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!

 

Today is Virtual Advocacy Day!

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

The Lupus Foundation of America is calling all Lupus Warriors into action

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"!

My Next Chapter: Benlysta

My Journey with Benlysta:  Infusion #1

In January, after the initial consultation with my rheumatologist, was told I'm a good candidate for Benlysta treatment.  Benlysta is a prescription medication, intravenous infusion, used to treat adults with active systemic lupus erythematosus (SLE, or lupus).  It's the first drug approved by the FDA specifically for the treatment of lupus, in over 50 years.

I was excited about the possibility of finding relief from my lupus symptoms, even if only from some of them.  After living with lupus for 19+ years, I've taken just about every medication on the market:  Plaquenil, NSAIDs, Methotrexate, Imuran, prednisone, muscles relaxers, anti-depressants, antibiotics, pain medication (for acute & chronic pain), Remicade, steroid injections in just about every joint in my body, over-the-counter remedies, vitamins, supplements, etc.; and, the list goes on. Some worked better than others and some didn't work at all.  I was thrilled and hopeful for the first time in a long time.

It took 2 - 3 weeks to acquire approval from my medical insurance company.  Once that happened, the infusion nurse called to schedule my first infusion and explain the process.  She was so kind, patient and answered all of my questions.  I was both excited and nervous all at the same time!

Feb. 13th:  Infusion Day

 I arrived at the doctors office early.  I had on comfortable clothes, a sweater in case I got chilled, reading material and snacks.  The nurse came to collect me & we walked back to the infusion room.  It was a large room with sunlight pouring in and 6 large chairs on one side of the room across from the nurses station.  There were several people already there in various stages of infusions.  The nurse got me situated in an overstuffed leather recliner that looked more comfortable than my bed!

Leading up to this day, I'd been a little anxious about the infusion process.  You see, I'm a self-prescribed needle phobe …. I hate them!  Every time I have blood drawn is an exercise in mental yoga!  You'd think after 20 years of being poked and prodded I'd be used to it.  Not so much. I'm aware it's an issue and  have tried various methods over the years for dealing with it.

Generally, I deploy the "distraction" method … think of anything other than what's sticking in my arm!  I avoid looking directly at the IV/needle, focus on my deep breathing exercises and as long as the nurse keeps me talking, I'm usually okay.  And can't go wrong with my fave topic … my pup,
Giggles!      

How cute is she?

And then things started to get FUZZY ….

The infusion nurse began prepping me: took my blood pressure, temperature, dose of Tylenol and asked a bunch of questions prior to inserting the IV.  I was a tad nervous and anxious, but felt had things well under control.  Nurse was aware of my needle phobia & doing an awesome job of chatting me up!  The next thing I knew she said the IV in … all done.  Wow, that was fast & didn't even feel it.  Very impressed.  Then, as the steroid began flowing through the IV, I started feeling lightheaded.  Despite being seated in a big comfy recliner, I was getting quite dizzy.  I slowed my breathing down and took deep breaths, but it worsened.  I informed the nurse as the dizziness continued.  My field of vision became blurry and fuzzy; as if, the room was closing in around me.  

I felt sweaty and chilled all at the same time and the nausea was escalating!  My blood pressure had dropped like a rock in a bucket of water!  The nurse was fanning my face & monitoring my blood pressure.  Thought maybe I needed a jolt of something so asked for some juice and started eating the saltines I brought …. drank some apple juice and the dizziness & nausea began to subside; and, slowly I returned to normal (whatever that means, ha!).  Phewww, crisis averted!

After that rough start, I busied myself with reading, texting, looking at cute dog photos; and the hour flew by quickly.

When I walked outside into the Florida sunshine, I felt a huge sense of accomplishment!!!

Sometimes You have to Hit the RESET Button in Life!!

Life Happens

Giggles in Florida

To say it's been awhile since I last posted an entry is an understatement!

Instead of throwing a bunch of excuses out there, let's use my life as an example and possibly as a learning tool for anyone going through an even remotely similar situation.  And, I know you're out there … don't be shy.

Let's admit it, we all strive to do everything we say we're going to do (make that much needed doctor appointment, walk the dog more, spend more time with family or friends, prepare a blog entry, etc.).  But, life gets in the way and there is only so much energy to go around within each 24 hour day.  Add on top of that, if you're living with a chronic illness such as lupus, sometimes circumstances can become so overwhelming you just give up trying.

Managing the stress of life and a chronic illness can range from challenging (on a good day) to downright exhausting and frustrating (on those days when everything seems to be going wrong).  You know those days … I call them the "Triple Threat" days.  You've heard the expression trouble comes in 3's?  For example:  my insurance company refusing to pay for a medication I've been taking for 20 years and charging $960 for 3 month supply, the car needing a new alternator (ouch!), and being awakened at 3 a.m. to the dog throwing up some unknown substance all over the rug! And fortunately, got the poor girl outside prior to another form of explosive substance occurred....

And Life Happens Again ….

If you're one of the millions of folks living with lupus, or fill in the blank with any other autoimmune disease or chronic illness, you know what it's like to manage your life.  Life happens!  Sometimes all it takes is the "check engine" light coming on in your vehicle to throw a wrench into things and be reduced to a large puddle of tears.

And sometimes, it's a more serious set of circumstances … such as selling your home of 11 years, moving to a new home in a new state and then having to evacuate for a Category 4 hurricane called "Michael"!

Yes, that really happened to me this past year, but I'm back and Giggles & I are doing okay!  After all, we are living at the beach!

Is it time to hit your RESET button?

My Next Chapter

Coming Soon - my journey with the new lupus drug called Benlysta.  

Today, Feb. 13th, is my first IV infusion, so wish me luck and I'll let you know how it goes.  

Arresting Lupus Blog selected by Feedspot as one of the Top 30 Lupus Blogs!

Selected #30 on Feedspot "Top 30 Lupus Blogs Winners"

I want to say thank you to Feedspot for recognizing the Top 30 Lupus Blogs and selecting my blog, Arresting Lupus, as one of the Top 30 Lupus Blogs on the web!

I'm honored to be among the list and sincerely thank all of the Lupus Bloggers who have paved the way over the past 10 years and making it possible for newer blogs to thrive!

Feedspot maintains a comprehensive list of top bloggers and I'm thrilled to receive the recognition!

Thank you so much,

Much love,

Lisa and Giggles

Giggles helps me fight lupus every day!

May is Lupus Awareness Month

Lupus Awareness Month

We can all take action in the fight against lupus, a cruel and mysterious disease.  Lupus is an autoimmune disease that strikes without warning, has unpredictable and sometimes fatal effects, lasts a lifetime, and has no known cause and no known cure!  Lupus affects millions of people in the United States and around the world.  Despite its prevalence, nearly two thirds of the public know little or nothing about it.  Learn what you can do to help and take action by visiting www.lupus.org/awareness.

Ways you can take action:

• Put on Purple Day, Friday, May 18, 2018 - Wear purple proudly on May 18th to show your support for the millions of Americans whose lives are affected by lupus.
• Visit Lupus Foundation of America on Facebook, Twitter and Instagram for awareness and information.
• Make a donation to support our efforts to advance lupus research during Lupus Awareness Month. 
• Take the KNOW LUPUS challenge at lupus.org/know and challenge your friends so that together we can create a future without lupus.

Still Accepting 2018 Lupus Walk Donations!!

And it's still not too late to support my fundraising efforts for the 2018 Annual Walk for Lupus.  Donations are accepted through May 31, 2018.

To Donate:  http://chapters.lupus.org/goto/arrestinglupus


I sincerely thank everyone who has taken a moment to visit my blog!  Whether you are new to lupus awareness, a seasoned veteran or a caregiver, the more we talk about it the more people learn of its life threatening effects.