Tag 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
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
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