Memorial for Laura Kenyon, author of Still’s Life— May 10th, 2013

For those of you that didn’t know Laura or of Laura’s advocacy work, please go and check out her blog, Still’s Life. She said it herself, she was a glass half full kind of girl. She was always there with snark or sarcasm, or a terrible pun to ease the pain and embarrassment of some of the symptoms patients like us go through. Despite the incredibly aggressive nature of her disease (not to mention the comorbid conditions), she managed to remain thankful and thoughtful in the darkest of days. I know I am not alone when I say that her ability to keep that glass half full and the grace with which she endured her Still’s Disease inspired (and still does) me to get up and live regularly.

Laura’s story, though incredible, is not unheard of in the autoimmune community. She had tried biologic after biologic; Orencia, Kineret, Enbrel, you name it. She would find temporary or limited relief and eventually end up in a serious system flare, hospital bound. Finally, Laura had run out of biologics to try and her last option was a radical one: extensive chemotherapy to eradicate her existing immune system and undergo a stem cell transplant.

Laura never made it to her first chemotherapy appointment. She also never made it to her wedding. But she was the only person I know who could possibly manage to plan both a wedding and a stem cell transplant at the same time. 

On May 10th, at 4pm UK time (11am EST), we will hold a memorial of sorts at the For the Love of Laura memorial Facebook page for 10 minutes. Please stop by, share a memory, share your sentiments, share a moment of silence, anything at all. Take a moment and say a prayer or kind thought for her and her loved ones— her fiance Matt especially. 

If you’re an Arthritis advocate, take a moment to remember that you are helping to carry on Laura’s legacy. We as patient advocates do not just advocate for ourselves. We advocate for an entire community of people, and we advocate for those in our community that we have lost— whether we realize it or not, we carry on the legacy of the advocates before us. On May 10th, we will remember and acknowledge Laura’s advocacy. 

Please reblog, retweet to spread the word and to spread her story.

Will you join us in celebration of an incredible woman who left an incredible legacy behind?

World Autoimmune Arthritis Day 2013: Free Registration! Spread Awareness and Participate from Home!

It’s time! The second annual World Autoimmune Arthritis Day (WAAD) will be held on May 20th, 2013!


Hosted by the International Autoimmune Arthritis Movement, this year is going to be bigger and better than before— 3x the size of the 2012 event! Join those of us at IAAM and WAAD to shine a light on Autoimmune Arthritis!

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What is WAAD?

  • WAAD is a 47-hour, global time zone, virtual awareness convention where patients, patient experts, health care professionals, nonprofit organizations, loved ones, and supporters to come together to spread awareness and education of Autoimmune Arthritis. 


How do I get involved?

On the day of the event, log on and explore!

  • Live Chats held by ePatient experts-- watch and participate in live chats on a variety of topics. Yours truly will be hosting a presentation and live chat on self esteem/self love, so make sure you stop by and chat with me!

  • Presentations by patient experts on a variety of topics, all dedicated to aiding the Autoimmune Arthritis patient.
  • Vendor booths

  • Resource Library with hundreds of patient resources and a blog list for Autoimmune Arthritis patients and their loved ones

  • Ask the Experts Panel-- connect with health care professionals and submit your questions

  • Patient Nominated Best of the Best Rheumatologists— a list compiled by patients of the best rheumatologists. Looking for a new rheumy? Stop by and check out the list. Nominate YOUR rheumatologist here!
  • 36 nonprofit organizations will be holding booths from all over the world, from South Africa to New Zealand!

  • The Lounge— an open chat to connect with other WAAD attendees and Autoimmune Arthritis patients.

  • Check out the WAAD Android Apple app: A Day in the Life With Autoimmune Arthritis (!)

  • Enter the WAAD2013 Raffle and much more



What is Autoimmune Arthritis?

  • Autoimmune Arthritis encompasses: Rheumatoid Arthritis, Juvenile (autoimmune) Arthritis (JIA/JRA), Still’s Disease, Mixed Connective Tissue Disease, Undifferentiated Connective Tissue Disease, Lupus, Ankylosing Spondylitis, Psoriatic Arthritis, Sjogren’s Syndrome, and more.

  • Read more about types of Autoimmune Arthritis and other related conditions (e.g., Vasculitis, Inflammatory Bowel Disease).



How do I sign up?

We want to see YOU there! Reblog, retweet, follow along on Twitter, and spread the word! Will you be attending WAAD 2013?

On the Radar for May Awareness Events! Get Involved, Get Educated, Get Empowered!

I’m baaack! Final exams are over, I moved out of my horrible apartment complex, and am home in south Florida for a little while to regroup, see doctors, and focus on May advocacy events.

Speaking of advocacy events, these should be on your radar this month:

  1. World Autoimmune Arthritis Day! May 20, 2013— second annual WAAD! This time, it’s going to be twice the size of last year’s event! I will be giving a presentation on self esteem, self love, and autoimmune arthritis. More to come about how to register (it’s completely free!), what you can expect, and how to attend from the comfort of your couch!* Not sure what qualifies as Autoimmune Arthritis? Learn more here!

  2. For the Love of Laura. If you don’t already know, there has been a facebook page established in Laura’s (of Still’s Life.com— you can read more about her here) memory. On May 10th, there will be a 10 minute memorial/moment of silence and Laura’s family asks that you attend the page for the event. Please stop by and share some love, a kind story, or little bit about how Laura’s blog/story reached you. More details to come.

  3. Arthritis Awareness Month— this year’s theme is I Am the Face of Arthritis. More info soon about how to participate and what you can expect here on Chronic Curve to celebrate the month.

  4. World Lupus Day— May 10th, 2013. Don’t forget to sign the awareness pledge!

  5. World Ankylosing Spondylitis Day— May 4, 2013! How many of you Walked Your AS off in celebration this year? 


Check back shortly for more event pages this week.

Q:what are you finals week essentials? Chronic illness style

Anonymous
  1. Ungodly amounts of Starbucks caffe mocha with extra espresso shot(s) and low fat milk
  2. Or a white chocolate mocha
  3. Water, twice the amount of my coffee intake at least.
  4. Pain medication
  5. Tylenol
  6. Lidoderm patches
  7. Heating pad(s)
  8. Ice packs (Peas by CVS)
  9. Ludens throat drops
  10. The ultimate 90’s dance playlist
  11. Nike dri-fit shorts and Victoria’s Secret boyfriend-fit sweats
  12. Easy recipes, easy food options that don’t require a ton of time/work to put together (ask if you want my go-to options)
  13. 3 minute dance parties, preferably with my friends and/or roommate(s) who enjoy learning MC Hammer’s Can’t Touch This choreography
  14. Various 8tracks playlists
  15. When all else fails, Prednisone.

Plus my ideal study environment, which I’ve written about before :) 

Final Exam Check In: How are you guys?

Checking in! How are you guys doing? Are you hanging in there with final exams and flares?

Are any of you done with exams? Mine started yesterday— got a 92 on my first one! Only two more for me. What about you? Reach out if you’re struggling either here or on twitter with #spooniestudent.

What exams do you have coming up? How are you coping with chronic pain/chronic disease and your exams?

It’s That Time Again: Final Exams and Chronic Illness

You know the drill. It’s a dreaded week and a half (or month if you start preparing in advance like some of us) for most undergraduate and graduate students, but throw a chronic illness or chronic pain into the mix and you’re in for a bumpy ride.

Gear up the tea or coffee, the pain meds, a comfortable study environment, and muster up all the strength you have!

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And in case you need a little help, here’s a repost of all of my College and Chronic Illness posts thus far.

You can see the rest of my college and chronic illness/pain-related posts here.

Good luck, keep calm, and may the odds be ever in your favor.

I will be back to regular posting in May! In the mean time, find me on Twitter, Instagram, and tweet me with #spooniestudent!