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Posted on the front door of my house since the second week of March At first I thought that shelter in place was going to be easy for me–after all, due to years of pain and chronic illness, I am used to spending inordinately large swaths of time at home without a break. As a group, many of my chronically ill friends in the same situation posted joke memes to the tone of: “this is our time, this is what we’ve been preparing for!” And they were correct, we do have the skills to deal with this kind of situation in many ways. But asRead More →

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Last week I took my first trip alone since 2013. And I was terrified about it. A decade ago I would have never believed that I would be typing these words. In those days I traveled for work and for fun often and never had a problem, aside from hating the hassle of plane delays and taking off my shoes for the TSA. But the chasm of difference between my old career-driven self and my new migraine driven self has never been so evident as it has in the last seven months, so I was ready to face the challenge. Retreat Migraine was the firstRead More →

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I’ve been all over the map on updating this blog. Nothing for months then boom: post-post-post-post-post! Let’s call it one of the many pitfalls of chronic illness. It’s lower on the list than pain and exhaustion but it is still in the running as I mourn the loss of stamina and ability to plan out everything. But, I digress. Today I dragged my butt up and in front of the computer for a few minutes to get this up, having spent the last 48+ in a dark room with a throbbing head, in the grip of the unforgiving MigraineBeast. I’ve spent many posts talking about doctors,Read More →

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“Never judge a book by it’s cover”. “It’s what’s on the inside that count’s” “Before you judge someone, walk a mile in their shoes.” There are dozens of idioms and sayings that have been drilled into us since we are young, but as is the case often in life, putting them into action often falls by the wayside. As someone with a rare disease that is invisible and a chronic, often debilitating condition that makes it hard for me to function and often confines me to my bed, I understand the importance of making sure that people who may not look like they have anRead More →

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I am so excited to be involed in this project! My Chronic Brain is an online magazine for chronic migraine sufferers launching in January 2019! I am the Resources & Advocacy Editor and I look forward to continuing to find ways to connect fellow migraineurs with their elected officials so they can impact policy and affect positive change. Beth Morton is the Science & Health Editor for My Chronic Brain and she is reintroducing #MigraineChat! The first one is happening this Monday, December 3rd. But, I’m going to let her tell you herself. Here is Beth’s blog post from her blog, Counterfactual Brain. Posted withRead More →

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It started with a tweet. And a very long drive to Pennsylvania. Our friendship began on twitter, so why not go a step further and fire up the laminating machine? Whoa. I am getting way ahead of myself here, the thought of laminating tends to do that to me. So let’s go back to that long drive and talk about Mia. Mia and I met close two years ago and have become fast friends. Spoonie-sisters that share the unfortunate bond of migraine but also a love of dogs, shark-week and loose-leaf tea. Mia suffers from terrible migraines. So drastic and overwhelming that I feel likeRead More →

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It’s been a while… I really do start a lot of blog posts that way. It’s a shame, because I do have a lot of thoughts percolating around up here, but life always gets in the way. Chronic illness will certainly contribute to that, you may have every intention in the world but plans are as fragile as glass.  Pain bears down on the crack and splits the once solid surface into shards, cutting and injuring all those that come into contact. We bleed as we flit from diagnosis to diagnosis. My last post was on the eve of my 40th birthday in March, andRead More →

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Today is the last day of my thirties. Wow, that feels strange to immortalize in print. One one hand, there is a running narrative where I still don’t feel completely at ease with the fact that I am a grown woman —a sneaking, slithering thought percolating that I am pretending at this game we call adulthood. After all, wasn’t it just yesterday that I was debating prom themes and worrying about extracurricular activities with my friends? Heck, I still have stress dreams about winning Senior year’s Spirit Week. Then there is the other corner of my mind, the one that feels like that of anRead More →

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I’ve been away for a while, but I wanted to give you an update and it all revolves around this: I’m in migraine hell. Today is day 37 of the longest, most painful migraine of my life. For the past two decades I have dealt with migraines. And so have most of the females in my family tree: Grandma, Mom, my aunt a have to wrestle with this beast that is oft categorized as a headache but in the reality is so much worse.  And in the last 7 or 8 years, the trigeminal neuropathy (i.e. was so severe it was likely masking the migraineRead More →

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The original title of this post was First Do No Harm, and it was an updated version of an old post I had written last year about a terrible (but unfortunately not uncommon) visit to the ER and being dismissed outright by the medical staff. The publication changed the title and it seemed to touch a lot of people who had been in similar situations. When an ER Nurse Blamed My Weight for My Chronic PainRead More →