Our Lupus Journey…getting over the hump…and staying there

Oh, hi. Thanks for coming back to read about our voyage through this abyss called Lupus and all of it’s wonderful complications.  I didn’t write yesterday because my son lost his fidget spinner (fidget spinner.com in case you want to see what it is) and I literally moved his full size mattress off the bed to look for it and then put it back on the trundle.  I pulled my back out for nothing because the toy wasn’t there.  But, I digress.

We were discussing the devastation of the diagnosis of any chronic illness and the different complications that can arise–in Olivia’s case, blood clots.  It takes an incredible team of doctors along with strong support from your tribe to conquer the physical and emotional toll serious illness takes on your body.  As Olivia began to recover, she participated in home bound tutoring so she wouldn’t fall behind in school.  I am happy to report she has maintained straight A’s and made National Junior Honor Society all while dealing with the monster in the background.  Also, our family joined a wonderful support program at Hasbro Children’s Hospital called TALC which stands for The Adolescent Leadership Council.  An amazing group of chronically ill teens and their parents meet monthly to eat dinner and discuss topics that are relevant to coping with a chronic illness as a teen or a parent.

We were going along status quo until my warrior went to the allergist.  We had tests and then blood tests which showed an Ig E mediated response to peanuts.  In other words, this poor kid has developed peanut, tree nut, and several other food allergies. We carry this around now wherever we go. A hiccup,  really.  Perception is everything so maybe if we view it as a hiccup on the road to recovery then maybe it will take some of the shock out of it.img_1192Ok, so fast forward a little bit.  We had wonderful holidays, Olivia was medication compliant, we kept every doctor appointment, and got all of her labs drawn at the specified times.  Which brings me to today, February 8, 2017.  We had clinic this morning.  We met with her wonderful rheumatologist and nephrologist and they informed us that her lab work indicates that Olivia is in remission.  It took eight long, grueling, heart wrenching, emotionally and physically draining months, but, WE DID IT!! This is Olivia Friday night going to a PC Friars hockey game with her dad.

img_9817There are no guarantees and Lupus is unpredictable –it could come back at any time without warning.  But, right now, we will celebrate.  We will thank God and all of our wonderful family and friends who helped us through this awful maze.  Thank you for taking the tour of our journey so far.  I don’t know the topic for next time yet…I’ve learned to take one day at a time.


The Beginning of Our Lupus Journey


Hello and thanks for stopping by the blog. My name is Beth and my daughter is Olivia.  I would like to begin by bringing you up to speed on our life with Lupus.  I will try to be as compact as possible but still give you the basics in case you are experiencing some similar challenge in your life today.  We were cruising along life’s highway when, at the beginning of last summer, Olivia began to feel sick and exhausted.  After collapsing after school the week before summer vacation, we rushed her to the Hasbro Children’s Hospital  ER where doctors conducted a multitude of tests and discovered she has SLE Lupus and Lupus nephritis. (Hasbro ROCKS, by the way!) We stayed for five days and she had a kidney biopsy to see which class of lupus nephritis afflicts her.

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