Wednesday, April 04, 2012

Roaming through Rome

I have the recent good fortune and good health to travel with my hubby to Firenze (Florence), Italy and with our family to Roma (Rome), Italy over the last few weeks.  Florence is a city that's been on my "bucket list" for years.  To visit both cities within 3 weeks provides an excellent perspective for two very different cities in Italy.

When one lives with chronic illness, preparing for a week away from home and doctors requires more planning than usual:  
  • Update lab work to verify medication dosages.  [check]   
  • Prescription refills & pack enough for visit plus a few extra days.  [check]
  • Translate names of medications & illness(es) into language(s) of countries to be visited.  [check]
  • Update "emergency information" that is tucked with driver's license & passport (Name, date of birth, allergies, illness(es), medications & dosages, physicians' names & telephones, insurance info, emergency contact).    [check]
  • Make sure meds are in the carry-on bag.  [check]
  • Remind travel companions of your right to "opt-out" or "opt-in" for various excursions.
This is the first overseas trip I've taken in two years without a cane.  This is a big deal for me and my kids.  I think the cane is a visual reminder that I am not completely well.  While I forget I have it (as it becomes a natural appendage when one's balance is not steady), strangers always seem to take notice.  

For the two previous spring break vacations, we had the "opt-in" approach to sight-seeing.  My kids assumed that I would NOT be sight-seeing (aka, LOTS of walking) unless I told them that I would go with them.  This set their expectations low, so when I did participate it was a pleasant surprise.  

This year, since I'm feeling better, I had the "opt-out" approach.  I planned to keep up with the family UNLESS I declared the need for rest.  I did well for the first 2 days in Rome.  Today, I opted out of the visit to the Forum and Colosseum.  They woke early and left the hotel by 8:30 a.m. and I just couldn't get up.  When they get back to the hotel, I'll have all the bags in the lobby and we'll head to the airport.

Here are a few things that I've found interesting while visiting Italy:

1.  Drive on the roads at your own risk!
I am by no means a wimpy driver;  I assimilated to Boston's aggressive driving style and can snake my way through Atlanta's gridlock.  But nothing in the US prepares you for driving in a country where road lanes are mere suggestions.  The lane stripes are decorative, at best.  Not only do the drivers weave back and forth, mopeds appear out of nowhere between lanes and between the right lane and the curb.

In the US, there is a motorcycle and bicycle awareness saying that goes:  "Look twice, save a life"   In Italy, one's head must be able to revolve 360 degrees at rapid speed to avoid these sneaky mopeds.

When a moped made a left turn from the right lane and cut off a car in the left lane, the car driver honked his horn.  The moped driver was able to provide the one-armed response as he took off down the next street.

I was told that mopeds do get hit frequently, but people rarely die.

In Florence, some roads are for all vehicles, others are for mopeds, bicycles, and pedestrians, and others are pedestrian-only.  Again, this appears to be a mere suggestion.


2.   Vehicle Parking is an art form.
When my kids prepared for their driving tests to get their licenses, they bemoaned having to parallel park.  "Why do we need to learn this?"   (words from suburban kids, obviously).  Well, here in Italy, the kids have new appreciation for the skill.  We actually stopped walking to observe some of these parking masters.  These drivers fit into tight spaces easier than I can pull on Spanx.

There are Smart cars everywhere.  The cool thing about them is they are about as long as many cars are wide.  That means that they can back into the curb and fit into a created space without sticking out into the road.  I'll post pics when I get a faster internet connection.


3.   Authentic "Italian" food varies by region.
This ain't the Olive Garden or Macaroni Grill.   In all regions, the antipasti (appetizer, "before pasta") dishes typically contain olives, salamis, and maybe a few veggies.   The "primi piatti" (first course) is usually a pasta of some sort.  The "secondo piatti" offers what is found in that region.  In Venice, most of the meals have seafood.  In Florence, there was more red meat:   wild boar, beef, etc.

In Rome, while it is near the sea, the food is simpler and has a heavy Jewish influence.  Artichokes are prepared more ways than ever thought possible.

The pasta in Rome is more "al dente" than Florence, and is served warm, but not hot.
Roman food is sometimes called "cucina povera" (what we might call "peasant food") using "fifth quarter" ingredients.  Historically, the plebeians (mostly working poor) made use of the left over parts not served to the upper classes.  For example, ox tail is served many different ways.  The bacon is usually from the pig's jowl, not the belly.

The typical pizza here is thin-crust with light topping of pomodoro sauce (tomato) and mozzarella cheese melted on top (called a "margherita pizza").  They are baked in a wood-fired oven.  Here, simple is better.  Also, they don't have pepperoni as we know it.
The closest thing is the Pizza Diavolo, which has salami piccante (spicy salami).


4.   Catholic churches are everywhere!
It shouldn't be surprising, given the long geo-political history of the Church in Europe.  Still, the artwork that has been donated and collected over the years is breath-taking.

In Florence, one of the churches added a sarcophagus & statue for Galileo years after he was excommunicated from the Church for contradicting its proclamation that the world was flat.   Apparently, once the error of their ways was noted, they claimed his genius.

Some of the churches were originally places of pagan worship;  the conquerer gets the spoils.  And some churches were also used as prisons during various skirmishes and wars.

The first time I visited Rome, I was absolutely awestruck by the beautiful churches.  This time, I can admire the beauty but they don't seem as holy after learning about the cruelty that was sanctioned by people of faith.  This discomfort lets me know that there is much that I do not know.


5.   There really is a lot of Italian marble.
The marble is as varied and gorgeous as one can imagine.  It is on floors, tables, counters, sinks and seems to hold up very well.  The inlay work done here is nothing less than beautiful art.  
I've seen so much marble here that I no longer think of fudge makers on Macinaw Island.  :)


6.   All Gelati is not the same.
I wanted to do a gelati crawl (similar to a pub crawl), but one piccolo cup (small) is all I could handle at one time.  The places where the frozen cases show mounds of brightly colored gelato tends to be mass-produced.   We sought out the places that had "artisinale" gelati -- made in smaller batches and generally much better tasting.
I don't know how many WeightWatchers points are in a piccolo, but who cares?  I walked a lot this week!


7.   For all of Europe:  It's not so easy to tell who is from the United States
Gone are the days when Americans stuck out like sore thumbs...  trends are globalized and until you hear someone talk, it's not always obvious where they are from.

I saw a lanky teenager with his "pants on the ground" (waistband hitting mid-butt cheeks) with skater-dude blond messy hair.  What gave him away was a t-shirt with a fake CocaCola logo (being from Atlanta, Coke's headquarters, I'm quite familiar with the brand).   Then he spoke to his buddy in a Germanic language.   It cracked me up!

I encountered a family with small children who were speaking Korean.  When I offered my "hello" greeting in Korean (thanks to my friend Kimberly), they responded in perfect English.  Turns out they live in California and are keeping their native language alive with their kids.


So here's a few travel tips:

Don't talk to your friends about the people around you as if they are not there or don't understand you.  And do not say anything you might regret.  They just might understand perfectly (even if English isn't their first language).

At the same time, don't ASSUME everyone speaks English.  That's just rude.
I can't tell you how many Americans I observed talking LOUDLY to Italians (as if volume compensates for translation).  
If you make an attempt at the local language, the locals will go out of their way to work with you.  There is a lot of pantomime action here, and it can get quite fun.  Also, I found that when I called upon my old French and Spanish, it helped bridge the language gap.   They appreciate the effort.

Print the name & address of your hotel or dining destination on paper and show it to the taxi driver.  This helps him/her get you to the proper place.  The wrong pronunciation can get you to the wrong destination.  :)













  

Tuesday, February 28, 2012

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 the "Live Strong" campaign from Lance Armstrong's foundation got media attention.  

Rare diseases do not get the same attention - or funding - because they are, well, rare.  Without enough patients to comprise a big enough "market" it is difficult to get a strong message heard amidst all the chatter.   Did I mention that it's also difficult for people with the same rare condition to find each other, much less gather the energy and resources to organize huge public awareness campaigns?

The beauty of Rare Disease Day is that it opens up opportunities for new conversations at all levels around the world.  This is the fourth year of RDD in the United States.

So what makes a disease or disorder "rare"?  
The US definition is a disease or disorder that affects fewer than 200,000 people (as defined by the Orphan Drug Act of 1983).   With this definition, there are approximately 7,000 rare diseases active in the US.  Almost 30 million Americans (10%) are living with a rare disease.

The European definition of a "rare disease or disorder" is one that affects fewer than 1 in 2,000 people.

Rare diseases/disorders are often life-threatening or chronically debilitating.  Many of these diseases tend to change over time, degenerating the patient's quality of life and ability to work, live independently, and enjoy many of life's simple pleasures.   Some people are asymptomatic for years before the disease progresses.

Rare diseases/disorders are difficult to diagnose because they share symptoms common to other ailments and the symptoms also may vary from one patient to another.   Many patients are first misdiagnosed and live with inadequate treatment until the true disease state is discovered.

"Rare, but Strong Together"

My diagnosis of Polycythemia Vera, a Myeloproliferative Neoplasm (MPN), was given in the fall of 2009 -- two years AFTER the triple vein thromboses which almost took my life.  At the time of the thromboses and ensuing ischemic bowel, peritonitis, and organ distress, I was diagnosed with Factor XII and Protein C deficiencies.   It took another "close call" event to occur before I received the full diagnosis and began appropriate treatment in 2009.

The diagnosis of Behcet's Disease, an auto-immune illness, was made after a lot of pain and many tests by my internist, gynecologist, and infectious disease doctor in 2009-2010.  The first rheumatologist said he didn't believe one patient could have two rare diseases.  This one continues to be a real roller coaster, but my rheumatologist is excellent about keeping up on the latest (albeit limited) literature, studies, and practices concerning Behcet's.

What's a NORD?
I encourage anyone with a Rare Disease to register with the National Organization for Rare Diseases (NORD) or EURORDIS (Rare Diseases in Europe).   When you register, you can opt to be notified to participate in on-line surveys, clinical trials, and learn when new findings about the disease are made available.  It's free and it's a way to contribute to better science.

National Organization for Rare Diseases




Monday, February 06, 2012

Thrombosis Risk Rises in Women With Myeloproliferative Disorders - OncologySTAT

This happened to me, two years before I was diagnosed with Polycythemia Vera.
Now I know that my experience is shared with other women with MPNs. The number of MPN patients is small and I do not wish this disease on anyone. Yet there is some macabre comfort in knowing that I'm not alone.

Hopefully, when people present with abdominal venous thromboses, doctors will now add MPNs to their list of possible causes. Testing and further treatment will then commence before another adverse event occurs.

Thrombosis Risk Rises in Women With Myeloproliferative Disorders - OncologySTAT