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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.

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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.

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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.

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Empathy Animated (& the Trap of Silver Lining Zombies)

Brené Brown‘s insight on the difference between empathy and sympathy has been animated into an instructive, informative, funny and adorable short video.

In case you’re like me and would rather read the gist than watch a video, here’s an excerpt (though I do recommend the video highly!):

“Rarely, if ever, does an empathic response begin with ‘at least.’ … Someone just shared something with us that’s incredibly painful and we’re trying to silver line it. … One of the things we do sometimes in the face of very difficult conversations is we try to make things better. If I share something with you that’s very difficult, I’d rather you say, ‘I don’t even know what to say right now, I’m just so glad you told me.’ Because the truth is, rarely can a response make something better.”

As soon as I saw this a couple months ago, I knew I wanted to share it with you, but not what I wanted to say about it. The thought I keep coming back to is not about connecting with others through empathy rather than sympathy, but with myself.

I cannot count the number of times I’ve been angry or sad about migraine and chronic daily headache and tried to make it better with “At least…” This wasn’t an exercise in counting my blessings, but in telling myself that what I feel doesn’t matter.

Silver lining my grief never made it go away, it just hid it for a while. Burying emotions doesn’t get rid of them permanently, it turns them into zombies that continually rise from the dead. Unlike zombies, for which there are surefire methods to eliminate, buried emotions return endlessly, becoming increasingly difficult to suppress.

Thanks to this animation, I now stop whenever a thought begins with “At least…” I then tell myself what I promised to say to others — “That’s awful, I’m so sorry.”

Guess what? It works.

Simply acknowledging that what I’ve been through is awful eases the pain more than I could have imagined. It serves me far better than silver lining the zombies ever did.

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Restaurants, Sightseeing & Shopping for AHMA Patient Conference-Goers

Wondering what to do in Phoenix/Scottsdale while you’re here for the American Headache & Migraine Association patient conference? Here are some highlights within a free shuttle ride from the Hampton Inn.

Food (listed in order of where I’d eat if I were visiting)

  • Pizzeria Bianco — This wood-fired pizza place has received rave reviews nationwide, including from Martha Stewart and Oprah. The original location boasts at least two-hour waits, but the new Town & Country restaurant often has no wait, even on weekends. It’s not cheap and the service gets spotty reviews on Yelp – and it’s so delicious that I still recommend it. (And you can walk here from the Hampton Inn.)
  • Beckett’s Table — My favorite restaurant in town. On the expensive side (for Phoenix), but well worth the price for perfectly prepared American and comfort food made with local, seasonal ingredients. Dessert offerings include s’mores with chocolate-covered bacon.
  • America’s Taco Shop — Excellent, relatively inexpensive Mexican street tacos (and burritos, tostadas and tortas). The meat’s the star here, though I’ve heard the vegetarian burritos are good, too. A casual, order-at-the-counter spot.
  • Los Dos Molinos — New Mexican food. Spicy and delicious.
  • Chelsea’s Kitchen — With old-growth trees, climbing bougainvillea, and a huge outdoor fireplace, this is one of the best patios in town. Good food, though pricey (part of what you pay for is organic and/or grass-fed meat). Only worth the cost if you can sit outside, IMHO, and the indoor dining space is loud.
  • Oregano’s — Calls itself “your neighborhood pizza joint,” but has a variety of pasta dishes, salads, and sandwiches. The decor is quirky and the food is tasty, it’s also fairly loud and there’s usually a wait.
  • La Grande Orange — Serves food all day, but breakfast is the best, particularly the housemade English muffins and sticky bran muffin.
  • Ajo Al’s — Typical Tex-Mex, fairly heavy and usually cheese-laden. And yummy.

Shopping

  • If you’re a bargain clothes and accessories shopper, check out Nordstrom’s Last Chance. It’s the final clearance shop for Nordstrom and the prices are dirt cheap. Be forewarned: it’s often crowded with long lines.
  • Camelback Colonnade, where Last Chance is located, also has a smattering of discount chain stores, including Old Navy and a nice Marshall’s.
  • Biltmore Fashion Park is mostly high-end stores and boutiques. It’s a fun place to wander around and has a ton of restaurants to choose from.

Architecture

  • Arizona Biltmore Hotel — Designed by a student of Frank Lloyd Wright, this beautiful hotel was built in 1929. You can wander the grounds, take a guided tour, eat at one of the restaurants, or even visit the “secret” Sunday speakeasy (password required, find it on Twitter @Arizona Biltmore).

If you have a car…

  • Desert Botanical Garden — This is a stunning botanical garden that showcases the diversity of desert plants. Even better, there’s currently a Chihuly glass exhibit. Chihuly’s work is always spectacular, but it’s extra-special with desert as the backdrop.
  • Hiking — Only a short drive from the hotel, Camelback Mountain, Piestewa Peak/Dreamy Draw, and Papago Park are beautiful places to experience desert landscapes without leaving town. South Mountain is farther, but also a little more isolated and nature-y.