Invisible Illness

Photo Friday – Portrait of Sick Aunt Katie

December 8, 2017 / 0 Comments

This week, most of my posts have been about kids. I wrote about a great children’s book, Noah the Narwhal: A Tale of Downs and Ups. I shared an old article, called The Kid Conundrum about my decision on having children of my own. And now I want to share a picture that was drawn by a special kid in my life earlier this year. We were hanging out while his mom took his brother to the doctor. Of course, ten minutes later I got a migraine with an aura. I stayed calm, but it’s a bit hard to corral a four year old. He immediately knew I wasn’t doing well and he curled up on the couch with me and I closed my eyes as he was entranced by the movie. I retreated to a bedroom when his mom came home. A few hours later, my little buddy came…

Keep Reading...

Noah the Narwhal Explains the Downs and Ups of Living with a Chronic Illness

December 5, 2017 / 0 Comments

“You sleep a lot.” A couple times a year, I get to see close friends who live in Boston. They have three funny, smart and talented girls all under the age of nine. Some visits I can be very interactive, playing board games, going to the beach or putting on talent shows. Other times I just can’t. As much as I want to, my head gets the better of me. “You sleep a lot,” says the oldest. Kids are perceptive. They know when I don’t feel well. I explain that I get very painful headaches. I take medicine, but sometimes it doesn’t always help, so I have to lie down. Noah the Narwhal Over the summer I got a chance to preview a children’s book called Noah the Narwhal, A Tale of Downs and Ups by Judith Klausner and illustrated by Sarah Gould. Ms. Klausner has chronic migraine disease, like…

Keep Reading...

Migraine Patient Input for ICER Report – My Submission

November 28, 2017 / 0 Comments

Introduction I wanted to share my response to the ICER patient input questions. I definitely went into a lot of detail. Please do not feel you need write a book. The questions that are the most important to focus on are #1, #2, #4, #5, & #7. It’s ok to leave questions blank. To learn more about the Migraine Patient Open Input period and how ICER’s review will impact access to new CGRP medications, visit https://www.headachemigraineforum.org/advocacy/ The ICER form can be found here: https://icer-review.org/patient-guide-to-open-input/ This is our chance to be heard! But the deadline is this Thurs, Nov 30th at 5pm EST! If you want to share your responses, let me know and I’d be happy to post them there! ____________________________________________________ On which ICER report are you providing input? Erenumab for Migraine Organization (if applicable): Patient Briefly describe your disease experience, including your diagnosis, treatments you’ve used, etc. Be as…

Keep Reading...

The INvisible Project – Migraine Edition

June 28, 2017 / 0 Comments

You may have seen me post about the Invisible Project, but I don’t think I’ve taken the time to explain it. It’s a magazine that highlights the lives of those LIVING with chronic pain and tells their stories, emphasizing pictures from their personal archives. The main purpose is to make the invisible more visible. The INvisible Project is the flagship program of the US Pain Foundation (go “Like” their page!). Nicole Hemmenway, VP of US Pain and Director of the Invisible Project, conceived this project with the goal of showing the real impact of chronic illness, which is not always pretty. Previous editions covered multiple chronic illnesses. This year was the first time a disease-specific magazine was produced, focusing on migraine. It launched in early June, just in time for Migraine & Headache Awareness Month. The Migraine Edition Nicole and editor Jenni Grover, of Chronic Babe, approached me late last…

Keep Reading...

My Favorite Articles as a Migraine Writer- Part Three

June 19, 2017 / 0 Comments

In less than 4 years, I’ve written over 100 articles sharing my world with chronic migraine disease & pain. For migraine awareness month, here are my favs. June is Migraine and Headache Awareness Month, so I thought I’d share with you the ones that have meant the most to me. Bellamy Young- Out of the Darkness and Into the Light Former NFL Star, Ben Utecht, Talks TBIs Chronic Pain Finds a Place in Holllywood with “Cake”  

Keep Reading...

Understanding the Healthcare and Proposed Budget Plans

May 25, 2017 / 0 Comments

I’m frustrated with what’s happening on Capitol Hill. Proposed changes to healthcare and proposed budget cuts will affect millions, including you.

Keep Reading...

My Dad Explains Ocular/ Retinal Migraine Attacks

January 31, 2017 / 0 Comments

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.

Keep Reading...

Migraine Attack: Too Exhausted to Move

January 29, 2017 / 2 Comments

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.

Keep Reading...

Photo Fridays- Never Let Your Pain Go To Waste

November 25, 2016 / 0 Comments

This picture is being sold as part of a fundraising effort between the US Pain Foundation and 540WMain, a non-profit run by my dear friend Calvin Eaton in Rochester, NY. Learn more about this project and how to purchase artwork by those who have chronic pain conditions.

Keep Reading...
Katie Golden

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

Archives