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!