"It was as if my stomach thought of itself as a heart. And no matter how I filled it—with men, with books, with food—it refused to be still. Unfillable—that's what I was. Nymphomania of the brain. Starvation of the heart.” 



These are the hard days of Crohn's disease. The days where I feel unfillable, the crash from coming down from a high of being busy and feeling good- it is hard to survive the crash and burn of the good times. 

These are the days where I have difficult and frustrating moments, where I can hardly drive from downtown before my stomach begins the all-too familiar groans moans and bones, and suddenly I'm screaming at every car in my way, every red light and breathing excessively/alternating screaming from the stomach pain that swallows me whole and reminds me that some days just aren't good. These are the times I pray I'll make it home to give up my too-recent meal, that I'll spend an hour in the bathroom suffering from excessive diarrhea and stomach pain, wishing I could just be more normal, and yet thankful that I was just able to make it home in time. These are the days I wish I could keep any part of nutrients in my body, wishing my intestines would absorb the energy I so desperately need, wishing they'd relieve me of feeling exhausted and overwhelmed.

During my trip to the Miramichi I was generally stressed busy and overworking myself and not taking my Prednisone as I should have. I had been down to my 5mg mark for about 5 days and thought since I had missed a couple it was no big deal to go against my doctors orders of tapering from 5 to 2.5 then off, thus my crazy confident mind said go ahead, and as any of you with Crohn's know, that invincibility when you are feeling good is so often the reason you end up feeling bad again. 

So at this point, I am cranky, I am frustrated, I am irritated and I am withdrawling. It is not hard to detect, and I've found out from a quick google search that it is very real since your body often maintains around a 3mg dose naturally in your body and when you stop, your adrenal gland suffers and is not producing enough to maintain your level, thus creating a withdrawling effect. It is tiring and I am exhausted, sore and generally not a fun person to be around. *All apologies to Bobby who is putting up with my cranky ass, as well as my oversleeping and lack of cleaning.

And now, I am faced with allowing my body to start producing it naturally, since I am already into the withdrawal, to continue and make the days I've suffered worth it, or to go back onto the medication again, taper as advised from the 5mg mark and perhaps suffer a couple days again. Crohn's problems. Crohn's decisions, and today, I want them to go away. Luckily it is needle day tomorrow and there will surely be a call put in to my doctor Monday morning. Sometimes I am so frustrated at how quickly your body/health changes with Crohn's.

I am also in full-blown Prednisone induced acne. Small little red bumps have taken over my face and it's sore. Typically I get this a lot sooner, but I've only noticed it really start (and go full blown in the matter of) in the last few days. The moon face is also bloated and my stomach is ginormous, I often tell Bobby I feel like Rolly Poly Olly trying to get out of bed because my stomach/joint pain has just taken over.

Also, with so much craziness/hate/protests going on in the world, it is hard to turn on the TV lately. Though these situations are a constant reminder of how lucky we all have it (with or without Crohn's) there seems to be a point where you just need to turn it off and try and feel positive vibrations. So tonight, I think I will watch some meaningless TV, or perhaps read about Johnny Cash. All I really want though is a long sleep, and just to feel better....

fingers crossed..
xo e

p.s. if you are having a terrible day, I recommend doing something nice for yourself- like getting lovely nails. If you're in the Halifax area, go to Burlesque Nail Design, lovely ladies and lovely conversation. Special thanks to Sarah for always being so creative and making me feel better.

What a week it has been, I feel like I'm constantly in motion, moving so fast, getting lots done, but this girl needs a break! Lots has been happening and I've got to remind myself that feeling better doesn't mean run the marathon, sometimes you need to tell yourself to walk too.

I spent a few days in the Miramichi with my grandparents, helping around the house etc. Don't forget to visit your grandparents, enjoy their stories and their wisdom, you will miss them when they are gone, life doesn't always give you second chances.

I have officially stopped taking Prednisone, so my body is adjusting accordingly. Had a rough 'Crohnsy' day yesterday, sore bones, joints etc, but the taper has gone better than I expected. If I can just get this hunger monster tame, I feel we might just be in the clear. In a weird way, I am a little sad that chapter is coming to an end, partially because being on a low dose can make you feel incredibly 'normal' and have normal bowels, but also because it has been a tremendous growing experience. With Crohn's though, I know there will be many many more lessons to learn, and many more obstacles to face, so be not afraid, the blog will continue.

There has been some great things going on; going back to my government job for the month of May, which will be incredible to catch up with some wonderful ladies, travel around Nova Scotia and bank a little cash money. It will certainly be busy, but usually I thrive in those situations, where I'm always moving, yet at some point I know I'll inevitably crash and burn. Perhaps I can put Russell to work at the apartment so I have a little less to do/worry about when I get home at night. I wish! 

The devil car has thus continued to give us trouble, so I have to take it in to Canadian Tire only to get jipped off as usual I'm sure. Not looking forward to having the headache of that.. just want a good car to truck me around!!!

Perhaps I will leave it here, as I've been dragging you on for X9 paragraphs in so many recent posts, though I should menchen my 'picture of the day.' I've had a Canon Rebel for the past few years and have not given it the justice it deserves, so on a beautiful spring day today, I'm making a commitment to start anew with an old hobby. Perhaps this will make me stop and 'smell the roses' more often, and capture a few more moments in motion.

Hope you are all enjoying the sunshine. xoxo e

I have officially survived to the 5mg mark! My moon face is in full effect and I even had a sweet lady ask if I was pregnant. (okay a little dramatic) really she only asked that because Russ, Jode and I hit the LDS Little Doggie Social last night at The Chewed Slipper in Sackville, and our normally 'little social butterfly' stuck by his momma and substitute father (Jode because she's always around when Bobby works nights) the entire time. He met a friend named Laila though, a 5lb yorkie with a little pony tail. I almost took her home, but thought there may be some legal repercussions of that.

It was an awesome lazy day, lots of time to catch up on sleep and relax after a verrrry busy end of the school year. And we have big plans to celebrate our 2 year anniversary/finishing school/leaving the city tomorrow which entails a whole lot of delicious pasta at Da Maurizio followed by Legally Blonde at Neptune. So excited to have a wonderful night with the best boyfriend. It has been hard with us spending so much time away so I am really looking forward to getting my Bobby/Bruiser (I'm sure there will be a Chihuahua in the play!) fix. 

Had quiet plans for next week, but after hearing about my Nan and Pop both being ill in Miramichi, I thought they could definitely use some help around the house. My nan was admitted to the hospital with low blood and required 2 blood transfusions so thank you to all of you who are avid blood donators! Your blood saves us!! It has saved me before when I required 5 transfusions! For those of you who do not donate, it's never too late to start! Or if you can't it's great to support someone who can, often people can't donate due to lack of iron etc. and that's okay, I'm one of those people who unfortunately can't because my levels are always a lil wacko. My Poppa managed to catch that terrible flu and could hardly speak on the phone to me today, so I think they could really use someone to visit Nan, cook some meals for Pop and maybe a little yorkie to brighten their spirits. Pack up your satchel Russell, get the Ipod, we're going to the chi what, we're going to the chi what.
Sadly our main man won't be able to make it with us because of work but we'll be missing him.

It is hard to believe our time in the city is winding down and I'm looking forward to visiting home at the end of the month for our Godson/Nephew's baptism and to get a lil PEI loving (this includes a full on BBQ). I have been feeling so content and at peace lately, like things are finally coming together after such a crazy past four months... I have so much to look forward to and I'm hoping that my health prevails and keeps me in a good positive place. I've put on 3lbs since the Prednisone Episode, and often feel uncomfortable though understand my binging certainly doesn't help the case. I feel like every bite is worth it however because right now I am able to eat without planning every miniscule detail and can simply enjoy eating whatever I damn well please. There is plenty of time to take the weight off, so for now I'll keep eating, minus any more sneaky Easter Clearance purchases, which by the way is gone. Ahhh the hunger monster.

So, on the topic of all of the feeling better jazz as well as blood donations, I had mentioned the Rita Parsons story in my previous blog and think it is amazing that her parents chose to save five other lives by donating her organs. I encourage all of you to become organ donors, all it takes is a small sticker on your health card to have a large impact on another's life. In fact, you might just save someone else's. http://www.huffingtonpost.ca/glen-canning/rehtaeh-parsons-was-my-daughter_b_3056888.html check out this beautiful story, written by her father.

Sweet dreams blog friends, hope you all have a lovely Saturday and will post a pic up from our big date night out.

Here is a pic of Bobby with his surprise present he got from the courteous Canada Post man who buzzed our door at 11:30am this morning (yes I was still in bed). He got this as a gift for just being great. Also, took a big step today to honour a dear friend in light of my depression dish out blog. I absolutely love my tattoo and will think fondly of him everyday I see it, given to fly.


Happy Weekend
xoxo e

It happened, somewhere between the cheese, butter and eggs section and the milk section at Joe Howe on a Tax-Free Student Tuesday night. My wandering eye caught sight of it, and from that point forward there was nothing I could do; I'd fallen prey to the Easter clearance section again. It was 8pm afterall, and I hadn't managed to scrounge up any supper. The Hello Kitty chocolate was long gone from the paper writing earlier that day and I had no choice but to grimace at the difference between the small Lindt bunny for $2.94 or the large SpongeBob Squarepants for $4.44. 

I guess you know which size won.

The prednisone cravings are continuing, though I am getting better at eating healthy snacks when hungry, minus the recent chocolate obsession. My moon face is still present, little puffy cheeks that are a reminder each day that I am getting better, though my outlook on life lately seems to say that enough. I have been feeling so much better and I feel I owe that in part to all of you for being so supportive, encouraging and sending messages or even walking up to me at The Mount (or telling my friends to tell me!) that you read my blog every day. There is no better part of my day than this and I am so glad to have such great positive people in my life.

My thoughts have been so focused on school work lately that often it's taking me a bit to get back to any of you who have thanked/supported me or have shared your own personal story with me. I promise I am reading and loving it all but bear with me until I get all of this school jazz off the chopping block! It was such a sense of accomplishment to finish writing a 16 page paper today. Putting the final polishes on this piece, which personally for me really encompassed all of what I've learned during my time in Public Relations classes, was so so so refreshing. There were points of this semester where I wasn't even sure I would pass, let alone be done of such a big assignment over 24 hours in advance of the due date! It is a real personal success for me and I have to say that I'm hoping the mark reflects that pride.

Though through all the hecticness of school, there are a few things on my mind:
1) Why do the makers of Gatorade insist on putting not one but two sealants? Don't they get that this girl is a little 'out of shape,' a little weak and just needs some electrolytes? 

2) I read this article, shared by a lovely Facebook friend, and think we can all relate to what this frustrated but loving mom talks about. I also think it is a good lesson about how often we hurt the ones we love the most by our actions. 
"I'm sorry I cried when you ate my lunch. The lunch I bought for both of us to feed my feelings. Because my feelings needed chicken nuggets, but apparently so did you. And I'm sorry I put you in time out when you made your plate do a little dance on the table. I’m sorry I didn’t kiss you when I put you down for nap, choosing instead to run away and lay in the guest room bed and just dwell in some silence."
http://www.scarymommy.com/i-wasnt-a-good-mom/


So to my dear little puppy Russell: I'm sorry I hid your blue ball because my anger really wanted to throw it out the window and you wouldn't stop nudging it's sloppy water soaked rubber on my feet. I'm sorry when you barked at the neighbours and I yelled at you and told you if you didn't stop I'd sell you on kijiji. I'm sorry that I put your home-made staircase from your Grampie Donnie into storage because I was sick of you whining at people passing by on our oh so busy and often down right scary neighbourhood. I hope you know that no matter what kind of terrible day I've had, I always come home happy to see you and your cute little wagging bum. I love you and your big brown eyes and your silky fur and when you lick me first thing in the morning. Some days are not always good, but you always make them a little better and I am the proudest furmama around.

3) Today I wear pink in light of the horrific tragedy that Rehtaeh Parsons faced. For any of you who have not heard her story, it is heartbreaking, but it deserves every bit of media attention to assure that these unjustified crimes stop occurring. 
http://thechronicleherald.ca/metro/1122506-school-administration-didn-t-probe-incident

So while on the topic of bullying and apologizing; I'm sorry to anyone who I have bullied in the past and the effects it may have had on you in a single or numerous days. I would name a few but I do not want to provide further embarrassment nor do I want to forget anyone who I should and could include. I hope that you will forgive me for any of the mean or hurtful things I will say and take a situation like Rehtaeh Parsons situation to know that we are all human, we all make mistakes, but our ability to try and mend the situation speaks more about character than our past. 


Don't be afraid to apologize, sometimes it speaks more about you than your actions.

Hoping you are all doing well, healthy and happy and making good changes in your lives.

xoxo e

Today I wanted to focus on something that is only starting to become the centre of attention; mental health and the effect it takes on anyone who is suffering from mental illness. I think it is absolutely fantastic that Bell has centred a campaign on mental health and feel like with Crohn's it is something that many people with my disease will experience during their fight against this illness. Not only that, I feel like many other people (like Crohn's sufferers) are fighting some form of mental illness in silence and it is important to expose the stigmas attached to mental health issues.

The picture above is taken from one of my favourite books that was made into a movie. Prozac Nation focuses on the nitty gritty of what it is like being depressed and how it can affect your entire life. I myself was officially diagnosed with clinical depression in 2008 and have fought an uphill battle trying to conquer it along with my Crohn's. I currently take medication to manage my depression as well as medication that aids me to sleep and quiet my many thoughts and worries I often have. 

I am positive that anyone with Crohn's experiences some form of depression at some point; feeling a loss of normalcy in life and having so many physical stressors to deal with. But I also know that many people who don't have Crohn's experience some form of mental illness at some point in their life and it is important for us to stop being silent and start being real. I am not ashamed of my depression, though somedays I feel like Crohn's, it has become a part of me and it is something I have to fight to keep at bay. This is a passage from Elizabeth Wurtzel's Prozac Nation that I feel sums up depression:

Although I was diagnosed officially in 2008, I felt like I'd been facing these feelings for years and having a psychologist actually utter the diagnosis was pure relief, like someone had finally said that it was okay to feel the way I did, that it was in fact normal (or I guess in my case not normal) but that there was a solution to the problem. I had a wonderful psychologist and have since stopped going regularly, though I highly highly encourage anyone who is facing problems, maybe not full blown depression but even struggling personally to get counselling. For anyone who is a student, there are usually counselling services that are free on campus, or many times via the mental health department of your hospital. It does help. Many times it takes a non biased person to hear you out to help change your perspective, often they suggest options for you that you hadn't even considered, and often, those suggestions can make a huge difference. 

Going on medication was not an easy decision, but it was the right one. After losing my grandmother in 2009 and losing a close friend shortly after, I knew I needed the stability that my brain could not provide me. What many forget is that depression is a chemical imbalance, it is not a choice to be sad. Losing a friend to depression/suicide feels like the most inhumane experience. It is simply overwhelming, debilitating and complicated. I wish that I would have been more open then about my feelings with him, in hopes that maybe it would have encouraged him to be proactive with his illness. I hope that from this point forward, maybe sharing will equal more awareness, so that any of you will be open when you are going through tough times. This one is for J, whom I miss and love each and every day. 

Luckily today has been a good day, and in recent weeks my emotions have been quite stable. This has allowed me to be more focused on my health and feel more proactive with taking care of my mental health. My ever present food belly is still large and in charge and I've managed to have some serious back pain, but the Crohn's symptoms are under control. It is my hope that by sharing this with you today, it may inspire you to be a little more open to your own mental and physical health. I am looking forward to having the summer to enjoy the sunshine and hopefully feel lots of good emotions. We are even hoping to plan a little getaway to Toronto for the weekend in August to see a Jays game. See below for my current "must have." Have I mentioned my serious Brett Lawrie crush? It is nice to look forward to something and I feel it might be my little graduation present to myself.

On a last note, I think it is important for you to all know that your family and friends can also make a huge impact on your mental health. Without my family's support with all my illnesses, I would certainly not be where I am today. They have picked me up off the floor time and time again, and I'm lucky that they have been as understanding as possible during the tough times. I'm so grateful for all of their support.

Happy Monday friends,

xoxo e

Well it is day 19, and Sunday, which means another needle bites the dust. I swear at this point I have magic hands and am getting exceptionally good at playing nurse and giving myself and Bobby our injections, though his poor grimaced face may have thought otherwise!

It was a lazy Sunday and it took me a while to figure out what my little rant for the day may be, and once I saw that little quote I thought that had to be it; taking personal days.

Personal days for me means, I'm not getting out of my GTL jammies, I refuse to shower until night, (or bath most days in my case) eat healthy food or take on any serious responsibilities. Typically I'd prefer to sleep and/or shop, online if at all possible. I used to have a hard time taking 'me' days and felt frustrated when I needed them. Bobby would tell me to simply take the day off, do nothing and enjoy the day; but because I didn't want it to happen in the first place, I never enjoyed it... duh. 

So since my journey with Crohn's began, I have slowly started accepting me days, and at this point, I actually find myself endorsing them. You broke up with your boyfriend? You need a me day. You want to procrastinate that 27 page paper? Take a me day. You hate your life at the moment and just don't want to face the world? You should take a me day. I've pretty much come up with every possible excuse I could and simply dismissed the day as a dedication to how great I don't feel. And I think you should too. What was hardest for me to initially accepting the time I needed for rest, was the fact that the rest of the world didn't stop with me when I stayed in bed. And clearly taking me days doesn't pay the bills or take care of the furkid, so it was hard to accept that sometimes things didn't get accomplished, the dishes didn't get done, and I was simply going to be a slob for a good 24 hour period. 

It's hard to accept them, but we all have them. I think taking time and dedicating it to whatever you want to do is the best way to refresh yourself mentally and physically. Sometimes by 3pm you even surprise yourself, like today; after a 3 hour nap I managed to go on a Walmart pilgrimage with Jodi, which can only mean one thing on this fine April weekend... $46.64 later and one Hello Kitty discounted Easter chocolate later, but you know what? I felt great after it. I even managed to ride the cart insisting she push me as fast as she could, had a nice bath, gave the needles and straightened my hair. All in all, I call that a successful personal day.

I'm looking forward to finishing this school week strong, and probably taking several more me days in the next month until it is time to start packing up our little abode for our big move home. The weekend was once again a success, having plenty of time feeling normal healthy and strong. My only minor Crohn's incident was having a pretty worried moment thinking I was having some serious bleeding, but then remembered that I don't digest red food colouring well and I had managed to woof down two red velvet cupcakes for breakfast... woops. Thus I defer, I'm starting to feel like myself again and have found so much more comfort since all of you have started this journey with me. For the rest of the night, I intend to snuggle in with my boys, enjoy my big brother and get lots of sleep. 

Here are a few pics of the highlights of my day. Remember to take time for yourself, especially when you need it, and also maybe when you think you don't. Happy Sunday xo

<<---- My sunny boy soaking up the afternoon rays

Yet another lovely Spring day and I am so happy to be spending it in the city relaxing and soaking up one last book-crammed weekend before the semester will yet again come to an end. 

We had an awesome evening with Bon & Susan and Russ enjoyed playing with his girlfriend Lily. See the pic of them relaxing on the chaise lounge in the sunshine this morning. It's been a fairly quiet day for us, filled with a nice 3 hour nap, yorkie cuddles, pizza pizza for supper and a little baking. I feel the sunshine has been much needed, once you get into February for a while it just becomes a fog. The sunshine is certainly helping pry my butt out of bed and get doing things. 

Alas, the Lord Disick shirt has arrived, and even came with a neat little mini clothes pin on it which I found cute/funny. Hoping that tonight stretches out before I have to get back to the grind tomorrow. Planning on popping over to my favorite twin's place to deliver a little treat. 

Feeling good today, tired but good. I've tapered down to 10mg of Prednisone and hoping that I'll continue to stay relatively healthy for the next few weeks. It is exciting that soon we'll be able to start packing and getting ready to head back to the lovely little island. My Crohn's has been fairly stable with a few minor belly bloats, but mostly I am just loving feeling relatively normal and being able to just feel good. The moon face as I'd mentioned in my previous post has evolved but I'm hoping it won't take too long for it to start disappearing in the next few weeks.

Also, I saw this post and thought I would like to share. "Babies and puppies are small.  So are dimes and Skittles.  You’re a fucking woman. Language affects our thinking whether we like it or not. Every time we tell ourselves, “I’ve gotta get down to a size whatever,” or “I’ve got to get rid of this gut,” we discount who we are RIGHT NOW. And fuck that shit. Who we are right now is okay. Instead of encouraging ourselves and other women to get smaller, we ought to be focusing on what will make us better. Better. Not smaller."
http://ladybud.com/fuck-diets/ I also think the notion of "Skinny Girl" martini's is absolutely ridiculous and feel that if you want a drink, have your damn drink and enjoy it. I do not however like the way the author approaches discussing about whether or not you genuinely do have a weight problem. Telling someone to get their ass in gear because they can't fit on an airplane seat is definitely not words of encouragement, but thus I defer, the point that I do enjoy is the fact that you should feel comfortable exactly the way you are, and enjoy who you are for what you are.

Here are some pictures from the weekend. Enjoy the sunshine xo

Well, I have officially made it to day 16/17 of The Prednisone Episode and have just taken my second day of 15mg of Prednisone. What a relief! The moon face has started to evolve and I'm feeling a little puffy though I was expecting this day to come and since this point I have been feeling more than okay with my little water retention chipmunk-cheeks.

Bobby has been shocked at the lack of acne I've had and I have to agree.. typically before I had horrible acne from this medication and struggled with layers of foundation; though today I am lucky and have not had any serious problems with it and thus on most days am simply enjoying wearing my sweatpants and makeup free face. 

Perhaps the worst side effect I'm experiencing right now is a bloated belly, and I honestly am considering making a little trip to the maternity store... I know, this sounds absolutely ridiculous, but I can't help but think that a nice little pair of cotton pants would be a key staple to my wardrobe and be convenient for these days when I legitimately look 8 months pregnant and huff in my bowl of KD for lunch. As you can tell I am nearly at the point where whatever goes, I'll do what it takes to feel comfy.

Looking forward to a semi quiet weekend right now. We are planning on visiting my cousin Bonnie and her lovely girlfriend Susan for supper this evening and spending the night there. I intend to whip up some home made chocolate lava cakes which can only mean I'll need those stretchy pants just a little bit more:) 

Today has been tiring, I feel like Friday is catch up day after a long week, but I met with a professor today (of a class I have been struggling to make) who reassured me that I can get my work done in the next few weeks and be able to succeed in the class. I am so grateful that so many professors are understanding as well as supportive of my situation and I am proud to say that I will be able to graduate on time (in October), something that at points of my Crohn's journey I wasn't sure I'd be able to do. I have worked hard for this point to come and I am anxious to start a new chapter of my life.

It seems like the time has been flying by. The euphoric effects of Prednisone take up a lot of thinking time, where I manage to plan lots of details of my life for the next 3 months and come up with some pretty legitimate brain child thoughts. Bobby and I have decided to have a date night next weekend to celebrate the end of our time here/my semester and are planning to go to Legally Blonde at Neptune and dinner at Da Maurizio which I am so so so so excited for! It feels like such a blessing when I am able to have 'normal' days right now where I can eat and not plan everything around when I am eating, where I am eating and how soon I can get home after eating. If it weren't for Prednisone's long term effects I'm quite confident I'd be happy to stay on a low-dose and think it may be an option I will try and discuss with my doctor once she is back in the country. 

I'm thinking of all of my peers right now who are scrambling to make this last week of classes count as well as get through (many of their final) exams before they are finished with their undergrad or are close to it. I intend to take today/tonight to myself for some relax time and get back to the grind tomorrow. 2 papers left. And then work for my making-up of the class i've been struggling with and we are on the homeward stretch.

Happy weekend sweet friends, I will take some pictures of my lovely lava creations, if they last long enough :)

xo

OH. ps. lord disick shirt has arrived... stay tuned for a happy photo of this quality purchase
P.S.S. check out this article a friend sent me.. love it! I've been mesmerized by Kurt Cobain for years now and just love this writers piece...http://thoughtcatalog.com/2011/my-love-affair-with-kurt-cobains-death/

Today is a belly bloat day, I'm talking, a no-pants wearing, gonna let it all hang out and wear my GTL jammies kind of day. Welcome to the life of a Crohnsie; or, sometimes, just an over-eaten hazy I-stuffed-myself day for some of you:) 

After my over-eager self decided to conquer the world, cooking, groceries and walking Russell yesterday, my hips are paying the price. I've spent the majority of the day curled up with my beloved heating pad, some Tylenol and a nice little night cap bath to ease up the joints. Long term Prednisone use can lead to hip complications like Avascular Necrosis or Osteonecrosis which can sometimes mean hip replacements before the ripe old age of maybe 50... so let's hope I may have just trucked it too hard going down Joseph Howe Drive and no further complications will arise!

I've continued my consistent hunger monster and have been indulging in grapes, bread, yogurt, ADL Cheese (which I excitedly buy in Halifax for 'special' occasions, excitedly claiming to Bobby that I've bought a surprise) and the odd Lindt bunny that's still laying around as a product of after-Easter specials. Each night to keep myself feeling sane I carefully plan out a neat little snack regiment, usually a bath, some homework and a good show. This keeps me occupied while Bobby works evenings and gives me something to focus on when I often feel too tired to do much else. 

I've been having serious cramping today, probably why I feel like I've got a 20 lb mass for a stomach. My 'healthy' prednisoned bowels are failing a bit today and I've had to make some serious mad dashes that have left me a little worse for wear and a little more tired than I'd expected. I try to nap during the day when I feel this way, but the Prednisone leaves me feeling a little bit like a menopausal mess, with lots of sweats while sleeping and I'm pretty sure Bobby is about to biff our classic 1995 fan out of our bedroom window if I don't stop freezing him out during the night. Russell takes advantage of it and curls right in to mom, further causing the discomfort, as he throws off some serious heat himself. We might need to invest in a king sized bed soon!

I've said it before, but I feel like I need to say it again... I am so so so so so overwhelmed by the amount of love, support and gratitude I have received from all of you... Hearing that I am an inspiration and brave is probably the kindest compliment anyone has ever given me, and I feel so lucky to share this journey with all of you... but the truth is is that I don't just write this blog for myself; yes I recognize that it is therapeutic and it creates awareness; but my ultimate truth is that YOU all inspire me. You give me your time to hear my story, listen to what I have to say and educate yourself on a disease that many people don't know about. Crohn's is one of the leading illnesses for young adults and many are diagnosed at a young age; it is important for us to know what the signs are in hopes that maybe you, your family member, a friend, or your OWN kids will be able to recognize the symptoms, have successful treatment, and hopefully one day find a cure. Bravo to you all for opening your mind, your heart and reserving judgement on an issue that is rarely discussed. I feel blessed to be able to make some sort of impact on YOUR life.

In an attempt to hopefully raise more funds for Crohn's research, I also encourage you all to book an upcoming date in your calendars... With the Spring weather coming, there is no better time to schedule a Saturday to indulge in delicious hot dogs for a good cause. On May 11th, M&M Meatshops will be hosting it's annual charity day BBQ where all proceeds and donations will be given to The Crohn's and Colitis Foundation of Canada. All you have to do is show up, and eat:) I myself will still be on Prednisone and am positive I can probably put at least 2 down :)

To find out more check out their website: http://www.charitybbqday.ca/home.asp

My Cranky Bowel
Living With Crohn's... what is it and how it affects me.
<<<---- A healthy intestine vs an ulcerated intestine (Crohn's)

Since I began this journey, I've focused a lot on how I've been responding to treatments, but haven't fully explained exactly what Crohn's is, and how it affects my daily life. So I thought I should sum up the last couple of years and how I've gotten to this point. It is important to explain what my Crohn's is like, as the disease has such a range of complexities and severity that many cases are different for each individual sufferer, as well as many of the treatments are different; one thing about Crohn's globally however, is that there is no existing cure. It is my hope that treatments will become more effective with less serious side effects so that living with Crohn's does not have to be as humiliating and debilitating as it often is.

Crohn's disease is an immune disease that can affect anywheres of the GI tract from the mouth to the junktrunk. Mine happens to be in a common place right where my large intestine and small intestine meet. For whatever reason, my immune system believes that there is unhealthy tissue in my intestines, therefore it begins attacking (what is essentially healthy) tissue. It begins breaking down the lining of the intestine, causing ulcers, bleeding and pain. Crohn's disease is similar to that of Arthritis except that Arthritis believes that joint tissues has unhealthy tissue and begins breaking them down, one problem with an immune system that affects different areas of the body. Because there is no known 'cause' as to why this happens or how to cure it, the solution to treat the intestine is to suppress the immune system entirely. This means that I have a significantly higher chance of contracting a cold, flu or can not have any type of 'live' vaccine.. because my immune system is lowered by the medications I take, I'm more susceptible to picking up any bug. Prednisone, Humira (the injection I take) and Immuran (another common Crohn's med) are all ways to eliminate your immune system from breaking down the lining of the bowels.

My journey started after I graduated high school. I began having significant discomfort in my stomach that always seemed to be worse after eating. I had toyed with the idea that I may be lactose intolerant or have some kind of dairy allergy, but as time went on it seemed that no matter what I ate, I'd be in extreme discomfort and pain. Breakfast was the only mean I seemed to be able to digest and after being exhausted each day from the pain or bathroom runs, I knew something wasn't quite right. The difficult part of Crohn's was that at first I thought I may just be losing it... seeing several doctors who thought I simply had acid reflux or a touchy bowel made me feel isolated; like my concerns weren't being taken seriously and I was dramifying the situation. From those first attacks, it took over a year until I was officially diagnosed. I had been put on stomach relaxers, acid reducers and different diets; none of which had been very effective. I even had a gastro procedure done by a surgeon who proclaimed that because I was an otherwise healthy 17 year old, it was unlikely he would find anything; and he didn't... because he didn't look in the right end. (Bad humor. I know.)

After seeing a GI specialist, I was immediately booked for a colonoscopy. The procedure isn't the most glamorous experience but within 20 minutes of being in the recovery area, my doctor finally had an answer: it wasn't pretty but it was an answer and it was Crohn's disease. I returned home feeling like I'd finally pacified the situation and could begin to move forward with treatment, whatever that was. I felt optimistic about my diagnosis, I have a first cousin who has the disease and knew she had success with medication and life style changes, I felt like I could move on. Within a week of returning to Halifax, I began experiencing bleeding from my bowels and extreme pain. After a week I had to return to see my doctor for a follow up and to plan treatment but after she saw how ill I was at that point, she immediately admitted me to the hospital for my first stay. I spent 9 days at the PCH where I was given steroids via IV, morphine for pain and iron fusions for the loss of blood. At that point I'd hoped I'd be in the clear. Going to pick up the steroids (liquid prednisone) at the pharmacy after I was discharged was overwhelming. I left with something like 20 bottles of liquid prednisone and having that much medication opened my eyes to the fact that life would certainly no longer be the same from that point forward.

Because many Crohn's medications are high cost drugs, it is only possible to receive the highest level (or potency) of medication after you have failed all the initial ones. Until you have failed on lower medications, the government or your insurance plan typically will not cover any type of injections. The retail cost of one of my injections I currently take is approximately $1000.00 per injection (lasts for two weeks.) At this point in my recovery I was still on the initial medications, hoping that they would end my Crohn's flares.

In the summer of 2011 I began having a lot of bleeding from my bowels. I was intending to go to the Miss Canada pageant in a few days and the last thing I needed was to be doped up on Prednisone trying to navigate around the GTA. I knew I had to be checked out and hoped that within a couple of days I'd be good as new and able to fly. After a couple of days with little changes in bleeding, I had to postpone my flight. I figured if I had a couple of more days on the IV Prednisone I'd be ready to go... unfortunately on Canada day 2011, I passed out from lack of hemoglobin in my blood. (Typical level is around 120, mine was at 55). After another 'trip' to the bathroom, I began losing my vision and blacking out. Luckily I was able to reach the emergency buzzer and just as I lost consciousness, a nurse had come to the door. When I woke up, I had been put back into my hospital bed and the nurses were buzzing around me, poking for another blood vessel to start a second IV as well as checking my hemoglobin levels. I asked where I was, and asked for my parents and Bobby to be called, even though it was only 5am. By the time they'd arrived, I'd been started on the first of five blood transfusions I'd receive over the next day. I have never in my life been more grateful for those of you who get out and donate each year. I also felt extremely privileged to know that a dear friend Ashly Bickford who is an avid donator was in fact my blood sista (duped by me of course) with the same blood type. 

Recovery from that point on was up and down, in the wake of the passing out from lack of hemoglobin, I saw my life extremely different. My mom took my pup to the door every night where Bobby would wheel me down with my two IV's in my wheel chair to see him, it broke my heart every single time he'd go to leave and I'd cry as he looked back trying to figure out why mom wasn't coming home with him. I spent many nights curled up in my hospital bed watching shows with Bobby, or having him wheel me down to the end of the corridor to watch the Canada Day fireworks. It is moments like that where you learn who your soulmate really is. On Canada day I was also rushed in for an emerg colonoscopy after I'd had transfusions to try and locate the source of the bleeding and had it not stopped soon, I would be taken to Moncton to have a surgery to stop the bleeding. My mom spent every night with me from that point on, in case I had to be taken. We read together, cried together and laughed together and I am so thankful for her friendship and company during those days. Luckily the bleeding seized up and I was free to go home after about 12 days in the hospital.

From this point on, I was started on the high level medication; I was given the option to take Humira (a self injectable medication from home) or Remicade (an IV infused medication given every 6 weeks at a hospital). I chose to do Humira for convenience and began receiving the needles. The needles are not enjoyable; the medication burns as it is being injected and when you first began it you receive a 'loading dose' which is 4 needles given in the stomach one after another. Once again, it was an overwhelming step, but thus I have continued with it. I gave my needles myself for a short period, but was getting frustrated because of the anxiousness, knowing how much it would hurt. After returning to Halifax for school, myself (and Bobby as he takes the same Crohn's medication) had a nurse come to our apartment every 2 weeks to give us our injection. She is a godsend and I am so thankful we had her during those times. I am now back to giving myself my own needle and giving Bobby his and feel much more comfortable with the process. (I still get a little freaked I'll admit, but it feels like such a relief to have it done).

Crohn's for me is difficult; it is unsettling; especially at times where I feel like I don't get to live like a normal 21 year old. While many of my friends are partying, eating whatever and having a busy social life; my life seems so different. I spend a lot of time home in bed, because my body needs a lot more rest than many people I know. Because I have chronic diarrhea, my body does not absorb enough nutrients through my intestine, so it is often difficult to get through the day without napping or laying down for a period of time. I eat a fairly bland diet, low in fibre as to avoid any further bathroom issues, lots of breads and carbs; mostly any foods that are white or yellow. For those of you who know me know that this is no problem because im a rice/pasta carb maniac anyways! It is difficult though at times to plan travelling, a meal or anything else where I may not be able to get to a bathroom should my bowel get a little cranky. Many say that Crohn's is humiliating; and i agree; though maybe with habit or maturity I have realized the inalienable truth; we all shit, I just happen to make a lot more mad dashes than most of you. I try to keep drinking to a minimum, not only because it doesn't really bother me otherwise, but also because it is one less irritant to put into my system and that may mean a healthier day tomorrow for me. I thrive on wild games nights at home, Netflix and spending time with my pooch. These are the changes I had made in my life and I feel lucky that I have so much support to do so.

I have days where I am sick and frustrated and cry myself to sleep and I have days where I feel like I AM Crohn's disease; though these are the days I must remind myself not to let it define me. There are days Bobby picks me up off the floor a mess and days where I call home pleading for reassurance. These things help me; though they are the sad truth that sometimes with a chronic illness you also feel like a bother to many. 

There are days where I feel elated, normal and happy and where I am so thankful that the sun is shining, I can cook myself supper and some days where I can take Russell for a walk (like today!) These are the days I treasure, hold out for and try and be as grateful for as possible. These days often make the bad ones worth the pressure and pain and I know ultimately they will come.

In a perfect world, treatments would be more available and a cure would be closer. I am lucky that I am even able to receive hte medications I do and hope that by talking about Crohn's it will equal awareness and hopefully one day enough awareness will equal a cure. I will continue to fight for a Crohn's free life, a healthy future and the elimination of my cranky bowel.