Awareness

Questions on CGRP

Real News on CGRP Access

May 22, 2018 / 0 Comments

Aimovig, the first CGRP inhibitor drug, was approved by the FDA on May 17, 2018. This is extremely exciting news, but there are a lot of questions swirling around as many of us are anxious to try this new medicine. For the most up-to-date information about Aimovig visit Aimovig.com. The site includes Frequently Asked Questions, information on how the drug works, safety information AND information about a co-pay assistance program and a two-month free trial program. Worried About Access To CGRP Inhibitors? Many patient groups are working to address anticipated access issues to this new medication, including how to get a prescription from your doctor and to how to get your insurance company to cover it. However, these questions won’t be answered overnight.  You are not alone and you deserve access to care that is appropriate for the disease you have. The information below may answer some of your immediate questions, guide…

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Celebrating Scott’s Sobriety

January 8, 2018 / 0 Comments

Addiction is a disease. It affects the addict as well as their family and friends. Those with an addiction, whether to alcohol, drugs, or other vices, will always face these demons. As much as those who love the addict want to help, it is the addict who must be willing to face the disease and accept that they are powerless over their addictions. Today my dear friend Rachael and her family are celebrating her brother Scott’s one year of sobriety. This is a monumental accomplishment, and I am elated for him. Though addiction, unlike many other diseases, cannot be cured, addicts can live in recovery, leading joyful and fulfilling lives. Simultaneously, the addict’s mantra, “one day at a time,” still rings true. While this is a major accomplishment, Scott will need to continue to choose sobriety each and every day in the face of addiction. A few months ago, Rachael…

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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…

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Photo Friday – Miles for Migraine Philadelphia

October 13, 2017 / 0 Comments

On Saturday, Oct 7, 2017, I participated in the Miles for Migraine event in Philly. Besides volunteering, I also brought the INvisible Project: Migraine Edition display with me to share the stories of those living with migraine disease. Little did I know that I would play hostess and run around with a microphone, interviewing participants on Facebook Live. It was a blast and also so incredible to meet others who understand each other. Here are some of my favorite pictures and links to the interview sessions (including video of the fastest I have ever run in my life!).   I want to recognize Runnin’ for Research that has held multiple race events this year to raise funds for migraine, headache, and cluster research. Additionally, both organizations have a “Virtual Race” option that can be done any time of the year. And thanks to my friends at Migraine.com for coming out…

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Migraine Takes. But It Also Gives Sometimes.

July 12, 2017 / 0 Comments

My eyes were full of tears so many times in June for different reasons. Sometimes because of my own pain, but more often due to the stories of others that I have had the privileged to know. I’ve seen the despair of a life with migraine disease, robbing those of the future they had envisioned. Lost with what to do next. I got messages from many who were preparing to enter the hospital, full of questions and anxiety over the unknown. Upon hearing of a suicide in the cluster community, I felt utter despair for the family and a sense my own powerlessness. Migraine takes. I also saw people connect in different ways in the name of migraine awareness. My Facebook feed was inundated with people (and dogs) wearing #shadesformigraine or #haturdayforheadaches. I watched the brightest minds in headache medicine present their research, making me hopeful for the future. I…

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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…

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My Favorite Articles as a Migraine Writer – Part Four

June 26, 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. Images of an Invisible Illness Disability Income Preparation Guide Botox Basics

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Grandma’s Gout Story for Gout Awareness Day

May 22, 2017 / 0 Comments

My colorful grandmother, whom I am very close with, relayed to me her personal story about living with gout. May 22nd is Gout Awareness Day and I found it fitting to share this today. As always, Golden Graine is not just about living with chronic migraine, it’s about understanding all forms of chronic pain. In her own words, here is my grandmother’s story, originally written two years ago. ____________________________________________________________________ Age is Relative A woman never tells her age…well, almost never. My doctors know because it’s in my chart and I’ve never had a driver’s license so you won’t find it there. However, with you nice folks, I will share my age. 2015 is the year of my 8th decade … or if 8+0 = 8, then I am 8 years old again! My birth month found me celebrating said birthday several times. The final event was a large family gathering…

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I am Pro-human. Pro-decency. Pro-morals. Pro-healthcare.

May 8, 2017 / 0 Comments

I am Pro-human. Pro-decency. Pro-morals. Pro-healthcare. What happened last Thursday, when the House approved the American Health Care Act (AHCA), represents none of these things. My anger doesn’t just stem from the fact that if passed by the Senate “as is” and enacted into law, it will personally affect me in regards to my pre-existing conditions. My anger lies in the injustice that could be done to millions of Americans, especially to those of you reading this because it likely will affect you, my friends in the chronic pain community. Why is Everyone Saying #ihaveapreexistingcondition ? Like many of those who voted for the AHCA law, I have not read it. After pouring over dozens of articles written by those far more intelligent than me, I have discerned that the blanket statement of “the AHCA law does not cover pre-existing conditions,” is not accurate. The nuances of the bill, however,…

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Move Against Migraine Campaign by the American Migraine Foundation

April 21, 2017 / 0 Comments

The American Migraine Foundation (AMF) has launched a new campaign called Move Against Migraine. This initiative aims to spread awareness that migraine is a disabling neurological disease. Their website says the program aims to empower individuals living with migraine to advocate for themselves, to find the support and treatment they need. Below is the Content Capsule for Move Against Migraine. You will find resources, headache specialists, treatments, and ways to connect with others who live with migraine disease. You can also become part of their Facebook group. And let’s give major kudos to the artist who captured what all of us have felt. The imagery for this campaign is tragically beautiful. #MoveAgainstMigraine      

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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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