at the Water's Edge

Living life and learning all I can along the way!

5 Things I've Learned Through Life with Rheumatoid Disease


**This post is a part of the first annual RA Blog Week, spurred on by RADiabetes. For more information and the full list of prompts, click here.

RA Blog Week Day 4 Prompt: "Five things I have learned – write about the five things you have learned about yourself, or RA. Perhaps you have learned what things like physical pain, injections, or morning fatigue are like? Perhaps you have learned new things about yourself?"

I think it's often true that the difficult times in our lives are the most formative and provide the greatest opportunities to grow and learn as a person. Life with rheumatoid disease certainly provides ample trials, but it is up to me to learn something and somehow become a better person because of them. Here are five things that I have learned from and/or about rheumatoid disease:

1. This Disease is Ruthless
This disease is ruthless. It doesn't discriminate. Anyone can get it. It sometimes it attacks sneakily, and sometimes it comes on hard and strong. Treating rheumatoid disease (RD) early and aggressively provides your best chance of preventing irreversible damage, disability and daily pain -- but it's still no guarantee. Even as someone who has responded well to treatments and lives a mostly normal life, I've still learned the hard way not to ignore my symptoms. After a flare that lasted a few months (which I tried to convince myself was not that bad) -- and was between my already scheduled rheumatology appointments -- my wrists suffered permanent joint damage which will affect their functionality for the rest of my life. Inflammation can be destructive and it is fast-acting. If you think you might have rheumatoid disease, or are already diagnosed, do not delay treatment. If you have a flare, contact your doctor -- it may be time to change treatment regimes. I've been fortunate to have my disease under decent control most of the time, but just when I start to think I'm fine, a new symptom shows up to remind me that RD is still there. There is no cure, and this disease is progressive and chronic -- tending to get worse over time. In short: it's an ugly thing. It is not "just arthritis" and people need to know that.

2. There's Always Someone who is Worse Off
I used to have pity parties for myself. I HATE being sick. Being diagnosed with a chronic illness? It was devastating. I was young (diagnosed at age 19), yet my body felt old and beat up, sore every morning and often waking me up at night. It wasn't fair. Poor me. And then, I met some other people with this ugly disease, and I learned something enlightening: I didn't have it so bad. The swelling and soreness that I experienced was nothing compared to the daily pain and disability endured by many people with rheumatoid disease. The medications I took did help significantly. I soon learned there was about 1/3 of the rheumatoid patient population who didn't respond to treatments at all. Yikes! And guess what: most of these people were not out there moping and feeling sorry for themselves. They were doing what they could to make the most of each day -- whatever that may look like. Okay, lesson learned: time to straighten up and focus on others instead of myself. Which brings me to my next point.

3. Something Beautiful Happens when People Come Together
Having been humbled by the others I met online with rheumatoid disease, I decided it was high time I join in this community and see how I can contribute. I jumped on the Twitter hashtag "#rheum" as soon as Kelly of RAWarrior created it -- and it was the best thing that happened to me related to RD. I met lots of other people in similar situations to myself who I was able to learn from and who encouraged me -- and I, in turn, tried to be there and encourage others. I have made some very cool friendships and met some amazing people I never would have met without this disease. Joining together, with a common cause, we've been able to not only bring hope and encouragement to one another, but also bring education and understanding among healthcare professionals and the general public. I am honored to have been able to be a part of patient-led initiatives toward better treatments, care and awareness of rheumatoid disease. When patients, care givers, doctors, researchers, and other healthcare professionals work together, amazing things can be done.

4. We Have a Lot of Work Yet to Do
Rheumatoid Disease treatments and general awareness have come a long ways in the past 10-15 years. But, there's still work to do. Remember that group of patients I mentioned that don't respond to any of the currently available treatments? And the fact that there are only treatments, there is no cure? We need to keep up research that will hopefully someday lead to a cure for this dreadful disease. In the meantime, we need to work to ensure that patients are receiving the best possible care, early diagnoses and access to treatments that can help prevent pain and disability. The strides made by the Rheumatoid Patient Foundation and other patient advocates, coupled with the new research and developments in treatment options all make me very hopeful -- but that doesn't mean we can relax and slow down. Let's keep fighting for a better life for everyone with RD.

5. Some Good can Always be Found
Lastly, rheumatoid disease has taught me that some good can always be found in every situation. There is always hope, there is always something positive to cling to. Life with RD can feel like a losing battle. Some days you may feel overwhelmed, with the future uncertain and the feeling of hopelessness creeps in. But I believe there is always hope. And you can always be grateful for today. In the hardest days you are faced with a choice: giving in to despair or choosing joy despite the circumstance. I'm reminded of this scene in the movie "The Two Towers" of the Lord of the Rings trilogy -- even when things seem hopeless, don't give up:

Life with RD has its share of day-to-day annoyances, too, which I think is where I am more likely to focus on the negative without even realizing it. I think of the inconveniences at the pharmacy when my prescription isn't ready or isn't right -- even after I already talked to them about it (five times): I start to complain and then realize how much there is to be grateful for. Good insurance. Access to medications. A doctor to prescribe them. Treatments that actually work well to keep my disease activity low. Whatever is getting you down, big or small, I challenge you to focus on the good. Some days you have to look harder to find it than others, but I promise it is there. Keep on fighting and never lose hope.

"Even in the darkness light dawns for the upright..." --Psalm 112:4

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Hi there! My name is Dana and I live in West Michigan with my husband, Tom and our dog Copernicus. I created this space as a place to share the things I learn along this journey I call life. I work in marketing and I'm a sort of Jane of All Trades, interested in all things nature, gardening, cooking, exploring and learning new things. This blog is a conglomeration of my interests, hobbies, life and life lessons. Thanks for stopping by!