A Different Fear of Flying

"I'm going on vacation with my family" "I hope you're feeling 100% by then!"

This WILL be my family. Awww.

I fear travelling and I blame it on my Crohn's disease. I love being in new places, seeing new things, experiencing a different culture (ok, I'm going to the states from Canada, but you'd be surprised by the difference). But constantly being in fear of getting sick or, even more pressingly, needing to be by a bathroom at all times in a foreign place makes me beyond anxious. We've been planning our family vacation to the south for about 10 months, and I've been having anxiety dreams about it for the last 4 of those. 

There are the regular travel stresses: airport security, packing, just getting where you need to be when you need to be there. But when you have an illness you have a TON of other things to be concerned about. 

This is pretty much me. 

I have to make sure all your meds are in their original containers and they take up a LOT of space in your carry on so you have to account for that.

I have to be careful about metal detectors if you have anything not quite human inside you, i.e. my portacath. I get searched just about every time I fly. 

I am fearful of all the germs and recycled air that stays on the plane. I can't remember the last time I flew and didn't pick up a virus. 

I just got a new medic alert bracelet so that if I faint or something in the land of the free whoever attends to me will know what's all going on. 

I acquired anxiety medication for the flight because being in a situation with limited bathroom access pretty much makes me panic.

 I won't eat before going on the plane. I'm probably going to settle in for about 6 hours without food, which sounds bad, but is SO much better than awakening the beastly colon. 

Except put the meds in original containers.

It's just funny because I'm afraid of flying, but for totally different reasons than the normal person. 

PICC Lines

"It goes all the way up to a vein in my shoulder" "Oh my god. I couldn't deal with that"

As a young patient, I was admitted to the hospital several times for bowel rest. Basically this meant getting TPN or total parental nutrition. IV food. The veins in your hands, wrists, and forearms are too small to accept this broken down supplement, the particles are far too large. However, the veins in the front of your shoulder ARE big enough. In order to access these veins they gave me peripherally inserted central catheter (PICC). 

How this works, is in the crux of your elbow, they start an IV, but not just any regular IV. These IV tubes are a good 30cm long. By using a guide wire, a doctor threads it up into the larger vein in your shoulder, and BOOM. You've got a PICC line. Doesn't sound so bad right?

Well, my experience (now when I look back on it, was quite funny) was less than fun. 

She didn't actually look like this, but this is how I imagine her

The PICC insertions were done by this one, old, Polish doctor. She was great at what she did, but holy crap she was scary. She also only did the insertions after her day's work...which ended up being at about 11pm. So there I am, 12 years old, extremely ill, dehydrated, and they're telling me I have to be awake at 11pm to get a giant ass needle stuck up my arm! Lovely. The during my first PICC insertion I fainted. My mother tells me that the doctor was yelling at me in her thick Polish accent "NO PASS OUT. STAY AWAKE. STAY AWAKE." Each one of my insertions lasted between 1 and 2 hours. After they are sure the PICC is in, they send you down to the x-ray department to make sure it's in the right spot. I went down for my x-ray, and during my x-ray I fainted again. I'm obviously good with needles, eh?

That's basically the story of my first two PICC insertions. The third one went a little differently. It began like the first two, anxiety, needles, prodding, guiding. It seemed to last for hours. Truth was it did. It lasted a full two hours. What happened was when they inserted the PICC line, they found it hard to navigate the veins in my shoulder, they kept trying but the guidewire got caught in me. I'm not sure how this happened, why this happened, or how they solved it. I was a bit preoccupied trying not to cry or faint. This time they were unsuccessful. 

The next day I was sent down to some sort of imaging machine where they injected my veins with radioactive dye so that they could figure out a path to send the PICC down. They shot me up full of that dye only to discover that my veins in my shoulder are so damaged from the first two PICC lines that now it looks like I have balls of spastic wire instead of veins. And that my friends, was the end of my experience with PICC lines. 

Pretty much my veins right here. 

Don't Look Sick, Even Though You Are

"You look great!" "Thanks! Looks like the pounds of makeup I dumped on my face are working!"

I don't actually feel better when I'm all dolled up. But at least emotionally I do, and I feel pretty. That to me is pretty worth it. I have a couple of tricks to distract the eye away from the physical signs of illness, because people typically admire health and equate it to beauty (I don't always do this, sometimes I love the way I look when I'm tired and pale. I know, I'm weird). So, here they are. 

Have at 'er:

1. Conceal, don't reveal.

She looks very optimistic...

• I'm pretty sure you all know what I mean. Constant fatigue leaves us chronically ill folks with the nastiest of under eye circles. There's really no way to deal with this other than to slap on that concealer. If you have bluish circles, choose a concealer with a salmon or peach tint, if your circles are reddish, choose something with a yellow base. 

2. Culla. 

What a lovely healthy glow!

• If you don't have any friends from the hood, say that word out loud. Yes. It means colour. I'm talking about blush. A good pink, peach or coralcoloured blush without too much shimmer can help keep you from looking like you've lost blood (you probably have lost blood).
  
  
  
  
  
  
  

3. Scrubadubdub

That's right, you're happy.

• The only way to get rid of dry flaky, dead skin is to take it off. Nothing else can save it. Invest in a good exfoliating scrub to use in the shower. Think of it like shedding your dead, sick, skin to make space for new, healthy skin. 

4. Moistia

• Again, pronounce it out loud. Just like Gammy Num Num from that horrid movie "The Master of Disguise" give your skin some moisture. Drink water and load on some lotion. Dry skin makes you look dehydrated (you probably are dehydrated). 

5. Shine

Look at those luscious locks!

• Your hair. I always spray the bottom half with a nourishing shine spray. Your hair becomes dull when you don't get enough nutrients, so I pretend like I do, by spraying fake health all over me!

6. Layer

This might be a TAD much. 

• Whether you've put on weight or lost it, layering helps you control your body temperature, and hide whatever body your health is giving you at the moment. 

7. SPF

Lather up!

• I don't know why, but a ton of medications make people very sensitive to the sun. I know a lot of people who argue that a tan makes you look healthier. Ok, a tan. But I'm half dutch the rest irish and french. I don't tan. I burn. Like chocolate chips. Or a leaf. Or human hair. Something that burns easily. Just protect yourself from the sun. It's better. I promise.

8. Vampy Pout

Dem lips. 

• I'll be honest, I don't even know if this works. But if i'm feeling really sick and really down on myself I put on a dark lip colour. Whether it's red, plum, or a deep rose, I feel like the boldness of the pucker just catches people by surprise and for at least a second they're taken aback and forget I look like crap in every other respect. 

Whether it boosts your confidence or literally erases your signs of illness, any tips are useful. If you have any share them below, I'd love to try 'em out!

Exiled by Physics Kids

"I'm having physics people over." "Oh god."

I'm sitting in this little cheesecake shop that I crawl through a hole in the fence in my back yard to get to. I've got a cup of RedRose tea to my right, and the tiniest little milk pitcher beside it. They're playing an easy listening soundtrack made up of scratchy Norah Jones tracks. What I'm trying to say si that this is basically the scene where my true love would walk in the front door and I would either trip or spill something on him and it would be the most magical meet cute ever. Right?

This is probably more what I would look like...creepy. 

Not really. I'm here because my roommate is having friends over and they all work together doing physics things, and well, I feel pretty out of place around them. It's all good. I prefer my artsyness. I just figured it would be quieter here. It is. And I would have less people to beat to the bathroom. There are. 

The truth is, I'll sit here and blog until I either get bored or sore or my laptop runs out of power. Which won't be long at this rate. I won't be swept off my feet by some suave stranger or charmed by some quirky nerd. It doesn't matter. I have an awesome boyfriend. I'm just day dreaming now. 

I'm still dealing with this whole IV in my chest business. I realized as I was walking around my town today with my IV in my chest, sweat pants and flip-flops I looked like a successful code yellow (missing patient). Haha suckers. I was on my way to my infusion. 

Just imagine him with an IV in! The resemblance is uncanny.

The poor seating hostess at this cheesecake place looked rather alarmed when I showed up though. I'm always confused as to whether or not I should just tell people, to relieve their curiosity, or if I shouldn't, because people are unpredictable, and some can't even handle talking about needles. 

This brings me to the point of feeling the need to protect people from my chronic illness. That's a whole nother blog post, or several all to itself. 

So I'm just going to sit here, sip my red rose, and pretend that I'm not sad I couldn't find anyone to hang out with tonight. Sadness. 

I Have an Unsexy Illness

"Crohn's isn't sexy." "And other illnesses are?" "Yes! People walk around proudly supporting breast cancer with those bracelets that say 'I <3 Boobies'! But who would want to walk around supporting Crohn's and wear a bracelet that says 'I <3 Poopies?'"

There is a quote from John Green's infamous book The Fault in Our Stars. It is "illness repulses". I find this hilariously ironic, considering the characters in the book are diagnosed with cancer and are both described as being fairly attractive. Cancer is probably one of the sexiest diseases out there. I'm not saying it isn't a terrible diagnosis, it is, and I wouldn't wish it on anyone, but it has been romanticized by the media and publicized fund raising efforts. 

When's the last time you heard about a person with an unsexy illness being featured in a magazine or TV show? I'm talking about people who's illnesses are uncomfortable to talk about. Like, endometriosis when a woman's uterine lining literally falls out during her period? Crohn's disease where you spend more time running to the bathroom to experience bloody diarrhea than you do at work? or Kidney diseases that are treated so aggressively with steroids that the patients appearance is so warped by side effects they hardly resemble the people they were before the medical therapy? People who gain weight from their treatment, or get facial hair, or drool, or become incontinent, or who spend so much time in bed they get sores, or their muscles atrophy? Or people with mental illness who say inappropriate things or get aggressive or maybe don't say anything at all?

At least Mother Monster loves us. 

When I was searching for images for this post I typed "ugly disease" into google and the SECOND image that came up was this: 

Ouchey.

 I knew what it was, but I followed the link anyway, sure enough, that right there,, dear friends is a Crohn's Colon. We are LITERALLY THE GIVEN EXAMPLE OF AN UGLY DISEASE. Sadness.

It's sad that our society is so shallow that we can even discriminate attractiveness within a tragic category as chronic illness and disability, that is sad. The even more enraging thing is that even though I pride myself on being an assertive advocate for my health, I feel inadequate. Like I shouldn't be proud of having Crohn's the same way a patient with breast cancer can be. Why? Because my most prominent symptoms happen in the bathroom? Ouch. 

Why can't Crohn's be portrayed like this instead?

I don't have any answers for this, it's just some food for thought. I just wish our society wasn't so obsessed with the sexy allure of certain conditions while others get next to no exposure.   

My Super Power: Invisibility

"You look good!" "You say that to me no matter what I look like" "No, you actually look good!"

The phenomenon of the invisible illness is no stranger to many who suffer from chronic illnesses. Despite what a lot of activists may say, having an invisible illness is BOTH a blessing and a curse. 

Yes, it sucks that you look healthy despite feeling shitty on the inside. Yes, it blows that you have to literally convince people that you have a serious disease, syndrome or condition that literally qualifies you for disability status despite the fact that you're not in a wheel chair or emaciated or bald (hint hint nudge nudge cancer). Yes, it sucks that even better, sometimes,  you can't explain a cause, reasoning or cure for your illness.

It can be a HUGE advantage to have your super power of invisibility sometimes. This is how I choose to look at it. The blessings of having an invisible illness are almost as plentiful as the negatives.

Here is a list of positives to help keep the silver lining on your invisibility cloak:

1. You don't have to tell anyone what you have or why you have it if you don't want to. I'm a person that values the ability to choose who I share my business with and who I don't. 
2. You are not immediately stigmatized by your illness, you have the power to present yourself as a healthy individual, and take full advantage of NOT being labeled by your illness. This is especially helpful for things like job interviews, school applications, and first off meetings, I know my friends who suffer from mental illness feel me here.
3. When you're healthy, you're really healthy. On the outside too. People who have chronic illnesses that impair their mobility can experience healthy times too, but they still display their illness on the outside much like a pregnant lady displays the sex she had 8 and a half months ago. 

But what happens when you lose your super power? I know how that feels. I'm currently going through daily steroid infusions to get me in tip top shape before I go on vacation with my family (YAAAAY!!!!!) but it means that they accessed my portacath and leave my IV in for 5 days. I live in a city where I walk everywhere, and it's hot right now. Yesterday it was 31 degrees Celsius (88F) with humity of 69%. So it wasn't like I was going to wear a turtle neck to cover my chest IV. Walking down the side of the road and literally having everyone, guys and girls check out your rack, oops I mean, IV site, makes me feel strangely naked. I'm not ashamed, or shy about having Crohn's, but I dislike the sympathetic smiles they give me when they meet my eyes, or their furrowed brows as I imagine them evaluating their day and thinking "Ok, my life isn't so bad". It's weird. I miss my invisibility. 

My invisibility gives me the ability not to be defined by the public as my disease. This is important because EVERYONE is more than their diagnosis. 

That way you know when he (or she) looks at you, its for you, not your illness. 

Chemotherapy

"Oh my god, your hair is so thin!" "Yeah, it falls out because I'm on low dose chemotherapy" "YOU HAVE CANCER?!?" 

I dislike chemo. I've never been on enough to go bald or have completely debilitating side effects, but I've been close. A common medication used to control many autoimmune diseases including inflammatory arthritis, cancer, and, you guessed it, Crohn's disease is called methotrexate. Given by a subcutaneous injection once a week, this medication was AWFUL! The normal side effects from chemo were present. I'd get really really nauseous, weak, achey, light headed and just generally felt awful for about 24 hours after my injection. So basically, it was like having a violent stomach flu once a week. Not exactly a great time when you're living 6/7 parts of life. 

After being on methotrexate for a couple of months I started to get anticipatory side effects. Yup, that is EXACTLY what it sounds like. BEFORE I took the injection I would start to get sick. Soon enough it started to spread into stuff that wasn't even related to my injection. If I saw colours that looked like the colour of the medication I would start to feel sick, I couldn't talk about the medication, I couldn't even think about it without feeling sick.

I had a funny experience when I went to a leadership retreat with a bunch of other young adults with chronic illness. Through conversation we deduced that about 3 or 4 of us had been on the ol' methotrexate. We talked about it for about 5 minutes, then all at once we all said "Can we stop talking about this?" And as I looked around, and grabbed a glass of water to settle my own stomach, I noticed the green tinge on my peers faces. Turns out I wasn't the only one to get anticipatory side effects.  

I am not including an image of methotrexate because well, I'm starting to feel icky after writing this post. You can google it!