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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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Announcing: ChronicBabe Pen Pal Kits

Posted by on Mar 28, 2019 in featured, practicalities, relationships | 6 comments

do you miss feeling connected? sometimes i do, too. and when i do, i try to make an extra effort to reach out to people and say hello. one way i do that is by sending snail mail. it’s such a simple thing to do – write a short little note, throw in some confetti, seal it with a kiss, and toss it in the mailbox. and i LOVE getting snail mail – it’s like a little present! so i decided this week that i would help y’all become better pen, i’m announcing today the release of ChronicBabe Pen Pal Kits! i am raiding my stationery collection and creating fun little packages from my stash. each kit contains:  at least 3 note cards. these might be blank, or might have fun phrases or illustrations, like “thank you” or “you’re awesome”3 Forever Stamps, to make sure you send your snail mail. these are good for mailing within the U.S. FOREVER, but don’t wait!at least one roll of washi tape, to use to decorate your envelopesat least 20 stickers from my massive sticker collection from all over the worldtwo ChronicBabe stickerstwo You Are Beautiful stickersextra decorative paper and other goodies I find as I raid my drawers the kits are for sale in my Etsy shop, and will be available until i run out of goodies. so these won’t last forever!  international kits available for those who live outside the U.S., i offer kits that don’t include stamps, for a slightly lower price. you’ll have to get your own postage. and next week, i’ll tell you about another component of this pen pal project: a pen pal membership component, which will make us pen pals. that’s right…you and me. pen pals. writing to each other. doesn’t that sound fun?! i’m working on the details now, and will announce next week how you can get involved. here i am, dreaming about all the snail mail i’ll get to send and...

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25 Ways to Support Chronically Ill Friends During the Holidays

Posted by on Dec 19, 2018 in caregivers, ChronicBabe Basics, coping, featured, friends and family, holidays, relationships, resilience | 6 comments

It’s the winter holidays, and this time of year, many of us with chronic illness feel extra blue. We may not be able to travel because of our illnesses, or we may have less money to spend on gifts because our health expenses are high. We might feel like we can’t attend parties because there won’t be anything for us to eat or drink; we might even feel like we won’t have anything new to talk about, and that’s uncomfortable. This holiday season, I hope you’ll give an extra thought to your friend who’s ill. To make it easier, I’ve come up with a long list of ways you can show you care. This is great for those of us sick chicks to share with each other (we’ve got to support one another!) and it’s a great list to share with our loved ones, who might want to support us but don’t know how. Your chronically ill friend needs you! And loved ones need to learn how to support sick folks, too. Share this list with folks you love, okay babe? And have the happiest holiday season possible. Text your sick friend to say hello, or I love you, or how’s your day going – something simple.Offer to do a quick grocery store run for your friend, even it’s just to pick up a few essentials.If you can’t run an errand for your friend in person, use a service like Postmates to deliver food,  groceries, or sundries. Set a date with your chronically ill friend to watch a movie together. If you can’t do it in person, schedule a date when both of you can stream the movie at the same time, and hop on the phone to watch and giggle together.Make a recurring calendar reminder every three days to check in with your friend. The holiday season can get hectic and you might forget, but your friend needs you.Offer to drive your friend to some errands they need to run, especially shopping, going to the post office, or even doctor visits. That way you can catch up and make something otherwise mundane more fun.Buy your friend a month of membership in the ChronicBabe Academy, so they can make more friends with chronic illness–and learn how to empower themselves.Call your friend on the holiday and tell them you love them – people so rarely make phone calls now, they’ve become a real treat!Collect your sick friends’ addresses using a program like Postable and then send them a postcard to arrive during the holidays.Bake something you know your friend will love, keeping in mind their dietary preferences or limitations – ask first!If you don’t bake, ask around for a recommendation for...

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