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Take my 5-minute survey about the membership program (and get a thank-you bonus!)

Posted by on Jun 18, 2019 in activism, announcements, ChronicBabe Academy, Secret Club |

everything i’ve created in ChronicBabe is for you. i started this project 15 years ago, aiming to make the resources i needed when *i* was first diagnosed at the age of 25… and it has morphed over the years into a big media project!  one way i keep my work afloat (it does NOT pay much to be a patient advocate, lemme tell you) is by running a paid membership program. i know not all of my audience can afford it, but the money i make through that program allows me to create ALL the other content i offer, from the blog to youtube to facebook to my book to speaking at conferences to legislative advocacy to… all of it! 5-minute survey about chronicbabe membership programs from Jenni Grover on Vimeo. I could use your help! Here’s the survey link so i need to keep my work FRESH so you love it, and so i stay invigorated.  to be honest, i’ve felt a little burned out lately. this work is emotionally heavy at times, and it’s been a heck of a year here at ChronicBabe HQ! and while i know that you are craving more, i feel a little creatively challenged right now. so i’m asking you to spare me 5 minutes of time and take my survey. you’ll get to weigh in on what you think would make an amazing membership program, and be honest with me about what doesn’t work for you. and everyone who responds will get a discount code to use in my etsy shop! if you’d like to help (and again, i REALLY appreciate your help!), please head here to take the...

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When old symptoms come back again: PTSD, rain, and acceptance

Posted by on May 1, 2019 in coping, featured, PTSD | 30 comments

It’s been raining a lot here in Skokie, the village I now call home since we moved a few minutes north of Chicago’s north side to gain more space and a backyard for gardening. And by raining, I mean, a lot. First there was a freak blizzard, which dumped a ton of precip on us and then all melted the next day, soaking the ground. Then, it’s rained almost every day since, and apparently overnight last night, monsooned. That’s why my backyard looks like this today: Those wooden boxes on the right with the stone base are going to be my garden, and you can see the water has risen well into that area. (But the wood is made for this, so it should hold up, at least for a few years.) And that patch in the center is where we’re amending the grass, so I guess it’s good that the rain is fueling those little seeds. But that water. All the water. It’s effing horrifying. See, I have lingering PTSD symptoms from a traumatic storm experience more than a decade ago. At that time, I lived in a condo with my first husband. On a normal day in August, I was working in my home office when my friend Dee called to say she had just heard a tornado warning for my neighborhood. “What? That’s cra-” was all I got out before the lights all went out, the phone died, my ears popped, my stomach flipped, and then the sound of a freight train pummeled me. I ducked and ran for a closet, only to find it was too shallow for me. I found another closet and secured myself, holding the doorknob as tightly as I could. Minutes passed. Things quieted. I peeked out. It didn’t look so bad, some minor damage in our bedroom but nothing big. I ventured into the back of the condo, and — I can only describe it as a waterfall. Water poured out of every corner joint in every room. The kitchen addition built by a rehabber, was pouring rain into our kitchen and dining room. Debris was everywhere. My brain went upside down. I decided I could just mop up the water with linens, and gathered everything in the house to line the walls and floors. I called my then-husband but all the lines were busy. I panicked. I sobbed. I gripped my fists. I kept hunting for linens. Then I looked outside and saw the devastation. Our patio furniture: Twisted like a pretzel. A car in the parking lot had a telephone pole through its windshield. Commercial air conditioner units had been tossed around like a kid throws Legos. (They...

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Representation Matters: The HealtheVoices 2019 Conference

Posted by on Apr 30, 2019 in activism, featured, Work |

I don’t go to church, but I imagine that it feels a bit like how I felt at the HealtheVoices 2019 Conference a couple weeks ago. A deep sense of comfort and belonging. A common belief in a greater good for all. Friendships forged out of shared joys, traumas, and passions. A lot of singing and dancing. Tears of joy, of connection, of understanding. Sharing of resources. A feeling like everyone around you is family. I made new friends like Tammie Snowden, who advocates for folks with diabetes, and met old friends IRL for the first time, like Devri Velazquez, who lives with Takayasu’s Vasculitis. (I posted a ton of pics at my Instagram account.) In the world of patient advocacy, an event like this — sponsored by industry organizations, but designed by and for patient advocates — is rare. The main organizer is Janssen Pharmaceutical Companies, an arm of Johnson & Johnson, and they bring in a handful of big sponsors as well. They have a strong patient advisory board that helps create the programming for the event, and they cover travel expenses for every patient who attends — 140 of us this year. It’s a massive undertaking and it was friggin’ awesome. The open mic night alone was worth all the spoons I spent that weekend. (Stand-up comedy about ostomies! A drag queen performing You Got To Show Me Love! Original poetry and spoken word performances!) Being a patient advocate can be kind of lonely at times. I’m sure that sounds odd to you; after all, I’m constantly speaking with people, connecting on social media, speaking at events… I do have a strong sense of community. But when you live with chronic health stuff, and you advocate for others, your own health concerns often get brushed aside. I have had people write me angry letters, demanding I film more YouTube videos because they depend on me. (I paused filming new videos last year while I dealt with a massive months-long flare-up.) I’ve had event organizers expect me to travel and work for free for the “exposure,” and when I explain that “exposure” doesn’t pay the bills, they seem stumped. (And then I feel sad that I can’t go to the event.) While I’m sure you, dear reader, are not this type of person, there are lots of folks in our community who are demanding and unreasonable, and expect us patient advocates to do all of our work out of the goodness of our hearts. But that’s just dang impossible. And the folks who organize HealtheVoices get it. Not only do they make sure we travel comfortably and that all our needs are handled for the days we’re...

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Listen in: Chronically Well podcast with Callie Dixon

Posted by on Apr 10, 2019 in announcements, featured, media appearances |

A quick note to share that today, I’m on Callie’s Chronically Well podcast, talking about creativity and chronic illness. The episode is here, or you can find it in any podcasting app. Plus, she videotaped the entire thing – so you can watch our cute faces as we chat. Talking to folks on podcasts is one of my very favorite things to do. Are there any podcasts on which you think I would be a fab guest? Let me know in the comments below....

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I think I’m going to start blogging again.

Posted by on Apr 10, 2019 in announcements, community collab, featured, relationships | 18 comments

For a few years now, social media has taken over. When I started ChronicBabe, Facebook didn’t exist. Neither did YouTube, or Twitter, or Pinterest, or Instagram, or Tik Tok, or… anything else. Just: Blogging. And that was pretty easy to keep up with. But as I’ve added all my social channels over the years, it is really tough to keep coming up with fresh ideas for y’all, all over the place. So I let my blog whither a bit. But: That time is over. It is now time for me to come back to blogging. I have a lot of things to say, about life with chronic illness and chronic pain; about our health care system; about how women treat each other; about how our persistent lack of self-care is damaging us. And more. Much more. So let’s talk. I am curious to know: What kinds of things do you wish ChronicBabe would offer? What kinds of things do you want to know about my life? What kinds of questions do you have if you’re newly diagnosed, or if you’re like me and you’ve been sick for more than 20 years? Fill me in. Jump in the comments below, or use this contact form to send me an email if you want to keep things confidential. I can’t wait to hear from you. I started this project with a desire to create community, and I’ve been missing that – let’s get that communal vibe going again, shall we?...

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