Taking The Leap-  My Latest Game of Medical Roulette

Here I am again, doing the med shuffle, or medicine roulette as I have come to call it.  The biologic that worked well for me for a few years stopped getting the job done.  At first, I thought perhaps it was the insanely stressful year I just navigated.  A few months into tackling the fallout of that, I could tell stress wasn’t the only thing causing my persistent flare-ups. Infusion would buy me a week or two of mild symptom relief followed by two or three weeks of counting the days until solace would come again.  Joint pain, brain fog, fatigue, everyone was back on the bus, wearing me down.  It was time for a change.  But change is scary, and changing medications is terrifying! 

Reading the literature on any of the medications that are used to treat RA is enough to cause any sane person to hesitate to give them a try.  Possible side effects and dangers are both numerous and daunting.  Sometimes permanent, occasionally deadly.  The risks are big. Doctors make no effort to hide this, these are big guns for big problems, not to be taken lightly.  But then, RA is not to be taken lightly either.  Given the choice between immobility and exhaustion or taking a leap?  I’m going to have to take that leap every time.  It isn’t in my nature to lie abed and waste away.  I’d make a terrible shut-in.  So, leap it is, on to the next biologic and hope for better symptom control, no whammies.

After months of consideration and a bit of back and forth between myself and my doctor, we honed in on a good candidate for my next medication, another biologic.  That back and forth between myself and my rheumatologist was a crucial part of the process, as I had to remind her of the things that had not worked in the past and reactions I had to previous medications.  I really cannot say it often enough, you are the head of your medical team, nobody knows your history like you do.  Don’t be afraid to remind your medical staff of the things they lost track of.  Never assume they know.  They’re only human, really busy humans at that, so things are bound to be missed.  Be the catcher.

A bit more research and I was ready for my first infusion.  Nervous about how it would go, I asked my husband to come along to my first infusion to keep me company.  Several hours later, I left the infusion center feeling a bit tired and very relieved that nothing alarming had happened. So far so good, I’m tolerating the medicine.  Now two doses into the load phase, I can also say, I’m cautiously optimistic that it is working!  The first sign?  I have energy!  After months of struggling to get through the day, counting down the hours until a reasonable bedtime (for small children), the crippling fatigue is gone. 

Watching my to-done list grow every week fills my heart with hope and excitement.  I have missed that “I can do” feeling.  I can’t wait to put it to use this spring and summer as we start to create the landscape of our dreams at the new house.  New house, new energy, renewed hope, all because I’ve learned when to take that leap. Next up?  More leaping.  Watch for some exciting new additions to the tenacious blog.  Including a name change, new content areas, and a paid subscriber zone just for us.  More on all of that exciting stuff later.  For now, seize the day, take the leap, you may be surprised how well the landing goes!