Who are you?

"In this response I want you to answer the question: Who are you?"

That, my friends was the assignment my ancient history teacher gave us in our first class. It wasn't the first class I had of high school, (unfortunately), because that would have made for the most perfect cliche'd high school moment. However, it was the first class of my second semester of high school, just when I thought I had begun to figure it all out. 

I didn't know how to answer it. I knew my peers would answer by saying things like "My name is So and so, I am x years old, I'm in grade whatever." The bolder ones may have talked about their personal lives: "My parents got divorced when I was x year old....." etc. I remember looking around my class room and noting that everyone was hunched over their binders, scribbling away on their looseleaf. I wondered if they thought that the more they said, the better. That way at least if they didn't know who they were, they gave my teacher enough clues that he could figure it out.

I remember writing something, that I thought was profound. Give me a break, I was 15. But I remember writing: "I don't know who I am, I think that will be for you to decide as I get you get to know me, I could tell you things that I do, titles I hold, even perhaps what I am, but, I do not know who I am. I hope I will soon discover it".

It has been almost 6 years since I wrote that response. I remember what I answered, distinctly, but I do not know what grade I received. I don't think I kept it. 

It has been almost 6 years since I wrote that response and I think I know even less who I am then when I was 15. 

However, I am loving the journey.

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. 

"Are you hungry?" "No"

In December I had an encounter with the rarely found, but very effective zinc deficiency. This caused me to have a raccoon like rash around my eyes, nausea, altered taste perception, and above all else, reduced appetite. Because of this I was brought in and hospitalized, due to my nutrition markers being so low. In the hospital, alongside nocturnal tube feeding, I was encouraged to eat, well, as much as I could. Awesome right? Nah. I was disgusted by food. I’m not saying I wasn’t hungry, I’m saying I was REPULSED by food. The thought of it made me queasy, the sight made me gag and I just couldn’t eat. The hospital food, did NOT make it any easier. Here is the menu that I would typically follow in the hospital, and let me make it clear, that in terms of choice and selection, I had one of the best available.

Breakfast: Breakfast would consist of a mini container of cheerios (exactly 80 calories worth) a half a cup of soymilk, half a cup of diced, canned peaches in water (not syrup) and one sugar packet on my cereal.

Lunch: I somehow managed to get myself assigned the same diet as the patients that were in the rehab hospital, so my lunch options were usually pretty good. I guess if you’re in rehab, you’re in for a while, so you get better lunches. Go figure. My lunch usually consisted of a fruit plate, which I got solely for the grapes, French fries (Mmm! They were a lot like the fries from KFC), a cup of soup that was usually vegetable or chicken noodle and a sort of vegetable that varied from carrot sticks to coleslaw. Lunch overall was pretty decent and I can’t complain about it.

Dinner: Dinner. Oh dinner, how is possible for a meal to go so wrong? The meat options were always terrible, beyond terrible, so I usually opted for the sandwich provided it wasn’t a salmon sandwich. I made that mistake once, it was nasty. Alongside my sandwich I would get about a half a cup of plain, white rice. It was the cheap stuff with no flavor. I would also get about a half a cup of boiled to death wax beans….tasty. I’d also get some sort of dessert, either jello, banana

Other: I’m sure this category is the main reason I didn’t starve in the hospital. I would eat soda crackers and Cracker barrel individual cheese. I would eat small individual ice creams at really weird times, like before breakfast or right before I went to sleep. I ate a LOT of baked chips. Nurses would share food with me at night so I ate a lot of fruit from fruit trays (melon <3), I also drank a lot of hot chocolate. I loved hot chocolate in there.

Thank you all for returning to my blog despite my disgustingly long hiatus. I promise there will be more posts very soon! Muah!

Itsy Bitsy Quitsy

Itsy Bitsy Quitsy

Itsy Bitsy had a hard life, it started out though much more light.

From 1-11 Itsy was Bitsy and she stayed so from morning til night.

But Itsy Bitsy turned Gutsy Wutsy on the eve of number 12

And suddenly Itsy wasn’t just Bitsy she was Quitsy as well.

Itsy liked to munch and crunch but then that started to hurt

Because the Quitsy was so strong it got the heart the worst.

No more munch and no more crunch, just swallows and slurps and beads.

Sometimes even slurps did hurt, and Itsy was put on feeds.

Although the beads looked like little pearls, it was hard to hide, that

Itsy’s pearls whirled her world into a bigger size. 

At numbers 12-13 she sat on a weighty throne

Of 15 higher than her friends and 20 of her foes.

At 14 Itsy wasn’t as bitsy as she used to be,

She took matters into her own hands to be a teeny weeny.

The problem is, the heart goes quitsy when you’re too teeny weeny

And Itsy Bitsy didn’t let it happen, even to be leany.

So Itsy had to stop her head heart from going quitsy.

So she swallowed and slurped and beaded and pearled her way back up to bitsy.

Number 16-19 were the time when Biggie went and quitsied,

Slowly, slowly like a slug so lowly, Biggie had turned to shitsy.

But Itsy Bitsy was a fighter now, so she took the leap

She let go of biggie, and did the baggie boogie beep.

The problem was with Biggie gone, Glurpie reared its’ head.

Glurpie like to be the boss, but “No!” Itsy said!

With Glurpie around, Itsy’s breathers and weavers and filters alike,

Started to go Quitsy a little more each night.

But Itsy knew just to hold on a few more days or so,

And then she’d go to the chamber where they cut and sew.

The took her out and put her in and turned her inside up,

They tweaked the bleak and thankfully, Itsy had some luck.

A few more minutes went and passed and Bitsy thought she was fine

She walked and talked and smiled, but couldn’t wine or dine.

In she went to get fixed “once more” she said.

Because Itsy was Bitsy and still she wasn’t dead.

But, this time she fell, the lowest fall to date

This was a new one, a scary new one, a new Quitsy fate.

The little beans on top of Biggers had decided to go Quitsy,

As sad as Itsy was, she had faith in that she was bitsy.

The little broken beans inside her, on her face put a grin.

Because despite the Quitsy Biggie and Beans,

She would climb a mountain.

To be continued…

A Positive Struggle

"I just feel like everything is so overwhelming right now" "That's totally normal"

Amidst all the drama of my surgery, a close family friend of ours was diagnosed with cancer and very unexpectedly passed away. It was very fast, sudden, and no one really saw it coming, at least not this soon. It was my best friend's mother, and my mom's best friend. They met in prenatal classes and me and my bff were born 3 days apart. Needless to say, she was like my second mom.

With all of this happening and the amount of time I've had to be by myself and think, I've really had things put into perspective.

I've had a hard time dealing with the impact of my surgery and that's made it hard to keep positive. 

As a mental exercise, whenever I'm out and about I try to notice things that I'm grateful for, or notice things or people that I'm more fortunate than.  Needless to say this Thanksgiving, I will be very prepared. 

I feel like this has been a great way for me to try and keep humbled about my life. My surgery was life altering, but it wasn't life stopping, in fact, it was life saving. I just need to remember that and focus on the good and not the bad. I'm adding a page to my blog called "Positives" where I'm going to list all the stuff I think of. 

I hope all you spoonies are staying happy and healthy <3

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. 

How To Convince People You Aren't Disgusting

"It's been a week since I showered" "Really!?! I can't even tell"

When I was in the hospital I had a number of things attached to me post surgery. I had a catheter, a rectal drain, two IVs, oxygen, and a drain. I basically was an octopus, so there was no showering for a while.

What did I do to make myself seem less of a disgusting mess while not showering for a while? I'll tell you.

1. The Miracle of the Bird Bath

Well, this is pretty self explanatory, but you get a face cloth (or several) dip it in hot water, and scrub      your smelly bits. I'm talking armpits, under the boobs, groinal...

My personal favourite!

2. Antiperspirant

I'm sorry, but I don't care if you're all natural, and don't like the idea of shutting off your sweats, but if you're going more than 3 days without a shower, you need some 24/7 protection. 

She's got the right idea!

3. The Bun and the Band

Once your hair gets greasy, there isn't any saving it. You can use dry shampoo for a day or so, but honestly the product builds up and works against you. My go-to greasy hair cover up is a top knot and a stretchy headband. It works wonders and keeps your guests from thinking you're completely gone. 

I'm a Liar Obviously

"I am here to stay" "Good job"

So, in my last post I said I would be back more regularly. Obviously I lied. Forgive me, I ended up in the hospital with an abscess and needed antibiotics, a drain and fluids.

Now I'm home again (with wifi finally yay!) and am in a "home hospital". Luckily, I was able to get a portable IV pump called a CADD (I don't know what that stands for) so I can do the IV antibiotic, one called ampicillin from home. It's awesome. I still have a perk drain in my side and the antibiotics/pump are heavy, but it is MILES better than being in the hospital. That place, is a nightmare. I'm going to have so many posts just to talk about all of my "experiences" in the hospital. From roommates to recovery, I've got a LOT of material to cover. 

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

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. 

Where Will You Be When Diarrhea Strikes

"You ok?" "Yeah, I just heard some unfriendly, very ominous sounding gurgles" 

You could be here...

Or here...

Or here....

Or God forbid here...

It could be here...

I think it happened to him here...

Those girls are in ignorant bliss....

It happened to Man's best friend here...





. . .

That's the same face I make.






Hope this brought some humour to our symptoms. Have a great day!