Community, Patient Education, Resources, Treatment

Virtual RetreatMigraine This Weekend—Join Me!

Please join me this Friday, Saturday, and Sunday, April 17-19, for the virtual RetreatMigraine experience—a series of information sessions on migraine that will stream on Facebook Live on the Coalition for Headache and Migraine Patient’s Facebook page. Here’s a schedule of the free events so you can watch live. I’ll be on a panel on Friday and will be leading a session on self-care on Saturday that I’m really excited about. I’d love for you to join me!

virtual RetreatMigraine schedule

If you’re not familiar, RetreatMigraine is an annual in-person retreat sponsored by CHAMP. The second annual retreat was scheduled for this weekend in California. When it had to be rescheduled, CHAMP decided to make some of the sessions virtual and open them up to anyone who was able to attend. It’s a great lineup of knowledgeable speakers, so I hope you’re able to watch some of the events.

Relevant links:

Patient Education, Resources

Migraine World Summit Starts Sunday!

Imagine hearing from 36 different migraine experts, from physicians and researchers to patient experts, all in one week. That’s what you get with the Migraine World Summit, a free online event that runs from Sunday, April 23 to Saturday, April 29.

The Migraine World Summit will address topics like:

  • The best migraine treatments
  • What do do when you feel like you’ve tried everything
  • The most effective non-drug treatments
  • Coping with anxiety, judgment, and social stigma of chronic migraine
  • New treatments on the horizon
  • Migraine myths (and what the truth really is)
  • Hurdles that people with migraine face

Peter Goadsby, MD, David Dodick, MD, and Richard Lipton, MD, are just three of the renowned physicians interviewed for the summit. Joanna Kempner, PhD, (author of the fantastic Not Tonight: Migraine and the Politics of Gender and Health) will talk about changing perceptions of migraine. Vidyamala Burch, who book You Are Not Your Pain, I highlighted in last summer’s series on mindfulness-based stress reduction, will speak about using mindfulness for chronic pain. And I just finished my interview about creating good doctor-patient relationships. The full lineup of Migraine World Summit speakers is impressive.

New videos will be posted each day of the week and are available for free for 24 hours. You can purchase permanent access to the videos (and get audio-only recordings and transcripts) for $79 until April 22 ($99 after that date). This is an affiliate program, so the referrer gets a portion of that fee. I’ll donate whatever I earn to the American Migraine Foundation.

Here’s the link to sign up for the Migraine World Summit. Then poke around on the website for the full schedule and speaker bios. It’s a great lineup.

Chronic Migraine, Resources

Working With Chronic Illness

working with chronic illness“How can I work?” is one of the hardest questions I get. My own experience hasn’t given me much advice to share, so I’ve been researching. Here are some resources for keeping a job you have and for finding a new flexible job. If you know of any others, please share in a comment.

If you already have a job and are trying to figure out how to make it work given your illness, Women, Work, and Autoimmune Disease: Keep Working Girlfriend is a great resource. Don’t let the women and autoimmune disease thing scare you off. The book has useful information for men and women with any chronic illness. Rosalind Joffe, the author, also has an informative blog.

If you’re looking for a job, here are some sites that post flexible, work-at-home, or freelance jobs. I’ve chosen only the sites that appear to be reputable, but do not have first-hand experience.

FlexJobs consistently gets rave reviews as a source for legitimate, usually professional, flexible job opportunities. Many are telecommuting positions, but the site also lists jobs with flexible hours or that are short-term engagements. There are more than 50 categories of jobs and Fortune 500 companies are on the roster of companies posting jobs on Flexjobs. The downside is a monthly fee required to search the job listings. While I have no personal experience with the site, reputable media sources say the fee is reasonable given the high quality jobs on the site.

Rat Race Rebellion screens work-at-home jobs and shares legitimate offerings in a daily email and on Facebook. Most jobs pay up to $20 and the number of jobs are limited each day. Work-at-home job offerings often seem like scams; Rat Race Rebellion claims to only post jobs that they have verified to be on the up and up.

You have many choices if you’re looking for freelance work. These are typically short-term or project-based jobs and do not offer benefits like health insurance. You’re best off poking around different sites to see if the opportunities would work for you. Sites run the gamut from focusing on niche professions to offering opportunities across a wide spectrum, some handle the payment processing and others don’t, some have freelance jobs you can pursue and others allow freelancers to post portfolios or resumes. Some freelance websites include:

Have you found a job you can do from home or that accommodates your need for flexible work? Have you tried any of these websites (with success or without)? Please leave a comment sharing your experience so readers can learn from one another.

Community, Coping, Resources

ChronicBabe Book Kickstarter

ChronicBabe has been an incredible resource for me, particularly in my early days of trying to figure out how to live well with chronic illness. And a book is on the way! Jenni Prokopy, ChronicBabe’s founder, has spent the last two years creating a book and multimedia resource that sounds incredible. The 10 key concepts she addresses are:

  • Embracing acceptance
  • Kicking bad habits to the curb
  • Turning around negative thinking
  • Establishing healthy boundaries
  • Practicing self-acceptance and love
  • Building a solid support team
  • Strengthening personal relationships
  • Exploring school and career options
  • Boosting your communication skills
  • Organizing your complicated life

Jenni running a Kickstarter to help her through the final push of editing (both to cover her salary over the next few months and to hire a professional editor) and book marketing, among other things. People are so excited about this book that Jenni has met all her funding goals three days early! Now everyone who who donates $1 or more to the Kickstarter will receive a free ebook.

ChronicBabe has been a labor of love for Jenni for 10 years. If the website been helpful resource for you or you’d like to get your eyes on all the goodness the book has to offer, you have until 11:30 a.m. ET on Friday, March 27 to make your pledge. She’s offering lots of goodies depending on pledge level, but $1 will get you the ebook. Watch the video below and check out the Kickstarter details for more information.

Chronic Migraine, Resources, Treatment

Migraine & Pregnancy: 5 Must-Read Articles

Most pregnant women want to avoid all medications during pregnancy, but that’s not always practical with a health issue like migraine. Doing so can lead to other problems, like severe weight loss, that could be even more dangerous than taking certain medications. These must-read articles answer questions about migraine during pregnancy and breastfeeding, which medications are safe, weighing your migraine management options and more.

Migraine and Pregnancy
A brief overview migraine and pregnancy, this article from Beth Israel Deaconess Medical Center in Boston starts with advice for women considering becoming pregnant and answers common questions about migraine during pregnancy and while breastfeeding.

You Are Pregnant (or Planning to Have a Baby)
Is your migraine frequency or severity likely to change during pregnancy? Can having migraine attacks while pregnant harm your baby? The National Headache Foundation shares statistics and answers questions.

What To Expect With Pregnancy and Delivery
This excerpt from The Woman’s Migraine Toolkit provides detailed and easy-to-understand explanation how hormones during pregnancy and after delivery can impact migraine. (Diana Lee of Somebody Heal Me, who is expecting a baby in July, recommends this book.)

Expert Answer: How can I manage my migraines during pregnancy?
A headache specialist talks about the importance of creating a migraine treatment plan for use while pregnant, which medications are safe to use during pregnancy and what alternative treatments a pregnant woman can consider trying.

A Migraine Mama’s Advice on Balancing Medication Usage During Pregnancy and Breastfeeding
A chronic migraineur reconsidered her resolve to avoid all migraine medications during pregnancy after her migraines spiraled out of control and she lost 15 pounds before her first OB appointment. She describes the emotional wrangling of finding the balance between getting the treatment she needed without endangering the pregnancy.

And remember, your particular situation may be different than those addressed in any of these articles. Work with your doctors to find the safest, most effective treatment approach for you. Having migraine attacks while pregnant isn’t harmful, but they are a physically stressful event. Your body is already stressed enough with the changes of pregnancy, so it’s extra important to take good care of yourself and treat your migraines appropriately.