Category Archives: Awareness

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Never Say Goodbye – A Thank You to Dr. Bob Arceci

I’m not so good at saying goodbye. Once you wiggle your way into my heart, I want to hold you there for keeps.

But these past few weeks I’ve been faced with a heartbreaking question: How could I ever say goodbye to the man who saved my life?

Our story begins in June 2011, when my parents and I found ourselves in Baltimore. It had been a tough year for me, with one of the biggest blows being severe and enigmatic hematologic complications that nobody could explain. With this addition to my lengthy list of eccentricities, I had all the earmarks of an underdog. And soon enough I was beginning to think that nobody wanted to deal with an underdog. The major medical center in my area turned me away, saying I didn’t have leukemia or lymphoma, so they couldn’t help me. So there we were, sitting in the pediatric hematology/oncology clinic at Johns-Hopkins, on what felt like our zillionth-and-second medical trip. We were in for quite a surprise… This visit would be entirely unlike the zillion-and-one before.

Posted in Awareness, genetics, HLH, Reflections | Tagged , , , , , | 6 Comments
We Are Not Invisible!

National Chronic Invisible Illness Awareness Week was observed earlier this month. Over the years my illness has become more obvious to a casual observer, but from the early days of my chronic battle I poignantly remember the challenges posed by the mere fact that my illness was largely invisible. And because of those painful memories, I feel compelled to speak up for myself, for my friends, and for the many silent sufferers of invisible illness.

My very first diagnosis in my journey was Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS), a chronic neurological pain condition. At age 13 I still looked like the same happy, peppy, sassy Sarah Kate in my darling little Abercrombie skirt; but on the inside, I was fighting to deal with this new sensation of an ever-present burning flame that threatened to bring me to tears if only I would give into it.

Posted in Awareness, My Story, Reflections | Tagged , , , , , , , , , | 9 Comments
I Believe in Miracles!- A Journal Post

So. Are you psyched? Because guess what… I am TOTALLY psyched! Yesterday was a party over here at the Frey household. Isn’t it always a party, though? On this day in particular, however, we celebrated three exciting occasions. April 17th is one of my favorite days ever, purely because it is my big sister Krista’s birthday! She is a lovely girl after all, one of the supreme blessings in my life!

In 1991, the 17th of April was almost certain to be doubly special, as yours truly was expected to enter the scene on that very date. But it will come as no surprise to you that even then I had a mind of my own. To build suspense, I opted to be “fashionably late” and refrained from making my grand premiere until April the 25th. Additionally I am a pretty fair sharer now that I have had time to mature a bit, but honestly, it was probably best for all involved that I had my own special day when I was a tiny moppet.

Posted in Awareness, Journal, Pain, Patient Stories, RSD, Uncategorized | Tagged , , , , , , , | 13 Comments
Hemophagocytic Lymphohistiocytosis (HLH)

STORIES OF (H)OPE, (L)EGACY, AND (H)EROES Alright, friends. Today I am writing an important post, focusing on a subject that I view with great passion. I have been sick for nearly ten years, facing rare diseases that in many ways … Continue reading

Posted in Awareness, HLH, Patient Stories | Tagged , , | 13 Comments
My Spiced up Life! – A Journal Post

Have you ever thought of “thankfulness” as a blessing? As much as we wish we could avoid unpleasantness completely, we all have “one of those days” from time to time. And I’ve had a quite few of “those days” in … Continue reading

Posted in Awareness, Journal | Tagged , , , , , , , , , , | 15 Comments
It’s an Unpredictable Life – A Journal Post

The past few weeks I have found myself on life’s roller coaster… Lots of ups and downs! Soon after my last blog post I had a checkup with Dr. Wilson, my hematologist/oncologist. Following my most recent central line fiasco, Dr. … Continue reading

Posted in Awareness, Journal | Tagged , , , | 15 Comments
What’s It All About?

So this whole blogging thing I’m doing here… What’s it all about? I’m so glad you asked! For starters, I delight in telling a tale or two from time to time. Additionally, my writing provides an efficient way for me … Continue reading

Posted in Awareness, Reflections | Tagged , , , , , , | 11 Comments