Category Archives: Behcet’s Disease

Hope = Reasonable Expectations

Six Month Post-SCT Assessment Gives Me Hope February 3, 2014:  The news is good. My Dear Donor’s hematapoietic (blood forming) stem cells are engrafted in my bones. My bone marrow is not hard and fibrotic like it was six months ago. We hope it once again becomes a gracious host for the marrow and stem… Read More »

Jakafi to the Rescue

Myelofibrosis Treatment Banishes Behcet’s… Coincidence? I think Not About one month after my Autumn 2009 PV (polycythemia vera) diagnosis, I started getting unexplainable lesions in most inconvenient locations (I’ve shared this over a year ago). After several months of excluding many possibilities, it was diagnosed as “Behcet’s Disease/Syndrome” or “Probably Behcet’s” in March, 2010.  I… Read More »

Yippee! It’s Time for Another BMB

I never thought I would look forward to getting another bone marrow biopsy & aspiration, but today I am eager for new information.  The first BMB was done in March, 2010.  It will be interesting to see how my busy bone marrow has changed in almost 3 years. Why a BMB Now?In 2012, the first few… Read More »

Let’s Play Medical Pinball!

Apparently, I’m a slow learner.  I believe that when things/people/events show up in one’s life they present opportunities for introspection, learning and growth.  Sometimes it’s to practice patience, listen better, explore other perspectives, remember to be grateful. The latest “opportunity” in my life is arthritis and chronic pain.  I’ve been dealing with increasingly frequent and more… Read More »

What Happened to the Little Engine That Could?

Invisible Illness Awareness Week September 10-16, 2012 invisibleillnessweek.comKind. Empathetic. Nurturing. Positive. Funny.  These are some adjectives that describe me.   I’ve always championed causes of the underdog and I have the resume and references to prove it.  Yet I am embarrassed to admit that until I became ill with Polycythemia Vera, I was not attuned… Read More »

Got Behcet’s?

Behcet’s Disease Awareness Day —  May 20th If you don’t know about Behcet’s, consider yourself lucky! Learn more here: American Behcet’s Disease Association Info on Behcet’s Disease The major BD symptoms include:  ulcers in the mouth, ulcers/lesions on the genitals, eye inflammation, arthritis, skin rash/acne. Other symptoms may include: skin lesions, bowel/intestinal inflammation and lesions, fatigue, meningitis,… Read More »

Rare Disease Day – Around the World

On the last day of February, people around the world living with rare diseases or disorders shine a light on the rare diseases they deal with every day. We see pink ribbons on everything from car magnets to KFC buckets (yes, really!) to increase awareness about breast cancer.   Rubber wristbands became the rage after… Read More »

Top Ten Travel Tips for Folks with Chronic Illness

I learn something new each time I venture out with Polly and Behcet’s.  While I get the “You don’t look sick” comment all the time, I’ve learned that the physical limitations are real.  If I don’t listen to my body and pace myself, I will pay for it handsomely with several days in bed or… Read More »

Fa La La La Hum Bug!

Now that Christmas is over, I’ve got to get this off my chest:  I’m glad it’s done.   All I wanted for Christmas was a “Fast Forward” button for the month of December.    Yep.  Call me  Grinch, Scrooge, Grumpy, whomever you like.    I know it’s not politically correct.   As I went about the usual December activities… Read More »

The Beauty of a Competent, Caring Physician

My kids have heard me say many times, “Never underestimate the power of your smile.  It may be the one nice thing someone receives today.” To physicians, I say “Never underestimate the power of your intentional listening.  It may be the relief your patient needs when there is no cure for what ails them.” I… Read More »