Thursday, April 26, 2012

Stay In Control & Do Your Research!

6:00am – Wake up
6:15am – Get out of bed
6:16am – Take medicine (repeat every 4-6 hours)
6:17am – Go about the rest of the day.
Fridays – Take Enbrel & Methotrexate

I have a special spot on my counter-top where my medicines are on display, easily accessible for me to reach when I need them. A spot in my fridge where my Enbrel chills out (ha), waiting for me every week.

Medicines are funny. The right medicine and the right dose can make your life as close to perfect as can be. But the wrong dose, the wrong drug, the wrong fit for your lifestyle just doesn’t work.

I’ve told my story about Remicade. I’ve talked about my experiences on different arthritis controlling options while growing up. I was lucky enough to have a doctor who cared about how I felt about my medicine. All that took a lot of work. It took me figuring out who I am, what I want my life to be like, and what works best for me. That takes a while and it’s not an easy thing to do.

Of course, when you’re young or newly diagnosed (or both in my case), you have to just kind of . . . go with it. Trust that your doctor knows what he or she is doing and hope that the medicine chosen for you will work the way it’s supposed to.

But it’s very important – no, crucial – for you to do your research. Look at all the possibilities. Find out how other people are doing on different options. Explore alternatives.

One thing I imagine that can be frustrating for doctors is when a patient comes in saying something about how they saw a commercial for a new drug and are, in a way, self-diagnosing. I’m not a big fan of the self-diagnosis, personally. But I’m also not a proponent of blindly following the advice without thinking things through for yourself.

Taking control of your healthcare means having a balance. Having knowledge you’ve acquired and trust in your doctor’s counsel. 

We need doctors who we can trust to give us options that will fit us best, and we also need to research our conditions in order to be up-to-date on the new wonders science brings us!

I didn’t really realize this until I decided I needed a change. I was on Remicade, blindly accepting treatment that I wasn’t necessarily happy with . . . but I had been on it for years and figured it was the only option I had.


Once I realized that having an infusion every few weeks just didn’t fit my lifestyle, I took action.

I looked into my records, my previous medical history, and really looked at what medicines I had taken in the past.

I got on the internet and studied arthritis drugs new and old.

I did some investigating, found people online who had arthritis and had experiences that I hadn’t. I asked them questions and listened intently to what they had to say.

I soaked up every bit of information I could find on the subject. My theory was that if I was going to go see my doctor and tell him I needed a change, I need to know what else is out there.

This period of learning was invaluable because when I saw my doc, instead of just agreeing to whatever it was that he would give me, we had a discussion. An honest discussion about my life and my options. That is the key.

The goal is to go from a situation where you are simply a patient with no understanding, to a person who has the knowledge but needs someone to show how to use the tools.

For me, that meant going to my doctor and saying “I’m unhappy with the way things are going.” And then I had to explain exactly why. After that, I was able to bring up some of the things I learned.

“. . . well I was talking to someone the other day about Humira/Simponi/Orencia. . .”

“. . . I did some research about foods that cause inflammation and diet changes. . .”

“. . . I remember doing well on Enbrel in the past, and I’m wondering what would happen if I went back on it. . .”

I had questions for him, which was incredibly important. Instead of just telling me what to do, he had to give me answers. I made him explain what options I had by bringing up what I had learned.

What I found was that he seemed to appreciate my honesty about the situation I was in. It helped him understand why I wasn’t happy with my treatment. When he learned that it just simply didn’t work with my lifestyle anymore he was more than happy to approach an alternative.

It took some work on my part, but I made it happen and I’m better for it. Do some research. Ask questions. I’m here and more than happy to answer! 

This article was originally written for Achieve Clinical Research, and can also be found here.

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