Tuesday, April 17, 2012

Learned the Hard Way

At the beginning of my adult health journey, I honestly didn't know that much about my illness. I had started to, as a result of this blog. But I wasn't to the point that I could honestly say I understood the medications and how they were supposed to help me. I was content to let my doctors tell me what to do - after all, they have to know my body better than me with all their education and experience.

Which is absolutely the worst possible thing you could do.

Whenever I speak with someone who has been recently diagnosed with any form of autoimmune arthritis, my first suggestion is that they educate themselves as much as possible on their particular disease and the available treatments.

It's not just because it's a smart idea though.

My first rheumatologist was based in Milwaukee, not too far from where I was living when I started seeing her. Initially, she wanted to put me on Plaquenil. I made the right decision, and went home to research the medication. It wasn't until I moved to Madison, about an hour and a half away, that I decided I would try the medication. I also got a referral to a rheumatologist in town so that I wouldn't have to take time off school and work to do labs and go to appointments.

This next rheumatologist was less... understanding. Even the nursing staff and receptionist there were grumpy all the time. But most importantly, he wanted to be in control. He didn't explain side effects to me and blew off my concerns. My personality is one where I don't necessarily like to make waves, but even when I was calling in horrible pain I got no real answers.

When I was on MTX and was experiencing side effects, he lowered the dose and had me break the pills up during the course of the day. He didn't recommend switching to the shots, which most doctors would have done based on the symptoms I was having. He would not give me anything but ibuprofen for pain. He wouldn't tell me the plans for labs or anything. It got to the point where I was satisfied taking the medications and just not seeing him.

My wish came true close to a year after seeing him initially when my appointment was cancelled - an appointment that, because of my job and school life I had to take a whole day off work to make. There was really no care for the fact that my schedule was being messed with.

For me, that was the straw that broke the camel's back. I couldn't call the office and get an answer for anything within a week. I was constantly being passed around and being told incorrect things. On top of that, in getting my medical records I found out that he actually didn't listen to a word I said. There were so many mistakes I can't even go over them.

I learned the hard way that I needed to take control of my health and treatment. My new rheumatologist and I make decisions together now, including my upcoming switch from Humira to Enbrel. I wish that I had been able to put my foot down more.

1 comment:

  1. Wow! This post spotlights how we MUST become empowered patients to effectively manager our autoimmune illnesses. I just want to scream when I read posts like this but fortunately you are now empowered and driving your healthcare management. Good for you!! So for you I don't have to help explain it (how to become an empowered patient) as you have done a wonderful job right here on this post :-) Keep up the great work not just in continuing to manage your own health but also to inform others as well of just how you did it!

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