Thursday, March 31, 2011
Thank you Kaella for your response to my last blog - this means alot to me and it gives me much hope (and many other IBDers). Thank you for letting me share this - Keep up the great work :) . Getting your response makes me feel so grateful that we can come together and help each other. I remember when I was a kid, I didn't know anyone with IBD and I felt very alone going through life with the challenges of Crohn's. Thank you from the bottom of my heart,
Kaella's Inspiring Story:
I don't consider myself a Crohn's success story but I do feel lucky each and every day. My last Crohn's-related surgery (a bowel resection) was over five years ago. My last "major" flareup, over four years ago. Sure, I've had bad days and bathroom emergencies, but I'm officially at my "Crohn's" best. I was diagnosed in February 2004. Like so many others, my diagnosis took time. In three weeks I lost 50 pounds. For months, I couldn't eat or sleep and was, at times, scared and depressed. My story has been told many times on CCFC blogs and as the first Gutsy Generation "Gut of the Month" so I won't go in to it too much. What I will tell you, is everyone is different. There were moments when I thought I would never get better. My weekly doctors appointments and hospital visits, and dozens of pills, were exhausting. It didn't help that I was constantly hearing "you're always sick" from people. This year I will be 28 years old. I am getting married in the fall and I couldn't be more excited. Everyday I say a quick thank you for my health. I didn't take a magic "get better" pill (although, I probably would consider it, if such thing existed.) What I believe has worked for ME and kept ME healthy is my lifestyle. I'm a very positive person. I eat extremely well (most of the time) and exercise, a lot. I began working out everyday (for a minimum thirty minutes) last summer. Three months later, I was able to go off my Crohn's medication completely. I can't tell you my success story will work for anyone else. In fact, I'm confident it won't as I believe everyone, and every "body" is different. I also am not nieve. I know my IBD could flare up again, anyday. I know that I could get sick before our wedding, on our wedding day, or overseas during our honeymoon. For me, I do the only thing I can. I stay positive and I live my life. I don't like worrying, because as we IBD'ers know, worrying leads to stress, which leads to flare-ups. Again, everyone is different but I just want you reading this to know that there will be a day when you feel like the best version of yourself. It may last years or it may just last a few days. My advice is to appreciate it. People take their health for granted and I never want to be like that. I am thankful everyday that I'm able to keep working in my dream job, feel well enough to do the things I love, and that I will soon marry the man of my dreams. My next goal is to have a family. Although, Crohn's and ulcerative colitis run in my family, I won't worry about passing on the disease until that time comes. As someone who has a disease that can affect, literally, every aspect of my life I know what many of you are going through. I was there. I may be there again one day. Please, keep you head up. I can't wait to hear YOUR IBD success story. Kaella
Wednesday, March 30, 2011
Friday, March 25, 2011
When I was younger, I had a handful of friends that had some abstract medical conditions - one girl had been in a bad car accident, one was born with a hole in her heart, and so on. I couldn’t get over the scars on their faces or bodies, on some level I could only think of them as survivors of their medical conditions. But when the situation is reversed, when I’m the sick one in the spotlight, I feel like I’m so much more than the girl with IBD. Years ago at a family gathering, I had a moment of ill clarity when I thought that everyone thought that I was just the sick girl, and nothing else.
But of course, that’s not true. I have likes and dislikes, things I’m great at, and things I’m not. I have favorite books, I like to cook, I can’t skateboard to save my life. I’m still here - beyond all of the IBD and medications, I’m still Jennie.
We all need people who are going to stand by us, with us, those who will help us stand back up. Sometimes I feel like I’m asking people to witness my fall, like I’m asking them to watch me sink, and then asking them to help me get up. I struggle with the asking for help and asking for support, I want to be stronger, braver, better. As much as I’m hesitant to ask for support, I desperately want someone to say “I’m still here.” The ongoing illness pattern leaves me feeling that the support is one-sided, as if I’m only asking for a cheering section for life and giving nothing in return. And it can feel like that, when your health never seems to stabilize, but it’s not true. I do my very best to be a thoughtful friend, and even though there’s always room for improvement, I’m here for my friends, and similarly they are for me.
Einstein may have discovered fancy equations. I may have IBD. You may have it too. But I’m still Jennie, you’re still you, and we’re still fighting for the day when IBD isn’t here.
Tuesday, March 22, 2011
I need a new hobby.
Because my latest one - not so great. It involves ERs, and IVs, and hospital stays, and no answers. I’d take a vote, but I think it’s a unanimous decision - a new hobby is needed.
It probably didn’t help that I decided to take public transit back from the airport Sunday evening, fresh back from the break. Ever intent to save a few dollars on my lowly college student budget, I reasoned that a trip back from the airport didn’t merit a $30 taxi ride, and that the subway would do. Let’s do the math: I’m 5 feet 6 inches, my big purple suitcase is just that - BIG - and my hefty pink carry-on is just that - HEFTY. Mission: Get back to the dorm lugging said luggage up literally hundreds of stairs, transferring from buses to subways. Status: Completed. Good Decision? Not so much.
It’s not a new tale - a stubborn kid doing the stupid and unreasonable. It exhausted me, but I thought that would be that. I still didn’t feel well from my ongoing medical saga, nothing had changed, but classes were starting post-spring break, and I was going. And I did - for the first day. Then I was speaking with the GI team who said to go to the ER - right then.
My planning and budget went out the window. I spent the money to take a cab to the hospital - Mom’s orders - and heaved my hefty pink carry-on stuffed with chargers and supplies and joined the army of sick kids camped out in the ER. And, countless hours later, I was being wheeled up to the inpatient floor.
Only - this time, I didn’t have my lovely little private room. No, this time, I was informed of my (miniature) roomie to be - a two week old baby boy (we’ll call him Baby Boy for obvious reasons). Though I have yet to actually see Baby Boy, by all accounts he is very cute, and I must say, extremely well behaved for such a newbie. Roomies, no matter how tiny, bring those awkward social implications of having to be extra quiet and courteous and the sharing of the bathroom. Lucky for Baby Boy and myself (sarcasm implied), some retreat had stolen all of the residents for the day, which effectively meant that nothing was accomplished today.
Well, let me define nothing: nothing medical, which means nothing important. This AM, a very nice volunteer came to the room, and wanted to know if I wanted to make a duct tape wallet. Truth: Not overly, I want to be seen by medical professionals and feel better. But I agreed, she seemed so nice, and so I set about picking different colors of Duck brand duct tape, and created a funky little wallet. A waste of time? Perhaps, but then again, I have lots of time to waste.
It’s times like these - alone in the hospital - when I feel like I’m simultaneously everywhere and nowhere. I’m no longer as tiny as Baby Boy, totally new and fresh into the world, I’m older, and a bit damaged. His medical records only date back two weeks, mine are volumes thick and collecting dust in several hospitals. And yet here we are, so vastly different and somehow existing mere meters apart. The bottom line is that we’re both not feeling our best, and in the metaphorical ‘duck, duck, goose’ game of life, we’re waiting to be called and to run our fastest to a bright, shiny future.
Ready, set - run.
Friday, March 18, 2011
There are very few things in life that last forever. Our shoe size changes, but is perhaps the same at some age onwards, our favorite food changes, our medications change, the place we call home changes, our jobs change, our cars change, our world changes. What is there in life that tangibly lasts forever, that we can hold in our hands and, despite our evolving life, stays the same?
Here’s the point: saying that IBD is chronic and lasts forever is a trick. We don’t really know what that means, we don’t really understand what forever means. It’s different than when we complain about waiting - “That took forever!” - it’s different than a slogan - “Stars and stripes forever!” Try as we may, we can’t really truthfully understand what it means.
A few days ago, I went outside to say hi to one of the little kids I babysit who lives up the street - we’ll call her Gracie. I told her I had something inside the house for her, and she walked with me, hand in hand with her Mom trailing behind, to get her little gift. My Mom had been clearing out my old things, and had come across a Barbie magnet set that had never been opened. I offered it to Gracie, who accepted it with big, glassy eyes, and then I was talking with her Mom. A couple of minutes later, Gracie - who had been running her three year old fingers around the border of the magnet package - looked at me and said, “Can I keep it forever?” Besides the obvious fact that it was adorable - my sister would groan if she knew I was retelling this story - it struck me as an interesting way to ask the question. It’s hard to picture it now, but one day little Gracie will be a teenager driving a car and listening to whoever the teenage idol will be in over a decade - and the furtherest thing from her mind will be if that old magnet set half-missing in her garage is really hers to keep forever. But today she’s three, and her forever is based on experience.
Maybe it’s like having a really, really big meal and thinking you’ll be full forever and will never want to eat again. Forever is rarely an accurate interpretation of now until the cows come home, it’s more like a measure of now until what-I-think-I’ll-feel-like when the cows come home.
We can change many things about our bodies and our lives. We can dye our hair, paint our nails, go to the gym, eat Oreos, and do pilates. But we can’t change that we have IBD. Sometimes it’s like how the classic lion tamer held a stool and a whip trying to subdue the lion back, the stool probably wasn’t very effective, but we try desperately to beat our disease back into a corner nonetheless. Even though we can’t really understand it, we will always have IBD - not to say we will always have symptoms or be sick or feel helpless or hopeless or frustrated.
Once upon a time, everyone thought the world was flat and that you’d just fall off if you went too far. No one thought that would change, they thought the world was forever flat and unforgiving. But the key is that the perception did change, and with it, experiences changed. Here’s the analogy: today, IBD is incurable and chronic and stigmatized, but that doesn’t mean that it will be that way tomorrow, or next month, or in three years. Our forever does not have to be humanity’s forever.
Here’s what our doctors didn’t tell us - IBD isn’t the only thing that’s chronic. We can be chronically determined, chronically optimistic, chronically fighting for our lives. And who knows, maybe one day not too far away, our chronic fight will win us a forever of health.
Thursday, March 17, 2011
Hi Gutsy Generation,
I found this cool link about St. Patty's Day to explore more about the occasion and all the symbols and festivities. http://www.history.com/topics/st-patricks-day
Here's a clipping from history.com:
St. Patrick's Day is celebrated on March 17, his religious feast day and the anniversary of his death in the fifth century. The Irish have observed this day as a religious holiday for over a thousand years. On St. Patrick's Day, which falls during the Christian season of Lent, Irish families would traditionally attend church in the morning and celebrate in the afternoon. Lenten prohibitions against the consumption of meat were waived and people would dance, drink and feast—on the traditional meal of Irish bacon and cabbage.
Happy St. Patty's Day to all Gutsy Youth!
Wednesday, March 16, 2011
This afternoon he addressed his fans on twitter (I’m one of them): “Just to let every one know, I have ulcerative colitis. I'm always going to have it, but the symptoms are pretty much under control. :)”
I didn’t know it was possible that my favourite contestant could become EVEN MORE of a favourite. I have such a deep appreciation for Casey and what he is going through. I can’t imagine dealing with a diagnosis or relapse of UC and being in the public eye. I would like to thank Casey, and show him my support.
Casey: Thank you for being so open about your disease. I was diagnosed when I was 18 and hid my disease from everyone. Thanks to your honesty, maybe other youth who are newly diagnosed will feel comfortable discussing their disease with their friends and family and receive the accompanying support they deserve. Also, thanks to you, more people in the world will become aware of IBD. I look forward to the day we can all tweet “Just to let every one know, I USED to have ulcerative colitis. Thanks to research, we found the cure!”
I’m so happy Casey is able to perform on tonight’s show. I wish Casey Abrams the best of luck in his American Idol journey. If I was in America, I would be voting for him like crazy. Since I’m not, I will continue to cheer him on every week from Canada.
You may be in great health right now, or you may not. But in any case it's really amazing how the sun can brighten up your day - pardon the pun :P . Its amazing how much energy you can receive just from a few minutes of sun rays on your face. Where I am in Toronto there have been a lot of cloudy, cold, and rainy days here and it was really starting to weigh down not only on my mood but also the people around me - even the waitress from this weekend's night out commented on the lack of sun and how lethargic it was making her feel!
Today I woke up feeling under the weather: a little irritable, and just feeling 'blah'. I ate my breakfast and needed to get out of the house - so I went for a short walk, not expecting to get really anything out of it at all - and I came back incredibly refreshed! I blame it on the sun. I walked through the little forest nearby, enjoying the nature around me, the sun shining down, the crisp atmosphere (not too cool though - its starting to warm up :) ) and the creek rustling by. I took a moment to sit on the park bench and just take it all in.... (I also thought: when was the last time that I actually sat down to LOOK around and take in nature? I think it was well before University :P ) ... a few minutes of sun on my face lifted my spirits beyond measure! Needless to say, I had a little 'pep' in my step walking home, and the rest of my day was enjoyable :)
Happy at the thought of spring around the corner!
Wishing sunny rays to everyone across Canada! On those days when there isnt much sun, don't forget to get your adequate amounts of Vitamin D! Be sure to talk to your gastroenterologist or family doctor about what amount is best for you!
Tuesday, March 15, 2011
On the morning of the parade, my friends and I were getting ready for the parade. Ruth asked about what we should be wearing. She stated that she didn’t even really know what Crohn’s and Colitis were. Maybe she should just wear a diabetes shirt since at least she knew what that was. I was somewhat shocked, I had thought that they knew about what I had.
Since being diagnosed with ulcerative colitis just over 17 months ago, right before I was supposed to begin my second year of university, I have thought myself pretty open about sharing about my issues with my gut. I got sick while working at summer camp, and couldn’t return to school in the fall. I had no choice but to tell my friends what I had, as they all wanted to know what the matter was with me. I was pretty open about it. I didn’t want to -and couldn’t- keep it a secret. After a while I kind of took it for granted that my friends knew what I have and stopped talking about it as much. I thought that they would ask questions about it. I internally prided myself on being so open about it. I thought that I was conquering the old not talking about what happens in the bathroom thing.
Ruth’s comment made me rethink my claim that my friends were educated about my disease. I told her that crohn’s disease and ulcerative colitis are inflammatory bowel diseases and other basic facts about it. Then I was saying that basically what happens to me is that when I flare, I tend to poop out blood. Immediately she told me to stop and that she didn’t want to know anymore. Knowing that it affected the bowels was enough for her.
Bonnie and Ruth walked alongside me in the parade, handing out candy to children. They had a good time- I had been worried about it after Ruth’s comment. I nonchalantly told them as Mac Voisin shook their hands- at the beginning of the day- (as he was sitting on the float for the parade) that he owned M&M Meat Shops. They didn’t think anything of it until Mac was telling us the story of the first day he opened the first M&M Meat Shop Store. My friends hadn’t realized that I meant he was the founder of M&M Meats. They were pretty impressed to have met him and his passion for the organization and the cause. We were all overwhelmed when he gave us gift cards to thank US for being in the parade.
Even though my friends didn’t want to know much about my ulcerative colitis, it still brings a smile to my face months later to think that they took the time to be in the parade with me. I am happy that they supported me. I think that every one only wants to know so much. Peoples’ support for me will be shown in some way or other. I just need to remember that each person has their limits and will do what they can. It felt really good to volunteer with my friends for the local CCFC chapter and to educate them through doing something. Every little bit counts right?
YAC Southwestern Ontario Representative
Sunday, March 13, 2011
The idea to write about this column first came from the movie ‘Julie and Julia’ where a modern day woman cooks every recipe in Julia Child’s recipe book in one year. From cakes, to chicken, to her famous beef bourguignon Julie and Julia cooked them all. Even when all hell broke loose and Julie’s marriage was falling apart she still had her cooking to help her through. Now you may wonder why I’m writing all about Julie and Julia – the reason is because Ensure has this recipe book (of course using all of their Ensure products) full of recipes that are new methods to introduce the meal replacement into normal meals and drinks. In the hopes that your breakfast, lunch and supper will meets all of your dietary needs.
There are 15 recipes in the recipe book that they gave me (and even more online) – some drinks, breakfast, supper and dessert meals all with Ensure listed as a main ingredient. And I thought that it would be a good idea for me to make and try them some for you – to let you know which ones I would definitely make again and which I would throw in the trash.
So follow my cooking adventures with Ensure in the kitchen! The first recipe on trial – Pancakes - a typical Saturday morning breakfast.
Can I say that I was wrong - nothing so easy to make could ever be so good! A plus was that I didn’t even taste the Ensure!!! The recipe says it makes 12 pancakes – but they are very thick so I thinned out the batter with more water. These pancakes made my weekend and surprised even the toughest of critics.
Here is the recipe:
1 bottle of Vanilla Enusre
1 cup of pancake mix (or make it from scratch)
1 tbsp of melted butter
1 tbsp of water
Note: If you are making the pancake mix from scratch don’t add any salt or sugar as the Ensure product has enough already.
Try it for yourself! You won’t be disappointed.
YAC Edmonton Rep
Friday, March 11, 2011
Armed with my current ever-present companions of pain, nausea, and an empty ostomy bag, I didn’t need a fortune teller to hint that an ER might be in my future. And before I knew it, I was back in the world of the Emergency Department, and everything was the same - the way the IVs beep, babies whimper, doctor’s crocs squeak on the floor, the smell of disinfectant and alcohol swabs, and those blue tourniquets that smell like baby powder.
Infamous for sucky veins - like many IBDers - they called in the IV team to stab me once or twice. The nurse who came from the team recognized me - we had meet a couple of weeks earlier when I was getting another test done. We had the same sentiments for each other - lovely to see you again, but wish I’d rather not. But my day of familiar faces was far from over. The inpatient nurses remembered me, and my own night nurse was who had discharged me a month ago. Semi deja-vu, semi reality.
This time I was smart. I packed a bag and left it in my dorm room for a friend to bring, instead of having her rummage through my things. My friend dutifully brought the bag to me, and stayed for a nice visit - a dose of teenager-ness is always welcome when the average age of the other floor patients is 6. As we were sitting there laughing, a Child Life worker came in to see if I needed anything. After I shook my head, she then informed me that ‘Good Charlotte’ would be in the activity room later. My friend and I looked at each other, laughed, and then asked “Really?”
Yes really. My association of ‘Good Charlotte’ conjures images of my older brother humming their songs years ago. And now they were going to be in the same hospital as me? What an impromptu event: I’d never been to an activity room for any length of time before, but my friend and I agreed to mingle with some famous people, shorten our six degrees of separation.
We were the oldest there. Duh. But really, probably at least a decade older than anyone there. I maneuvered my bulky IV pole beside me and sat down at the kiddie table. The band was supposed to arrive at 2, but they were running a tad late, so we all got to drawing/coloring the hats and bags with fabric markers. The little three year old next to me - we’ll call her Lila - was busy doodling all over her hat, my friend and I made thank you cards for the band.
When they walked in the door, there was a moment of everything being surreal. It reminded me of the token pictures in magazines of a celebrity with a sick child on their lap, and here I was, oddly one of the sick kids this band was visiting.
I expected pity. Maybe some uncomfortableness. But the band just sat down and started drawing right away. My little friend Lila instructed Joel Madden to make a hat, and then (very adorably) proceeded to tell him that “a band is coming at 2!” - which made him smile. They signed CDs and posters, and asked who our favorite princesses are (mine is Mulan, she saves China, best princess ever).
It’s easy for doctors to look at us as a collection of organs and ulcers in a hospital bed or on an examination table. Lately I’ve felt that my quality of life has been severely underestimated; just because I’m chronically ill, doesn’t mean I can’t have a full and wonderful life. I find the pity from the doctors frustrating, in my recent experiences it feels as though they’re fitting me into the typecast sick kid instead of evaluating me as a teenager who’s dealt with chronic illness for almost a decade.
I don’t want pity. I want understanding. When I start crying in an appointment, and the doctor pushes those darned pity tissue at me, I refuse to take them - I don’t want the tissue, I want to feel better. But today, one of the most remarkable things happened. I found myself crying from frustration and exhaustion with the surgeon. His nurse, who was hanging out by the door, was wiping away her own tears at what I was saying, and then went and found me some tissues. Those were understanding tissues, not pity ones.
It’s natural to feel sad for someone going through a hard time. But what if we tried inspired? What if our suffering could be inspiring for doctors to try more, research more, help more? What if our suffering inspired our community to volunteer more, speak up more, accept more?
We live in a deeply compassionate world where humans care for each other. We are programmed to connect, to feel, to love. In some ways, we are made to feel pity. But more often than not, pity does not equal fighting, it usually equals the acceptance of pain and sadness. If little Lila can be ever optimistic and cheery - albeit young and oblivious - then we can learn from her three year old ways.
IBD or not: action is always better than inaction. Fighting is better than resignation. Laughing is better than crying. Coloring with famous people is better than watching TV in your hospital room. Helping is better than hurting. Empathy is better than pity.
And finding a cure, well, that’s better than anything.
Monday, March 7, 2011
Since I do not have MS, I've come to realize how 'real' anxiety is. Apparently, everything I was feeling is a case of anxiety. Its amazing how much it can control you. And I exercise ever day, and I meditate a few times per week, and I do yoga and stretching when I wake up, and I take time to have fun, and I eat really really clean.... all these things are known to help alleviate anxiety. And yet I still find it so difficult to manage. I guess, like Crohn's, accepting is the first step... and the hardest.
But, I can't let this take away from my training - I haven't given up! I'm still going to do the Ride to Conquer Cancer, I've been getting amazing support from those at my work. I'm still going to do the Canadian Death Race (even if I come in last and have to hike it). Somehow the people that inspire us are those that find a will and a way to act when it doesn't seem possible - maybe I can find a hint of encouragement there...
What I've come to learn lately is that health and the road to health is a journey. It's been a journey my whole life. It's a darn tough journey at times, and sometime's I wish I had a different journey... but somehow it's brought me to where I am now, and to the people that I've met now... and although there's been so many downs, its been worth it...
Friday, March 4, 2011
In many ways, having IBD is like getting married, especially the ‘for better or for worse’ segment. It’s ‘til death do us part, in sickness and in health. But there’s one minor (or rather major) issue with this metaphor – I didn’t sign up for it, didn’t say yes, and (most importantly) did not receive a diamond ring for my years of bathroom visits.
When the very thing that’s making you sick is yourself, it can be hard to differentiate your own being from your attacking immune system. Being angry at having Crohn’s often times leaves you angry at yourself.
And then the simplistic comments begin to flow from medical personnel and family and friends – “Everything happens for a reason” or “You’re only given what you can carry” or “What doesn’t kill you makes you stronger”. I deeply resent these colloquial phrases, because on some level, they suggest that a) we’re physically sick because we’re not mentally strong enough b) that we should be grateful for our suffering since it leads to the ‘profound’ c) that we’re weak people if we complain d) our suffering is meaningless if it’s just part of a random plan, and e) that we have some innate power to heal ourselves, but can’t.
Evolutionary psychologists try to see the world through Darwin’s tinted glasses. They speculate that depression was advantageous because it allowed cave girls and boys to lie low when there was a threat, aka tweaked their behavior for their survival. But then the world changed, and descendants of cave people no longer needed to rely of fire for warmth or hunting for food. But the point is that somewhere at sometime, many things were beneficial for us to have, but now that the universe is totally different, we’re saddled with more problems than blessings.
I would be lying if I said I’d never asked “why me” or cried about having IBD or wanted to break any dish in sight. Just as much as we are not our bodies - we ourselves are not sick, bad, broken people - we are nonetheless seemingly trapped and confined to our diseased bodies. And that can be infuriating to say the very least.
I didn’t get a choice to have IBD. Nobody did. But I do have a choice to pick myself up and persist in living my life. And so, I take thee, IBD, to be my chronic disease. To have and to endure, in more sickness than in health, for good days or bad days, and I promise my determination to use my voice and my heart to find a cure.