It’s Been Awhile…

So sorry about that.  But guess what?  I haven’t been blogging because my life turned upside down, in a good way. Cue the drumroll………….Xeljanz is working!!! It’s been almost 6 months since I starting taking this brand spanking new biologic, and in the 3.5 years since my diagnosis, nothing has worked better!  Here’s where I am now:

1) Back to work! I was on disability for a year, and now I’m back to full-time. Of course, I’m blessed to have a job I love, to work for a flexible company, to have the support of a great manager and team, and to work from home most days. So, I’m lucky. And I work my tail off. Which is good, because Medrol has given me lots of excess tail. All the more reason to focus on #3. 😉

2) On fewer drugs. Unplanned side effects and allergic reactions forced me to pare down my med list, and now, I’ve been able to go further.  On a daily basis, I take 4 drugs for RA, 2 for fibromyalgia, 1 for Sjogren’s, 2 for medication side effects, and 1 pain medication.  And my doses of Medrol and Percocet are both half or less of what they were 6-8 months ago.  The synovitis in my knees and ankles is significant, so I’m not going to drop further, but I’ll take 8mg/day from 32mg/day.  Oh yeah!

One of our many adventures!

One of our many adventures!

3) Exercising! This is HUGE for me. My joints swell during and after, and sometimes it’s hard to motivate, but wow, it feels good. In 2013, I’ve been hiking, biking, walking, swimming, and canoeing.  A few years ago, I promised myself that when I turned 40, I would finish a triathlon.  Not too long ago, I thought I might not make that goal, since I turn 40 this year.  But I just signed up for a sprint tri in late September (my amazing wife and partner in all things is doing the duathlon that day, so we’ll be training together!), and I can’t wait! I’ll walk the entire 5K to finish if I have to…I know I can do this!

4) Fewer doc appointments. I am blessed to have lots of great doctors.  But, it’s strange to be a 30 something with such a big team, and I definitely don’t love that I have to see most of them every 1-3 months.  In the last 2 months, my opthamologist and hematologist dropped me from every 3 to every 6 months, my pain management specialist dropped me from every three months to annually (whoa!), and last week, I had my biggest success.  My rheumatologist, who I’ve been seeing monthly since January 2010, just changed my appointment schedule to every other month. In June, I have exactly ZERO doctor appointments scheduled (assuming I don’t get sick…excuse me while I run and knock on some wood!).

5) Just feeling better! I still have up and down days, of course, but my better days outnumber my worse ones lately.  Fatigue, which has been my worst symptom, has improved noticeably (though it’s still more debilitating than pain…seems harder to just “tough out”). I’m still the “tin woman” every morning, but often for only 1.5 hours these days.  My morning stiffness used to last for double that every morning. The livedo reticularis on my arms and legs is much better, meaning my blood vessels are less inflamed.  I’m still anemic, but my hemoglobin and hematocrit levels have stabilized somewhat.

So, lots of good news, which really means that I’ve been adjusting to a more active life including work and lots more out-and-about fun with Lora and Bear. 🙂 But, I promise to get back here more often.  I’m well aware that things can change in an instant, but I’m savoring every moment, and hoping 2013 has been a year of good news for all of you as well! Drop me a note and let me know how things are, whether you’re taking Xeljanz, another biologic, supporting someone who is, or just stopping by to say ‘hi’.  Thanks so much for your support…I’ve missed you!

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.

Perfectly Said

During our summer travels, I’ve been blessed to visit with lots of family and friends.  This means that I’ve answered the “how are you feeling?” question many times.  Lately, my answer’s gotten complicated, so Lora and I have been discussing how I should best respond.

One of my favorite bloggers, Rheumatoid Arthritis Guy, nails it with this post.  I have never been happier or more content, despite the fact that my RA is uncontrolled, my physical health is poor, and as of now, I am unable to work.  Because of my attitude, I feel in control, which is absolutely huge in a life of daily unknowns.  He perfectly articulates “how I’m feeling”, even when “how I’m feeling” also includes bedridden.

The seriousness of chronic illness cannot be underestimated.  Neither can the power we have inside ourselves to deal positively with it.

Thank you RA Guy for helping me finding the right words!

Malfoy’s Law

We all have them.  Days where everything seems to go wrong.  Today was one for me, and it started early.  Urged by my clock and the dogs, I finally dragged myself from bed around 8:15am, feeling like the Tin Man without his oil can.  That’s nothing unusual, of course.

Then I begin the process of letting our two dogs out.  Both are lab mixes.  Sam weighs in at 60 pounds, and Cooper is close to 75.  I leave them inside, and step onto the lanai.  I open and shut the door a few times, then whistle, all while checking for movement in between the fence slats.  If all is quiet, the dogs join me on the lanai, and Sam speaks. If all is still quiet, they finally head into the yard.

Why this extended ritual?  Well, next door, there is a tiny little terrier mix named Lily.  She probably weighs less than 10 pounds, but she loves to whip Sam and Cooper into a frenzy.  She rushes to the fence and barks at them, and they dig under the fence, howling and barking intensely.  (Aside: they are such sweet dogs, and the only time we see them behave this way is with this instigator dog.  It’s weird.) Worse yet, our neighbors do not seem to care about the damage this causes, to us or potentially to her.  I have spoken to them twice, but nothing has changed.  Even for Lora, it’s a big challenge to drag 135 pounds of dog back into the house.  For me, it’s next to impossible.

This morning, it happened.  The dogs were finishing their morning business and about to come in when Lily appeared out of nowhere.  I screamed in horror, as I was still in full “tin woman” mode, and tried to get them inside one by one.  I finally did, but not without suffering lots of pain and two near-falls.

When I got to my 9:45am doctor appointment, most of the parking lot was under construction.  I finally found a spot far, far away from the entrance, and had to limp my way slowly there.  Thank goodness for my snazzy rollator! By the time I got there, I was 10 minutes late and drenched in sweat.  Oh, how I love August in Tampa! 😉

Later, I got home to find that we had received the replacement Liverpool soccer jersey we had ordered for Bear.  The original was sent in a medium, when I ordered a large.  I opened it excitedly, and found that it was…..another medium.

These things happen, of course.  Conventional wisdom says it’s just a “Murphy’s Law” day.  But for those of us with chronic illnesses, everyday life requires monumental effort already – no twists or turns are needed.  It seems downright evil to turn all the routine stuff upside down for a day, when everyday life is upside down already.  Therefore, I decided “Murphy” must have an evil twin, “Malfoy”, who haunts us.  Full disclosure: we also have a Roomba who we have named “Murphy”. He is awesome, and I cannot associate him with a day like today, so I knew it must’ve been someone else. 🙂

So, “Malfoy’s Law” is what got me today.  I wonder if I can find a wand at Ollivander’s in Orlando that will help me break the spell next time.

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.

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.