Thursday Instead of Friday

I have written blog posts for the past four Fridays exactly, and where has it gotten me tonight - but a rainy, and thundery Thursday in a Boston hospital, belly aching slightly and nestled into a bed full of blankets and pillows.

My life is like the current reminder on the television, ‘Please Stand By.’ When I came into the ER two weeks ago, I was planning on a 24 admission at most, but certainly nothing that involved a real admission and roommates and rounds of doctors and crying and needles and real pain and frustration, but just because I didn’t bargain for it clearly didn’t mean it wasn’t coming to me.

As always, it seems like my admission was a trial of complications and miscommunications - not listening to the 20 year old girl and instead of the doctors all of the time. But there has to be a compromise. This morning, the doctor came in and smiled and me and said, “You were right, weren’t you?” Duh, you think so?

There have been several times when I have collapsed in my hospital bed way too early to be considered a real bedtime (aka 7:30-8 PM), wrapped in a friend’s sweater crying, feeling utterly overwhelmed and annoyed and unsure. And once the tears were dry and I was able to speak without sniffling, I realized that all I wanted was a big hug and someone to tell me that they loved me and that everything would be okay - even if it seemed like a total big lie. 

I know that I am really honored with so many people that care about me, and yet I find myself completely incapable of asking for help. I think it’s a completely admirable quality in a person, I just can’t seem to rouse myself to do the same. I don’t need to prove anything to anyone, and yet was stubborn to my Mom insisting that she was coming to take care of me. But let’s face it - at the end of the day right now, I just want to be a little girl held by her Mom and being told that everything is going to be okay.

When nurses - who have been so lovely and wonderful - comment on my schoolwork and my tip taping away at my laptop, they say that I must be so organized and all of the like. And while that’s a very nice compliment, the truth is that it’s simply practice. Practice and determination, of course, but mainly good ol’ fashioned practice about how to be sick and be a student, the two are no longer mutually exclusive things.

I didn’t want to start my school year in the hospital, but then again, I don’t think anyone wants to start any type of life in the hospital. But it happened, and so life will go on. They found more Crohn’s - duh - they finally managed to get a PICC in for fluids - duh - and discovered that I was in fact the biggest expert of all - DUH. 

This post isn’t terribly anything - inspiring or exciting or whatever. But here is what it is - it’s a post on a Thursday, it’s a slight change of pace, it’s my determination to pick up and carry on and live the life I want. 

I was telling a friend the other day that this isn’t the life any Mom or parent wishes for a child, but by the very same token, it is not to say that it’s not a life worth living or a life that won’t be beautiful. It’s just one that will have more bumps in the road, more bruises in my hand, my scars on my belly.

Days can suck when you have IBD. And that’s okay. If we pretended that they didn’t suck, we’d be nuts. But days don’t have to - and won’t always - suck. So in the words of a good friend of mine, keep your chin up, your gaze steady, and your stride strong - you will get there (and so will I), IBD and all.

Jennie 

8 Years Running... and Still Tripping

On September 23rd, 2003, I was wheeled into the OR for my first colonoscopy. I was scared, I was young, I was in pain, and I was nervous about what was going to happen. When I woke up from the anesthesia and was met with my teary eyed parents and the diagnosis of Crohn’s, I had a sense that everything would be okay.

I have no idea why I felt that way. I think it was mainly because I didn’t know what having Crohn’s really meant, I thought it was something that required a yearly blood-draw or a pill and not the reality that so many of us have come to endure. 

But this post isn’t about reminiscing and being newly diagnosed and nostalgic. No, this blog post is about my current hospital stay. As per my last post, I had missed the first day of school with a blockage and had spent the day hooked up to an IV and chilling in a hospital bed. Come Wednesday of last last week, the 14th, my belly had grown tight and the pain began to spike. My goal was to wait and if I needed I would go to the ER after classes on Thursday (since one of my classes is only on Thursdays for 3 hours and I didn’t want to miss it, or my other classes for that matter). But life - or mine at least - never goes according to plan. I lived through Wednesday doing all of my activities, even having vegan pizza with my good friend Maya (because I love seeing her and because vegan pizza is AMAZING). Then I put on a Fetanyl patch, and went to bed. Come 6:30 in the morning, it was time to drag my sorry bottom to the ER and skip my classes. I was ready for another hefty day of fluids and loopiness from pain meds and draining my iPod battery, at least I was until they told me they were going to admit me. Oh. That was unexpected. I had none of my textbooks, no spare undies, no deodorant, and no idea about what I was going to do. 

It was only the second week of class and I was taking my second ‘vacation’ pass. Doctors began to flood in my room, to be honest they came in so fast I didn’t know all of their names or official titles, all they were interested in was my bag. My room is on the 16th floor and since I was the first person in the room, the porter decided that I was nice and could get the window seat. It is a beautiful, two-window view of the Charles - something pretty to look at if you can forget that you’re looking at it from a hospital bed. I was scheduled for test after test, and whisked off in a squeaky stretcher all around the massive hospital. My friend stole into my dorm room (well, okay, that’s not true, the RA was with her) to collect my books and important things (cough, cough, my computer and a season of Grey’s), so I was mostly all set.

I won’t bore you with the details of the tests and the other fun experiences I have had, but this is my overall experience/moral of the story. I’ve spent several days overwhelmed and crying - doctors had differing opinions (like polar different), I was here all alone and feeling very small and helpless and directionless. How do you rouse yourself to get back up when all you want to do is throw in the towel? I don’t know, but at the very least I knew I owed it to myself to try.

Today I will (this better not jinx it!) finally get my PICC line and some fluids (for the first time in over a week). I will finish some more homework/reading. I will watch some TV. I will revel in my joy about last night’s Grey’s Anatomy season premiere (SO intense, so good, so Grey’s). Soon, I will get back to my dorm room, back to eating (product placement is incredible and I really want anything advertised on TV right now), back to classes, and back to my life. Right now I’m in pain, I’m exhausted, I’m in the hospital, I’m drugged, but hey, I’ve got a nice view. 

Here’s the nostalgia if I may: 8 years ago today is a day I will never be able to forget. I can’t believe it’s been so long and more than that, I can’t believe how much has happened to my body and how much I have done in those years. As I grow older and continue to have ‘disease birthdays’, I know there will be even more things to remember, more scars, more stories to tell - and many, many more things to be grateful for.

Jennie

Are You Kidding?

Come Wednesday PM, I was sitting in my computer science class scanning over my notes when I realized it was happening again. Blockage time for Jennie. In the spirit of being an obedient GI patient, I waited out my blockage as long as possible and survived through the night, wanting to go to classes on Thursday. But 6:30 AM on Thursday had a different story - a ‘march yourself to the ER NOW’ kind of feel, and off I went.

Pain was worse, nausea was worse, I was upchucking on myself and felt like saying to everyone, Did you think I was kidding? Frequent blockage issues really mean frequent blockage issues. The absence of any decent veins with the combination of desperate need for pain and anti-nausea medication makes for a bad time.

This post entry is not long nor is it especially touchy - but here it what I hope it is: truthful. When I was waiting for my ileoscopy earlier today, I couldn’t help but burst into streams of tears running down my face; the pain, the frustration, the uncertainty, the aloneness - sometimes it’s all too much. 

I will be fine - as a good friend of mine recently pointed out, pain is inevitable, suffering is optional. And humor, well, I think that just might be a necessity.

Jennie

Welcome Back

Sometimes I’m convinced that I’ve mastered the skill of irony. 

Monday night was the floor meeting for my floor (let me just mention that it’s Pokemon themed, take it as you will) and I asked my RA if I could speak with her afterwards. I told her that I have Crohn’s and an ostomy and mentioned my blockages as an FYI in case I needed to escape to the ER in the middle of the night. She was very nice about it and told me to call her when it happened.

Midnight: Blockage becomes fully apparent to me. Nausea, pain, exhaustion. Call home to tell my Mom. We agree that I should try to wait for a bit and go in the morning.

1:30 AM: All ostomy output stops. Pain super intense. I sprung from the bed, got dressed, packed my bag, and called my RA.

2 AM: Arrive at Emergency Room.

4 AM: In a room, finally have an IV lodged in my left hand. 

I sat in my room, staring at the clock, only thinking about first day of classes that I was going to miss in a matter of hours. I was flooded with medications and virtually catatonic but finally a little more comfortable than a few hours earlier. 

16 hours after my blockage began, the fluids and pain medications fully in my system, I was feeling better and ready to run from my hospital bed and get back to campus. I was finally discharged (better than my planning of yanking my IV) and was in a cab back to the dorm. It was around the same time that I had left for the ER that I was returning to my room, it felt like a day had just been subtracted from my life. 

Isn’t it ironic that I told my RA about my blockages and then I’d get one a couple of hours later? Isn’t it ironic that I spent the first day of classes in a hospital bed? Apparently it’s my official welcome back to college.

And even though it’s a bumpy start, it’s the start to my year. Of course I’m nervous about how my health will pan out, but it’s so nice to be back on campus, running on the Esplanade and back with my friends. 

But however ironic or sad or funny or ridiculous, it’s my life, and my welcome back to campus. Junior year - watch out, here I come. 

Jennie

Three Years Running

Guy: “Welcome to the dorm!”

Me: “Thanks, it’s my third year in the same room.”

Guy: “Oh, well, welcome back then!”

On the monstrosity that is my university’s campus, I have inhabited the same little room for the past couple of years and will be living within those four walls again. After all, why mess with a good thing (aka a single room with a private bathroom - thank you intestine disease!)? After being there in that dorm for so long, I notice the small things, the new carpet in the hallway, the new lighting, and yet each year, I am both overwhelmed and comforted by the empty room.

Above everything else, it’s an empty room waiting to be filled with my things and a whole new year of memories. But it’s also a reminder of my freshman year - like when I spent Hallowe’en weekend in the bathroom with my IBD - or my sophomore year - like when I had my first blockage and was face-deep in my toilet - and now my junior year. I know that I’ll have a million great memories, and I’m a little nervous about what medical ones I’ll have.

Sometimes I find that when you’re on the journey of school or just life in general, you go through the motions, morning becomes evening, seasons change, and before you know it, you’re a little older. When I think back to the last few years, I am unable to really believe what has happened to my body and me as a person. But I think that if I knew then what I know now, it would only be more daunting. Because, it was possible - but that’s not to say that it was easy.

To everyone returning to school - good luck moving in (I hope you are a better packer than I am!) and don’t forget that you can do it and can have an amazing year. Every year is another opportunity to get to know yourself better and learn a little more about the world. Yeah, it sounds cheesy, but it’s true. I used to think that every year got a little worse: grade 7 was my diagnosis, grade 8 was Prednisone, grade 9 was being hospitalized, and so on and so on. But I think the truth is that every year is different, for everyone, but especially for those of us with a chronic illness. It’s the roller coaster we didn’t ask to be on. That’s for sure. 

But nonetheless, it’s the one we’re on. It may be a scary ride with a thousand twists and turns, and if we’re lucky, we can enjoy the view from time to time while we’re on the way to where we’re going.

Jennie

Guest Post: Erica's Story

As we continue our guest post series, we are excited and honored to share Erica's story with you. She has an amazing blog where you can find out more about her journey and her 'determination to heal.'

Stories like hers, and our other guest posts, remind us that we are not alone - but more importantly, that we are powerful.

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True Healing

I was a 24-year old doctoral student when I was first diagnosed with inflammatory bowel disease. At the time I was driven, perfectionistic, and proud of my intellect. I settled for nothing less than A’s on my tests and papers. I pushed myself to work hard even when I was sick with a flare. And I wouldn’t let go of any of my extra-curricular activities, including volunteer work.

After I earned my masters’ degree, I took a leave of absence and went to France with my boyfriend at the time. I experienced a long IBD flare while I was there, and after several months I decided to go on a meditation retreat at a meditation center near Bordeaux. There I started to feel more calm and peaceful. I stayed at the meditation center for almost six weeks and by the time I left, my mood and physical well-being had improved substantially.

I moved back to the U.S. after my relationship with my French boyfriend ended. I realized that I needed to have health insurance and I found work in Washington, D.C. I continued to meditate regularly, but meditation was not enough to keep me out of the hospital. In early 2001 I barely survived a severe flare of IBD. I was on short-term disability for several months following a two-week hospitalization, and I stayed with my parents in Indiana during that time. The corticosteroid medicines that I took seemed to exacerbate every feeling I had and I struggled with deep depression during my recovery.

I eventually went back to Washington D.C. and started working again. My old habits of perfectionism and workaholism came back in full force. I worked on Capitol Hill as a public health policy associate for a non-profit association that aimed to advance public health initiatives for people with disabilities, youth, and the general population. I got carried away with my work. Sometimes I even brought a laptop to the hospital so that I could work there. I still hadn’t learned to listen to my body.

A surgical team removed my entire colon in March of 2002. I had high hopes of long-term remission, but suffered from a severe IBD flare in my rectum less than a year after the surgery. At that point I realized that no one else was going to get me out of the vicious cycle I seemed to be caught in. I had to find my own way out. I asked my doctor if I could go on a long-term immunosuppressant, 6MP (I was seriously allergic to remicade). Three months after I went on 6MP I began to experience fewer IBD symptoms.

But my story doesn’t end there.

I continued to have mild to moderate flares of IBD for a couple of years, even on 6MP. I began to notice patterns. When I worked too hard and took things personally, my symptoms seemed to get worse. Researchers know that stress does not cause IBD, but it can exacerbate symptoms. There is even some evidence of higher levels of nervous system dysfunction among people with IBD than “healthy” people (I blame the corticosteroids!).

I decided that I was going to do everything I could to help my nervous system calm down. That sometimes meant quitting a stressful job and saying to others, “No, sorry I can’t help you.” I had to tune into my body and listen closely to its signals. What kinds of situations stressed me out the most? I decided that deadlines were not good for my gut. Of course there are only so many deadlines one can avoid in modern society. I planned ahead so that I wouldn’t feel so stressed when a deadline came. I practiced sitting, walking, and eating meditation regularly. And I took part in activities that helped me to really “be” in my body, like dance and Qigong.

I didn’t find the magic bullet cure that I had hoped for in the early years of living with IBD. But I lived a lifestyle that made me feel whole and full of vitality. I found out which foods triggered abdominal pain and avoided those foods as much as possible (it’s a long list actually!). I started taking high-potency probiotics that I believe helped my gut recover. I asked my doctor to test my levels of certain vitamins and minerals and we discovered some deficiencies, including vitamin D, so I took supplements. And I continued to avoid highly stressful situations or at least practice mindfulness when I encountered them.

I’ve now been in remission for over six years. My physician has found absolutely no evidence of IBD in my intestines. They look completely normal, and I’m currently in my second trimester of pregnancy. I’m glad that my body has recovered fully, but I’ll never forget the lessons that I learned during the years in which I lived with severe IBD.

I learned to let go of expectations for myself and for others.

I learned that compassion and love are more valuable than achievements and praise.

I learned that I could never be perfect, but I could become whole.

For me, true healing means lovingly accepting all of who I am and seeing how deeply connected I am to the pulse of life on Earth.

Erica

24 Hours

In 24 hours, I both left the land of the healthy and returned to it.

My last few days in Halifax before my return to Boston are filled with last-minute visits with friends, errands, and packing (that I have yet to do...). Thursday I had made plans with a couple of friends to meet up for lunch around noon, just enough time to head to yoga with my Mom in the morning. We were in the class when half way through it, I felt my blockage pain pulsate in my upper belly and just like that, I knew I was knee-deep in another blockage. Luckily I was on my mat closest to the wall, so each time we would turn to it I would make a face of pain and hold back tears. However stupid, I wanted to finish the class and when it was over, told my Mom that I was having a blockage and needed to get to the hospital.

But, what about my plans? I wasn’t going to see these friends for another six months, so I decided that I’d go and meet them for lunch and then meet her at the hospital. Stupid? Probably. But, I operate on a purely stubborn system and so I set off downtown to go to lunch. I even had some salad, what the heck I figured, it couldn’t make things worse (well, maybe). I dropped my friends off and set out to the ER.

They say French food consists of butter, butter, and butter. By the same logic, the ER consists of waiting, waiting, and waiting. Finally I was taken to a room and then the process of stabbing (aka putting in an IV) began. I was given a Johnny shirt to which I said, I’d rather not. The nurse looked at me and asked why, to which I replied that they weren’t very attractive - followed by the fact that I was in leggings and a t-shirt and could lift whatever needed lifting for their exam. She made me put it on. Why? Do I have to be in uniform? Apparently. I’d like to think I’m patient and whatnot, but when you’re coming at me with a very sharp needle and aiming to put it in the inside of my wrist, I’m not the happiest camper on planet earth. In my experience, that is the worst place to have an IV and then she proceeded to stab (I use the word stab because it was exactly that) my other hand for bloodwork. But bruises aside, the tasks were completed and I set about listening to playlists on my iPod as the fluids slowly dripped in. Pain medication is fully necessary during a blockage - or really, any painful experience - but they make me so loopy and like my head is going to float away, and then they make me want to throw up. I began to upchuck on my bed before a basin could find it’s way under my mouth.

But 8 hours and four bags of fluids and injections of pain meds later, I had turned my metaphorical corner and was feeling better. In my family, returning from the hospital means the traditional stop at Burger King for fries, even at 1 AM (thank goodness for 24 hour drive thru’s). They were delicious - even if I sat in the passenger seat throwing up as my Mom ordered them and then threw them up at home, they were delicious nonetheless.

I passed out in my bed, my head spinning with my impromptu ER plans. And with my head pounding with an incoming headache compliments of pain medications, I rolled myself in my covers and went to sleep.

My last 24 hours were eventful, but not the fun kind, the annoying Crohn’s kind. At the hospital, I said that I had begged for a port or some sort of permanent access line and that I never got one. My Mom said, “Well, that’s because we always thought it would be the end.” To which I replied, “It’s called chronic for a reason.” This summer I have been to the ER five times for blockages, which is a little much if you ask me. It can be difficult to stand up and pick up the pieces of my life after I keep being pushed down.

The land of the healthy is a lovely place to be if you can appreciate it. And sometimes, 24 hours is all it takes to do just that.

Jennie

Guest Post: Sara's Story

Here is Sara's story - someone who knows that an IBD diagnosis can't get in the way of living life. She has a wonderful Facebook support page with over 1,500 members - all gutsy, of course. We asked her to share her story with us, and we're so honored to be able to share it with all of you.

My name is Sara I am 31 years old, and I was diagnosed with Moderate - Severe Crohn’s-Colitis In May of 2009. It took ten years for me to get my diagnosis. I was diagnosed with countless Bowel Infections and Stomach Flu’s. I went to the doctor at least least 20 times over the years with my symptoms of G.I. bleeding, weight loss, dehydration and 25+ bathroom trips per day. I was given antibiotics and each flare up eventually went away on its own. There was a period of time that I stopped going to the doctor, because I felt crazy. I blamed myself and thought it must be something that I am doing wrong, too much stress, too much working, or not eating properly.
January of 2009 I got really sick, and was bleeding a lot, and having major pain. Problem was that each flare up I had, always started off just like a flu would- Fever, body aches, sick stomach etc. But I was bleeding. Why were they not helping me? I went to the doc 3 or 4 times, while I continued to work 40+ hours a week, as a chef/cook at a hotel. I was fading quickly, nothingstayed in me. Finally one morning in early May, I woke up and saw that I was bleeding heavily. It really scared me, so I phoned in sick to work and headed for the E.R. I told the nurse that I thought I had crohn’s disease. (I had been researching my symptoms). She smirked at me and said: " ya okay, we will see". I was given pain meds, blood work and was asked to please wait to see the GI on call. That was when I met my amazing G.I. doctor whom I am so lucky to have! He listened to me, and said that he was fairly certain that I had Inflammatory Bowel disease, either crohn’s disease or Ulcerative colitis. Later on that evening, I saw that same nurse again. She apologised to me and said: “I guess you were right”. Unfortunately, I was.

PICC line, TPN, IV steroids, pain meds, 6mp, and a total of a month long hospital stay. I did get our after two weeks, only to end up back in there two weeks later for another two weeks. Then came Remicade. It took a long time to work for me, but it did. It cleared up the bleeding ulcer’s in my colon. Unfortunately I had to stop taking it after 10 months, due to severe inflammatory arthritis that I had developed. A year and a half later, as I sit here and type this, I am still suffering with what they call “Crohn’s Arthritis.” My hands so painful and my fingers swell up like sausages. There have been days where my wrists and shoulders hurt so bad, I couldn’t pull up my own pants after using the restroom.

Am I in remission? Well, I guess you could say that my colon is. I still take pentasa, which seems to help maintain my large intestine. I still suffer with the crippling arthritis and perianal crohn’s- exterior inflammation and fissures. In the past 2 years, I have been on pretty much all of the Crohn’s medications. I recently started Methotrexate, and I am hopeful that it will soon start to work, and help all of my auto-immune related issues, so I can get back to work, and pursue my career in Culinary Arts. It’s a challenging career, both physically and mentally, but I’m just not ready to give up on my dreams. I do have crohn’s, but it certainly does not have me, well, let me rephrase that: It might have me for now, but I will get control back, and I will keep fighting it.

When Crohn’s Disease gets me down, all I have to do is count my blessings. I have an amazing and supportive family, A partner who loves me for who I am, and a roof over my head. There are so many other people all over the world who don’t have any of these things. I am blessed. Never ever give up hope, because without hope, we have nothing. We are never alone in this IBD fight, we have each other and its important to reach out. Reach out for support and also reach out to those who need support. You can make a difference in someone else’s life, just by sharing your story and this is my story so far. I would like to leave you with a little something that I wrote about 6 months or so after I was diagnosed, and I think we can all relate to this.


The Five Step Never Ending Roller Coaster of Chronic Illness


When I was first diagnosed with crohn’s disease I had to stay in the hospital for a few weeks. I spent hours and hours staring at the wall and thinking. I thought about the grieving process that is used to describe the steps that a person will go through after the death of a loved one. I started comparing the steps to what I was going through and it seemed to fit how and what I was feeling. The only difference is that they never seem to end, or even go in a particular order, and rather than grieving for a person, we are grieving our own health & wellness.

DENIAL

“I can go back to work, I’m fine.” I remember being in my hospital bed and my GP came to visit me one morning on my 2^nd or 3^rd day in there. The first thing I asked her was, “When can I go back to work?” Instead of answering my question, she told me just to concentrate on getting better. I really thought I’d be back there in a week or so. For months, I think i really thought this thing called Crohn's would all go away and never come back. Didn’t matter what i was told about it being "chronic"　I would have my old life back and everything would be fine. To this day, I occasionally still have moments of denial and I’m sure I always will, but it has definitely gotten better.


ANGER

I was and at times, I still am, so mad! not that my body is attacking me and not someone else, I don’t ask “why me”?! Its because i cant do the things i used to be able too. I’m mad that i can't make plans with my friends without disappointing them at least 50 percent of the time.\ I’m mad that my loved ones are constantly worried about me. I’m really mad that I’m letting my team down at work. Logically I know it is not my fault, but I still get angry at myself, as well as the hand that life has dealt me. I Know it could be a lot worse and I know I am lucky to have my arms and my legs amongst other things. Its just that being in pain and having no energy is one of the most annoying things to me. I want to…..but I just can’t because my body wont let me. This brings me to the next stage.….


BARGAINING

I quite enjoy making deals with myself- “Its okay to eat that bowl of chilli because i picked out most of the beans and i will eat a piece of bread and that will soak up the bad stuff.” What? no it won't! I’m laughing out loud right now because of how ridiculous that is! I deserve this ice cream because I Haven’t had any for so long. While I may deserve it, it still makes me sick, and I know the outcome. I call it: “Eat Now, Pay Later” Once I told myself I was in remission because I had no pain for a few hours and actually had some energy, so it was okay to eat a few handful’s of popcorn. So silly, I know. Where is the step called GUILT? I think we need one of those….

DEPRESSION

Yes, I think we have all been there. I like to bargain with myself even more while I’m depressed. Well I have to lie on the couch and not move all day because I’m a sick person. When I’m feeling depressed my favourite thing to do, is stay in my pyjamas, no shower, no deodorant, messy hair. I watch TV for hours and drink way too much coffee. Sometimes I would go 3 days without a shower. Until my partner would politely say- “maybe you should change your shirt.” Then I would drag my sorry self to the shower. These days pass and I do feel better eventually. It’s a phase, just like the others.

ACCEPTANCE

Yes there have been many times i have told myself that it’s okay, no problem, I can handle this. Could be worse and I’m thankful that I only have Crohn's disease and not something worse. I tell myself that this disease is easy compared to what many other people have to deal with on a daily basis. I can move on, I can live my life and　it will get better each day. God wouldn’t give me something that I could not handle. This is all very true, until I start the stupid process all over again! 　

　
I swear I go through every single one of these steps over and over and over again- every single day and it never ends. It feels like roller coaster that keeps on going and going and going.


The good news is, there are many positives in this. I know I am very thankful that I still have all of my body parts. I am also thankful that that I still have hope. Hope that I will be able to make it back to work one day soon, hope that I will get some energy to do the things I love. Hope, that we will one day soon find a cure for IBD. I also know that i don’t want my old life back. Only because this crappy disease has made me who i am today. I appreciate the little things in life and I try not to take things for granted (Like being able to eat). I know now who myreal friends are. My family and i talk even more now--i know its out of concern, but either way, its brought us closer together. I also have so much more faith in my relationship with my partner. He has totally amazed me, what he can put up with and handle and how sympathetic he is and how much he really takes care of me. I truly am blessed to have all of my family and friends, this life and this body.

Sara

#3 Tour for the Cure: Ants & $91.50

Sunday at 11 AM could not come fast enough. I could barely sleep the couple of nights before, a mixture of excitement and nerves, unsure of how the day would turn out. When the Tour was in Dartmouth back in August, I was unable to attend, which ironically, prompted me to meet with Andy outside of the event and ended up proposing to follow his incredible journey across the country on the blog. But seeing photos from other Tour sites and the great things people had to say made me ache a little bit - or a lot a bit - that I had missed out on it.

First of all, I’d never done yoga outside, let alone yoga to support IBD awareness. And it just seemed impossible that the opportunity was so close for me to attend an event and that I’d missed it, that I decided to organize an event here in Halifax in support of Andy’s Tour - a satellite event, if you will. After coordinating with my local yoga teacher who graciously agreed to be of immense help and setting up a Facebook event, Sunday at 11 was set and I was finally going to be on a yoga mat in the great outdoors.

What I’ve found with many Crohn’s events that I have taken part in is that the turn out in terms of numbers isn’t always so extreme, but it’s the spirit and the passion that makes you stop and think, “Wow, this is unbelievable.” We gathered on the grass with our yoga mats, my Mom and I lugged over a cooler of water bottles we had brought, and a canvas ‘Andy’s Tour for the Cure’ for us all to sign to send off to him with the donations. I gave a little spiel about what an important and amazing cause it is and then it was off to the races and we got moving.

I broke poses a few times to run and snap some pictures of the group warrior poses and planks - there were quite a few I’ll add! - and then would hop back on my mat (and shoo off the tiny ants) and continue on. Cars would pass, the curious stares of onlookers at a bunch of people on colorful mats in the sunshine, I would often see them upside down in my downward dog. I tried to pick which moments to run and take pictures, but at one point decided that the most significant moments deserved to be preserved only in memory - which, I think, may be the most meaningful even if I can’t hold the picture in my hand. Being still at the end of class, surrounded by the trees and ants and cars and the sun penetrating through the leaves, it felt so incredible to be at the class and be a part of the Tour. I couldn’t help but be jealous of Andy for traveling across the country and feeling this way at each event!

On Sunday, the 17 people at the event raised $91.50. It may not be enough to buy a new car or even a week’s worth of groceries, but it’s $91.50 more for the cure, for awareness, and for Andy’s tour.

Andy - thank you for persisting and bringing us IBD and self awareness through yoga, you are a survivor, a warrior, and mostly, a true inspiration.

Jennie

To accept, or not to accept!?

Ever since I was diagnosed with Crohn's Disease I have always said that I live by the quote "I have Crohn's Disease, Crohn's Disease does not have me." Recently I've realized that I don't really live by this quote as much as I like to think that I do. Physically I live by it, because I don't allow the fact that I have Crohn's stop me from doing anything that I've ever done before or anything that I want to do. I still push myself daily to do all the things I did before Crohn's Disease, and I don't plan to ever stop. However, mentally Crohn's Disease definitely has me. Some days I don't have a problem, and it doesn't bother me, other days I feel like my world has been taken from me, and I'll never truly get it back.

Recently my boyfriend made me realize this, he showed me without realizing what he was showing me. He always tries to make me feel better about myself, make me feel like I don't have Crohn's, and make me feel like I'm no different then the stranger walking down the street. I've found this really hard to accept, maybe mostly because I'm the baby in the family. I've always been spoiled(my sisters will LOVE me admitting that one), and babied to some extent. When I got sick, my parents were always right there beside me whether it be wiping my tears away, crying with me, or even laughing with me. They were there after every surgery, and with every step to recovery that I had to take. I guess I got really used to it. Also, when I was first diagnosed I always talked to a counsellor for pretty much the first 7 months. I found it hard at first to go from talking to someone daily to talking to no one, but I wasn't going to admit it, because I always kept things to myself growing up.

I guess in the long run, keeping alot about how I feel about my Disease has caught up on me, and it was hard for me to accept that I haven't really fully accepted my Disease yet. I was diagnosed almost 5 years ago, and I still get upset about having Crohn's. One day I'm perfectly fine about everything, I don't care that I've been sick, I don't care about what I've gone through, and I don't think about what I might have to go through in the future. Other days, I feel like everything I went through was just yesterday, I feel like my life has been stolen from me, and I think about all of the "if's" when it comes to my future with Crohn's. I've had days home alone when I just lay in bed crying, thinking "why me". I find it hard to think about the concept of "it could always be worse". I find myself only thinking about where I've been, and what I've gone through. I find myself thinking about how differently my life would be if I had never gotten sick, where I could be, and what I could be doing if my life had turned out differently.

Maybe now that I've accepted that I haven't accepted my Disease yet, it might be easier to slowly find a way to accept it. I'll still have my days when I'll get upset and get down on myself, which I think is pretty normal, but hopefully I can make those days less often and less frequent, perhaps eventually almost non existent?

Colleen Lynn