Looking for the Bright Side of Life's Challenges

This time of year has always caused more angst than joy for me. More obligations in work, family, and social aspects of life in a compressed time period (not to mention when the nights are longer -- less daylight) would tip me into the "winter blues."

This Christmas season, living with Polycythemia Vera (www.mpdfoundation.org) and its lovely side effects, I'm forced to re-set expectations and focus on getting and maintaining a reasonable level of healthiness. And guess what? The earth is still rotating on its axis even though I'm doing a fraction of what I've done in past years.

Searching for the bright side of living with a chronic, invisible illness, I've found a few:

1. Being immunosuppressed is a great reason to avoid crowded shopping areas and people you don't care to see. Getting a bargain is not worth getting a virus. And most people do not wash their hands enough!

2. Fatigue/exhaustion during the day provides opportunities for mandatory "cat naps." Ahhh... the oft-misunderstood delight of a brief respite during the day!

3. Family and friends are impressed with your accomplishments that previously would have barely attracted notice. So glad you came to that meeting! Dinner was great, mom! Thanks for making that extra trip when I forgot my project at home...

4. Someone else (like a wonderful teenage daughter) will do a lot of the gift wrapping that caused me great last-minute stress in previous years.

5. You get to know all the lab techs, nurses, and physicians with weekly/bi-weekly visits. You are not just another nameless co-pay in the health care industrial complex.

6. "Chemo brain" is a great excuse for forgetfulness. What was I going to tell you? Why did I open this drawer? Didn't I tell you ...?

7. While you don't get preferred parking spots, you can "fake it" pretty well and decide how public you want the illness to be. Since you don't look "sick" people don't assume the worst and bombard you with knowing looks of pity or fear.

8. You appreciate the "good" days so much more than ever before -- being able to go places, work, be an active parent and spouse, be a friend... No more taking healthy life for granted!

9. Side effects are just another way of forcing you to to pay attention to the present. Annoying? Painful? Frustrating? Yes! Yes! Yes! Living through this in the moment, step by step, is part of the journey.

10. Chronic illness is like a loofah sponge -- it forces you to shed the flakes from your life. Life is too short and time is too precious to spend on people / activities / thoughts that do not contribute positively.

So there's my Top Ten benefits of living with a chronic illness.
Please add others ... I'm interested to learn from you, too!

Sending best wishes for a Happy Hannakah, Merry Christmas, Sublime Solstice, Happy Kwanzaa, and all other celebrations you enjoy this time of year.

with peace and love,
marina

She's Drivin' Miss Daisy

Those of you driving around Duluth should stay alert for a new driver -- my Katrina has her permit and is now driving me around town! She is very alert and has the best posture I've ever seen behind the wheel. My mom gave her some driving lessons in the Arena parking lot last month; that's when she learned about the invisible brake on the passenger side floor board.

It is a real gift to be able to share this new chapter with Katrina. I can say with certainty that November is going to be a much better month than were September and October from a health perspective. I am so happy to report that the phlebotomies and HU meds are working. The hematocrit is down to 41 (where it should be) and I am feeling like my old self again. The platelets have creeped up a little high (to 499), but this is part of the balancing act that I'll be managing with polycythemia vera.

I've just started a new project for GSTAND -- we're looking for best practices across the state where local jurisdictions are working with nonprofits to implement the Neighborhood Stabilization Program funds. I look forward to learning about some good successes in reclaiming neighborhoods harmed by concentrations of foreclosures. Stay tuned!

Feeling better every day

Today was the fourth consecutive nap-free day -- yeayyy!

More good news: I'm down to one phlebotomy per week. We broke my record on Monday: 30 minutes to draw 1 pint.
My hematocrit is down to 52 (we're heading for 45), out of the danger zone.
Blood pressure back to good range; no more blood-shot eyes.

I started taking the chemo pills (HU) before bedtime and that seems to help me sleep at night (and therefore less drowsy during the day).

It's been two challenging months -- the symptoms, the tests, the diagnosis, and commencing treatment...
So much for which to be grateful: wonderfully supportive family and friends, attentive physicians and nurses, scientists who study stem cells, and better living through chemistry...

If you enjoy good health, please take a moment right now to breathe deeply and appreciate.
Keep the quality in your life... live, love and laugh!