. Since starting to eat again, (for the past two months) I haven’t eaten meat, I eat eggs and salad regularly along with other vegetables. I even have learned to like tofu and things I didn’t know existed, like quinoa, hummus, and couscous; these have become staples. Foods that I would never have eaten before! And thanks to me facing up to my pickiness, I am eating again (after five months of bowel rest) and I am thriving.
I always love showing people my PICC line scars. Why? As a child, there are stories of me curled up in a ball, hiding behind the examination table when the nurse came in to give me a shot. The story would not be complete without the part about the nurse having to walk out of the room to hide her laughter. She was laughing because even though I was scared of the needle she had in her hand I was being so polite saying ”No thank you, no thank you.” Why the sudden transformation from hiding behind the exam table to showing off my PICC scars? Sadly, I am too big now to fit behind the exam table, but the other reason is IBD. When you have had countless IV’s put in and have shots of Methetrexate every week, you’re challenged to get over your fear of needles.
With a life toughened by Crohn’s, I have been given the courage to challenge myself mentally, and physically. My stubborn way of always pushing through things and challenging myself may be my mother’s nightmare, but it is the best way, in my opinion, to make the most of life.
Wednesday, July 18, 2012
By all accounts, I am my parent’s daughter. Their names appear on my birth certificate, there are photos of us at the hospital when I was a shriveled little raisin of a baby, and sometimes in the right light I’m told I possess a certain attribute of theirs. But I have a sneaking suspicion I was left on their doorstep. Of course this is all in good fun - I love my parents - but sometimes I wonder if I’m the milkman’s daughter. I often joke that I don’t look like anyone in my family, only the dog since we both have curly hair, though I’d be slightly concerned if we had a similar parentage.
Even though my siblings (generally) love me, I can’t help but feel different than them. It’s not just my body’s inability to function, but they are completely cut from the same cloth, they’re a pair, the counterparts of one another. I, on the other hand, could have been the alien child adopted and groomed to fit in on earth.
So here are a list of reasons why I should send a belated Father’s Day card to our milkman/why the dog may be my actual brother:
1) My brother and sister both have brown eyes, I have grey eyes. Let’s hope it’s a recessive gene, or else I am adopted.
2) The dog and I both use poop bags.
3) I can effectively eat my feelings through copious amounts of salad while my siblings feign allergies to all things green and grown from the ground.
4) My siblings can both sing, I am incapable of carrying a tune in a large bucket.
5) They love Tim Horton’s, I’m impartial (yes, this makes me a bad Canadian).
6) Their bowels work just fine. Mine, well, you know the story.
7) The dog and I like to run (albeit after he’s been tricked outside by yours truly).
8) They care little for cleaning their rooms and keeping tidy; my room is sterile enough to perform surgery.
And thus, I rest my case. I am the milkman’s daughter. The only complication is that I love my parents and wouldn’t trade them for anyone else and if I were the milkman’s daughter, being allergic to dairy would be highly inconvenient. Being the only person in a family to live with Crohn’s can be choppy waters to navigate, they hear me talk about bowels and ostomies way too often to be normal (Hence my brother buying me ‘Everybody Poops’ for Hanukkah a couple of years ago - ah the things you get when you have a bowel disease and an older brother). But they love me and support me and encourage me to be my gutsy self. I may be the odd one out when it comes to health in the family, but I never feel like the odd one out - and heck, that’s the most important thing of all.
Friday, July 13, 2012
A diagnosis of IBD sometimes makes us think that there's a set of limitations to living. We love to hear gutsy stories of IBDers who pursue their dreams and become fantastic role models for us all. Cue Matt's blog below - see how he is living above and beyond his disease.
'Arctic Adventures & IBD'
Anyone who has IBD knows that long distance travel (or travel at all) can be an anxiety filled and sometimes terrifying experience. These feelings are usually made worse during travel because bathrooms may not be easy to access and sometimes aren't even there at all. I've personally dealt with this problem and overcome many of these concerns during my trips to Canada's high Arctic, where I've travelled to for work.
I suppose I should start with my IBD story (although so many of ours are the same). I was hospitalized and diagnosed three years ago with severe pan-colitis. Like many twenty-somethings, I chose to ignore the several warning signs that I was spiraling into something very severe. Thankfully during my stay in the 'big house' I was put on Remicade which put me back in remission (more or less). After this experience I slowly got back to work, and about six months later the opportunity came up to go to a place called Arctic Watch, which is a wilderness lodge 500 km above the arctic circle in Canada's high arctic. How could I say no?!
|Standing next to the Northwest Passage (and a Bowhead whale spine)|
After packing all my expedition gear and buying an extra couple of pairs of long underwear to stay warm, I flew out of Ottawa headed to Yellowknife. Flying can be a pretty stressful experience for us IBDers. I made sure to book seats close to the washroom and made sure I was sitting in the aisle row. All of that organization couldn't prepare me for the shock of realizing our charter from Yellowknife up to Arctic Watch had no washroom! We were going to be departing on a two hour flight to Cambridge Bay and then a two and a half hour flight onto Arctic Watch, and I was nervous. I put on my poker face and hoped for the best; there was no turning back now. The fight turned out to be an amazing experience (as the view from above of Nunavut is beautiful) and accident free!
|Hard at work shooting video at the Thule historic sites|
|Shooting photos of Muskox (in the distance)|
Tuesday, July 10, 2012
We love guest posts and we love catchy IBD names. Combine the two and you get 'The Great Bowel Movement' and their amazing post below. Their story reminds us that truly anything is possible with the right friend by your side and a relentless attitude.
Finding Purpose through Pain
After having IBD for a collective twenty years, two friends decided to do something inspiring.
Andrea Meyer, who has Crohn’s Disease, met Megan Starshak, with Ulcerative Colitis, at the Crohn’s and Colitis Foundation of America’s Camp Oasis one summer. As any camper or counselor can attest to, Camp is a special week with a magical atmosphere, where having IBD is normal and telling potty jokes is encouraged. But after one week, we all have to go back to the real world. One year, Andrea and Megan decided to keep that magic going.
The Great Bowel Movement began as a small idea, as Andrea and Megan realized they were both really open about their diseases, and had found a place in the world by being a role model to others who were struggling with the acceptance of their diseases. Andrea had requested some kind of t-shirt to wear- one that was fun, creative, and original, and trendy enough to wear out and about, and Megan, as someone who dabbles in graphic design, was up for the challenge.
Together, they developed more than just the now-popular “Ask Me” t-shirts, but a whole brand and support system that provides both resources and a community to help others come to terms with their diseases, be courageous enough to share their stories, and to spread awareness by wearing the shirts around their communities- all with a fun and witty twist. So was born the Great Bowel Movement.
One of the biggest benefits of spreading IBD awareness is bringing credibility to our diseases and experiences. When someone says they have cancer, it’s something people are familiar with. Same thing with the other end of the severity scale, say, a common cold. People can relate; they have at least some idea of what it is and possibly what you are going through. But there are a lot of myths associated with IBD- everything from what exactly it is, why it’s different than IBS or a food allergy, and especially the severity and impact it has on our lives.
By wearing the “Ask Me” t-shirts and initiating conversations, we’re opening that door and becoming the faces of IBD. For some, you may be the only person that someone knows with Crohn’s or Colitis- so however you live your life becomes the definition of disease to that person. The type of people that tend to be open about IBD and who wear the shirts out in public are the ones who are the best role models- often times people whose struggles have been great, and who have a lesson from it or a little bit of wisdom to share- and people who are living their lives successfully and become examples of overcoming disease. The more people that do this, and the more common the IBD conversations become, we will all benefit from a collective increase in awareness.
We also love the idea that IBD is you, and me, and the friends we’ve met at camp or at other IBD events. Although there are some great advocacy and other organizations out there, and some great initiatives driven by the pharmaceutical companies, at the end of the day, WE are IBD. With the Great Bowel Movement, we are giving everyone and anyone the opportunity to be the spokesperson for their disease. We both have discussed at length that going through the experience of IBD has given us more of a purpose in life, which is to be a resource or role model for others, and through this, we’re working to provide tools for more patients who feel the same. We’re keeping a very personal voice with it, and we believe that is the best way to make an impact in our daily lives and communities.
We are taught from a very young age how to (or how to not!) treat someone with a visible disability. When you see someone, for example, in a wheelchair, you are told not to stare. But what if that person wants to share their story? What if they are proud of what they have been through? They are up against the social norms that assume all disability or illness is supposed to be embarrassing. And we, as patients of invisible illnesses, don’t have much of a way to tell our stories, since often times you can’t tell that something is wrong.
But sometimes telling our story can be the most empowering thing, both within ourselves and for the community. Maybe that girl at the mall is out in public for the first time with a new ostomy. Maybe that guy slowly running a 5K is proud that he can even run that far. We’ve got lots of things to be proud of, and lots of stories to share, and together, we can make a positive impact for IBD awareness. We’re truly working to get everyone to this point, and create an awareness “movement” (yes, pun intended!) for IBD.
After we began the Great Bowel Movement and really gained some great momentum, we realized that our brand has a secondary benefit, and that is instilling pride in those who wear the “Ask Me” shirts. We’ve received countless emails, photos, and stories from people, and it’s rewarding to hear that people are empowered just by putting on our shirts. We are changing the world, one t-shirt, one story, at a time.
One girl summed it up really well- when she was first diagnosed, she was so embarrassed about having a bowel disease that she didn’t even want to tell her parents. But she eventually came to terms with IBD, and when she put on her GBM shirt for the first time, she cried. It was a symbolic gesture that they have come to “own” their disease and their experience. It’s something they can now be proud of, and it’s a psychological marking point.
So not only do we give people the tools to become more confident in telling their stories, so that they do get a shirt and spread awareness, but the shirts themselves have become tools of empowerment in this journey. And hopefully when they wear these out, they not only educate those around them, but inspire other silent sufferers of IBD to see that you don’t have to be embarrassed about it, and get a little further in their journey of acceptance and openness. All because of one shirt.
We’re making a difference in a way that we’ve never seen before. Now everyone can be the poster child for IBD, and we’re not stopping until we’re 1.4 million t-shirts strong!
Andrea & Megan
Shirts are available here
Monday, July 9, 2012
As an individual living with an invisible chronic disease, I aspire to words like strong and stoic and determined. Often I’d rather suffer silently, squeeze my own hands rather than someone else’s, and let whatever is hurting pass. Complaining seems synonymous with failure and giving up and being weak. And every time a thought of that nature enters my mind, I think to myself, ‘Do you want cheese with that whine?’
If it were anyone else, I’d probably be coaxing them to talk and offering my hands for them to squeeze. Be it pride or a learned skill, I find it difficult to complain about my internal workings.
Maybe because I put words like ‘complain’ and ‘whine’ on the same plane. Maybe because I consider whining the same as letting someone know something hurts. Maybe there aren’t words intricate enough to explain the pain. Maybe because I don’t want to bother those I love.
If my illness were only temporary, I think it would be easier to complain. But the unpredictable chronic journey that stretches out before me makes me think I have a complaining maximum, only to be employed tactfully throughout my life. There are people who complain about everything – and I think that if I say one thing about my incurable disease that it puts me in the same category. In other words, I’m in search for a happy medium.
I remember in school when we would draw lines with rulers and my teacher told us that there were no perfectly straight lines. I recall being extremely confused by this statement, since the ruler was straight and it looked straight to me. I picked up the ruler and looked at it carefully and ran my finger along it. Sure enough my little plastic ruler was worn along the top and ever so slightly bumpy. Nothing is perfect, least of which am I.
Here is my advice to myself: if it hurts, speak up. Say things with intention not for attention. I have a voice for a reason, and can’t forget to use it when my body needs me to do so.
Wednesday, July 4, 2012
Nine years ago today, I was sitting in a little sailboat on the Charles River in Boston. The boat moved slightly in the water, the smell of hot dogs hung in the air. There’s arguably nothing more exciting – especially to my 11 year old self – than being in Boston for the 4th of July. It seemed like I was on the verge of growing up; I was about to start junior high in the fall, the world was beginning to open wide. That night as we watched the fireworks, I tried to forget about the pain and the cramps stirring in my belly and focused on the fireworks that exploded high in the sky and twinkled off of the water. It was about three months later when I was diagnosed with Crohn’s and completely devastated. I felt empty and broken and cheated out of the life I had worked hard for. The bright and shiny future I had envisioned for myself settled into ashes.
And when I think of that, the heartache that I couldn’t see an end to, it makes everything bittersweet. Soon after being diagnosed, I remember being in my basement and looking at old photos. I saw pictures of myself when I was very little, and would smooth my fingers over the image, wishing I could have told myself to lie about my symptoms and never be diagnosed. For me being diagnosed was like being punished, it was unjust and I couldn’t understand the chronic state of the disease I was told ravaged my intestines. And now I think how different my perspective is, how much has happened in the last 9 years that have changed who I am physically and emotionally.
I am not my IBD. But I am who I am because of the experiences I’ve had because of my IBD. Fundamentally I am the same person, but the lens Crohn’s has given me has shown me the world in a different way. The misunderstanding I’ve faced can make me guarded. The compassion I’ve encountered makes me grateful. The pain I’ve endured makes me mindful.
In 9 years, so many things have changed. Not only how I see and understand my disease, but perhaps more importantly my involvement with IBD organizations and the resources we’ve been able to build together as a community. 9 years ago there wasn’t a blog or a Facebook page or a book to give me support. And when I stop to think about what’s happened in the past 9 years, it only makes me excited to see what the next 9 years will bring. More support, more awareness, more treatments.
When you’re on a slow moving train, it can be hard to tell if you’ve moved at all. But then you blink and you’re 100 miles down the tracks. Days like today make me think about everything that’s happened throughout my IBD journey so far, and it makes me smile on how much things have changed. Since I go to school in Boston, I run on the Esplanade near where the 4th of July concert is. Sometimes when I’m out of breath from running, I stop and look at the water and the sailboats still bobbing side to side and think of the little me that sat there so many years ago. And then I think the same exact thought I had sitting in that boat. I close my eyes and say to myself, I’m exactly where I’m supposed to be.
Monday, July 2, 2012
We're thrilled to be expanding our Guest Post series - and even more excited to have the author and founder of 'Blood, Poop & Tears' writing a post for us!
I have been asked many times why I am an advocate or why I spend my free time and money on raising awareness for IBD. I have a long winded, drawn out answer for this question and depending on my audience it can be really inspiring and technical, or loaded with swear words and jokes. I like to think that I understand my audiences. I have this same strategy when people ask me what a Jpouch is. I have loaded responses ready to be verbally vomited into the ear canal of the unsuspecting question asker. Depending who asks, they will either get my medical jargoned response, or something about how my colon is gone, yadda yadda, new internal plumbing, yadda yadda, wham bam poop chute answer. I'm really quite eloquent with words.
Ok, Jackie, what's your point?
Well, impatient reader, my point is that you have to think about these things. I have my own mini internal IBD marketing campaign. I have ready responses to common questions, a 30 second mental business card, and loads of facts that I am dying to share with any person at the smallest inkling of their interest on the topics. Sometimes, I bait them. I'll be around a stranger, or someone I know very little and once I see an opening I'm all "I have no colon, I have a jpouch. Wanna know what that is. blah blah blah". See what I did there? I just snuck it right in. I guerrilla IBD fact attacked them.
Or if I'm out to eat with people, I'll throw in some comment about what I can and can't eat with a quickie explanation about how not having a colon can have a serious limitation on the amount of salads and spicy chicken wings you can eat. Why is that, unsuspecting dinner companion? Because I dont have a colon, because I had UC. Oh, and I had an ostomy. Don't know what that is? Well here is a list of ostomy facts, filled with non offensive descriptions, followed up by a list a famous people who had ostomies. That Fred Astaire, what a hunk.
Back to my point. My strategy for raising awareness is facts disguised by jokes. Its the same technique used by parents to get kids to eat vegetables. If you can ease people into a conversation with jokes and even by making yourself the butt of the joke (see butt jokes are fun), then you can sprinkle the conversation with IBD related facts. Thus teaching people, raising awareness and having a good chortle all at the same time. In my experience, chances are, that if you do it right, people will also continue to ask more questions. Which for me, is like IBD advocacy gold. The second the door is open I take that opportunity to shower my question asker with all kinda of information they may or may not have wanted.
Why do I give them info they may not want?
Because we have a disease we don't want. Just hearing about the disease is the least those healthy colons can do for us. Also, frankly, hearing not-so-pleasant details is probably what is going to stick with them and keep IBD in their memories. My goal is not to have a bunch of IBD experts running around, its to have a bunch of people who know what IBD is, and to show them someone who is confident about their disease. Their ass disease to be exact. I want people to see that IBD is a serious disease, but that when we are all educated, we can change perspectives about it and maybe even have a laugh or two.
I probably talk about my butt too much in all honestly. Literally the guy who came to quote a new fence at my house, knew about my jpouch within 10 minutes of meeting me. Was that a little too much? Probably, BUT he then responded how he often has stomach issues too, and through my urging was going to make a doctor's appointment. See people, I'm changing lives one butt conversation at a time. Perhaps I overcompensate with my stories because there are so many people with IBD who are too afraid/embarrassed to talk about their disease. I have been there too. I wasn't always this butt joke wonder that I am today. But I learned how little people know about IBD and I also learned that IBD is a real disease, a real medical problem, and that real people can die from IBD complications. It is important that people of the world understand that we don't just have stomach aches, that we don't have IBS, and that we aren't faking it.
I look at every person I meet as an education opportunity. I wear my "Ask me about my Jpouch" shirt or "Ask me about my colitis" hoodie everywhere and honestly I make sure to wear them when I know I'll be in large crowds. I WANT people to ask me. I want to tell people how bad IBD can be, but to show them that it can get better. I want people to see confident IBD patients and to understand the strength it takes to go through the testing, poking, prodding, medication, and surgeries that go along with IBD.
You may not be comfortable with my tactics. Thats understandable. But if you get anything out of this, I hope that you will understand how important it is to tell your story. There are billions of people on this planet, and each one is an opportunity for advocacy and awareness.