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Chronic Readers Club Q & A Interview

Chronic Readers Club Q & A Interview

May 2, 2018 | Books, Community Support, Humanity & Society, Inspiration & Motivation, Interviews & Guest Contributors, What’s Hot & Must Know | 1 comment

  Q: What inspired the idea of the Chronic Readers Club? A: Chronic Readers Club was inspired by a combination of things. Since becoming chronically ill, I’ve felt a need to connect with other people who truly understand what my life is like. Being young and...

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  • I AM INVISIBLE NO MORE: PART 1 is now live!!! Link in my bio ☝🏻 ▪️▫️ Invisible disabilities and illnesses are REAL, even if you can
  • TGIF Friyay 🎉💋💅🏻 Enjoy the weekend everyone and don’t forget, World Arthritis Day is tomorrow 🌎💪🏻 #goawayarthritis
  • Amazon Prime changed my life though! 😂 Repost: @holisticworldhealing
  • Watching the sunset at the park 🌅 #nofilter #kidlitwriter
  • ... and that’s a wrap! 🎥🎞 ▪️ The documentary-style film I’ve been planning for awhile now happened today! Couldn’t have asked for a better crew and actors. We had a great time making this and can’t wait to share it with everyone during Invisible Disabilities Week, October 13th - 19th. Stay tuned! #iaminvisiblenomore
  • ✨ The RARA Shop is now live! ✨ Visit the link in my bio or go directly to www.rarashopdesigns.com to see all the items 🛍 I’m wearing my new favorite tank top for the gym called, “Slaying RA all day everyday” or whenever I need some motivation. If you like/love this press that ❤️ button or comment below! Swipe ➡️ to see the full image. #motivationmondayontuesday #gymtime #rara #shop #designs #tshirts #tanktops #rheumatoidarthritis #arthritis #merchandise #meaningful #relatable #humorous
  • So there’s a designer who made this collection above for Paris Fashion week titled, “Attention Seeker” with models, IVs and the word SICK across a bland white shirt. (as stated above). ▪️ I get everyone has a right to express their creativity but some can take it too far or don’t explain their visions. But if his motive was to get people talking and thinking, he sure did. Now I found this ironic because for one of my merchandise items in my RARA Shop, I took the opposite approach to this and made the item with the help of @christallebodiford 👩🏻‍🎨 swipe right ➡️ were we crossed out the word SICK and placed traits you can be besides “sick.” ▪️ The message is simple: you are more than your illness. Yes, it can be a big part of your life and identity (if you choose) , but it doesn’t have to dictate who you are as a person or what you do in life. ▪️ I can say for myself and many others, that when I was diagnosed with JA I kept it personal between immediate family and a few chosen close friends. Otherwise it was pretty much hidden from the outside world. I didn’t want people knowing at the time because as with an illness you go through stages of grief, sadness, acceptance etc. Now I don’t really care who knows or what people may think. It was only several years down the line after experiencing some sh*t, that I wanted to help others, raise awareness and make a positive change in the world. We aren’t attention seekers, we’re just doing it for the cause 👊🏻🌎 You can check my shirt (on next slide) tomorrow when my shop launches and I think @maison_kimhekim should too. No, I’m not a fashion designer. I just love accessories, comfy t-shirts and sweaters, and to express my creativity in various ways. So I decided awhile ago to create some items for the community and donate 10% of the revenue to research for arthritis. 👩🏻‍🔬👨‍🔬 ▪️ #morethanjustsick #rara #shop #designs #tshirt #rheumatoidarthritis #juvenilearthritis #awareness #advocate #activist #forthecause #fashion #fairfashion #disability #chronicillness
  • Some truth to be told on this fine Tuesday morning 🌥🗣 Not all disabilities are visible. That is a, f a c t. Don’t judge a book by its cover or assume you know what’s going on in someone’s life. If you like stickers or want to raise awareness for this cause, or both ..you will find this item in my RaRa Shop, when it goes live at the end of this month. For those of you who like T-shirts, this will be available for both men and women in 15+ colors. Sign up to be the first to know when the shop is live by visiting the link in my bio 💙 . #truthtuesdays #truthbetold #tbt #invisibledisabilities #invisibleillnesses #awareness #rara #risingabovera #shop #stickers
  • ‼️ ATTENTION ‼️ If you, your family member, child or a friend is living with rheumatoid arthritis or juvenile arthritis, then you need to read this and be informed of what is going on in our community on the government level. ▪️ More than 100 patient advocates, including myself, and health care professionals took to Capitol Hill as part of the American College of Rheumatology effort to lobby legislators to support bills that would reform step therapy and increase the rheumatology workforce. ▪️ I am grateful that I was chosen to represent the state of Illinois and meet with members of Congress and their staff in my area, to share my story and discuss these very important issues. I finally got to meet an online friend in person too. Fellow arthritis advocate, Charis. @beingcharisblog Here’s the big takeaway and facts to know (continued in comments below. I know it’s a long read but it’s worth it): ◾️Safe Step Act of 2019 (H.R. 2279) 1. Step therapy has been shown to hurt patients. 2. Did you know 50% of all patients reported having to try two or more different drugs prior to getting the on their doctor prescribed?! Imagine finding a drug that works well for your own personal medical history and needs, and then having a third party to you NO, show us proof it works. When you and your doctor already know it works. 3. Imagine being a young woman wanting to get pregnant but need a certain medication to keep your disease activity in check and keep your baby safe, but insurance say you can’t be on that said drug your doctor recommends. 4. Treatments for rheumatic diseases are not a one-size fits all. 39% of step therapy were stopped because insurance-preferred drugs were ineffective and 20% of the time the patients conditioned worsened. That is scary. 5. About 25% of patients who switched insurance providers were required to repeat step therapy with their new carrier, even if they sent in proof already. 🔹These decisions should remain between the patient and prescribing physician. Two doctors are behind the creation of the Safe Step Act🔹

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