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Step Therapy Sucks, and I’m Tired of Being Quiet About it (AWAP Wednesday)

Posted by on Apr 20, 2016 in activism, Affordable Care Act, coping, depression, fears, featured, Health Care Reform, pain, ranting, resilience, suicide | 22 comments

This week’s video is different. I’m sharing a personal story about something I’ve been struggling with this year—Step Therapy—in hopes that you’ll relate… and that you’ll join me in fighting this awful practice: Step Therapy. So it’s a longer video, a more passionate stance, and a request. Please take some time to watch it all the way through… it comes from deep in my heart. *AWAP = As Well As Possible Now it’s your turn: Have you gone through Step Therapy or something similar? How did you fight back? What worked, and what didn’t? I wanna know! Join the conversation in the comments below, share your experience and ask for advice from our community. Want to watch more videos like this? Check out our AWAP Wednesday video playlist, which has more than 10 hours of guidance, advice, and bloopers. Is there a question I can answer for YOU? Add it to the comments below, or shoot me an email. Until we meet again: Be AWAP! Smooches! Rough transcript: Hi! I’m Jenni Prokopy of and today is AWAP Wednesday (that stands for As Well As Possible). Each week, I offer you my personal favorite tips and techniques to help you craft an incredible life beyond illness. Yes! I know you can. Subscribe to the ChronicBabe YouTube channel today to make sure you never miss another video, OK? Today’s AWAP Wednesday is a little different, my friends. I have a personal story to tell you, and a request I hope you’ll honor. Here we go… [Bumper] The past four months have been absolutely hellish here at ChronicBabe HQ, and I want to tell you why. I’ve been pretty quiet about the details, but today I want to explain it all to you—because I bet many of you are going through the same challenges. If my story helps you feel like you’re not alone—and if my outrage helps motivate you or anyone you know to advocate for folks like us—then this video could possibly change lives. I’ve been taking an FDA-approved fibromyalgia medication for many, many years, with great success. The change it made in my life was enormous. You know me as someone who, despite fibromyalgia and a host of other chronic conditions, is able to run her own business; maintain an active social life; be part of a committed romantic relationship; volunteer for both local efforts like my community garden, and national efforts like patient advocacy; and much more. Right? That’s the Jenni you know: spunky, lively, upbeat, even in the face of deep struggle. [Transition] This year, my new insurer took away my fibromyalgia medication through a process called Step Therapy. (link to us pain doc) For those who don’t know, Step Therapy is cost-saving policy...

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What I did today to help make living with “invisible” illness more visible. And: What you can do, too.

Posted by on Apr 3, 2014 in activism, Affordable Care Act, featured, Health Care Reform | 14 comments

Today I had the unique experience of sitting with a U.S. Census Bureau employee, participating in the SIPP survey—the Survey of Income and Program Participation. It wasn’t something I wanted to do, but it’s something I needed  to do because I was called on as a U.S. citizen to participate in this four-year-long project. The answers I provide help the Census Bureau analyze how we use our income to pay for things like utilities and food; how we spend our money on healthcare; how illness can impact our ability to work; and many more important questions. Emotional exhaustion. The two-hour interview left me emotionally exhausted. While I’m very proud of my successful business and enjoyed sharing details about some of the highest income I’ve ever earned (2013 ROCKED professionally!), it was very difficult to outline in detail what I spend on medical expenses, and how my health impacts my earning abilities. As I sat across from the surveyor, I checked my records and confirmed that I had more than 75 doctor appointments last year. That the amount I spent out of pocket for healthcare costs was more than 20% of my net income. That while it was typical for me (a self-employed gal) to spend 50 hours a week working, I also had periods at least once a week when I couldn’t get out of bed or work for half a day. The big picture? That I work more hours than most people I know; that I pay more for healthcare than most people I’m friends with; that while my income was high last year, I still struggled to make it because of high debt that I’m slowly chipping away at; that I spend time every week not being able to work; that I sometimes need help doing basic household tasks like laundry and shopping… This is a difficult thing to look at. I reached out for support. These are traits, experiences, that I move in and out of every day. But it’s not often that I summarize them for a complete stranger in such stark, black-and-white statistics. And it made me extremely sad. I texted my boyfriend, who was amazeballs. (I hope you’re seeking out strong sources of support in your life, too!) He had helpful things to say, mainly that by talking frankly about this experience, I am helping to make it less invisible. By telling a complete story about how chronic illness impacts us, we help others understand its reality. And we help diminish the stigma. The Census Bureau employee seemed surprised that I had times in my day when I couldn’t perform normal tasks, or that I worked so many hours despite needing so much downtime; that I...

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AWAP Wednesday: What’s your experience?

Posted by on Dec 4, 2013 in Affordable Care Act, featured, Health Care Reform, ranting | 4 comments

I don’t know about you, but MY experience has been craptastic. And I’ve resisted writing about it because it is SO difficult to encapsulate all the emotions I’ve been feeling. But it’s time to end my silence. Here’s what I suspect will be but the first of a few posts about the Affordable Care Act. It’s an AWAP Wednesday video, but this week, instead of answering a reader’s question, I’m hoping you can answer mine: What’s your experience? I’ll be gathering the stories and sending them along to legislators and members of the media, in hopes we can nudge along some more solutions. Small chance of changing anything? Yes. Will it make me and US feel better to do SOMETHING? Yes. What do you think? Feel like sharing your experience? Please chime in. I can’t wait to hear all the details. XO,...

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So it turns out, it’s REALLY important to ask for help.

Posted by on Nov 18, 2013 in Affordable Care Act, coping, depression, featured, Health Care Reform | 6 comments

Ha! News flash, right? Durrr… I always tell people that it’s essential to ask for help, but sometimes I have a hard time asking for it myself. Good thing some of the people in my life are proactive and reach out to me. Here’s a prime example: I’m struggling with ObamaCare. I love love love the idea of it, but the execution has been a total fiasco. My own application is being held up half-way through processing, and it’s been agony to even get that far. And man, is it hard to watch friends zip through the process with no issues! I want them to be successful, but…I’m also a bit jealous. So the other day I had gone through hours and hours of struggle and I posted a somewhat sad-sack photo to Facebook and Twitter. And honestly, I just hermitted at home for a few hours after that. Curled up on the couch and numbed my mind with goofy sitcom action. Cried a bunch more. Wished I could talk to someone who was going through the same thing, a friend or family member who would understand. But I felt so alone. Nearly all of my friends are either married and get their partner’s benefits, or get insurance through their employer, so they’re not dealing with this process. (Yet.) When I try to explain it to them, I feel like I’m re-living all the stress and frustration all over again! And that gets old. Amirite? So I was very much feeling sorry for myself, wishing for a solution. And basically, I just called that day a wash and tried to start the next day fresh. Then a couple days later, my sister called. The one with two kids, one of whom is a baby. The one who just started a new job. You know, the one who is just SLAMMED right now. She called. “I saw your Facebook post, and was wondering what’s going on. Can you talk about it now?” she asked. A flood of tears. A long explanation. A sense of relief. She heard me out, and sympathized. That’s all I needed: Someone who knows me, who understands me, who knows how hard I’ve fought to be well in spite of so many obstacles. She really understood. And I felt so supported and loved in that moment. Since then, every time I’m on the phone with support, I remember my sister being supportive and awesome and it makes the process a little easier. It’s crazy how much a 15-minute conversation can make a difference! I texted her the day after she called, thanking her and telling her how much it means to have her support. “I...

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AWAP Wednesday: How NOT to FREAK OUT about the Affordable Care Act

Posted by on Oct 2, 2013 in Affordable Care Act, featured, Health Care Reform | 8 comments

Babes, I’m going to keep this one short and sweet, because all the good stuff is in the video. Yesterday, October 1, marked the first day that Americans can sign up for insurance under the Affordable Care Act. And it’s been a MADHOUSE. Meanwhile, loads of you have been asking me what I think about the Affordable Care Act…so I answered your questions. But you’ve also asked me how I’m staying calm. Am I? Really? Watch the video and you be the judge… As always, babes, the action happens down in the comments. Please please please leave me any tips on remaining calm below. And ask me questions for future AWAP Wednesday videos. Do you LOVE this video? Please use the social share buttons below to tell the world. Thanks! XO, Editrix...

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How do I feel about the Affordable Care Act?

Posted by on Oct 1, 2013 in Affordable Care Act, featured, Health Care Reform | 6 comments

Everyone is asking me this question today. It’s a total nail biter! So here goes: 1. I feel nervous. No one seems to know exactly how this is all going to work. We’re getting conflicting reports from all over, and even resources we previously thought were reliable are being kinda flakey. A perfect example: I’d been told over and over that in Illinois, we would not have an insurance exchange, and that we would go to to buy our coverage. Then a couple days ago, Governor Quinn announced Get Covered Illinois. What? Who? Aw, hell no. I mean, thank you. I guess. 2. I feel excited. The ACA means tons and tons (read: millions) of people with pre-existing conditions are guaranteed coverage. Sure, we don’t know yet know what it will cost exactly, but we know we can get it. Which is WAY better than being uninsured.  3. I feel pissed off. Our stupid stupid government is fighting about this, which is scaring everyone even more. We have idiots who are supposed to be representing us who are spreading inaccuracies and lies about what the coverage will do and cost. So we have people like my pal Erin Kotecki Vest (aka Queen of Spain) receiving infusions mere hours before Republicans are threatening to shut down the government over the ACA. For real? I would love to see how any of those guys would handle taking care of a family of kids and spouse, dealing with massive chronic illness, with only one income. Good luck, tools. 4. I feel cheered on by my community. As much as it bummed me out to see Erin’s Instagram post last night, I also felt cheered on. We’ve got such a kick-ass chronic illness support community online and we’re all here to help each other. I’m so grateful for that. It means I can fumble along right there with y’all and not be embarrassed if I make a mistake or get emotional. Whew! 5. I feel tentative. I’m not making any fast moves. I know half the country is online today, clogging the interwebs with traffic and shutting down sites. I’m holding back. I’ve spoken with a few experts in the field, and they have ALL recommended that I wait a couple weeks before I dig deep into the system—let’s let all the kinks get worked out, right? So I’m not going to enroll this week, or maybe even this month. For coverage that starts on January 1, 2014, we need to enroll by December 15. We’ve got time. 6. I feel scared. Yea, I’m just like you. I’m going to have to go through this process. I don’t know what it’s going to...

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