Monday, May 1, 2017

All About Awareness

It’s Arthritis Awareness Month!  This is a big month for me – not only does this month focus on multiple conditions that I have, but it does so with the support of multiple organizations that I volunteer with.  So without further ado, let’s talk about arthritis!
For starters, the most important thing to be aware of is that arthritis is an umbrella term that covers over 100 different conditions.  Yes, that includes your grandmother’s bad hip – that’s osteoarthritis (OA), a degenerative joint disease caused by wear-and-tear.  But it also includes things like carpal tunnel syndrome, gout, and rheumatoid arthritis (RA).  And then there are my issues

Back in 2007, I started feeling like something was wrong, but I couldn’t quite pinpoint what it was.  My body ached everywhere – a deep, immobilizing pain as if I’d just done an intense workout.  I felt an indescribable fatigue that no amount of sleep (or coffee) could defeat.  I had headaches and stomach aches daily, and often felt dizzy, nauseous, and weak.  In 2008 I was sent to countless specialists for countless tests, but the doctors had no answers for me.  They suggested I was “just depressed” or worse yet, making it up.  After two separate nurses (parents of clients, not actually treating me) suggested that it sounded like fibromyalgia, I began to do my own research.  The more I learned, the more I knew that those two nurses were right.  Still, the doctors continued to dismiss me, to disregard my suffering and deny my pleas for help.  It took another four years before I was officially diagnosed with fibromyalgia.  Treatment does reduce the symptoms a bit, but what meant more than anything was the validation that what I was feeling was real.  That’s why Fibromyalgia Awareness Day (May 12) is so important – it lets other people suffering with this condition know that they are not alone.

As bad as it is, I wish I could say that fibromyalgia was my only ailment.  Sadly, it rarely acts alone; fibromyalgia patients often have a number of overlapping conditions. In 2011 I developed new symptoms: unbearable pain and swelling in my feet and ankles, and rashes on my legs.  Though these didn’t fit with what I was sure was (still undiagnosed) fibromyalgia, they were visible, which meant the doctors could no longer say it was all in my head.  I was told it was “some kind of arthritis,” that it was autoimmune/inflammatory, but the doctor didn’t know exactly what type.  Over time, it progressed, so that my hands often swelled and nearly all joints became painful.  It took another four years of rotating misdiagnoses and failed treatments before we finally figured out that the inflammatory arthritis and other symptoms were part of a rare disease called sarcoidosis.  Like with fibromyalgia, the confirmation of a definitive answer after years of only questions was a huge relief.  Also like with fibromyalgia, the treatment helps to alleviate the symptoms somewhat, but I still have pain and fatigue every day, and a bad flare can knock me out of commission for days or weeks at a time.

In addition to the physical symptoms, these illnesses have a tremendous effect on quality of life.  I’m not able to work, so aside from the loss of income, I’ve had to question who I am without that role/purpose anymore.  The pain from standing, bending, or reaching makes household chores extremely difficult, which means they often don’t get done … leaving me not only looking at the mess, but feeling useless.  The frequent dizziness and fatigue make it risky to drive more than short distances, so that keeps me away from friends who live too far away for me to see (which kind of makes me miss them that much more).  I have more pain and difficulty breathing when it’s cold, and more swelling when it’s hot or humid; I have to avoid the sun because my medication puts me at greater risk of skin cancer, and must be cautious with inclement weather because my compromised immune system can turn a common cold into dangerous pneumonia.  I don’t have the energy to go out often, and frequently have to cancel plans I’ve made.  When I do make plans, I have to consider weather, walking distance/steps/incline, standing time, medications, and more. 

What’s often most frustrating with any of the 100+ conditions that fall under the arthritis umbrella is how easily people dismiss it – and in turn, dismiss those of us living with arthritis.  “Oh, it’s just arthritis,” they say, showing how much they do not understand.  I don’t believe they are being malicious (insensitive, perhaps, but not with bad intent); they just need to be better educated.  And that’s where we come in.  Arthritis Awareness Month gives patients like me several opportunities to speak up about what arthritis truly is –the varieties, the nuances, and the ways that it affects us beyond the defining “painful joint” trait. 

One of my favorite activities for this month is our New York State Legislative Day, a joint venture with the Arthritis Foundation (NY), American College of Rheumatology, and New York State Rheumatology Society.  In many ways, this is a smaller (state-specific) version of the Arthritis Foundation’s Advocacy Summit I attended in March.  At our state capitol, I’ll be presenting on communication strategies to help train new advocates, and then we’ll be meeting with our elected officials to discuss issues such as drug affordability, biosimilars, and step therapy.  I love these meetings because they give us a chance to see our representatives as real people, not as officials so far removed that we’ve only ever seen their picture in a campaign ad.  More importantly, it gives them a chance to see us– not as statistics on a demographics chart, but as real people with real problems asking them for real help.  From my experience, that’s what they actually want to do, so we’re just giving them an opportunity.  It’s empowering to know that we have the ability – despite our disabilities – to affect real change.

Another exciting venture during Arthritis Awareness Month focuses specifically on autoimmune and autoinflammatory diseases with arthritis as a major component.  World Autoimmune/Autoinflammatory Arthritis Day (WAAD) is a global awareness event hosted by IFAA.  The “Day” is actually a 47-hour online event, covering May 20th in all time zones around the world.  WAAD brings together dozens of nonprofit organizations, chronic illness bloggers, and health advocates to offer resources, support, and connections.  Formulated as a virtual race around the world, WAAD17 makes it fun to spread awareness via social media while learning about the latest offerings for patients (and those who care about us).

A final event gives me the opportunity to multi-task in my efforts: the New York City Walk to Cure Arthritis.  For the past few years, I’ve led a team of friends and family to participate in this walk across the Brooklyn Bridge (click here to join us ).  Prior to the event, we raise funds for arthritis research and support programs (click here to donate ☺).  When we arrive at the park, my team and I serve as volunteers, recruiting more advocates and discussing our legislative concerns.  The walking part of the walk has been its own challenge for me, but certainly an awareness opportunity as well.  In 2014 and 2015, I walked across the bridge and back with my team.  I may have had to pause a few times along the way, but I did it.  Last year was different.  Last year broke my heart.  Last year, I was dealing with a problem in my hip that made it impossible to take a single step without searing pain that often shot down my leg and made my hip and/or knee buckle.  Walking with a cane became even more problematic, as putting all the weight on my “good” side began to cause enough problems in my neck, shoulder, and arm to make it bad side too.   I walked across the starting line with my team, then volunteered at the Mission table while they did the rest.  Though the hip issue has since resolved itself (for now), my ankles and knees will not allow me to take a walk like that anymore.  I have since purchased a mobility scooter, and will likely roll across the bridge, as I cannot bear the thought of sitting it out again.  As much as I hate to need that scooter, it does enable me to participate in activities like this, that I’d otherwise have to miss.  It also offers a clear visual to anyone looking that my arthritis has progressed, and this is a serious disease.  And that is, after all, why we do this.

It’s not always easy to open up like this about my illnesses.  It’s hard enough to see the change in myself, the loss, the disability … and saying it out loud (or typing it on my screen) just makes it that much more real. We always want to show off our best selves, but when I do this, I’m showing my weakness, my fear, my vulnerability.  There’s a reason I do this, though.  For years, I lived with uncertainty and insecurity in addition to the pain.  I reached out for help, and was shut down time and again – by doctors, employers, and those I once thought were friends.  I felt helpless, and useless, and out of my mind.  It saddens me to think how many thousands of people are feeling that right now because they don’t have the answers they need.  If opening up about my experience can save even one person from that isolation, or help one person to be a better friend to someone who is suffering, then it is all worth it.

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