Rheumatoid Awareness Day Blog Carnival 2016

Welcome to the Rheumatoid Awareness Day Blog Carnival

This Rheumatoid Awareness Day Blog Carnival is in coordination with the Rheumatoid Awareness Day Blog Challenge by the Rheumatoid Patient Foundation. Many websites and blogs participated in RAD and published about #theRealRD facts. If you’ve published a post for RAD that’s not included here, you can leave your link in a comment.

7 #TheRealRD Facts

Which one of the 7 #TheRealRD facts might make a difference to you if the world understood it? Which ones do people have difficulty grasping? Thinking back, was there ever a time you misunderstood some of them?

1) Rheumatoid disease is not a type of arthritis; arthritis is just one symptom.
2) Current treatments are not adequate for many people with moderate to severe rheumatoid disease.
3) Rheumatoid disease manifests itself differently in each person and even in the same person over time.
4) RD research is severely underfunded in the U.S. at about 1/12 per patient rate of similar diseases.
5) Rheumatoid disease is often an invisible illness.
6) Early aggressive disease treatment has been shown to produce the best outcomes.
7) Remission is rare. Daily pain is not.

Let the blog carnival commence

1) In honor of Rheumatoid Awareness Day, Amber at Journey to the Knot posted On the Other Side of Disease, which focused on Fact #7.

Amber counts her blessings, not only her third baby on the way, but also remission from rheumatoid disease. She writes movingly about what life was like before remission: “terrified that the prison of a body I was caged in…” If nothing else makes people understand the need for increased research on RA / RD, this should. As she raises her little ones, this young mother deserves to be able live her life not imprisoned in a cage or fearing it, and so do the rest of us.

2) For her spirited Rheumatoid Awareness Day blog post, Mischelle at Facets of Living with RA posted Rheumatoid Disease Awareness Day, focusing on Facts 3 and 4.

Mischelle writes about what awareness really means and whether it’s possible to really know another’s suffering. She uses effective analogies like this one: “I thought if one more person compares a disease that has leveled my life to rubble to their pinky ‘killing’ them I might just be fitted for a orange jumpsuit. One is imprisoned by their own body…” Mischelle affirms she’s decided that if she has to be an RD survivor, she wants to be one who’s surviving with hope.

3) In honor of Rheumatoid Awareness Day, Elizabeth at Handicap Accommodations posted Rheumatoid Disease Is Different For Each Person, focusing on Fact #3.

Elizabeth describes her surprise in beginning to recognize the vast differences in the experiences of people living with rheumatoid disease (PRD). She gives specific examples how her RD affects her versus how it might be for other PRD. She explains fatigue as her big battle. Yet pain and disability are still a problem, even though her hands don’t look “gnarly.”

4) For her creative Rheumatoid Awareness Day blog post, Annette at Here’s Your Gold Watch – Rheutired posted The Real Rheumatoid Disease: You Mean It’s Permanent? focusing on Facts 1 and 3.

Annette says the groundhog is our symbol because “RD just never stops.” She offers encouragement to deal with the persistence of the disease, and other things we might get tired of such as dismissive doctors, comorbidities, and how differently people receive medical care, with older patients receiving less aggressive treatment. The key: “They live out of a book and we live out of our bodies.”

5) For his heartfelt Rheumatoid Awareness Day blog post, Vince at Epistle for Joy & Hope posted Invisible Pain – Invisible Illness, focusing on Fact #5.

Vince writes about his long journey with RA / RD since age 10. He says people have often been unaware of his battle with “the invisible pain of flares, fevers and fatigue.” As a person determined to be “carefree and compassionate,” Vince says he rarely felt the way he looked on the outside. His solution is one that will make my family smile as I’ve muttered it out loud hundreds of times: If only pain could have a color… then people could see how much someone is suffering.

6) In her frank Rheumatoid Awareness Day post, Dana at The Water’s Edge posted 4th Annual Rheumatoid Awareness Day: The Real RD, focusing on Fact #1.

Dana writes about reasons RD is not a type of arthritis, although joint inflammation (arthritis) is usually the most prominent symptom of RD. While her joint symptoms have been well controlled, Dana has begun to struggle with other systemic problems related to her RD, as it affects her eyes and skin. She explains the “ugly truth” RD is a systemic disease that is “still there” even on her good days and she knows “complications and systemic manifestations of RD can be very severe or even deadly.”

7) In a passionate Rheumatoid Awareness Day blog post, Lene at the Seated View posted The Best Way to Achieve Rheumatoid Arthritis Remission and Barriers to Its Use, focusing on aggressive treatment strategies as Fact #6.

Lene traces the historical progress of treating RA / RS from the old pyramid approach to the modern treat to target method. She considers reasons many people with rheumatoid disease are not treated with the most current / aggressive approach. Lene responds to these issues by highlighting the value of lives lived productively by people whose disease is treated successfully. Lene strongly advocates for progress in attitudes toward treating rheumatoid disease.

8) For her Rheumatoid Awareness Day blog post Lisa at Lisa’s Yarns posted RHEUMATOID AWARENESS DAY, focusing on the early treatment window illustrated in Fact #6.

Lisa describes her diagnosis story, and how difficult it was at first to know that it was RA /RD. Family members who suspected RA / RD urged her to go back to the doctor until she had answers. Lisa shares that she now realizes how little she knew about RA / RD. She makes a good case for greater awareness to take advantage of a window of opportunity for better response to treatment, which fortunately was effective for her.

9) In her Rheumatoid Awareness Day blog post, Judith at United Advocacy Australia posted Rheumatoid Awareness Day Blog Challenge Fact #5 – Rheumatoid Disease is often an Invisible Illness. #THEREALRD, focusing on Facts 5 and 1.

Judith shows reasons rheumatoid disease is often an invisible illness. She posts a long list of common RA / RD problems, many of which are not joint related. Judith says “Rheumatoid Disease is MORE THAN ARTHRITIS” and asks people who don’t have the disease to not assume people with RD are well because their symptoms are not obvious.

10) For her Rheumatoid Awareness Day blog post, Veronique at Chronic Illness Blog posted Rheumatoid Awareness Day: What Causes RA / RD? Links, and Stories of Recovery, focusing especially on Facts 1 and 3.

She points out the systemic nature of rheumatoid disease and that joint inflammation is not always the first symptom of RA / RD. Veronique also points out the variety of experiences with the disease, including in it’s onset. She discusses the possible role of trauma as a trigger for the disease.

11) In his Rheumatoid Awareness Day blog post, Andrew at Living with Rheumatoid Arthritis posted Rheumatoid Disease Awareness Day – Feb 2 focusing on Fact #2.

Sadly, as Andrew points out, many people with rheumatoid disease do not respond to treatments currently available, over a third in fact. Andrew is awaiting the beginning of treatment number 12, with a rheumatologist dedicated to finding something that will help him.

12) In her Rheumatoid Awareness Day blog post, Martha at Martha Spong posted I confess: Glenn Frey, a cough, RA, and me, which focused on Facts 1 and 5.

Martha relates the story of her own chest infection to the story of Glenn Frey’s death. She explains what many don’t know about living with a chronic illness like RA /RD, and how they commonly respond when we try to explain it: uninterested. She writes about the deep feelings resulting from the invisibility of a serious illness that’s not what it’s assumed to be.

13) In her Rheumatoid Awareness Day blog, Saundra at Blog RA Junction posted Rheumatoid Awareness Day: Help Share RA Information, focusing mostly on Fact #1.

Saundra points out that RAD is in February, heart disease awareness month. She explains why rheumatoid disease is different from “arthritis” (aka osteoarthritis), but a systemic disease related to immune function. She lists effects of the disease on the body beyond the joints such as anemia, fever, and fatigue.

Dear warriors and friends,

This was a tough blog post for me to write. Reading these experiences all in one day, some in remission and some still hoping to find relief, gives a good overview of life with rheumatoid disease. And it properly underscores facts of the #theRealRD.

I’ve never singled out one entry before but I want to ask you to be sure to check out Martha’s blog post if you’ve ever struggled with anger in response to RD. Martha wrote this blog before she knew I was holding a carnival for Rheumatoid Awareness Day blogs. I’m pretty sure you’ll agree I had to include it.

I’m not like Martha. I’ve never responded to treatments as she has. But I’ve walked through many similar experiences and her post tugged at my heart. Not being able to open a doorknob …or worrying when you can’t cook homemade meals for your family …having your brave child face it by your side …keeping it all to yourself because even the people who love you can’t handle the truth. Doesn’t it help to know you aren’t alone? I hope you’ll bookmark this page and make time to read all the entries this week.

Much love. Keep fighting.

Recommended reading

• Rheumatoid Arthritis Anger
• 20 Rheumatoid Arthritis Patient Facts I learned from RA Patients
• Glenn Frey’s Cause of Death
• An Absolutely Vile Disease, the “a” Word, & New RA Animated Video