Miss Migraine in the Pittsburgh Post-Gazette

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The Adventures of Miss Migraine is an ongoing column about my life with chronic migraine.

After my last post about Aimovig, the first-ever drug designed specifically to prevent migraines, the Pittsburgh Post-Gazette contacted me about doing an interview with them. You can read the full story on the P-G’s website! Here’s a snippet:

“I can’t even conceptualize what’s it like to not be in constant pain,” said Kelly Lynn Thomas, a patient at UPMC. “So, the possibility of having time where I’m not in any pain is mind-blowing.”

For years, Ms. Thomas, 31, of Spring Hill-City View, has written a blog “The Adventures of Miss Migraine.” The most recent post features the new drug. “Guys. This is huge,” she begins.

I was thrilled to be able to help shed some light on this important issue, and am so glad Aimovig is getting so much press.

Now, I have an ask. Help me raise $300 to support migraine research and awareness!

Last week I started the Couch 2 5K running program. Exercise is a good tool in the migraine management tool box, but it is unfortunately also difficult to get started because, well–migraines sap your energy and suck the life out of you, and exercise tends to trigger them. So far I like the C25K program because it starts out slow and alternates running with walking for the first few weeks.

While I am already feeling the benefits of regular exercise (I really do have more energy!), I’m not just doing this for me. I’m running to raise funds for migraine research as part of migraine advocacy organization Miles for Migraine’s June Virtual Challenge.

I won’t be ready to run a full 5k by the end of June, but I’ll be halfway there. I’ll continue running in July and hope to run my first 5K in August or September. Throughout June, on non-running days, my goal is to at least go for a 30-minute walk and/or attend a yoga class. Starting June 1st, I’ll post weekly updates here about my progress.

Here’s how you can help this June and beyond:

  1. Make a donation through my fundraising page.
  2. Share my page with your social networks.
  3. Reach out to someone living with chronic migraine and let them know you care. If you’re able, offer to do something nice for them, or send an encouragement card or small token (just lay off smelly lotion or candles, as perfume can trigger migraines).
  4. Share the Post-Gazette article with your networks to help spread awareness of how difficult, isolating, and depressing chronic migraine can be.
  5. Ask your health insurance provider if they plan to cover Aimovig, and when. If they say no, ask why not and reaffirm how important this drug is to migraine patients.

I’m also working on some gift ideas for anyone who pledges a certain amount of money, so stay tuned for more on that!

 

Miss Migraine Gets Angry

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The Adventures of Miss Migraine is an ongoing column about my life with chronic migraine. This post appeared first on my blog of the same name on November 21, 2012.

When my husband got laid off in September 2012, we had to purchase our own health insurance (Note: This was pre-ACA). This was not an easy task. I had to make sure to get a plan that had reasonable specialist co-pays, that covered all of our medications, that included chiropractic and behavioral services, AND that didn’t cost a million dollars. Overall, I’m pretty satisfied with the insurance. It’s not cheap and it’s not as good as what we had under my husband’s job, but it does what we need it to do.

Except when it comes to my abortive medication, namely, Maxlt.

Oh, sure, the insurance company says, we’ll let you refill that–but you only get nine pills (yes, we know your doctor prescribed you twelve pills per month) and we’re going to charge you $280! But wouldn’t you rather just take Imitrex? I mean, we’d really like you to take Imitrex. We think it’s way better than Maxlt. And you can trust us, even though we aren’t doctors or nurses. We’re an insurance company! We know what we’re doing!

(In case it wasn’t clear, the above paragraph was sarcasm.)

I knew that when I started this blog, and decided to sub-title it “A Girl’s Adventures in the United States of Pain,” that I was eventually going to have to talk about how ridiculous and (pardon my French) fucked up our healthcare situation is.

The Affordable Care Act is making things better for a lot of people, me included. Making insurance companies provide birth control with no copay is a huge thing. But what the Affordable Care Act does NOT do is force insurance companies to cover non-birth control prescriptions at a reasonable co-pay.

Let’s just say I’m furious.

I was even more furious when I called the insurance company and asked for the reason for the quantity limit. FDA regulation, they told me. Well, that’s blatantly false! Teri Robert covers this issue in her book Living Well With Migraine Disease, but basically, the FDA suggests a max of 3 pills per week to avoid rebound headaches. That works out to 12 pills per month.

My doctor’s office has clearly run into this problem many times. When I called them, they said they would send a form over asking for coverage and a quantity increase, and that it was almost always granted. This is definitely good news, but just because I will probably get the medication I need doesn’t mean I’m going to stop fighting this.

Living with migraines is a kind of hell. No one should have to suffer through more hoops and stupid red tape because an insurer wants to save a few bucks. On Monday, I’m going to be making a few phone calls.

Post script: This has since happened to me many more times. Now my co-pay for my abortive medication is $80 for 12 pills, and my new insurance company also tried to limit me to 9, citing the same “FDA regulation” as the previous one. Sigh.

Miss Migraine: How supporting local agriculture helps my migraines

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The Adventures of Miss Migraine is an ongoing column about my life with chronic migraine. This post appeared first on my blog of the same name on August 10, 2012.

First, I chop the potatoes and add them to the broth. Then I peel the carrots, slice them, and send them in after the potatoes. Next comes a whole miniature purple cabbage and a medium yellow onion, roughly chopped. Then two fennel bulbs chopped willy-nilly and and a small, fat zucchini that had been hiding out in a corner of the fridge and was nearing the end of its edible life.

Organic vegetable soup

A bowl of Whatever-I-Have-In-The-Fridge-Soup. Photo by Kelly Lynn Thomas.

I love the rhythm of chopping and slicing vegetables, the knife in my hand, moving up and down, the steady collisions with the cutting board. The fennel is the most difficult to attack. Layers fall away as I work at it, preventing an easy pattern. The rest require varying applications of pressure: the knife slides easily through the zucchini without much help from me, but I must push it down to separate each slice of carrot.

All of the vegetables and herbs come from Kretschmann Organic Farm. Each week, we get a box of fresh produce and other goodies delivered to a pick-up spot in our neighborhood. We don’t know what we’re going to get in advance, and we can’t pick anything out (though we can order extra things like blueberries, peaches, chicken, beef, cheese, coffee, etc.). To me, this is a relief. It means fewer trips to the grocery store, becuase we only need to buy dry goods, and we can buy them in bulk. It also means less time spent in the grocery store.This translates to less energy expended and less stress, and less of a chance for the harsh lights, strong smells, and screechy carts to exacerbate my migraine.

Looking at the soup’s color, I decide it needs more orange. Three more sliced carrots go into the broth. I let it simmer for awhile — I don’t bother to time it. Eventually, I take my tomato knife out and dice four juicy, perfectly ripe tomatoes. When I feel especially motivated, I tear piles of fresh herbs from their stems: rosemary, thyme, parsley. This time, though, I let bunches of dried herbs steep in the broth for a long time before I started cooking.

It’s 86 degrees Fahrenheit, but I don’t care. My Whatever-Vegetables-I-Have-In-The-Fridge-Soup requires no thought, no planning, is easy to prepare, impossible to mess up, will last for several days, and is delicious and healthy. This is my favorite thing to cook. Sometimes I add beans, but this time I simply forgot.

local, organic vegetables from a CSA

A selection of vegetables, fruit, and herbs from this week’s produce box (beets, swiss chard, red onion, cabbages, peaches, dill, cilantro, tomatoes). Photo by Kelly Lynn Thomas.

For someone with a constant headache, the routine of picking up a box of veggies at the same time and place every single week is comforting. The food we get from Kretschmann is a higher quality and fresher than what we get from the store. Fresher foods have less tyramine, a compound that develops as foods decay and that can trigger migraines for some people.

My husband and I sat down in the living room with our big bowls of fresh soup and a fan blowing our way to keep us cool while we watched the first season finale of Buffy the Vampire Slayer, which I had finally convinced him to watch with me. We ate slowly while Buffy fought ugly-faced, toothy undead. I can’t speak for him, but I was content.

There are subscription-based programs like this, called Community Supported Agriculture or CSAs, all over the country. To learn more about them or find one in your area, visit www.LocalHarvest.org/csa. I’m not getting paid to talk about CSAs; I simply think they’re a great way to help the environment, the local economy, my body, and my migraines.

What do you do to make cooking and food preparation easier?