Sunday, February 24, 2019

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!!!

Wednesday, February 13, 2019

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.