Choices

What a week.

Like everyone, I spent time yesterday reflecting and remembering one of our country’s most horrifying days.  I watched somber memorials, thought about the continuing conflict we face, and reflected with friends and family on where we were, how we heard, what we did, and how we coped 10 years ago.

A few days before, I read an article on Rheumatoid Arthritis (RA) that contained some sobering statistics:

– Less than 1 percent of people with RA go into remission, even with treatment.

– Within 5 years, 50-70% of us have some disability.

– Half of us will be unable to work within 10 years.

– The five-year survival rate of patients with more than thirty joints involved is   approximately 50%, similar to severe coronary artery disease or stage 4 Hodgkin’s Lymphoma.

– One researcher concluded that there was an average loss of 18 years of life in patients who developed RA before the age of 50.

Given these reminders of life’s fleeting nature, I have two choices:

I can slide into a serious depression. I mean, it’s hard to think positively about the future when reading those statistics and seeing what’s happening in the world.

OR

I can spend every day living my happiest and most authentic life, contributing meaningfully to the world, fighting to help myself and other RA patients beat the statistics, choosing the right thing (even when it’s not the easy thing), and showing love and acceptance to my friends and family.

Sounds downright Pollyanna, I know.  But I figure that when the harsh realities of 9/11 and serious illness are almost too intense to bear, my best hope is to battle back with a ferociously positive, loving response.  Because no matter the circumstance, no matter its difficulty, I will not give in to fear and sadness, not even for a second.  I have a choice.

Polar (Opposites) Summer…

After a whirlwind summer of contradictions, I’m finally back.  The past few months have been a perfect microcosm of life with Rheumatoid Arthritis.  Here’s what happened:

In May, these images filled my days:

That’s right. Lora and I spent a blissful two weeks cruising the Mediterranean Sea.  We explored the ruins of ancient Rome, viewed masterful Renaissance art and architecture in Florence, witnessed the world’s most famous film festival in Cannes, and enjoyed a delicious home-cooked lunch on an olive oil farm in Montenegro.  We even attended a wine tasting on our ship’s lush, green lawn, while overlooking the magical city of Venice.

Sure, I had pain.  Sure, I needed to consciously balance activity and rest each day of the trip.  Even with those limitations, though, I saw and did more than I could have possibly imagined.  Life was perfect.

Fast forward to mid-June, when I took this picture of my ankle:

Sexy, eh?  Not exactly the shape I’d like to accentuate with a pair of Manolos. June was the single worst month I’ve had since my diagnosis. I spent almost 3 weeks in a wheelchair, and 10 days in bed.  Every joint was swollen beyond recognition and I endured constant, excruciating pain, even with regular doses of narcotic pain medications.  I had no idea how I’d make it through.

In early July, I finally started feeling a little better.  When I saw my rheumatologist, she suggested that we try a new biologic (the IV infusion drug I get monthly), given that my disease remains very active.  As a result, RA is doing daily, irreversible damage to my body.  Taking her advice, I started the two month approval process for Actemra.  In two weeks, I’ll get my first dose, and by the end of 2011 (almost 2 years after my diagnosis), I may know if it is helping control my immune system.

I spent July and August working – much to the dismay of my doc, who thinks I should be on disability – and enjoying summer with those I love.  I celebrated some birthdays, and visited family in NC and MI.  Each morning began with an evaluation of my health (good day or bad).  From there, I decided what I could/could not accomplish; at work, at home, and at play.

That’s life with any serious disease: lots of ups and downs, daily unpredictability, and a long and painful treatment road.  During this crazy yet wonderful summer, I experienced all of those in spades.

Happy Arthritis Awareness Month!

May is Arthritis Awareness Month.  And though you may wonder if awareness is really necessary, consider this.  There are over 100 types of arthritis; each with different causes, different symptoms, different severity levels, and different treatments.  This graphic, taken from the link above, illustrates the magnitude of arthritis perfectly:

Copyright © 2005-2011. The HealthCentral Network, Inc. All rights reserved.

Funding for these diseases is dramatically low, given their impact on society.  For example, did you know that:

– Arthritis costs the economy $128 billion annually?
– Almost 300,000 children live with juvenile arthritis?
– By 2030, as many as 67 million Americans are projected to have some form of arthritis?

Please help support awareness and research funding by visiting the links referenced on this site to learn more for yourself.  Or, consider joining The Arthritis Foundation for one of the Arthritis Walks they’re hosting all over the country this month.  The events are family and dog friendly, and you can find one near you here.  I participated last year with an awesome group of friends and family.  I cannot walk this time, but I donated to one of my favorite teams in Tampa.

Thank you for your support – it makes a big difference for all of us!

The RA Rollercoaster

I’m a huge fan of rollercoasters.  My first “big” one was the Gemini at Cedar Point, which I tackled at age 8.  I was immediately addicted to the whole experience: pre-ride anticipation and fear of the unknown, alternating sensations of queasiness and exhilaration while on the track, and afterward, the pure adrenaline rush and that “veni ,vidi, vici” feeling.

Life with RA feels a lot like that.  Last Wednesday, I got my infusion after a two-week delay (a story for another post).  Finally, on Thursday morning, there was a sliver of light at the end of my flare tunnel.  After living with so much pain, I was ecstatic just to engage more fully in everyday life.  I was finally stepping out of the fear and queasiness of the ride, and into the exhilaration.

With tolerable pain levels and a bolstered mood, I spent the weekend enjoying both my productivity and downtime.  I grocery shopped, cooked, did laundry, shuttled Bear to practices, baked a birthday cake, spent a few hours at Disney, and enjoyed a meal with wonderful friends from Michigan.  Nothing too taxing or crazy – just a lovely and normal weekend.  (Okay, I know Disney isn’t “normal” for most, but I’m blessed to be an annual passholder that lives an hour away.) Overall, I suspect these activities sound similar to those that filled your weekend.

Last night, the RA rollercoaster track took an unwelcome turn, as my pain returned.  Over the last few days, I consciously tried to balance my activity with rest, but it wasn’t enough.  The physical pain is tough, but the emotional pain can be even tougher.  This morning, I find myself sad and frustrated that my body responded to “everyday life” as it did, and afraid that I may never break the cycle.

Since this disease is chronic, it’s easy (yet dangerous) to think of RA as a neverending rollercoaster.  If we do, we miss out on the end — the adrenaline rush of life.  Instead, I’m choosing to treat each day as a new ride, balancing my constant fear of the unknown with things I can cheer and conquer.  When I was in high school, my friend Paula and I rode the Gemini 23 times in a row.  Thirteen months past diagnosis, I’ve shattered my own consecutive ride record. I’m competitive, to be sure, but RA is one rollercoaster I’d much rather get off for good.

It Takes a Village…An Open Letter of Thanks

According to the African proverb, this quote finishes with “to raise a child”.  However, I’ve taken some liberties and adapted this familiar phrase.  As I’ve learned over the last year, it also takes a village to battle a chronic disease.  As isolating as the disease can be, there is no way anyone suffering from RA (or any systemic, chronic illness) can survive without support, guidance, understanding, and especially love from those around them.

I’m lucky enough to have many amazing people supporting me, so today’s post is really about two things.  First, my goal of raising awareness is not just about the disease itself, but about ways to live a full life despite its existence.  Our support system is a key element in making this a reality.  Second, these people deserve a huge thank you, so this post is an open letter of gratitude.  Here goes, in no particular order:

  • Thanks to my friends near and far, who give me encouragement, understand when I have to change/cancel plans, and of course, are there to share lots of good times and wine. 🙂
  • Thanks to my doctors and nurses, who take me seriously, remember which veins to stick, work tirelessly to find the right treatments, and never run out of options to try.
  • Thanks to my colleagues and business partners, who are always willing to jump in, are open to Lync calls vs. face-to-face meetings, and open my Diet Cokes when my hands aren’t cooperating.
  • Thanks to Sam and Cooper, my two favorite dogs, who seem to know when I most need comfort or entertainment.
  • Thanks to my family, who are always there (regardless of their physical distance), listen whenever I need to talk, constantly offer to help, and love me unconditionally.
  • Finally, thanks to my sweet Bear and my amazing Lora, without whom I simply would not have survived the past year.  My rocks, both physically and emotionally, and the two people who join me daily on this journey.  I’m constantly amazed by my son’s capacity to understand this illness at such a young age, and by Lora’s unwavering commitment to being and doing whatever I need at that moment.

No words can ever fully express my appreciation for this “village”, but they’re a start.  Thanks for reading, and indulging my note of gratitude.  Sending all of you love and (virtual, pain-free) hugs today and every day…

Lessons from Rocky Balboa

“It ain’t about how hard you can hit. It’s about how hard you can GET hit and keep moving forward. How much you can take, and keep – moving – forward.”
Rocky Balboa

 

I’ve seen this quote, and its General Custer and Vince Lombardi variations, many times, but it really speaks to me now.  You see, I’ve been a hard hitter most of my life (metaphorically speaking, of course).  Proactive, type-a, always pushing myself to be and do more.  This aggressive approach has served me well, and I’m proud of my accomplishments.  I’ve had some adversity, like everyone, but I’ve rarely felt a situation was out of my control.

 

Since developing RA, and especially over the last 6 weeks, the tables have turned.  I’m taking right hooks and haymakers every minute…

 

In late December, I began having a major “flare”, which is RA-speak for increased levels of swelling and pain.  This one, the worst I’ve had in the year since my diagnosis, has affected every joint in my body.  Even with my usual RA drug cocktail, strong pain meds, lots of rest, and Ironman Muscle Spray, I cannot escape the pain, even for a minute.  

 

The flare has caused me to miss some work, though my ability to work virtually much of the time has limited that (BIG thanks to my company and my great team!!!).  It also landed me in a wheelchair during a family outing, and even forced me to reschedule a planned weekend in Las Vegas.

 

As I fight, Rocky’s quote is helping me refocus my energy, strengthening me.  Instead of hitting first, I’m learning to absorb punches, so I can avoid a knockout.  I keep thinking of the scene in Rocky IV, when Rocky encourages Drago to keep hitting him, gaining inner strength from the onslaught.

 

 

I don’t think my victory will end a Cold War :), but I’m borrowing this approach in my battle with RA.  I feel stronger emotionally every day, and am making forward process (like starting this blog), despite getting punched daily by the disease.  Hopefully, the 12th round bell will ring soon on this flare, but I know there will be another in the near future, and I’ll again call on the Italian Stallion for inspiration. 

RA and the “Red Car Syndrome”

I’m generally amazed at the phenomenon known informally as “red car syndrome”.  The concept goes that you buy a new car, and suddenly, you start seeing that same car everywhere you go.  The others were always on the road, but they didn’t have specific meaning to you, so you didn’t notice them before.  Because we have so many messages coming at us every second, we must filter based on what’s important to us, and we do it in every aspect of our lives.

In business, sales/marketing professionals like me spend lots of time working to reach prospects with “active pain” – in other words, when the prospect has full awareness of a problem for which we have a potential solution.  This gives us the best chance of getting past the prospect’s filter and getting a response.

For the last year, RA has been my “red car”.  Sure, it’s not as glamorous as the shiny Corvette my son wants in 10 years :), but now that I am painfully aware (literally) of the disease, I see information about it everywhere.  Until I started having suspicious symptoms in late 2009, I had no idea what RA really was, and I missed the signals in my everyday life.  These days, I see RA references peppered throughout my regular activities:

  • I’ve subscribed to Cooking Light for 10 years, but never noticed the monthly Enbrel ads, which I now review regularly.
  • I’m hugely addicted to Law & Order: SVU, and no, I’m not ashamed to admit it.  When I work from home, I often have it on in the background to keep me company.  Almost every episode contains an ad for one of the biologic treatments, usually Enbrel or Simponi.  Of course, these ads now get my full attention.
  • Last night, I was playing the CSI: Deadly Intent Xbox 360 game (notice a theme in my interests?), and had to research a pill found at the crime scene.  When I looked it up in the medical database, I was shocked to see that it was Methotrexate.   The game explained that it is a drug commonly used in treating certain cancers and autoimmune diseases, and that it’s available in pill and injectable form.  Of course, I knew that, because I’ve been injecting myself with it every Monday evening since March 2010.

I’m not self-centered enough to believe that these messages have just started appearing since I was diagnosed, but wow.  I went from blissfully unaware of the red car to being run over by it daily.  It’s truly shocking to realize how much information is available to us, once we have the capacity to see it.

Where Did This Blog Title Come From?

Why “Rude Awakenings”?  Well, as anyone with RA can tell you, mornings are notoriously tough.  We wake up stiff, swollen, and sometimes, completely unable to move.  It generally takes me 3 hours to feel as limber as I will for the day.  

Since I have a six year old son, a full-time job, and an active dog, it’s not realistic for me to lie in bed until 9 or 10 (though believe me, I take advantage of that opportunity whenever it arises).   So, I’ve found another way to start my mornings.  I often set my alarm hours before I need to start my day.  Trust me, this is a big deal given that I’m the farthest thing from a “morning person”.  While I wait for my body to catch up to me, I meditate.  I spend the time breathing deeply and focusing on three blessings in my life.  It’s turned the rudeness my body delivers in the morning into a daily renewal of my spirit.

Meditation is certainly known to be a beneficial exercise, and is something that many people engage in, so it’s funny that I found my way into a regular practice through illness.  I guess discovery often works that way, so I’m trying to keep the lesson to apply elsewhere.  Positive things can arise from any situation – sometimes we just have to look a bit deeper to find them.

Starting the Conversation…

Until two years ago, my physical health was something that I mostly took for granted.  Sure, I paid attention to the basics…eating (mostly) healthy foods, (sometimes) exercising, and getting regular exams.  However, I never believed I would have to deal with a serious health problem. 

 At age 37, I’m redefining my reality.  Life today includes another companion, Rheumatoid Arthritis (RA).  It’s an autoimmune disease — systemic, serious, and today at least, incurable.  The good news?  The disease is manageable through a combination of medications, therapies, and lifestyle modifications.  When detected early and treated aggressively, people living with RA can reset reality and live a mostly normal and completely happy life.  

I confess I didn’t know much about this disease until I was diagnosed.  Like many others, I heard “arthritis” and thought “senior citizens” and “needs some extra Tylenol”.  However, that’s not even close to the reality for this serious autoimmune disease.  If untreated, RA can lead to severe disability and, in some cases, can be fatal.  It affects roughly 1.3 million people in the US, including 50,000 children.  It is 2 to 3 times more likely to occur in women, most often those between the ages of 30 and 50.

At first, I debated about sharing my story, but with those statistics, my internal debate was a short one.  Through openness about my journey, conversation with others, and work with non-profits like the Arthritis Foundation, I hope to raise awareness, help others, and affect some change. 

What next?  For years, I’ve had a desire to blog.  All that time, I was searching for my voice.  I knew I wanted to start a conversation, selfishly knowing how much I’d grow and learn from a community.  But I never expected health to be my catalyst.  Yet here I am, finally writing my first blog post.  Jeremy will be proud. 🙂

So, this blog is a personal and public journal of my life, and the challenges that come with aggressive Rheumatoid Arthritis.  Through it, I hope to facilitate a conversation to raise awareness and affect change.  Even though I’m early in my journey, I know happiness and normalcy are possible for those with autoimmune diseases, and for those that love us.  So, let’s seek ways to thrive together, despite the daily challenges we face.