Category Archives: Chronic illness

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 »

Some Life Lessons Take a Lifetime

Patience and Pacing If you let go a little, you will have a little peace. If you let go a lot, you will have a lot of peace. If you let go completely, you will know complete peace and freedom. Your struggles with the world will come to an end. ~ Ajahn Chah, A Still… Read More »

Let’s Kick It Up a Notch (or more) — to Mayo Clinic

I had a Bone Marrow Biopsy done at Northside Hospital on January 24th. The bone marrow biopsy and aspiration report came back with some news:  lots more reticulan fibers and fibrosis “consistent with post-polycythemic myelofibrosis.”  The report didn’t look good from this patient’s perspective but I was pleased that I wouldn’t have to wait too long… 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 »

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 »

4th Anniversary of my Second Chance

October 14, 2007 — a day as important as my birthday!Four years ago today, Dr. Darryl Tookes quite literally saved my life with his expert emergency surgery. October 14th or 15th could very well have been the date after the dash on my tombstone (if I had one). Dr. Tookes discovered clots in the portal,… 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 »

Myeloproliferative Neoplasms Conference – Day 1 Highlights

More than 200 cancer patients, supporters, and physicians/researchers gathered at Mayo Clinic Scottsdale this morning at 8 am to begin a lively conference about the state of knowledge and treatment of the Myeloproliferative Neoplasms — Essential Thrombocythemia, Polycythemia Vera, and Myelo Fibrosis. Dr. Ruben Mesa opened the session and welcomed everyone and reminds us that… Read More »