Decisions...Decisions...

"I thought maybe you'd had your fill" "I just can't give it up. I've tried"

Hey everyone. Long time no post. I've had less than motivation to share witty understandings of my illness and life on the internet up until now.

I've had a lot of time to think. Ever since I could remember I wanted to be a doctor. As a young child (maybe between 4 and 6) I would deny it. Saying "Ewww sick people" but it couldn't stop me from spending hours examining my mother's Emergency New Mom's medical handbook (complete with pictures of course). I had memorized childhood rashes, fever symptoms and even birthing positions before I even knew how conception was possible. I did think it was gross. And, I was scared. But I couldn't stop learning about it. 

Years later, post Crohn's diagnosis, when the internet was accessible, I found myself googling, researching and instantly internally logging cases, conditions, symptoms and treatments of diseases that appeared on my favourite TV shows like Grey's Anatomy and House MD. It wasn't that I remembered, it was that I couldn't forget. All my medical knowledge I had stored came pouring out when a friend or acquaintance mentioned a symptom or complaint. "I have a pinched nerve and don't know what to do" a friend would say. "Have you tried chiropractory, massage, acupuncture, or GABApentin?" i would inquire before I could stop myself. Before I was over halfway done my undergrad people would assume I was in medschool. Not to mention the teachings I gave to med students when I was a patient in my young teens they would drop their jaws and exclaim that I should be in their class or surpass them in the professional medical field. 

I don't know if this gave me false confidence, or if I just have the right type of brain. 

But it took me almost a year in hospital, being subjected to torturous test and procedures, surgeries and medications and most of all pain. Emotional and physical to realize that I can't give up this dream. I at least have to try.

All of you should try. Don't give up your dreams because of your illness, or the false belief that you don't have the right qualifications, training, education, or even brain type to pursue what will make you happy.

Don't risk living your life with the regret of knowing you never even tried. 

Love you all. Stay healthy and happy. 

My Medical Therapy Report Card

Medical Therapy	Grade	Comments
Immuran	D	·          Student consistently took the medication, however did not seem to benefit much from it ·        Student complained of hair loss ·         She could improve by being increasingly patient waiting for results that will never come
Prednisone	B-	·       Student was successful in eating her parents out of house and home ·       She successfully stayed up very late and lived on little sleep ·       Student showed fantastic improvement in energy levels and bowel symptoms ·       However, due to mania induced by this medication the student was an absolute nutter
Cirpro/Flagyl	D	·       Student’s body failed to meet the criteria of success on this therapy ·       In this area she showed little improvement in her bowels and energy levels ·       We advise she drop this course.
Naso-Gastric Tube Feeding	A+	·       Student was successful in achieving weight gain ·       She also successfully completed a musical while on this therapy, singing despite the tube in her throat ·       For this we congratulate her.
Salofalk	C-	·       Student failed to show much improvement ·       Our standards are that the student improves and takes every dose of medication ·       The student said that the huge number of horse pills were “too difficult” to keep up with ·       Maybe you as a parent can talk to her
Remmicade	A	·       Student showed excellent performance with this treatment. ·         Bowels and energy levels became normalized and on par with her peers ·       She is no longer behind her class in this section
Humira	A-	·       Student showed a continuation of already established strengths. ·       Keep up the good work.
FK-506	A-	·       Student maintained already decent status. ·       However, our concern is that if not every assignment is completed, student will fall behind after only one.

My Crazy Roommates

"They're crazy. All of them!"

Roommates are difficult to live with when you spend months planning, deciding and agreeing with when you are about to live with some of your best and closest friends. Getting strangers as roommates is QUITE the experience. Let me fill you in on some of the characters I had to share a living space with over the past month.

Nervous Nelly - This girl was a few years older than me, the only other patient under 60. She was only there for one night. They wheeled her in in the evening, and she got very upset that she wasn't in a private room. I mean, come on, you're there for ONE NIGHT. The next day when doctors removed her stitches she nearly had an anxiety attack. It was exhausting to be around someone who was so on edge.

Bedpan - This woman had been in the hospital since October. Like forever. I dont know what she was in for, but it wasn't good and she was on 5 days bed rest. Which meant she used the bed pan. Ew. One time she had a phone conversation WHILE TAKING A DUMP ON THE BED PAN.....I don't understand why these people exist...

Dilaudid Queen - This woman was small and spry and a smoker and she looooooved her dilaudid. She took more meds in her week after surgery than I did in my 21 days. She would request a 4mg dilaudid and then another 2mg breakthrough tab less than an hour later. Not good. 2mg was what they would give me the whole time, even after my surgery. Towards the end she would request pain meds, nap, then go for a long walk...someone in that much pain wouldn't be able to walk much. Just sayin'.

The Whale - This woman had a weight problem. I feel bad nicknaming her the whale, but I couldn't come up with something that wasn't mean at all. She had a stomach stapling surgery, and for her sake, thank god. Her weight was obviously at a very risky level. She had to turn sideways to get in the bathroom, and that was all the walking she did. I felt bad for her actually because I would pass my evenings eating chips and soda crackers with margarine while she was only allowed broths. Ouch. I love food. I hope things go well for her. 

The Grinch - This woman was in the bed accross from me who sat there looking sour all hours of the day. She won the curtain off with me. This basically means we had a stand off. She won. I drew my curtain, sacrificing space for minimal privacy. I never forgave her for that.  

Nurse Ratchet - Well, well, well, Nurse Ratchet. What a character. This woman was a retired nurse, which is essentially all of the nurses worst nightmare. I once heard an experienced nurse use the phrase that nurses "eat their young". This is what Nurse Ratchet did. Every little thing that a nurse would do she would nitpick apart, criticize and complain about. She also made them remove her catheter right after her surgery, despite the fact that she had a bladder condition. She used a commode. She would hop on the commode and ride that thing like a motor cycle. It was traumatizing. She was just so awful to the nurses. They didn't deserve it. 

The Forgetful Commode - There was this little old lady, literally, she was 90, who was in the bed next to me for some part of it. The poor dear had Alzheimer's. But oh my goodness that sure made things so irritating. She would wake up in the middle of the night and pull up the curtain and ask me where she was. She also never called the nurses when her IV beeped off, so eventually I just started doing it for her. It was sad that she was losing her memory, but it made being her roommate a job in and of itself. 

Mrs. Cranky - Mrs. Cranky. Where do I even begin? This lady was probably in her 80s. I don't think she had a very major surgery done, but boy oh boy she made a big deal of it. She wasn't losing her memory, but she was losing her hearing and her marbles. She was almost completely deaf, which meant that all the staff had to basically yell at her so that she could hear them, which meant some very abrupt wakeup calls for me in the middle of the night. Mrs. Cranky would sift in and out of sleep, randomly yelling in between her snoozes. One time, when my best friend was visiting me, she woke up, yelled "Debbie, I thought we were friends!" and promptly went back to sleep. Let me put it this way, there was no Debbie. At least not around us. Mrs. Cranky would refuse to use her incentive spirometer. She also refused to get up and even attempt to walk, stand, or even sit in a chair. She also abused the nurses. Playing mind games like yelling at them saying "I am requesting a transfer" or "Why are you punishing me? What did I ever do to you?" When they did nothing but cater to her every whim. Mrs. Cranky also had problems with incontinence. . . big problems. I'm talking 3 times in 2 hours in the middle of the night. Kill me. That mean 3 bed changes and a lot of yelling. Mrs. Cranky eventually ended up getting moved to a private room because of all the grief she caused. Lucky bitch. 

Needless to say, I never want to share my living space with anyone, ever again. 

First World Problems in the Hospital

"This place is insane"

I've spent 21 out of the past 30 days in hospital. No joke. It hasn't been a fun time. There has been a lot of pain, a few scary moments, a lot of visits from family, a few laughs, and a lot of healing. But today I bring a rant. 

I'm proud to be Canadian, one of my favourite things being a spoonie and Canadian is our health care system. It's free. Wonderfully free. Of those 21 days I spent in hospital, I had a major surgery, multiple scans, CTs, procedures etc and it didn't cost me a dime. But it's not without flaw.

The hospital I stayed in is disgusting. To the point where I questioned it thinking "Is this really Canada? Really?" The hospital I stayed in was built right after the Second World War, dating it enormously. The building is so old you can't even drink the water from the taps because the pipes contaminate the water. Ew. The bathrooms are so small there is hardly enough space for a person of my stature (5'2 and barely 120 pounds) and an IV pole, let alone a bigger person, and IV and a crisis! There was no air conditioning either, and in August, holy crap that was awful. 

I stayed in a ward, which means a room that has 4 beds in it. My roommates were seldom less than 45 years older than me. That sucked. Having roommates at all was awful. The room was cramped and crowded, there was absolutely no privacy, as only thin curtains divided the space. If I was in pain, my roommates heard it. If they were in pain, I heard it. Night time was a nightmare because not only my IV pump would wake me up, but so would the other three womens'. 

The other thing that really got me was how sick the other patients were and how little was being done to protect us from each other. The other patient, I don't know if it was the stubbornness that came with old age, depression due to illness, or what, but they were SO SICK. Like, couldn't get up to use the bathroom sick. I was introduced to the concept of bedpans and commodes over this hospitalization. EW. When you hear someone literally beside you pooping and peeing you get freaked out. That's disgusting, and dirty. And sometimes they wouldn't ask the nurse to clean it for hours and it would reek.

A lot of the patients were very uncompliant as well. They would refuse to try and get up and walk to aid their recovery, or use their incentive spirometers to regain full use of their lungs after surgery. They would complain about catheters, IVs, food, lack of food, nurse's attitudes, nurse's organization and methods, doctor's schedules, and just about anything else they could think of. 

I can't believe this is acceptable hospital procedure in a country as nice as Canada. I know it seems selfish and naive, but good lord no hospital should be built ever again that without only private rooms. Honestly. it is near impossible to get a private or a semi private room in that hospital because there are only 1 or 2, per unit even though they don't really take up that much more space. 

The part that enrages me the most was that a private room was given to a particularly horrible roommate of mine because she was so awful. I tell no lies. She was just so awful to the nurses and the other patients, so disruptive to our sleep and recovery that she was moved into a private room, despite the fact that she was probably the most uncompliant patient ever. Lucky bitch. 

The truth is, I shouldn't complain, I was treated very well, the nurses were amazing and totally run off their feet. I'm getting better. But let me add one FINAL insult to injury: there was no wifi. 

Where Have I Been?

"I'm going to the grocery store, can I get you anything?" "Lays Plain Baked Chips please!"

Well, well, well, look who decided to keep blogging? I bet you all thought I had given up. Quite the contrary. 

I actually went to camp for a week (NOT bringing my laptop to that, it's my time away from real life) and then had surgery. I'll get into the details of surgery when I feel ready. It's still pretty fresh (less than 12 days ago!) and I'm still adjusting.

The good news is that I'm alive and well and back to stay.

I am going to use this post as basically a splatter of word vomit to gush about my current obsessions. I am taking a semester off of university to recover so I've developed some interests to keep myself occupied. They are, as follows:

1. Home Decor

• A friend of mine who also blogs runs a home renovation/decor company (see her blog here!) and I was talking to her about it and I'm hooked. I have no less than 5 home decor magazines on the go right now, follow a few twitter accounts, follow a few blogs, I'm a woman obsessed. My parents agreed to let me design the renovation for their ensuite bathroom and I'm thrilled!

2. Lays Baked Plain Chips

• They're not flavourful. They're very plain, but for some reason I love them. I always have. I first tried them alongside a Subway sandwich but now I can't stop. They're slightly salty, and easy to digest. The perfect Crohnie snack. 

Cuties like this are so fun!

              3. Claw Clips

• I don't know why I am 20 years into figuring out this, but claw clips don't leave an elastic bump in your hair....AND they create the illusion of having more hair, which for me isn't a bad thing. Mine is so thin.

                  4. Pinterest

• When I first got my account, I didn't think much of it. I got it to share ideas with a photographer for a shoot that I was doing makeup for. But recently, with my inability to do whatever I want, I've been pinning up a storm of dream boards, plans and other thrills for the future. 

I'm back now with vengeance and I WILL be posting more regularly. 

Stay strong beauties!

The New Magazine

It's no secret that the experience of pooping is, well, an experience. 

A lot of people need some entertainment while they wait to drop off the kids to the pool. In the olden days this meant reading a book or magazine, sometimes doing a crossword if you really needed some stimulation. Or, at worst, the back of shampoo bottles and toothpaste tubes. And then came the birth of smartphones. 

Pooping was changed forever. 

With apps, texting, internet and ebooks, taking a dump has never been so fun. 

With modern technology I think some people take it a little too far....I know people the being their entire laptop into the loo to watch a movie while they drop a deuce. That's just a bit unnecessary. At least in my opinion. 

However, there are few things worse for a hard core Crohnie than settling into the bathroom for a good 20 minute session and realizing I forgot my iPhone. I actually feel devastated. (I'm a bit of a drama queen). 

With the world of apps, sources of entertainment when you need to go number two are infinite. However, as a person with Crohn's, my apps need to have a couple qualities to pass the bathroom test. 

It has to be interesting enough to be able to distract me from my pain, and has to be quiet (for public bathrooms) but it can't be overly interactive just in case I'm in too much pain to move my fingers for a few moments. 

Here are my favourite apps for the lav:

1. Twitter - it's my go to. I check in to see what's going on with other people with chronic illnesses. Misery lives company. (Follow me on twitter: @chronicbeauty12)

2. Imgur - it's simply images. You scroll through and there are memes, posters, jokes, cute animals, amazing photography, really anything. It's AMAZING to distract from the pain. 

3. Solitaire - this one is great because you don't need service or wifi to play. 

4. Wanelo - this one is really girlie. It's basically a bunch of products and the websites that sell them. Not the most exciting. But it really helps me, when I can focus on something pretty. 

5. Places I've Pooped - this hilarious app basically drops a virtual pin on a map documenting all the places you've dropped a dookie. It's fun to go back and look at all of the places where I've left a stink. (My map is crowded with pins!) 

I LOVE Toilet Humour

"I am better at describing the intricacies of poo than wine" 

No sense in wasting TP when it's just a Pee ;)

I can credit my sense of humour with keeping me from sliding into huge depressions at every flare up of my Crohn's disease.

There is a VERY special place in my heart for toilet humour, and basically NOTHING can gross me out. 

This is a musical number performed by the hit show Scrubs, that I think every person with IBD should see, and probably memorize. 

Man is it catchy.

Sit back, enjoy and listen to my Crohnie theme song: Everything Comes Down to Poo

Lub de Dub

"Listen to the heart, you will hear it. Lub de dub. Lub de dub."

As a particularly talkative, understanding and articulate patient I was often guilted into agreeing to do medical student teachings as an inpatient at my children's hospital. It was a teaching student and I was a good teacher, so I always felt obligated even though I felt awful. 

This one time, I got roped into doing a two hour long basic physical teaching session to a bunch of new med students. It was awful. I was really sick and I didn't know it was going to be two hours long when I agreed to it. 

When they walked in, they were four, young, male, extremely attractive med students. McDreamy McSteamy McHottie and McSexdream. All of a sudden it wasn't SOOOO bad. I was 13, I wasn't going to pass up two hours staring at some hotties instead of my deadpan, way outdated hospital wallpaper. 

Even with their hotness, after about an hour and a half of listening to one of my gastroenterologists (Crohn's doctors) talk to the students and have them poke and prod at me I was almost at my wits end. 

There is something you have to remember about doing med school teachings. They don't have experience. They have to really dig to feel anything because they don't know what anything feels like. They were supposed to be feeling my poor, inflamed, sore colon, it felt more like they were digging for my kidneys which reside almost in your back.... OUCH.

My GI started explaining to the four, McMedStudents about how the heart sounds. My GI was from central asia. I'm not sure if it was India or Pakistan or somewhere around there, I couldn't tell (forgive me), but in order to explain the sound of the heart beat he began saying "Lub de dub, lub de dub. you will hear the lub de dub, lub de dub". 

I was sick and tired so restraining my giggles wasn't tooo difficult, but the med students didn't fair as well. I saw the corners of their mouth being tugged towards their ears as their will power was tested. 

 Then, IT happened.

Something happened I never thought I would ever witness in my life. Something I have never witnessed since.

Mid sentence, my GI reached behind himself, and ungracefully picked a wedgie through his white lab coat!!! He never even stopped talking!!!

My mouth dropped. 

I looked around to see if anyone else had just experienced what I had. 

They had. Only two. My mother. And one poor, med student. Lets call him McScarred-for-Life now.

I couldn't handle it. I broke. I couldn't stifle my laughter. Neither could my mom. Neither could McScarred-for-Life. 

I crammed my blanket into my mouth, turned my head in laughing shame. I'm going to hell for sure. 

It was one of the most hilarious moments I have ever experienced in my life as a Professional Sick Person.

Tell me yours!

My War With The Mirror

"I feel fat." "Fat is not a feeling, what do you really feel?"

Jr high, middle school, that little waste land between elementary school and high school, what ever you want to call it, is a rough time for just about everyone. Especially physically. It's the years of bad acne, braces, growth spurts, puberty, and really bad smells. Eugh. I never want to go back there. Thank god it's over.

                        Jr. High......

Those years feel like your body is totally out of control even for someone without a chronic illness. But for me, they were horrendous. Not only was I going through all of the normal changes that young teens do, my body was also being morphed by both my disease and my medications. 

When I started Jr. high at age 12, I had been really sick, so I came in weighing a paltry 90lbs. I was put on prednisone, and before Christmas I was up to (a much healthier) 115lbs. Still extremely small, butting was such a drastic change, I was devastated. This was the first of many rapid weight fluxuations I would fa over the next 8 years. 

I had no way to cope, no strategies to deal with my anguish, and I began to develop a very poor body image. 

My self-esteem was ok. I was able to recognize qualities in myself, like my ability to make people laugh, my intelligence, my communication skills, that made me realize I was a worth while person, I just hated the shell I was living in. 

At 12 years old I had stretch marks, love handles, acne, braces, thin hair, puffy cheeks, and I hated it all. I don't know if I've ever fully recovered from that initial blow to my relationship with my body. On top of it all, my body was weak from illness and wasn't recovering. I felt so betrayed. My body wasn't beautiful, (At least I didn't believe it was), it couldn't do anything wonderful, like push-ups. Or the splits, or run, or jump, or anything like that, it didn't even work well as a body as basic function. 

No wonder I had issues.

It's taken a lot of time to build up the love for my body. I really have to credit dance (as seen in this post) for renewing my faith in my body's ability to do something admirable, makeup, clothing, and my boyfriend for helping me believe that I am beautiful and desirable, and my unwavering hope for remission, that someday, my body will be normal. 

Ignore this mess below. My iPad wouldn't let me delete it. It was a failed link attempt. 

► 1:01► 1:01 www.youtube.com/watch?v=jFbvq8BYEnI

► 1:01► 1:01

A Puppy a Day Keeps My Crohn's at Bay

"I love dogs. And kitties. And llamas. Actually all animals."

From the time that I was born until I was about 8 years old my family had a valley bulldog. He was kind of mean looking, but honestly acted more like a cat. He just liked to lay in the sun. I feel deep down in the heart of my brain that he is the reason for my love and lack of fear, of animals. 

Animals play a really special part in my life. I personally believe that animals have an innate ability to recognize when someone needs them. When I'm sick, I swear that animals zoom towards me. Not so much cats, although my cat does tend to nap with me when I'm sick. 

               Llama animal therapy! 

But dogs, goats, sheep, and other larger mammals always seem to gravitate towards me. 

I don't have my own pet now due to living in university housing, so I shamelessly mooch off other people's furry children. Mostly dogs. 

I have a couple that I visit regularly, and it's kind of embarrassing but their pups won't leave my side while I'm there. I don't even feed them treats or anything. They just never leave me, and I love it. 

I find animals bring a sense of calm, contentness into me. I relax and smile and pet. It slows me down and makes me feel so much better. It's just like that scene from 50/50 when the main character gets a greyhound named Skeletor.

My top picks for dogs that I want:

Grey hound

Great Dane

Standard poodle

Makeup Is My Armour

This morning, my sister shaved her head. That's right. All of it. It was past her shoulder and then bam, it was gone. 

Nope it wasn't an act of charity, she wasn't donating her hair. She also wasn't trying to beat the process of chemo. Her hair was just so damaged from a couple years of a torturous routine of bleaching, dying, colouring and heat styling that it was simply ruined. She had to start fm scratch. 

Ok Jack, what does this have to do with your blog? - You all must be thinking. 

I assure you it does.

After my sissy cut off all her hair she exclaimed that she looked butch and felt naked. I don't blame her.  My sister is beautiful, but she definitely has a strong Dutch look to her, which isn't as daintily feminine as other hereditary lines. 

I immediately came to her rescue by telling her that by wearing long earrings, feminine clothes and flawless makeup that no one would question her gender identity. She agreed and felt better.

I got thinking, I use makeup in the same manor to my Crohn's. I use it like an armour to protect myself from the world. I might take up to an hour applying my makeup just to hangout and watch a movie with my boyfriend or go out for a drink and wings with a friend. Seems a bit over kill right?

Wrong.

My makeup is a way for me to feel extra beautiful. I can feel beautiful without it no doubt, but the process of applying it is like treating myself to a spa, then going out knowing I'm looking my best shifts my brain focus from being ashamed of my illness or just feeling rotten, to having a spark in my eye that makes confident enough to order a girlie drink that I wouldn't usually (I'm a rum and coke girl).

My makeup is an armour against my Crohn's. For me it says: you can take a lot away from my life but you CANNOT take away my need to feel beautiful. 

Its hard to feel beautiful when you're running to the bathroom 10x a day, or have doctors shoving cameras up your bum, or have side effects from medication that alter your appearance without your consent. But makeup is always there for me for a little self esteem boost. 

There is comfort in feeling beautiful in your own skin, whether that takes makeup, clothes, jewelry, sports, dance, or anything else.

                        Bald is Beautiful!

I hope you all feel beautiful today!

Dance Yourself Clean

"How can you get through a dance class when you're this sick?" "It's exhausting and painful, but it makes me so happy that I don't care"

Ok, I'm not this good, but you get my point.

I've danced on and off my whole life. I've done ballet, hip hop, jazz, belly dancing, folk, tap, musical theatre and burlesque. 

Dancing has been a saviour for me. Not only has it kept me in shape (sort of) it has been like therapy. 

Nothing can cheer me up like a ballet class. It's impossible for me to feel sorry for myself or frustrated with my body and disease, when I'm dancing. Even when I'm trying to nail that double pirouette or hold an arabesque for just a few more seconds, it consumes me in a way that doesn't leave room for me to be thinking about my disease. 

Trying to hold a balancing pose is like meditation. I've can't say how many times people have recommended I try meditation to help my Crohn's. Dance is better meditation than me trying to sit on a cushion and say Om. But when I try to balance in fifth position, or in an arabesque, my mind is blanker than a fresh chalkboard.

 Despite being quite ill, I'll drag my sorry butt into the studio or rehearsal space and forget my woes for a while. 

I have done this consistently for the past 8 years and it's benefitted me more than any other form of exercise or stress relief. 

When I dance I hardly feel pain, I don't feel sad. It's a euphoria that dancers understand. It's my favourite thing to do. And it helps me cope with my illness in a way that is unexplainable. 

I wish that everyone could experience dance the same way I do, it would probably help a lot.