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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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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 →

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(Photo on the left was last night, and on the right is this morning.) Well, life as a MedicalOddity is never boring. My eye is well on its way to swelling shut. The fun never ends you guys! 🤪Read More →

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Okay, that title may be a little dramatic but, let me tell you, as a person that has always repeated the mantra: “failure to plan is planning to fail.” I like organization, I’ve always been a joiner, and, I like to control my own schedule. So, the learning curve on chronic illness has been brutal. Now, don’t get me wrong, with chronic illness you do a lot of planning, but it is mostly contingency planning (what to do when something goes wrong, i.e. your body does not cooperate, the venue is not accessible) rather than being able to plan out your day to day schedule,Read More →