Tuesday, February 2, 2016

Rheumatoid Awareness Day

For most of the world, when they think of February 2nd, they think of Ground Hog's Day. But for me, today is Rheumatoid Awareness Day. When I was diagnosed with this disease, I knew next to nothing about it and I did not know anyone in my age group that had been diagnosed with the disease, so it is my hope that by sharing my experience with RA, I will raise some awareness and help others achieve an early diagnosis, which is the key to effective treatment of this chronic disease.

Since I've only had this disease for 2.5 years, I'm still learning how to talk about the disease with authority, but one area I can speak with confidence about is the diagnosis process. When I started to deal with the symptoms of RA in May of 2013, I consulted Dr. Google (like many of us do) and early on I saw that I had some of the symptoms of RA. However, the information I found online indicated that it typically affects women after age 40. I was 32 at the time and thought, "this couldn't be happening to me - I'm too young."  So I pushed aside the chance of an RA diagnosis. 

Then when I was home in August of 2013, I was in so much pain that my dad had to carry my suitcase upstairs for me because I could not grasp the handle. And my mom saw me cringing as I walked down the stairs in the morning due to the pain in my feet.  And my sister-in-law's ears pricked up when I commented about how the swelling in my hand had mysteriously moved from one hand to the other. My mom and sister-in-law both expressed concerns that I was exhibiting RA symptoms and strongly encouraged me to go back to the doctor again and demand that they get to the bottom of what was causing my pain and swelling. 

So when I got back to Charlotte, I made yet another appointment with my primary care physician and told her that something did not seem right. I had seen her several times over the course of the summer but she had diagnosed my pain and swelling as tendinitis. Ultimately, I was diagnosed with RA after my blood work was reviewed and I was physically evaluated by a Rheumatologist.

It's not a coincidence that Rheuamtoid Awareness Day falls on Groundhog's day. As the founder of the Rheumatoid Patient Foundation says: "(You can) compare disease onset to the moment the groundhog comes out of his hole to look for his shadow. It's impossible to predict how aggressive the disease will be or whether treatments will be effective. The six weeks that the groundhog forecasts correspond to the short window of opportunity for people with rheumatoid disease to get early diagnosis and treatment, which has been shown to be a crucial component of positive outcome."

While I hope that none of my readers are impacted by this disease, my hope is that by sharing my symptoms and experience with this disease, it will raise the awareness and help someone else get diagnosed during that short window of opportunity so that they, too, can effectively manage their disease as I have been able to.

To learn more about RA and read others Rheumatoid Awareness Day (RAD) post, check out the carnival of RAD carnival on RA Warrior's site.

10 comments:

Charbelle4 said...

I remember what a crappy year that was overall! I'm so sorry!

It's certainly not something that you would ever think about at 32! I heard yesterday when I was in the dermatologists office that I was young to be having skin cancer. I was like really? One of my really close friends had a place that had to be removed in college from her face. I felt incredibly fortunate mine was on my leg. Lesson - wear sunscreen!

I think by you raising awareness you potentially help someone else and they will be so thankful to you!

Jeanie said...

Lisa, you have done much good already alerting us to RA and its impact on life -- and how it can affect even the young. Fascinating about the Groundhog Day thing. Makes sense but I never would have thought about.

Your sharing not only about your struggle but also about your triumphs -- marathons and feeling good after so long of feeling bad -- is a beacon of hope to all. And yes, it may come back. But you know that it doesn't have to stay active constantly. You've already proved that. Survivors make the best advocates and you are doing that beautifully!

Nora said...

Jeanie always leaves the best comments; hard to follow something like that up! Thank you for being open and honest, sharing your journey with us, not sugarcoating and being an advocate for yourself those 2.5 years ago. It may sound silly but I'm proud of you for sharing your RA experience with your readers and friends; you're incredibly strong, full of grace and I love & admire you for that! <3

Kelly Young said...

Hi Lisa. I just saw your post for Rheumatoid Awareness Day. Send me an email if you'd like to have it included in the blog carnival we're putting together this week. :)

Kelly (She Wears a Red Sox Cap) said...

I hate that you have to deal with this but I'm so glad you share your story so others can get the right diagnosis. It's times like this I am really thankful for the Internet. I often have myself or Max diagnosed before we even see the doctor!

Jenny said...

I would have dismissed the idea of RA too at that age, but you are fortunate to have had clever, caring people around you to help get that early diagnosis. I hope that you are feeling better now and are looking forward to a nice vacation in Mexico.

Stephany said...

I don't like that you have this disease, but I do like that you got your diagnosis in time to make this disease manageable for you. <3

Amber said...

I think it's awesome you are trying to raise awareness about this! Like you said, it is so great and lucky that you were diagnosed early. I have really realized lately that it is so important for us to be advocates for our own health. Not only are doctors busy but they are humans and make mistakes and don't always look closely at results and etc. I'm so glad your mom and SIL pushed you to go back to the doctor a second time. I'm glad that for the most part having RA has been manageable for you and hopefully the flare ups like you had this past month continue to be very few and far between!

San said...

I think it's wonderful how openly you talk about your diagnosis - although I wish you didn't have to deal with this disease.

I "hate" when doctors dismiss a possible diagnosis, because you don't fit the age group (yes, statistically it affects older women, but that doesn't mean they could have tested you any way). I also "hate" that here in the US, you basically have to educate yourself and then ask the right questions at the doctor's office to be properly diagnosed (at least that's my personal experience) and I just think that's not right. They are the experts!

I am glad though they finally digangosed you and were able to treat you properly!

Elizabeth Riggs said...

Thank you for your really good post! Glad it was diagnosed as early as it was. Since I'm seronegative and had really odd symptoms, I wasn't diagnosed for 25 YEARS! Denial may have been a part of it - my mother had recently died from complications of RA and the MDs I saw had treated her over the years. They loved her and just didn't want to have to diagnose her daughter with the same vile disease. I remain seronegative, but my symptomatology is sufficient so the docs agree I have RA. My disease is still atypical, and it is slowly getting worse. But that is the way the dice have rolled.