Tuesday, May 20, 2014

But first, let's take a selfie

Let me quickly share with you one of the best selfies I've ever seen. Better than Ellen DeGeneres' Oscar selfie? A close second. When you have a child, you see many firsts....first time rolling over, first steps, first solid foods, first word. THIS. This is Oliver's first selfie.

EPIC

Moving on......

Last week I did a very brave thing. At least I think it's brave. I cancelled my scheduled infusion. My gastroenterology doctor went into a frenzy and called me. Whoa, not the actual doctor, because doctors don't actually call their patients! He had a nurse not familiar with my case call me and advise me this is a bad idea. I told the nurse I understand where they are coming from; however, it is my decision and I no longer wish to pursue this form of treatment. I didn't go into the full reasons why. I informed her it was becuase of the headaches and migraines that I get with the infusions, which are a HUGE reason why I want to be done with the Remicade infusions. Truly, having a headache every day isn't worth it, in my opinion. I haven't had a headache for two weeks. Want to know why? Because the medicine is wearing off from my last infusion almost 9 weeks ago. I know this because I have taken Remicade for over 3 years. I also know my body better than anyone.

So, after much persuasion, I agreed to come in to be 'informed' of my decision. I went in expecting the worst, and that's exactly what it was. They tried to scare me with impending flares, horrible sickness, prednisone (steroids), and Humira. I told them I was aware. They told me if I wanted to get back on Remicade, likely I wouldn't be as receptive to the medicine b/c my body has built anti-bodies against it now. I told them I was aware. Then, because a doctor can't just let you get off one medication and not prescribe another, I was prescribed Azathiaprine and Mesalamine. Azathiaprine is a low level chemo drug, taken orally. Legally, I had to be told the most severe side effects: high risk of pancreatitis and skin cancer, as well as a supressed immune system. Thanks. And Mesalamine, well, that's low level as well, so not as many risky side effects. Also, the last time I was on Azathiaprine, I was on 50-75 mg/day. He prescribed 400 mg/day.  400 mg/day!!!! I'm sorry......what??!!

I smiled and nodded throughout this process to pacify them. I let them prescribe them. I let them prescribe them with the intent to not take them. I am not going to be compliant. Because part of my ultimate goal is to be healthy of my own accord, by eating clean, exercising, reducing the toxic chemicals I am around, maintaining my stress levels, getting sufficient sleep.

I am brave because I could take the easy way out and just take a pill to avoid the possibility of a flare but I believe in myself, holistic healing, and a higher spiritual being. That's not to say I'm invincible, but I'm putting my faith in these facets with the hope and conviction they keep me strong. That's bravery.