Advocate Fail

I feel so fucking stupid.

I assumed I wouldn’t be able to go meet with my colleagues again this year at HU Connexion because of the shitty year we’d had, particularly with my weird migraine situation and trying to catch up financially. But then I suddenly got the idea to take X, and go just the two of us. John balked at this, for good reason, and said we should all go, and I was like, great!

Then I had my positive MRI result, the “bulbous tip” on my basilar artery which explained every single new symptom. I was ready to accept news that was potentially THAT BAD just to have a reason behind the inexplicable, confusing new crap that was assailing me head to toe. But it did launch my family into a panic. A week later when we learned the enlargement on the MRI was simply an error made with the contrast, life didn’t just happily return to normal. At around that same time, my beloved ER changed to a strict no opioid policy and I still wasn’t supposed to be taking Imitrex. We weren’t exactly in a space where we could plan a trip with a lot of complicated variables. So we didn’t.

The week before spring break X became extremely ill. I took her to urgent care and she was diagnosed with bronchitis. She missed five days of school. And the all-important standardized testing approaches. I was definitely dreading telling the Schools that both girls were going to have some unexcused absences.

Why couldn’t I just have arranged the whole trip on my own? Just me, wearing my big girl pants (or skirt, usually) booking a flight, knowing I could hail a cab and get to the hotel on my own? Then, after the conference, get back to the airport and fly home. That is how all the other advocates do it. WHAT IS WRONG WITH ME?

Because this morning John woke me up with a list of trip woes and I saw the writing on the wall. Or the text on my screen. Whatever. The weather was going to be bad. He couldn’t find anyone to take care of the dog. There was going to be a huge march in Philly Saturday, “March for our Lives,” which is fantastic but would make traveling to our first destination, my grandmother’s house, very difficult. He had realized X’s 13th birthday was going to have to come out of the same paycheck as the trip (HU pays for me, but not them). After some text conversation I decided to throw in the proverbial towel. It was a devastating decision, but because I’d involved my whole family, this is what happened. I was asking for it.

So now, I don’t get to see my advocate colleagues whom I adore like sisters. Kerrie, Katie, Lisa, Holly, Nancy, Janet. Anna who missed the last conference; KyKy, who is brand new. No Health Union swag, no shop talk, no delicious food, no bonding in the quiet room, no fun photos. Last year we decided as a group to use “migraine disease” instead of “migraines.” What will be decided this year? Will I spend months trying to catch up?

All I know is, I’m sad. And it’s my fault for being too afraid to travel by myself. Way to go, 44 year old. You’re awesome.

4 Comments Add yours

  1. Once you do decide to try it, it is the most empowering feeling. I was probably slight manic at the time but I remember thinking to myself, I could do this again. And I liked it ❤

    1. John talked to me about the empowerment factor too, but planes tend to trigger me, and because of all the BS with them health, I’m lacking an important rescue medication. My goal is to make sure I have all my ducks in a row for next year.

  2. Kyky Renee Knight says:

    Kyky here, you are wonderfully brave and brilliant and I can’t wait to meet you in the future! I myself required a lot of help from my caretaker throughout the trip, and found a lot of it to be quite difficult to navigate on my own. To make matters worse, I had a pulsing, throbbing migraine the entire trip. I know we say this a lot, and you hear it even more, but you are not alone in feeling this way!!! I am sending encouragement your way. ❤

    1. Oh no i’m so sorry you were sick the whole time! That’s awful. I think you’re pretty brilliant too and I can’t wait to meet you either! I just read your article about eating during an attack 🙂 take care and I hope you’re feeling better. xoxo

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