Trypa- what?

Trypanophobia is the fear of needles.

About 20 percent of humans are needle-phobic. Being afraid of needles is actually a beneficial evolutionary trait. Thousands of years ago, the early humans learned that they had a greater chance for survival if they avoided stab wounds or punctures. If these humans fainted upon seeing a tool that could result in pierced flesh, they signaled that they were not a threat. Passing out when seeing something sharp and pointy allowed them to survive, thereby producing the next generation of fainting humans.

Needles can be someone’s downfall. Tough guy rocker Alice Cooper says that the only thing he is scared of is a needle. He explains, “I can put my head in a guillotine and play with a snake. But no needles!” In Game of Thrones, young Arya is given a sword that her brother Jon had made for her. Jon tells her that all the best swords have names. After being coached to stick her enemies with the pointy end, she names her sword Needle.

Fear of needles is actually in our blood, so to speak. Deep in our reptilian brains, we recognize needles as a threat. I have never really been afraid of needles. It’s a good thing too, because needles are now significant objects in my daily (or at least weekly) life.

It’s not fun giving myself the Avonex. I don’t yearn to get home so I can dose myself with interferon beta. I can play connect the dots with the bruises on my thighs at my injection sites.

The first month I took Avonex, I used a pre-filled syringe. Now I use the auto-injector pen, similar to the Epipen carried by people with severe allergies. The needle in the auto-injector is much smaller than the needle of the pre-filled version. And you cover the needle with part of the pen before you place it on your leg and push the button. Done and done.

But the syringe… I can’t tell you the high amount of intestinal fortitude I need to push that needle I am holding through my own skin. I am not afraid of needles. I’ve been inoculated, epidural-ed, pierced, and tattooed. I’ve given blood, where they stick a needle the size of a Capri Sun straw into your arm. I’ve gotten IVs. I’ve had a catheter in my arm for a week when I was receiving daily infusions.

I’m not afraid of needles. But holding a syringe in your own hand, piercing your own skin, pushing the plunger to administer the medicine with your own thumb... It’s hard to do. Even now--while I have transitioned to the Avonex auto-pen--I still have to stick myself with an old-school syringe when I give myself my B-12 shot. 

As much as I hate those needles loaded with medicine, I love, love the needles loaded with ink. I love my tattoos. I love getting tattooed. I love the day after getting the tattoo, when the colors are so bold. I love the healing process, where the fresh ink sheds its scab and emerges like a butterfly from the cocoon.

I really want another tattoo. I am trying to figure out how to break it to my dad. My current strategy is to talk him into going with me to get one of his own. I am not completely confident in this strategy. Maybe I should start working on my mom.

Isn’t it funny how the simple needle can generate so much fear, deliver so much health, create so much beauty. How many things in this world can we say that about?

Get My Money, Buy My Medicine

Sorry Snoop, I’m not talking about THAT medicine. We will leave that for another post. I’m talking about this purple, orange, green.

Doesn’t interferon beta look like it is throwing a party? Epic blowout in Elys’s brain! Everyone’s invited!

I never really gave much thought to the medication I took. I always had Advil on hand to quell my occasional headaches. My first aid stash contained children’s Tylenol, some antibiotic ointment, and a big bottle of antacid.

Things have changed.

The amount of medication that has entered my life in the last few months is staggering. Here is an accurate recreation of what my medicine cabinet looked like before the diagnosis.

This is what it looks like now.

And this doesn’t include the Avonex, which is stored in the fridge.

I’ve had to become one of those people with the little case that holds all my pills for the day. Mine is purple and has the day of the week printed on the top of the tiny compartment. You know what I’m talking about. The kind your grandma had.

I do not want to get muddled in politics. I’m not going to write about my views on Syria or my opinion about gay marriage. If I want to do that, I will do it on another blog. I am not trying to push any agenda. But I do want to point out this: If you have ever wondered why Obamacare is important, it’s because of me.

I am the person that is benefitted by Obamacare. I know the plan isn’t perfect. I know that some people think it is bad policy. I think some of it is not correct. But when I got my MS diagnosis, it became essential to my health and wellbeing.

I now have a “pre-existing condition.” Before the Patient Protection and Affordable Care Act, I would—as of April of this year—be uninsurable. To be fair, I am covered, and covered well, by my generous company insurance plan. But if I was not employed, I would be completely screwed. Not only would I be saddled by a chronic condition that needs quite a bit of care, I would have to figure out how to pay for my meds. I am taking one of the most expensive prescription pharmaceuticals on the market today.

Which brings me to the other thing Obamacare has done for me. It eliminated the annual and lifetime spending limits that most insurance companies used to cap the spending on an individual. In these last few months, I have racked up the healthcare spending: MRIs, blood tests, visiting several different doctors, IV steroid therapy. And lest we forget, all those prescriptions. I would be hitting my head on that spending cap, and there is still a quarter of this year to go.

The last thing I need to be doing is hitting my head. Well, except when wearing a helmet and taking down a jammer.

Avonex and 8 Wheels

There are two things in my house right now that I never even imagined might be there: Avonex and Quads

The Avonex is Interferon beta, an injectable medicine that is supposed to reduce the frequency of MS relapses. I keep it in my fridge, right next to the half drunk bottle of white. 

Quads are the speed skates used in the Derby. Four wheels on each boot. They are supposed to go fast. I keep them in a gym bag with my pads, helmet, and a couple of dryer sheets to cut the wonderful stink.

My favorite thing about Avonex? You might think it is the needle in my thigh every seven days. Ha, you would be wrong! It isn't even the flu-like symptoms that visit me about 24 hours after the shot. Who doesn't love the chills! No, it is this, straight out of the stack of literature that gets delivered with the meds:

"The way Avonex works in MS is not known."

What the…

I got my first pair of skates yesterday. I had been borrowing the skates I used for the last two team workouts. As soon as I opened the box and smelled the leather of the boots, I laced them on. I wore them around my house for an hour. There are parallel wheel tracks all over my carpet.

My favorite thing about my skates? I was brave enough to have a need for them.