1,000+ Words

The other day I received a letter from RemiStart, my Remicade Patient Assistance Program. Mr. P and I opened it up. The letter, my husband took and did his magic. I, on the other hand, took the warning label for the biologic drug to add to my collection for my Halloween costume.

Halloween? Yes. Halloween.

Ever since last Halloween, I’ve been trying to come up with clever, unique ideas for our costume. I know, I know, its MARCH!! However, I got the best idea ever when the first patient program letter arrived back in January. I’m going to be an arthritis patient.  I know, I know. Why would I want to be that when I’m trying every damn day not to be one…well for awareness, silly. 🙂

How is this costume going to work? Well, let’s just say it involves IV tubing, medical tape, an IV bag, and transforming the labels into a dress.

Yes, I know, its a little crazy. Especially as you are all probably thinking of the tiny, little, itty bitty warning label you receive inside your medication box with your antibiotics or whatever.

However, you would be wrong. There’s no way to describe a warning label to the extent of this one. WOAH! Watch out. IT WILL EAT YOU ALIVE!! They say a picture is worth a thousand words. So ladies and gentleman, here it is:

 

I’m 5’2″!!! FIVE FOOT, TWO INCHES TALL!! LOOK AT THAT AWFUL THING?!

Do you see the small ass print? Do you see how it covers up my whole body? You can only see my ankles and shoes!!

Oh ya, did I mention that ITS DOUBLE SIDED????!!! FULL with CONTENT!!

Yup, definitely not going to have any trouble turning this GIGANTIC thing into a dress…

So, yes, ladies and gentlemen, this is my double sided prescription WARNING for my biological infusion – Remicade. A drug taken to combat my arthritis, ankylosing spondylitis.

Scared yet?

What if I told you I knew all of the risks and still take this drug on purpose. I TAKE THIS DRUG!!! ON PURPOSE!! What if I told you I’ve been on this drug for nearly 11 years and have this infusion every month!!

Scared yet?

Ya, I don’t like to think about it…but…

What if I told you that there are 50 million Americans suffering with arthritis and 300,000 children ages from 18 months to 18 years. 18 months old, taking this kind of medication.

I AM NOT EVENING KIDDING!!

This thing is the size of a map. An old school map. Not like a map you have on your Androids or iPhones. No, the one where you have to carefully fold in exactly every position to fit.

And to think, I’m one of the lucky ones!!

Why lucky? This drug actually works for me. Those side effects do not affect me. Well except for the sinus infection every winter. No, I do not have the answer as to why the side effects leave me alone. I do not have a secret formula. I do not have secret genetics. Hell, if I had that, I sure wouldn’t be taking this drug, that’s for sure! I can tell you this though, that’s why exercise is a priority. That’s why taking my vitamins, getting my daily vitamin intake, and a good diet are key! At least I think so.

So you ask, why do I volunteer? Why do I fundraise? Why do I even bother? Because I want a DAMN CURE!! I don’t want to turn something as scary as my double sided, map size, prescription WARNING into something happy as a Halloween costume. I don’t want those 18 month old babies to be administered such a drug. I want the stupid freedom of being able to choose whether I can have children without thinking of the consequences to my future babies health or my health.

I want the freedom to not worry. Not worry about having enough energy to see friends or plan out my schedule months in advance and space it out. I want the freedom to be able to see sick people and give them flowers instead of having to send them by mail.

I want cure so my friends who can’t walk, who take 20 more pills than I do to combat the side effects no longer have to. I want a cure!!

Yup, I said it. I hate this stupid disease. It sucks. IT SUCKS!

But I’m lucky. I am really, really lucky.

A picture truly does say a thousand words.

 

Much Love,

If you’re a newbie here, welcome!

Advertisements

2 thoughts on “1,000+ Words

  1. I Love the costume idea!!! It will definately get the conversations going and that is for sure. And I too want a cure! Why is it we can’t find a cure for one single thing! Not for any autoimmune illness that I know of. It would be wonderful to say the least.

    Like

    • That’s exactly why I fundraise!! To raise money so there is at least one autoimmune illness that is better off. 🙂 I’ll be posting more of my trial and mostly error 😉 on the Halloween costume. Here’s hoping that I can transfer the warning label onto fabric!! Thanks for stopping by! 🙂

      Like

Comments are closed.