What Would Rheumatoid Awareness Mean To Me?

Rheumatoid Awareness Day is Feb. 2!  RA Warrior is featuring a Blog Carnival to invite other Rheumatoid Patient bloggers to add our voice for awareness of this chronic, systemic, incurable autoimmune disease. 

The first and most important thing that would be different if every one on the planet were aware of Rheumatoid Disease (aka Rheumatoid Arthritis) is that there would be more money for research. More research would lead to better treatments and hopefully, a cure. There is no cure for RD.

On a more fundamental level, if physicians and other healthcare providers were more aware, it would lead to earlier diagnosis, better patient care, and better outcomes. Having to fight for good care is incredibly frustrating, and for many patients, is stymied by the shortage of rheumatologists in their area. Pediatric rheumatologists, like the one who diagnosed me, are very rare. Many pediatric Rheumatoid patients have to travel to see their doctor; some families move for better care for their children with Rheumatoid disease.

On an interpersonal note, if Rheumatoid patients enjoyed awareness among our loved ones and strangers alike, we wouldn’t have to fight ignorance, judgments, and drama at home and out in the world. 

We would have more help and more understanding from our partners, spouses, children, families, coworkers, and community. We wouldn't face invalidating comments like "you're too young" or "you should try such-and-such home remedy."  We wouldn’t have an abnormally high divorce rate on top of the tremendous difficulty of living with Rheumatoid Disease.

In the four years since I began actively promoting awareness of my disease, speaking out as a patient, and advocating for Rheumatoid patients, I have seen the tide start to turn. In my 30th year with Rheumatoid Disease, I have great hope for a future in which all of these will become a reality.


Carry on!
Shannon

P.S. - Check out other bloggers participating in RAWarrior’s Blog Carnival. Express your support by changing your social media profiles to increase awareness of Rheumatoid Disease (aka Rheumatoid Arthritis). Take a look here to find graphics you can save and use in your social media profiles to spread awareness of this 2nd annual event!  

It’s easy to spread awareness on Facebook by joining the online event and sharing to your FB profile! You can also add an RD ribbon to your Twitter and Facebook profile picture.

Importantly, you can make a donation to the RPF to be matched by Crescendo Bioscience.  No donation is too small to help make a difference!

Press Release for Rheumatoid Awareness Day: http://rheum4us.org/press-release-rheumatoid-arthritis-awareness-day 

The Best-Laid Plans

"The best-laid schemes o' mice an' men
Gang aft agley…” 
- Robert Burns, "To a Mouse, on Turning Her Up in Her Nest with the Plough,” 1785

Hibernating with my sweet rescue Basset girl

The above quote paraphrased in English reads, “The best-laid plans of mice and men often go awry.” 

I’ve been away from my blog for many months. To be sure, many bloggers find themselves in a similar situation. When life is happening and you are sick every day, something has to give in order that you may meet your personal obligations. Often that which is not crucial to survival gets ignored.

I have managed to continue to participate in the conversations on Facebook and Twitter, but I am reminded that social media platforms may come and go, but blogging will remain.

In this, my 30th year with Rheumatoid Disease, I am excited about the plans I have for this space. Not only is a redesign and move to WordPress on RheumatoidPatient.com on the way, but my Evernote account boasts quite a list of topics and private rants waiting to be fleshed out and polished for public consumption. 

Every week there are new scientific studies to report upon, as well as fresh epiphanies gleaned through daily living with Rheumatoid Disease. Communicating online with other patients with RD and other inflammatory autoimmune disorders and chronic illness yields new insights; frequently, these are actionable. Encouraging fellow patients to better advocate for themselves with loved ones and healthcare providers (HCPs) is a primary reason I participate in these conversations. 

There is also a major push in the healthcare world to make care more “patient-centered.” Dare I say it has become trendy! Yet it seems medicine, like other traditional, entrenched professions, is extremely slow to change. Every week there is news on the #epatient and #participatorymedicine front, which is central to our experiences as chronically ill people, but is more universal than that. Eventually every one of us humans will be a patient. 

So you can expect some personal thoughts from me, as well as curated content from the most relevant thought leaders in rheumatology, personalized medicine, participatory medicine, and the e-patient movement. I have met so many inspiring activists who I look forward to bringing to the attention of anyone following my journey.

Carry on!
Shannon

P.S. - Rheumatoid Awareness Day is Feb. 2! I’ll be participating in RAWarrior’s Blog Carnival, as well as changing my social media profiles to increase awareness of Rheumatoid Disease (aka Rheumatoid Arthritis). Take a look here to find graphics you can save and use in your social media profiles to spread awareness of this 2nd annual event!  It’s easy to spread awareness on Facebook by joining the online event and sharing to your FB profile! Check out RAD gear so you can spread Rheumatoid awareness in real life (IRL)! Lastly, make a donation to the RPF to be matched by Crescendo Bioscience!

Rheumatoid Arthritis Blogger Summit and Rethink RA

On May 31, 2013, I was pleased to attend the first Rheumatoid Arthritis Blogger Summit, sponsored by and courtesy of, Pfizer, Inc. 

The Summit

RethinKit available at http://rethinkra.com/.

The one-day event was filled with lively group discussions about a variety of topics of interest to us Rheumatoid patient bloggers, including how pharma can help to meet the information needs of the RA community, the role of pharma in social media (in a highly regulated industry), and what it is like to actually live (and blog) life with Rheumatoid Disease.   


Rethink RA
We RA bloggers received exciting sneak peeks of a brand neutral program launching June 19 (that's tomorrow!), designed to educate our community in several aspects of managing our disease. 

Seamus Mullen at work in the kitchen.
Look for his RethinkRA Events here:
http://cooking.rethinkra.com/events

This program features the legendary Seamus Mullen, chef, author of Hero Food, and owner of Tertulia, a top restaurant in New York City, for education and inspiration. Seamus has RA, and offered us many helpful tips for managing RA in the kitchen.  

(L-R) Dana Symons (from http://waters-edge.blogspot.com/
and @dsymons on Twitter), Seamus Mullen, and me.

We were treated to an insightful healthy cooking demonstration for lunch and were bowled over! The delicious, anti-inflammatory, lunchtime demo that we got to enjoy eating was a super fun highlight of the summit.

Times Square with (L-R)
Britt Johnson (http://www.thehurtblogger.com/)
and Angela Lundberg (http://inflamed.wordpress.com/).

The Conversation 

One wonderful aspect of the trip to NYC was the opportunity to meet other RA advocates and bloggers with whom I had communicated via Twitter, Facebook, and social media, as well as several faces new to me. 

I look forward to continuing the conversation with both the advocates and pharma representatives I met at the RA Blogger Summit. The organizers at Pfizer were all very generous and eager to listen. They also took care of our travel, which would have been prohibitive for many of us to participate otherwise. Thanks to the wonderful team at Pfizer, Inc.!

Opening the doors of communication between Rheumatoid patients and those who work to make our lives better seems, to me, a great goal. Special thanks also to Seamus Mullen for opening up and sharing his tips and stories about his life with RA!

Rheumatoid Disease Awareness: My Onset Story, Part II

May is Arthritis Awareness Month. While I personally believe the term "Rheumatoid Arthritis" is imprecise and prefer “Rheumatoid Disease” to reflect its systemic nature, there is no doubt that arthritis is a prominent feature. 

This month I stand with my friends who fight similar diseases that feature arthritis as a major symptom, such as Lupus, Ankylosing Spondylitis (AS), Psoriatic Arthritis (PsA), and Juvenile Idiopathic Arthritis (JIA), among others.

Where I left off my onset story, I was ten years old. Seronegative and with no known family history, I remained undiagnosed. After a drained knee, steroid injections, and immobilization, I returned to ballet, tap, and tennis.

Fast forward to Eighth Grade. I transferred to a new school, with all its challenges. We had an ice storm in Atlanta during Christmas break. Here, ice shuts down the metropolitan area, so I went sledding with friends.

Halfway down the hill on my sled there was an oncoming car. To avoid speeding out in front of the car I veered, hitting a mailbox. I prevented collision with the car. On that note we called it a day, going inside for dry clothes and hot chocolate.

Amelia Island with my best friend Katie. Age 15.
Swollen right knee hidden strategically.

While we defrosted at my best friend, Katie's, house, my knee felt odd. I propped it up; it was swollen to grapefruit size and hurt a lot. I knew it was bad news.

The next day I saw mom's orthopedic doctor again. He referred me to a pediatric orthopedic surgeon, who concurred that I had likely torn my anterior cruciate ligament (ACL). I had arthroscopic surgery the following day to investigate and fix the damage done. The surgeon was prepared to repair the ligament with a bovine one if torn. What he found when he went into my knee was a surprise.

He found a stretched ligament, with damage to cartilage and synovial tissue that had all the hallmarks of Juvenile Rheumatoid Arthritis (JRA), which required a synovectomy. This diagnosis was confirmed when I used crutches during recovery and my other knee "blew up.” I was immediately referred to a pediatric rheumatologist. 

Fresh off of crutches (and braces!).
Age 14, with my 9-year-old sister.

My bilateral arthritis symptoms led to a diagnosis of pauciarticular Juvenile Rheumatoid Arthritis (JRA). This is Rheumatoid Disease that affects three or fewer joints in a child. My parents and I were told I would likely outgrow it, or that it would "burn out" by the end of adolescence. Treatment began with eight Bayer aspirin per day during my six-month long recovery from surgery. I was sidelined indefinitely from dance, tennis, and P.E. to preserve my stretched ligament and prevent further damage.

My Junior Prom, Age 16.

We believed my physicians when they said that I should outgrow my disease. I made plans for my future, working around my limitations. I focused on studio art and science, volunteering at my pediatric sports medicine PT. My astronaut/scientist dreams evolved into doctor/artist ones.

We all were caught off guard when Rheumatoid Disease would prove to derail my life repeatedly, leading me down many unexpected paths and teaching me fresh lessons.

My Onset Story, Part I

Rheumatoid Awareness Day: My Onset Story, Part I

What an exciting day! The 1st Rheumatoid Awareness Day organized by the Rheumatoid Patient Foundation is today, 2/2/2013! Just as Punxsutawney Phil came out of his burrow this morning to mark Groundhog Day, today is a “coming out day” for me as a long-time Rheumatoid Disease Patient.

I have shared pieces of my onset story with members of the #rheum community on Twitter over the past couple of years, but have never published it. Today I add my voice to many others for the sake of Rheumatoid Disease awareness. You may recognize these patterns.

One ganglion cyst is visible here on my left hand.

Around age four, I developed ganglion cysts on the tops of my hands. I remember finding them gross and uncomfortable. I was terrified the doctor would drain them, or use the old-fashioned remedy of striking them with a tome to “pop” them. Luckily, after a couple of years, they went away.

Happy with my dad and siblings. 70's awesomeness.

According to my mother, during my childhood, I frequently complained of pain in my legs. I was small for my age, diagnosed with a one-and-a-half-year growth delay. Curiously, my pain was explained away as "growing pains" by my pediatrician. 

A sufferer of frequent respiratory infections, I missed many days of elementary school. I remember daily exhaustion, barely able to stay awake in school from about 2nd grade on. I despised P.E., which usually involved team sports with my peers, who were all larger, more developed, and more athletic. I was always the last to be chosen for the team.

My extracurricular activities away from school were much better, but very tiring. I loved ballet and tap dance, tennis, piano - anything where I was allowed to progress at my own pace.

When I was 10 I went with my family on a two-week trip. I was paired with my grandmother, and we walked and walked, eager to see and experience everything. We visited several major museums, a favorite pastime. During one daylong visit my knees both ballooned; they were unrecognizably boggy and painful.

When we returned home, my mother took me to her adult orthopedic specialist. He drained my right knee, immobilized it for several weeks, and ran blood tests, looking for autoimmune arthritis. Everything came out negative. My mother was asked about family history, and she gave him no indication of any, because she did not know of any. I was sent back to my activities after the swelling receded.

We thought this episode was over and life would go back to normal. We were wrong.

My Onset Story, Part II 

November - A Month to Be Thankful

Over the past three weeks I have seen daily posts on social media from family and friends enumerating blessings for which they are thankful during this month of Thanksgiving. These posts in my feed have inspired me to ponder the things in my life for which I am most thankful, as well.

As in previous years, I am thankful for my family and friends. For a roof over my head and food on the table. For my sweetheart and for my gentle little dogs who keep me company. That I am still here in my 38th year. But this year I can share that I am thankful that so much work is being done by good people to find new treatments and a cure for Rheumatoid Disease, a.k.a. Rheumatoid Arthritis.

I know this because I was a volunteer at the annual scientific meeting of the American College of Rheumatology (ACR) in Washington, D.C. last week with the Rheumatoid Patient Foundation. This was my second year helping with the RPF's booth in the exhibit hall, but was able to explore more of the conference this year. To be able to read endless posters and meet scientists representing research in Rheumatology and Immunology from around the world was my pleasure and privilege. We also met many clinicians and individuals from the pharmaceutical industry and other patient advocacy organizations who stopped by our booth to find out what the RPF is all about.

#Rheum Tweetup w/Rheumatology stakeholders,
including patients and clinicians from around the world!

We, the Rheumatoid Patient Foundation, are proud to be an organization conceived and created by patients, for patients. We want to open the door for better communication between patients and clinicians, and between patients and researchers. We patients yearn to be part of the solution! We ask to help those dedicated to helping us.

Improving lives by educating and supporting patients, and improving care for all Rheumatoid Disease patients by endorsing a patient-centered approach, is what the RPF is about. This Thanksgiving I am thankful for Kelly Young, Katie Beth Young, the Board of Directors, our Advisory Board, and volunteers for working to give Rheumatoid Disease patients a voice.