My Voice
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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Can we talk about health care for a minute? I know, there’s been so much political discussion about it that it is so hard to figure out what’s going on. I’m not going to go into any of that because it’s irrelevant. Why? Because while the new Administration and members of Congress have come up with numerous changes to the Affordable Care Act (aka Obamacare), but nothing new has been passed into law. Bottom line is that the same rules apply as when it was enacted in 2014. Why Pay Attention? I bring this up because it’s open enrollment time. Through December 15th, if your state participates in the healthcare exchange, you can sign up or change your current plan. Let’s talk basics first. If you have health insurance coverage through your employer, this doesn’t pertain to you (but it could to someone you know, so don’t stop reading!). If…
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October is Breast Cancer Awareness Month. Football and baseball players will be wearing pink. Fundraising walks will raise millions of dollars. It’s a worthy cause. I’m happy to say that I’ve had a friend beat it twice. However, did you know that September was National Childhood Cancer Awareness Month? This year I decided I was going to honor those who have been touched by this disease in October, my cousin’s birth month. Rachel would have been 28 this week. Warning Signs At 18 months old she kept complaining that her tummy hurt. When my Aunt took her to the doctor, the diagnosis was not what they had expected. Rachel had neuroblastoma. This form of cancer is the most common type found in infants, typically diagnosed around one to two years old.i Cancer in children, especially at Rachel’s age is hard to recognize because they can’t really verbalize what they are feeling. Additionally,…
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Do you embody empathy when you cross paths with others? The homeless person in the subway station carrying a backpack and all of his worldly possessions in a shopping cart. The mother with a screaming kid in the grocery store. The woman who parked in the handicapped space, but walked into the store unassisted. We’ve all seen situations like this and likely judged those people. Why can’t the homeless man go to a shelter and get a job? Why isn’t that mother doing anything about the temper tantrum her four-year-old is having? That woman must be abusing the handicapped system by parking when there’s clearly nothing wrong with her. How often do you think about walking in their shoes instead of judging? If you talked to each one, you may understand that the mother in the grocery store has chronic migraine and is so exhausted that she barely had the…
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It’s always scary to get an envelope in the mail from the Social Security Disability office. Recently, one of those showed up in my mailbox. It was time to recertify my disability. It’s been three years since I was awarded benefits. The Social Security Administration has the following guidelines on when and how often someone would be asked to recertify their condition: If medical improvement is: “Expected,” your case will normally be reviewed within six to 18 months after your benefits start. “Possible,” your case will normally be reviewed no sooner than three years. “Not expected,” your case will normally be reviewed no sooner than seven years. I fit into the “Possible” category. I rely on these benefits and can’t afford to miss anything in this process. I spent countless hours gathering up all the information I had so there would be no doubt that my chronic migraine disease was…
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*************************SEEKING APPLICANTS************************* Job Title Chief Medical Officer of Personal Health Affairs (AKA Social Security Disability Beneficiary) Job Description Full-time position, flexible hours. Prerequisite: Ideal candidate would have a background in all of the following areas: analytics, accounting, patient advocacy, medical billing, insurance underwriting, legalese, pharmacology, healthcare administration, Social Security Disability, Medicare & Medicaid. Preference for those with M.D., Ph.D., CPA, RN, NP or Esq. behind their name. Skills: The ideal candidate would be well organized, exhibit patience, possess a friendly phone manner, anticipate problems, show initiative, diligent in finding correct answers and keep meticulous notes. Job Duties May Include: Schedule, prep and arrange transportation for 1-3 doctors’ visits per month. To include compiling a list of questions, a list of medications, changes in symptoms and provide medical records from other healthcare providers Interpret insurance policies and medical billing codes Reconcile medical bills Track payments toward deductibles Inquire about incorrect medical…
Keep Reading...How do YOU #MoveAgainstMigraine? Yoga is my way to #MoveAgainstMigraine. It took me years to build up the stamina to be able to go back to a practice I had started years before becoming chronic. Yoga has helped me connect to my body and learn how to listen to what it is trying to tell me. The breathing techniques help me to remain calmer during rough attacks. But IT IS NOT EASY! I can go weeks or months without stepping onto my mat. And sometimes I push myself too hard and can cause my pain levels to increase. I’ve learned to modify poses and know when to call it quits. The American Migraine Foundation has a campaign called “Move Against Migraine.” I challenge you to share how you #MoveAgainstMigraine. Could be painting, sharing articles, joining a support group. Be proud of what you are able to accomplish despite having migraine…
Keep Reading...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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Katie is a professional patient, writer for Migraine.com, US Pain Ambassador, patient advocate, speaker, and freelance writer.