Lookin’ Back In Front of Me…

I offer up this post with a nod to the late, great Stevie Ray Vaughan.

“Tightrope” is a fantastic song. The lyric quoted in this post title is one of my favorites. And it says a lot about my journey with autoimmune disease. In January 2009, I completed my first half marathon. Disclaimer: I have never been a runner, but I walked the Walt Disney World Half Marathon in just over 3 hours, which for me, was a tough physical challenge. The energy, camaraderie, and general adrenaline rush of “race day” hooked me instantly. So I completed another half in November of that same year. This time, I alternated jogging and walking, and finished in 2:55. I was astounded at what my body could accomplish, and addicted to the goal setting, the training, and the race day experience.

Smiles at the finish of the 2009 Disney Half Marathon!

Smiles at the finish of the 2009 Disney Half Marathon!

Three weeks later, I couldn’t get out of bed. My RA diagnosis quickly followed in January 2010, after which came a host of pharmaceuticals and their side effects. Five years later, I have added 50 pounds to my athletic 2009 frame, though my diet is healthier than ever. Percocet, Medrol, and Bio-Freeze are my daily companions, despite maximum dosage levels of Rituxan. I’ve added Sjogren’s, fibromyalgia, Hashimoto’s, gluten intolerance, vitamin D deficiency, and chronic anemia to my list of diagnoses.

When I look at photos of myself from those days, my thoughts take a predictable course:

  1. I start wishing I could turn back the clock. Wishing that none of this had ever happened. Which immediately leads me to…
  2. Stop looking at old photos. Given everything that’s changed, the past feels painful, so I choose instead to look forward.

Of course, the reality is that chronic illness did happen to me. It IS happening to me. In a recent post, I wrote about needing to accept my life as it is. And I cannot plan my best future if I don’t take cues from my past. So, I’m looking back to find inspiration for my life moving forward. I may never look the way I did then, and I may never finish a half marathon in under 3 hours, but I love races, and I can work toward another one.

I can, and I’ve decided that I will. 🙂 My beautiful wife, some awesome friends, and I have signed up for the Las Vegas Rock and Roll Half Marathon, taking place in November 2015. Yes, training will be less consistent and more painful. No, my time won’t be as good. But I’ve got 179 days to get ready, and 4 hours to complete the course. I’m thrilled and frightened in equal measure, but looking forward to the journey!

 

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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!