Health Activist Writer’s Month Challenge: Can You Write 30 Posts in 30 Days!?

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It’s that time of year again! Time for the Wego Health Health Activist Writer’s Month Challenge beings on April 1st, 2013. Prompts are already being sent out, so if you like to write, are a health activist, be sure to join the challenge! 

Where to start?

Time to get creative, fellow patient advocates! I can’t wait to read what all of you have to say! Make sure to share and spread the word so other patient activists are able to join us!

HAWM Challenge Day 4: I Write About My Health Because..

Prompt: Reflect on why you write about your health for 15-20 minutes without stopping.

I write because I feel this desire to do something with my pain, with my suffering, with these diseases, other than sit in bed or on my couch and struggle to function. I write because without something positive in my life, without an activity that is productive and helpful for others, I am without a purpose. I am without work, without a passion, without a goal and a dream, without a substance or foundation for a future. I write because I have to. Every fiber of my being compels me to. I write for my life, truthfully. Some people run, some people work, some people sing, paint, create. I write with very little filtration.


I write for others; to give others hope in the face of pain and suffering and disability, to walk the newly diagnosed through those first few months of a new existence. To replace those dreams of medical school and becoming a physician, to replace that 20-year long desire to help others through medicine. I write because it helps me come to terms with my own new existence. It keeps me from denial, and always puts my priorities and thoughts into perspective. I write to connect and to disconnect. I write not for sympathy, but in hopes that through patient advocacy we will find better health care; new research, new medication, more funding, less pharmaceutical company-created advertisement.

I write because I have no other choice.

HAWM Challenge Day 2: Quotation Inspiration

    

Prompt:Quotation Inspiration. Find a quote that inspires you (either positively or negatively) and free write about it for 15 minutes.

“Sometimes you climb out of bed in the morning and you think, I’m not going to make it, but you laugh inside — remembering all the times you’ve felt that way.” — Charles Bukowski

I’ve always had a connection with Bukowski’s writing. I quote him frequently all over Chronic Curve; the main quote on the right hand side bar is a Bukowski quote. This one in particular is always an absolute truth in my life. Regardless of the context in which it was written, the quote is literal for me. Physically, climbing out of bed is one of the hardest tasks to each of my days. There are times where I swing my legs over, struggle to balance myself, and crawl right back under the covers. There are times where I put my legs down and they shake, threaten to give, and I know it’s not going to be a good day. But I always remember this quote, and I remember that regardless of how I am when I wake up, no matter how hopeless I might feel, I always get through it. I have done it before and I will do it again. Again, and again, and again, and again.

And I laugh, because I am far too strong and determined to climb back under those covers. I’ll keep rising up and fighting, starting with that first morning battle of getting out of bed, until I cease to exist.

Because one Bukowski quote is just never enough, I leave you with this for your own writer’s challenge:

         

HAWM Challenge Day 1: Health Time Capsule

        

Prompt: Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it?

In my health time capsule, I’d add an IAAM bracelet, a CURE RHEUM bracelet, a syringe for each of the medications I’ve had to inject, perhaps IV tubing to represent the infusions, all of the hospital bracelets collected thus far, a day’s worth of pills: two Plaquenil, one birth control pill, one omeprazole, two iron supplements, one vitamin D tablet, one zoloft pill, one muscle relaxer, two pain killers, and the rest of the supplements I take which brings the total to about ~15+ pills. I’d add photos of my joints/rash, hair loss, doctor offices and I’d add a photo of myself smiling/enjoying something I love. I’d include some kind of archive of this blog and facebook, and a mix CD of songs that represent my journey with these diseases. I’d add a piece of jewelry I’ve created. Last, I would add a copy of the Spoon Theory along with a small silver spoon, with a note that offers whoever opens it my last spoon.

I’d hope they find truth. The real disease rather than the inadequate commercials and and poor information found in the media. I hope they would find strength and the notion that you can live and live an enriching life despite suffering. That suffering is not the end all be all. I don’t believe I would have learned that were it not for these diseases.

Weekly Link Roundup 3/26/2012

  1. Wego Health Activist Writer’s Month Challenge— Starting April 1st, 2012, health activist writers who take the challenge will have 30 days to complete 30 prompts! Interested in taking the challenge? Click to know more. If you’re signed up and ready to go, don’t forget to share your posts on the WEGO health facebook page and tag your posts on twitter with #HAWMC


  2. Lupus Research Institute on Hill Advocating for Professional Training on Lupus— The need for widespread education has been confirmed by a new study of ~1,000 people including lupus patients, loved ones of people with lupus, and rheumatologist, that shows patients often downplay their symptoms to physicians and loved ones. The findings? 87% of patients report downplaying symptoms to their families. 52% report minimizing symptoms to their physicians. Nearly 3/4, or 72%, of physicians did not believe their patients minimize symptoms. Read more to learn about how the LRI is working to close the communication gap.


  3. Fibromyalgia Gene Discovery: High proportion of patients carry one copy of mutation affecting inflammatory response, brain development— A new study released March 10, 2012, found that patients with chronic widespread pain/FMS had significantly a significantly higher proportion of A1AT polymorphisms when compared to other neurological patients. Also interesting, those with JRA and JIA also had significantly higher amounts of A1AT polymorphisms (63%). To read more about this mutation and mechanism and find out what else this study discovered, click the link.


  4. Calling All Rheumatologists— The number of patients is growing, yet the number of rheumatologists is dwindling. Did you know there is a shortage of rheumatologists? Though this article is dated 2011, the shortage is still around, perhaps worse than before (something I will write about shortly) and especially so for pediatric patients. There are as many as 10 states that have no pediatric rheumatologists whatsoever, but there is hope. Click to read about what the American College of Rheumatology and other groups are doing to encourage an increase of rheumatologists!

Are there any blogs you think should be considered for Blog of the Week? Send me your links!