Photo Friday – Past 5 Weeks of Travel

Today, I’m getting on a plane from DC back to LA. The past 5 weeks have been filled with conferences, interviews, writing, education, planning, advocacy and lots of travel. I had a friend ask me how I travel so much with such debilitating chronic migraine? My response was:

If there’s something really important to me, I prepare. I rest. I find the strength from somewhere to push through. But I pay for it. I have a hard time saying no, but I’ve been better at picking and prioritizing what’s important. If it means that much to me, I sacrifice my health. Is that smart? No. But I want to live, not just survive. It’s worth it to me.

I realize that not everyone can travel, whether it’s for a conference or even a family vacation. I won’t pretend that my health has been great this whole time. I’ve had my struggles, sometimes spending more time in my hotel room than in seminars or skipping out early to take a nap. I have issues with let-down migraine attacks. I run on adrenaline and when it’s over, I simply crash and fall apart. Is that smart? No. But I want to live, not just survive.

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Photo Friday-Headache on the Hill

February 10, 2017

This picture was taken last year at Headache on the Hill, an annual lobbying event on Capitol Hill for migraine research. This coming Monday and Tuesday will be the 10th year advocates, patients, caregivers and headache specialists will descend upon the Hill to make sure our voice is heard.

My 2nd ICER Submission for CGRP Review

May 8, 2018

To find out more about ICER (Institute for Clinical & Economic Review) watch this video or check out the Patient Input Guide. This is my submission to ICER about the importance their review of new CGRP inhibitor drugs will have on my life and our entire community. -Katie ICER OPEN COMMENT PERIOD ON CGRP INHIBITORS…

Professional Patient: Skills Learned from Living with a Chronic Disease

April 19, 2017

My business card says “Professional Patient.” I get so many questions about this. What does that mean exactly? To me, I have acquired skills and knowledge that “healthy people” don’t have. Having chronic migraine and pain has exposed me to situations that many others never have to face. When your health turns suddenly, a lot…

2 Comments

  1. Katie Golden on July 14, 2017 at 12:12 pm

    Marineparent101,
    Thanks so much for your kind words. We all have a choice whether to accept our lot in life or to be miserable. I’ve had my dark days but overall I keep a positive attitude. Wallowing doesn’t change anything.
    Glad you’re active in AHMA, such a grwat organization!
    I wish we didn’t have to go through this, but at least we’rw in good company!



  2. marineparent101 on July 14, 2017 at 10:51 am

    Katie,
    I admire your resolve, to do the things that are important to you! I can see your mantra is “I want to live, not just survive”! I truly miss the person I was before chronic migraine and other chronic pain issues I have. No, I couldn’t keep up the pace that you do, but there is an age gap, about 15 years I believe. With the chronic migraine and chronic pain, comes chronic fatigue, I’m just a chronic mess. lol
    In 2014 I found Teri’s HealthCentral Facebook page, which lead me to AHMA. I’ve had migraine since I was 16, but didn’t go chronic until 2001. So for 14yrs I navigated through chronic migraine, with no support at all. Teri’s group and AHMA changed all of that, I learned so much and made some awesome friendships.
    It also opened up a new purpose in life for me, supporting, encouraging, inspiring and advocating, for those in the migraine community. I started with Twitter in Sept. 2015 and now a blog, my horizons are expanding, and that gives me a new lease on life with chronic migraine.



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