Category Archives: Reflections

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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
Homeward Bound

I know that many are concerned about Sarah Kate so I wanted to provide an update. Her numbers are trending in the right direction… Enough so that the hope is that she will be able to go home today. Sarah received more blood yesterday, and her fevers are now low-grade. She is feeling totally lousy; but as long as she is stable, home is the best place for her to be.

Posted in HLH, inpatient, Reflections | 7 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
May I Have a Drumroll Please?

It Is My Privilege to Present to You Alice Eloise, OFFICIAL Service Dog!!! Through my frequent stories starring my favorite furry friend, many are already acquainted with my Alice Eloise. But today we have some very exciting news to share. … Continue reading

Posted in Alice Eloise, My Story, Reflections | Tagged , | 16 Comments
Down the Rabbit Hole: A (Somewhat) Comprehensive Account of my Curiouser and Curiouser Adventures

“Now, what exactly is it that is wrong with you?” Ah yes. Every so often I am asked this very succinct question. But golly, it’s nearly impossible for me to spit out a succinct answer. I usually say something like … Continue reading

Posted in My Story, Reflections | 24 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
God’s Silver Linings

As much as it would please me to tell you that I was a delightful 12-year-old girl, I cannot truthfully say it. Now don’t misunderstand, I was no delinquent. I simply had a bit of that oh-so-charming adolescent attitude. At … Continue reading

Posted in My Story, Reflections | Tagged , , , , , | 41 Comments