What’s it Like to Have RA?

I’m in the middle of a bad flare, currently trying to get work done from bed. As I was thinking about how to describe how the feeling to my colleagues, friends, and family, I came across this video:

Wow. What a help it would be if, as part of their training, our rheumatologists all wore a suit like this for even half a day! It cannot simulate the pain, of course, but it can provide some idea of what this crushing, invisible disease is like for their patients. Unlike an RA flare, the suit is predictable, and you can remove it anytime you like, but I applaud Dr. Hamburger and his team for dreaming this up.

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Ups and Downs

Xeljanz. It’s been working well on my RA symptoms for the last few months.  During that time, I’ve been squeezing as much life out of every day as I can. Quite frankly, I had forgotten how to balance that kind of “busy-ness”. I definitely overdo it some days, and I pay the price for that, but after the last few years, it feels good to have the energy to even make that choice. If you know me, you know I’ll err on the side of “too much” vs. “too little” whenever I have the chance. For the most part, it’s very much been an “up” time.

So, I didn’t notice at first when my weight started creeping up.  Until my clothes no longer fit.  Until, for the first time in my life (not counting when I was pregnant with my son), I was gaining in my stomach. Usually, my hips, bootie, and thighs are my problem areas.  It was weird.  And it didn’t stop. It hasn’t stopped.  It keeps getting worse. I have also developed horrible GI symptoms (I’ll spare you the details :)), worsening fatigue, and some other odd symptoms unlike those I usually feel with RA.

Like most health issues we spoonies experience, it’s not simple.  I’ve seen an endocrinologist.  She diagnosed me with probable Hashimoto’s Thyroiditis, though my numbers are still barely in the normal range.  I’m on a low dose of Synthroid, which has already helped my fatigue. I’ll go back regularly for blood work (because we all need more of that, right?), and she’s looking at other causes for my new symptoms.  It’s just hard to know if something is amiss in my endocrine system, because I take Medrol every day. So, she’s making educated guesses. Comforting.

In the mean time, the lack of definitive answers combined with my continuing symptoms have earned me another specialist. That’s right…I now have a gastroenterologist! Pretty soon, I’ll have collected the whole set of doctors. I wonder what the prize is when I do! 🙂 He’s also running tests; blood work, of course, and next week, my very first colonoscopy. I’ll write about that lovely experience after, and we’ll see if I get some answers.

My rheumatologist did find a trend in my weight gain though, and it goes back to Xeljanz.  Though it’s not listed in the literature as a side effect, she noted that my weight gain started, very slowly, the month after I went on the drug.  Over the first 3.5 months, I gained 8-10 pounds,  Then, my weight took off like a rocket. I’ve been gaining 5-7 pounds every month for the last four. Since it was the only change in my medication during this time, it seems likely that the RA drug that’s helping me may be causing a very serious side effect. Guess how we find out? I’m off Xeljanz for 45 days, to see what happens to my weight.  If it stabilizes, or starts to come down, I will not be allowed to take Xeljanz again. It was the last biologic available to me — the only one I hadn’t tried — so according to my rheumy, my next option is clinical trials.

Today, I used a cane for the first time in 2013.  My pain levels are so high that I have insomnia (“painsomnia”, a fellow spoonie called it once. I love that!). I’m not sure what the future holds in terms of my mobility. What goes up must come down, I guess.

I tell this story for two reasons.  First, I promised many of you updates on my progress with Xeljanz.  Things have been mostly going well, or so I thought, until this setback. The final jury on my experience is still out though, and I’m not giving up hope. Neither should you. Second, this blog is about awareness.  These diseases are complex, and most of us work with teams of specialists to proactively manage our health.  It’s like another job, in many ways.  Spoonies are superheroes, beating the odds to live their fullest lives every day.  Especially during Invisible Awareness Week, I wanted to recognize this wonderful community.  Here’s to more ups than downs for all of you in the coming weeks and months!

Meningitis and the 2012 Presidential Election

November 6th is just 12 days away, and depending on early voting in your state, your time may already have arrived.  So, I’d like to throw out my endorsement. I know you all have been holding your breath. 🙂 I suspect this:

A)    Will come as no surprise to those of you who know me well.

B)    Will have a slightly smaller impact than that of Former Secretary of State Colin Powell.

My President speaking in my city (Tampa, FL) today!
Photo credit: Scout Tufankjian for Obama for America

There are many, many reasons why I support President Obama again this year.  I believe he is helping to move the economy in the right direction.  He is the only choice for supporters of equal rights for women and LGBT Americans.  Lora and I just got married, but according the federal government and the state where we live, we are no more than strangers!  I could go on for days, but for the purposes of this post, I want to focus on one thing.  Healthcare.  Do I think “Obamacare” is perfect?  Absolutely not.  Do I think doing nothing is infinitely worse, for business, the economy, and especially for Americans?  Absolutely.  To illustrate this, I share my perspective on one current news story.

You have probably heard about the fatal meningitis outbreak caused by tainted methylprednisolone.  As of now, 317 people have been infected, and 24 have died.  It’s horrifying.  This drug is one that many with uncontrolled or flaring rheumatoid arthritis, including me, take daily.  In this instance, the injectable form was used in a procedure called a cervical epidural spinal injection, designed to reduce inflammation, and therefore pain, for a number of different debilitating conditions.

I have had multiple of these injections; my last in June 2012.  It is only by sheer luck that my pain management doctor did not use this compounding pharmacy, or I could be a statistic.  As you might imagine, this sobering fact hit me pretty hard.

If you’ve followed the story, you know that a compounding pharmacy in New England was responsible, and though not regulated by the FDA, this pharmacy and others like it are inexplicably providing these drugs.  This is unacceptable and must change.  Regulations are not optional when human lives are at stake.  Period.

Especially as a “frequent shopper” of the health care system and its pharmaceuticals, I wondered how we got to the point where this could happen, so I dug deeper.  I quickly found the short answer: drug shortages.  These compounding pharmacies are, quite simply, filling a need in the marketplace, something my business brain can understand.  However, given that we’re discussing medicine, and not just any old product, my human brain cannot comprehend.

The reasons for drug shortages are varied and complicated, but there is a glaring one that stands out: corporate profit.  Most of the drugs on the shortage list are older, generic drugs, which don’t make their manufacturers much money.  As an example, there is an older chemotherapy drug, commonly used to fight leukemia in children, called methotrexate that has been on and off the list for the last year.  You may recognize this one from my “Defying Gravity” post, as it is also the most common drug used to treat rheumatoid arthritis. I was affected by the methotrexate shortage about six months ago, as were with thousands in our community. It may not seem like a big deal, until you consider what it would be like to be unable to work or even get out of bed without those drugs. Economic cost indeed.

Methylprednisolone is another, and when FDA- regulated manufacturers didn’t produce enough of the drug to care for patients, compounding pharmacies jumped in to fill the demand.  The result was devastating for hundreds, and to this point, fatal for 24 Americans.  Was lack of corporate profit the only reason for the drug shortage?  Probably not, but it is one very ugly, very alarming part of a complex issue.

And President Obama is the only candidate working to fix it.  A key piece of the Affordable Care Act limits health care companies’ administrative, marketing, and other non-medical costs.  The goal of this is to ensure that the majority of patient premiums are spent on patient care, not kept as profit.  Hopefully, when profit is limited at this step in the supply chain, we will see fewer drug shortages due to lack of corporate profit.  Furthering the solution to this epidemic, the FDA Safety and Innovation Act was signed into law in July.

These solutions are not complete, nor are they foolproof.  They will most certainly need to be adjusted and improved over time.  But after decades of doing nothing while health care costs and corporate profits skyrocketed, the Affordable Care Act represents a bold first step in the right direction.  Additionally, the law provides health care coverage to millions more Americans, as well as those with pre-existing conditions (you know, like Rheumatoid Arthritis), regardless of income or employment status.

He’s got my back, so I’ve got his.
Photo credit: facebook.com/barackobama

Compare our President’s plan to that of Mitt Romney. The former Governor of Massachusetts passed health care reform for his state in 2006, and it has been a success.  Instead of promising to fight for all Americans by further implementing or even improving the Affordable Care Act, his vision for the country involves immediately repealing it.  In its place, he’ll keep the most expensive form of taxpayer health care we have.  Newflash, Governor Romney: emergency rooms don’t cover chronic conditions.

Only one candidate in the 2012 Presidential Election is working for America on this critical issue.  President Obama passed major health care reform in his first term, and will fully implement if granted a second term.  Unfortunately, nothing can save those impacted by the horrors of the meningitis outbreak.  I’m praying for the sick, for the families of those lost, and for an end to the new cases.  Now, we can only hope to learn from this disaster. It starts with our choice on November 6th. President Obama’s got my back, so I’ve got his.

I Can’t. I’m…Busy.

The second half of this week, my body decided to completely rebel against the travel, wedding planning, and general, joyful craziness that has consumed the summer.  I crashed.  Hard.  For the last two days, I’ve barely been able to crawl out of bed.  The energy required for me to type these words is monumental.  But in the moments when I can, it got me thinking.

As usual, the thoughts start with my list.  All the things I need to get done.  How I can’t afford to be sick.  Usually, that leads “Type A” me to a spiral of frustration and emotional distress. I end up canceling plans, apologizing to my family, and feeling generally guilty because I “couldn’t do anything”.

I took a different approach yesterday.  Instead, I looked up the definition of busy.  Here’s what Merriam Webster had to say:

busy   adj \ˈbi-zē\

busi·er busi·est

Definition of BUSY

1a: engaged in action : occupied b: being in use <found the telephone busy>

2: full of activity : bustling <a busy seaport>

3: foolishly or intrusively active : meddling

4: full of distracting detail <a busy design>

Hmm.  Engaged in action.  Yep, my body sure is, housing my out-of-control immune system.  Full of activity? Pre-diagnosis, I did two half-marathons, and had far more energy after each one than I have now.  Intrusively active is my favorite, because duh. Nothing about auto-immune diseases is non-intrusive.  And let’s see.  Full of distracting detail, as in a busy design.  Like the worst floral, plaid, stripe combination in HISTORY, done on VELOUR.

These four definitions reminded me that I am also busy, even when I cannot move an inch.  And I realized that it’s my job to remember all my body is dealing with, even when I feel to myself like I’m doing nothing.  So the next time I don’t get to something, my reason should reflect that instead of unnecessary guilt or shame.  I indeed got busy – just in my own way.

Now if you’ll excuse me…my tea, heating pads, and I are very busy this afternoon.

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.

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.