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. 

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.