Saturday, March 23, 2019

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!

 

Tuesday, March 5, 2019

Today is Virtual Advocacy Day!



To read my lupus story, click on "Lisa's Story" under Labels.





Please join all of your fellow Lupus Warriors and lupus advocates today in fighting for more lupus research funding.

The 2019 National Lupus Advocacy Summit is underway today on Capitol Hill, in Washington, D.C.
Over 350 lupus advocates are on the hill to urge Congress to increase lupus research funding in our fight against this deadly disease.

You and I can join them, virtually!!! Make your voice heard by participating in the Lupus Foundation of America's Virtual Advocacy Day.

As the advocates are meeting with Members of Congress, they need us to flood their emails and social media with messages asking them to join us in our fight.

They need to hear from us to understand the massive impact that lupus has on our daily lives and the critical need to provide affordable health care for those living with chronic diseases, such as lupus.

Here's how to participate:


Step 1:  Go to www.lupus.org to the Lupus Foundation of America website and click on the "Advocate Now" button to reach your representatives with customizable messages.

Step 2:  Share your story by using #LupusAdvocacy, #RisingVoices and engaging with the LFA on Twitter and Facebook.


To read my lupus story, please click on "Lisa's Story" under Labels.



Benlysta Infusion #2

I have good news …. Benlysta  IV Infusion #2 was successfully completed!

On my way to the appointment, I found myself actually looking forward to it.  Did not want to have a repeat performance of the 1st infusion; whereas, I had a vasovagal response.  I remembered to breathe this time and not look at the actual needle or IV insert.

The infusion room nurses are wonderful … can't say enough about their impact on the patients' physical and emotional well-being during the infusion process.

My Benlysta Infusion Experience


Step 1:  The appointment began the same as the first one: nurses got me situated in big comfy recliner, took my blood pressure, temperature, weight, etc.  The weighing is important at each infusion appointment because the Benlysta dose is based on your weight.  The nurse must mix the dose each time.

Step 2:  Nurse administers dose of Tylenol as a precaution.

Step 3:  The IV connection is inserted to the vein of your choice.

Step 4:  The steroid solution is administered via the IV while the nurse mixes your Benlysta dose.

Step 5:  Benlysta Infusion begins (lasts approximately 1 hour).


The Power of Pups


So, it didn't take long for the conversation to take a turn.   A simple "what are you reading"?  And before you know it, I pull out my phone to show all of my cute pics of Giggles.  Then the nurses gather around to show me their cute pup photos.  The next hour flew by and completely distracted me from the whole IV sticking in my arm and pumping powerful medication into my body concept!

It's amazing the power of pups!


Giggles at sunset



Join me for the next infusion and discover "what's in my Benlysta go-bag"!