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Professional Patient: Skills Learned from Living with a Chronic Disease

April 19, 2017 / Comments Off on Professional Patient: Skills Learned from Living with a Chronic Disease

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 comes at you quickly. Questions you never thought about before. What are my treatment options? What if I can’t work? Which insurance plan is the best for me now? Where can I find support? How do I fill out this mound of paperwork, go to doctors’ appointments, keep my job and run my household at the same time?

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The Steel Cables that Lie Beneath the Surface of Those with Migraine

April 12, 2017 / Comments Off on The Steel Cables that Lie Beneath the Surface of Those with Migraine

The Golden Gate Bridge is truly a masterpiece of iconic architecture. The 4,200-foot-long, art-deco suspension bridge is made of cable-spun steel and concrete. It’s quite an experience to drive over the freezing cold waters of the San Francisco Bay. Sometimes there is so much fog that it hides the top of the pillars painted in “international orange.” Every time I cross this bridge, I am reminded of the words from a massage therapist, “you have steel cable under there.” That was the perfect analogy. It’s something that I have struggled with my whole life. I stretch every day, am conscience of my posture, take breaks from the computer and use peppermint oil or tiger balm to keep those muscles relaxed. But when I’m asleep, I curl into a ball and clench my fists, basically to protect myself from the pain. I sleep in odd positions. None of this helps to…

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Advocate on the Loose!

April 5, 2017 / Comments Off on Advocate on the Loose!

I’m on a plane home to LA reflecting on the last three weeks I spent on the east coast. Several opportunities came my way and of course it all happened at the same time! I am grateful I was asked to be part of events focused on community building, advocacy, education and collaboration.

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Sabotage

March 23, 2017 / Comments Off on Sabotage

The mere thought of taking your brain into a sunny environment, filled with music, friends and acquaintances to enjoy something as simple as happy hour is overwhelming. The outside world slowly becomes a place filled with unknowns. Will my brain behave or will the combination of a screaming child, an ominous rain cloud and the smell of that guy’s pungent cologne cause anarchy in your head?

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Going Dark

March 8, 2017 / Comments Off on Going Dark

Over the last hour, I’ve been watching an amazing sunset. We have a wall of windows and a sliding glass door that leads out onto a huge balcony. The sunsets in California are out of this world. As the sunset progressed, a huge cloud sat right above the mountains and the ocean, creating some magnificent colors and shadows. Purples, pinks and grays are about to completely be hidden as the sun is almost gone and night sets in.

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Photo Fridays- Advocates in Action

February 17, 2017 / Comments Off on Photo Fridays- Advocates in Action

Shown here are my fellow Headache on the Hill participants as we talk to a staffer from Congressman Don Beyers office from VA. I was so incredibly proud of how well our group was able to mesh together to get our message across. Two of us had chronic migraine, one had cluster headache, two were caregivers and one a headache specialist. I have to boast about my friend Monica who had asked me months prior if she could go with me to Headache on the Hill.

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Why I’ve Come to Capitol Hill

February 15, 2017 / Comments Off on Why I’ve Come to Capitol Hill

Yesterday, I attended the 10th Annual Headache on the Hill. Organized by the Alliance for Headache Disorders Advocacy (http://allianceforheadacheadvocacy.org/headache-on-the-hill), over 100 patients, doctors and caregivers descended upon Capitol Hill to lobby for migraine research. We met with the offices of Senators and Congressman throughout the day to show how incredibly underfunded this disease is compared to the burden it places on its constituents and the economy. While some meetings only lasted 10 minutes or less, over 150 representatives were visited. I found that sharing personal stories helped to connect our audience to our disease. Sometimes it’s not always efficient to share your story as we are only one of dozens of appointments held in each office that day. We are encouraged to write our story and leave it with the staff member or representative we met with. I thought I would share my letter with you. As an advocate and…

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Shrinking into the Pain

February 8, 2017 / Comments Off on Shrinking into the Pain

At My Tallest The beginning of my day starts when Archer leaves for work around 9am to brave the LA traffic. Although I just want to crawl back into bed, I start my day with a smoothie. I sit on the balcony just to double check the ocean is still there (my fantasy land of living at the beach could have just been a dream all along, so I gotta check!).

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My Dad Explains Ocular/ Retinal Migraine Attacks

January 31, 2017 / Comments Off on My Dad Explains Ocular/ Retinal Migraine Attacks

My dad gets ocular or retinal migraine attacks. He gets a visual aura that lasts 15-20 minutes and then he doesn’t get the head pain. Oddly, his attacks started after I became chronic.

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Migraine Attack: Too Exhausted to Move

January 29, 2017 /

I took this video a few days after coming home from 6 days in the hospital. I’ve had a really hard time recovering although the ketamine treatment tends to decrease the frequency and intensity of my migraine attacks. Sometimes you just gotta cry it out.

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Katie Golden

Katie is a professional patient, writer for Migraine.com, US Pain Ambassador, patient advocate, speaker, and freelance writer.

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