About Me


If you love sarcasm, guinea pigs, musical theater, and changing the world, you're in the right place! This blog aims to discuss realistically the challenges facing those living with chronic illnesses in today's world, ways to change the healthcare system, and how we can live our best lives while rocking House, MD replica canes.

If you're looking for tips on how to improve healthcare or the doctor-patient relationship, make sure to check out the ePatient tag.

There are some regular theme days where posts center on ideas like medical care (Medical Mondays), terminology (Terminology Tuesdays), silly things (Wacky Wednesdays), mental health (Therapeutic Thursdays), and our relationships with ourselves (Self-care Sundays).

Side note: If self-care and relationships with chronic illnesses interest you, make sure to check out my blog with Creaky Joints or Chronic Sex.

In the past, I've been featured on BlogHer, Everyday Health, and more! I also regularly work with Creaky Joints, Joint Decisions, and the Arthritis Foundation among others.

Want to work with me? Please check out my media kit or my portfolioMake sure to also to read my disclaimers and rules about guest posting.

Who am I?

My name is Kirsten. I'm a writer and chronic illness guru. 

I also love the ukulele.


Oh, also I'm chronically ill and have been for most of my life. I fell ill with Systemic Juvenile Arthritis or Still's Disease in November of 1993. Since then, the diagnoses have just kept coming. I am now diagnosed with fibromyalgia, psoriasis, patellofemoral arthralgia in both knees, anemia, scoliosis, asthma, gluten intolerance, depression, anxiety, and post-traumatic stress disorder. I also have suspected dairy intolerance and Raynaud's phenomenon.


I started NSSD in 2009 when my husband (referred to here as 'T') noticed that I wrote more and more about health over on my first (and, thankfully, defunct) blog. I wrote that first blog to help T and I both learn about my SJIA. In the process, I found my true calling - talking with and helping my fellow chronically badass peeps.

If you'd like to contact me about anything I've posted, the possibility of guest posting, advertising space, product reviews, or more, please email me at kirsten@notstandingstillsdisease.comI only support things I believe in, so don't feel too bad if I decline any offers!

Some posts about the work I do across the healthcare/chronic illness community:











6 comments:

  1. Hi Kirsten! I wanted to let you know that I nominated you on my blog to take part in a fun blogging questionaire. I'm a new blogger and was tagged for this also in order to get to know other bloggers. I hope you participate and have fun doing it!
    https://www.blogger.com/blogger.g?blogID=8575400553136624960#editor/target=post;postID=4419923642925946471

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  2. Hi Kirsten:

    i want you to knwo I got my blog up and will start advertising it tomorrow. I want to thank you for the cool idea and I hope you approve the links back to your work. Let me know how you feel about the result.

    rick

    http://bit.ly/1KC2kIl

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  3. Wow. I have been looking for GOOD blogs to read about chronic illness and yours is fantastic. Super excited to keep reading! I really love the topics you are bravely discussing!

    Genevieve
    www.shipwithnosails.com

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  4. Kristin, I just discovered your blog by following the path of Zone of Openness research. I'm also a blogger, www.health-hats.com. I have MS, am a nurse, an informaticist, leader, Opa, and musician. I co-chair PCORI's Communication and Dissemination Advisory Panel. When I have nothing else to do (right), I like to see how PCORI research helped anyone at the center of care (individuals, care partners, clinicians, direct care and support staff) actually do or decide anything. Anyway, love your site and your blog. To your health and well-being

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    1. How cool! I will definitely check out your site. I love that you're working with PCORI. I got a lot more information on it in early 2015 when I had started an administrative support position with UW Madison's general pediatricians and adolescent medicine physicians. Elizabeth Cox introduced me to it and wanted to get me more involved. That fell through a little bit due to my health and leaving the position, but it's definitely an organization I have a lot of love for. As for 'Zone of Openness,' I found it via several journal articles I was researching regarding patient engagement :)

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  5. How did you find the Zone of Openness information?

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