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!

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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.