What's In My Benlysta Infusion Go-Bag?

Example of an Infusion Room 

Benlysta Infusion #3

So, I did it!  I successfully completed my 3rd infusion … a.k.a., "the loading phase" for Benlysta IV infusions.

The term "loading phase" refers to having 3 infusions administered 2 weeks apart from one another.  Thus, completing the first 3 infusions all within the first 4 weeks of beginning the Benlysta therapy.

The 3rd infusion represents sort of a milestone. First, it demonstrates your body's tolerance for the prescription medication.  Generally, any potentially serious side effects or adverse reactions would've reared their ugly head at this point.  

Secondly, the infusions now change to a monthly schedule.  And, it will no longer be necessary to administer steroids thru the IV prophylactically.

My Benlysta "Go-Bag"

So, now that I consider myself an experienced "Benlysta infusion warrior", I've developed a habit of bringing a go-bag to each infusion.  Some of the items are to keep my mind off the needles and IV's and some just for entertainment.  Here's a sampling of its contents:

• apple slices, cheese & crackers, etc.
• phone containing cute dog pics (always put volume on mute)
• water bottle
• smoothie
• SAR book (K9 Search and Rescue)
• Benlysta Infusion Guidebook (discusses the infusion process, possible side effects, actual patient comments, diversion techniques, puzzles and a place to make journal entries for each visit.)
• sweater or light blanket for changes in temperature.

As I mentioned in a previous post, the infusion nurses are amazing at keeping everyone calm and making sure we're as comfortable as can be.  

A Bonus - they always have a very healthy stash of snacks (individual bags of pretzels, cookies, juice, etc.)

My Reward

I believe it's important to take care of yours physical well-being, as well as, your emotional and mental well-being.  Anyone living with a chronic disease like lupus should take a moment to acknowledge their individual daily struggles, speed bumps and roadblocks.

Give yourself a break!  Take time to recognize your struggles and efforts … mine, was completing the 3rd infusion!  Not to mention, the past few weeks I've been experiencing a very painful flare up of arthritis in my left foot/ankle/knee/hip.  Every step I take is excruciating.  Makes walking my dog a chore … that's never a good thing!  My doc ordered an ultrasound to rule out a blood clot and then administered a steroid injection to provide some relief.

Needless to say, by the time the injection began to offer some relief, I was ready for "my reward".

My reward …. Giggles and I drove to St. Joe Beach for a fun filled day.  Of course, I picked a day that was not too hot and not too busy with spring breakers.  I piled on the sunblock and hat and packed a picnic for us and away we went.  Just driving down the coast a short way was enough to feel like I was on vacation!     

Ok, so this is a stock photo because I was too tired to download mine!