Tower Pools?

I mentioned earlier today that I didn't think I was a fan of tower pools, although I've never been in one.  To me, they seem like an outdoor bathtub.

The Crane's buildings have towers/turrets on the corners with plunge pools built into them.  The one here in the penthouse involves a climb up 3 stairs to access.

I put my feet in long enough to get this image from inside:

"Our" regular pool seen from up here, right on the end, by the ocean.  Next stop - Africa!

And the view from "our" regular pool can't be beat!  The infinity edge makes it seem like it goes on, well, forever.

A normal day here I would have sat out in my bathing suit, reading, and when it got too hot, I'd hop in the pool for a bit. Today I read a lot and did computer work. The bathing suit is still dry...

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Back to Barbados

What a trip!

I thought by packing earlier on Friday night I could sleep better.  Not so - I was still awake most of the night thinking, worrying...

At 8:30am I left with Mimi for her sister's house.  Mimi is so lucky - she doesn't even know what a kennel is.

I got back home and waited for Tom to get there.  He rolled in at 10am, just after the taxi got there.

The trip to Regan airport was uneventfull.  We actually got there about 10:30, possibly the earliest we have arrived for any flight.

Checkin, security, no problems.  We decided to have something to eat at this little place by the gate.  No coffee!  AARRGGHH  Tom convinced the manager that they should still have coffee at 10:45am.

Boarded plane.  We had seats D and F.  Tom convinced the woman in E that she'd like to move back a couple rows closer to her husband...and we had no one in E so could stretch out a bit more.

From the beginning this was a bumpy ride, thanks to Hurricane Isaac which was headed to Miami, same as us.  You can see him just over Cuba at 60 miles per hour at the time we were nearing Miami.

We finally landed and found our next gate, only 4 gates away.  Gate 1 was already fairly crowded with people headed to Barbados.

I found a little newsstand with the nut/fruit bars I like. I got 2 at $3.99 each.

Settled in for the 2 hour wait and an announcement came up that we were leaving 30 minutes early.  Ok, great for us, not those running for a connection.

Waited a bit more.  Announcement that our plane had major issues and they would find us a new one

Waited.  New gate.  Now gate 50 which is 2 terminals away by sky train and we had 30 minutes to get there.

We navigated all that and got there to learn they'd found a plane but it needed to be made ready.

Tom went to the newsstand for snacks.  The only thing I'd had so far was that fruit/nut bar at gate 1

He came back with a variety of stuff, including some more fruit/nut bars. But at this gate they were only $2.89. Go figure!

Finally, we got onboard.  We were the last flight out of Miami for a few days.  Another bumpy trip but we made it to Barbados at 11:30.  Naturally, out suitcase was nearly last on the carrousel but it arrived!  Through Immigration and Customs and off to Stoute for our rental car.  Tom's debit card was rejected...we'd forgotten to let them know we were traveling.

We got to The Crane just before midnight and found out that the people who had been in our apartment last week hadn't been able to leave so they were giving us the penthouse for the night, the week or the whole trip.

This place is huge, too big for us.  If Michael can come this weekend, that would be good but otherwise...

We opened up all the doors for a cross breeze, looked around a bit and fell asleep.

Early on Sunday, Tom went to his usual meeting and I poked around. This place didn't seem to have a laundry, a feature we rely on heavily but I found one across the hall.

I do hate the "tower pools" but I haven't actually been in one yet.  Maybe it won't be so bad.

I texted Michael and Alice to let them know we'd gotten here and called my mom.

Did some work and started this blog post.  The wifi up here is very slow and the first picture hasn't even uploaded yet. Maybe I'll add the other to another post...later. 

Tom came back with salt bread so all is well in my world!

Bajan Salt Bread

This traditional bread made in Barbados, is one of the only breads that isn't very sweet. However don't let the name fool you. This bread is definitely not salty. This bread can be used to accommodate almost any filling. This local delicacy is the housing for the popular bread & two which consists of salt bread filled with two fish cakes.

You can find salt breads at bakeries and bread shops throughout the island of Barbados. A pack usually contains six (6) salt breads sold in clear plastic bags.  Bajan Salt Breads are baked daily and would usually be accompanied by a piece of khus grass on the bread, but do not be afraid! This is to preserve the freshness of the bread. Enjoy!

 

 

 

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Cruisin' With Susan, 2013

I'm so excited!  Just over six years ago Susan M, one of my Cushie friends, invited me on a cruise to Bermuda. I was delighted and excited to go. Then I found out I had kidney cancer and had to bow out at the last minute - the cruise embarked the day I left the hospital. My surgeon said that there was no way I could postpone my surgery for another 5 or so days so someone else went in my place.

So, that was it for my first (and only!) Bermuda cruise.

Then in 2008, I heard from my friend again, asking me if I wanted to do the cruise then! Of course, I said yes… She said she was celebrating and upgraded the whole cruise to the Western Caribbean. We had a superior balcony stateroom and I could wear some of the clothes I got for the non-cruise.

You can read all about our 2008 cruise here: http://www.cushingsonline.com/cruise/cruise.htm and see a slideshow of pictures at http://www.cushingsonline.com/cruise/cruise.html

Last year, September of 2011, we went on a land trip to Gloucester, MA.  Blog posts and pictures for that trip start here http://maryoutandabout.posterous.com/last-trip-for-awhile.

I was at work today when I saw Susan's name pop up on my cellphone and knew she wanted to go on another trip.  As soon as I got in my car, I listened to her message.  YES!  Another cruise!

We talked on the phone and decided on this trip:

Then, Susan booked the cruise and called back to say it was even cheaper than we thought it would be.  Major WooHoo.  And, we have the all-important balcony.

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The Trip So Far...

MEETING NOTES : The Trip So Far...

Meeting Created: July 20, 2012 11:56 PM

Lombard

Thursday morning I got up about 5 am to head to the airport.  I hadn't slept much the night before because I always get nervous flying.  My first flight was at 9 and left onetime, no problems at all.

I got to Boston for the layover. The first thing I needed to do was get cash for the rest of the trip.  Unfortunately, the ATM didn't play nice and no cash came out.  I called the number on the machine and got the old "push 1 for...". I finally figured out what was the right number and I got a recording telling me to call my bank.

So, I had to make another call.  I am not a phone person at all so this was not a great way to spend my free time.  I finally got through that phone tree and got to a real person.  I told him I had a receipt.  When I actually looked it, I saw that the machine had never intended to give me any money - I had chosen savings instead of checking account. DUH

This time when I tried, I actually got my cash.

The next plane was over an hour late, waiting for a plane to arrive from DC. Huh?  Why did I have to take an earlier flight if there was this later one?

Many babies and toddlers on this flight. The row ahead of me had 2 babies and right across the aisle was a toddler.  So much for a nap.

When we got to Chicago, my bag was the third on the carrousel.  Unheard of.

I called the shuttle company and the person hung up on me.  Called again and the person said I had to wait until 5. I was 3:30.  So I wandered around O'Hare a bit and finally went out.  The shuttle was about 20 minutes late.

Got to the hotel and Terry came over to greet me.  I checked in, took my stuff to my room and back down to the exhibit hall.  I saw Sarah (again) and met several new folks, including 2 Corcept nurses.  Picked up some cool stuff.  

Several of us went to dinner at the hotel then unpacking and bedtime for me.

Friday:

I'm still on eastern time so I woke up earlier than I'd have liked.  I couldn't get back to sleep so I checked email, did some web work.

The first lecture was Dr Frohman. I got a fruit plate and 2 cups of coffee so I wouldn't have to go get more during his talk.  I got to sit next to Denise, who I haven't seen for several years.

Dr. Frohman's and all the lectures are available on http://www.cushingshelp.blogspot.com 

So far, I've been able to get them available within 5 minutes of the end of the lecture-a first for me.

After the break, I found that they'd taken the coffee away.  Aacckk!  Will have to hoard more tomorrow so I don't get a headache.  Karen had a brilliant idea and she ordered a pot from room service, which we split.

Dr. Salvatori was next, then lunch followed by Dr. Salvatori again (see lecture notes!). Then Dr. Heaney and a bit of a break before dinner.  I bought a blue short sleeved golf shirt, the same as Denise.

Back to the room to brush my teeth and off to dinner.  It was nice, conference-y food:  chicken in a sauce, roast potatoes, beans, carrot, asparagus, salad and a rich apple caramel dessert.

After dinner, the obligatory pictures.  

Then off to the mall.  I got a sweater.  It's cold in the meeting room!  

A few of us went in the pool but there were lots of kids.  Maybe tomorrow, when they're at the zoo...

Night!

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Magic Conference, Day 1, Dr. Salvatori (1 of 3)

MEETING NOTES : Dr. Salvatori

Meeting Created: July 20, 2012 11:00 AM

Lombard

Testing and Diagnosis Process for Pituitary Disorders 

Pituitary disorders can be difficult to diagnose in many cases. Dr. Salvatori will discuss the

different testing and diagnostic procedures to determine the pituitary disorder. MAGIC
receives many calls asking about diagnostic procedures. This segment will be helpful in under-
standing what procedures are used today to provide the best treatment available. 

Dr. Cushing picture

Dr. S only sees diagnosed patients

Dr C 1932 description from Johns Hopkins, pre-MRI

Causes do CS

• Prescriptions, iatrogenic
• ACTH independent adrenal 20%
• ATCH dependent, 80%, 85%of those Cushings

Signs best to discriminate

• Bruisings
• Facial plethora, redness
• Weakness
• Striae

Symptoms

• Fat pads
• Moon face
• Thin skin
• Acne
• Depression
• Fatigue
• Weight gain
• Menstrual
• Decreased libido
• Irritability

diagnosis

• UFC
• Overnight sex
• Salivary
• Dex-CRF

Why bedtime cortisol?

Diurnal rhythm, changing time zones, what helps you wake up

Is CS ACTH-dependent?

Where is the ACTH coming from?

• Up to 30% not visible on MRI
• Up to 10% of normal people suggest pituitary incidentaloma
• MRI is not good test to diagnose

First do no harm, be sure before surgery

IPSS, not to diagnose Cushings, just to find where ACTH is coming from 

Lose more blood testing for Cushings than during surgery

Prolactinoma vs. pseudo-prolactinoma

• Pregnant
• Psychoactive drugs

Acromegaly: IGF-1 not whole story

Hugo brothers

Hypopituitarism

• Many undiagnosed
• 45/100,000 from Spanish study
• 94/100,000 from Belgian

Secondary, TSH isn't a good test

Testicle size

Adrenal insufficiency

AM cortisol less then 3 ug/dl

Random cortisol above 15 ug/dl rules it out

Tests

• ITT
• ACTH stimulation

Adrenals shrink

Pituitary apoplexy=acute adrenal insufficiency

GH deficiency

IGF-1 not good test

Glucagon used now at Hopkins.  Cutoff is 3

Heavier you are, lower GH on stimulation test

Pan-hypopituitary don't need stimulation testing

Causes of hypopituitary

Traumatic brain injury, mostly young men

Cancer, radiation to brain

Hypopituitary

• Undiagnosed
• Gradual symptoms
• Steroid replacement before thyroid replacement

Q & A

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Magic Conference, Day 1: Dr. Frohman

MEETING NOTES : Dr. Frohman

Meeting Created: July 20, 2012 9:00 AM

Chicago

Understanding your Pituitary Gland in Health and Disease

Dr. Frohman will present an overview of the pituitary gland. He will cover general aspects of
pituitary function and testing and also review the types of pituitary disease that occur,
including pituitary tumors and Sheehan’s Syndrome. Many people ask and wonder if Growth
Hormone Deficiency can be inherited. Dr. Frohman will also briefly address that concern. 

Pituitary

Sheep studies, pulses pulsatile

GH secretion at night, varies with age.  Most in teens then downhill, follows diurnal rhythm

High igf= cancer?

Hypothalamus

Chris

Anterior pituitary

ACTH

Cortisol

Then back to hypothalamus

Inhibin to inhibit ovary and testes

Types of tumors

Alpha subunit no signs or symptoms 

Microadenoma, macroadenoma

Mass effects

Headache, visual disturbance, neurological damage

Impaired pit function...hypopituitarism

Hypersecretion 

Acromegaly

Hands, feet, facial swelling, sleep apnea, snoring, tall, oily skin, increased soft tissue, Goliath, carpal tunnel

TMJ, osteoarthritis

Metabolic changes

Organ enlargement, hypertension

Cushing's

ACTH, cortisol

Acne, hirsuitism, striae, other usual symptoms

Therapy

Surgery

Drugs keto, mifepristone, pasireotide

Radiation stereotactic, gamma knife can cause hypopituitarism

Hypopituitarism

• Primary, Sheehan's syndrome uncommon today
• Genetic

Secondary

• Trauma
• Tumor
• Iatrogenic
• Traumatic brain injury
• Anorexia
• Tumors
• Steroids

Clinical features

• Acute
• Slow

Hypo clinical features

Diagnosis, testing

Q&A

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Sailing, Sailing...

Over the years, we went on several Windjammer Barefoot Cruises.  We liked them because they were small, casual and were fairly easy on the wallet.

They sailed around the Caribbean to a variety of islands, although they sometimes changed itineraries depending on weather, crew, whatever.  One trip we were supposed to go to Saba but couldn't make port.  A lot of people got off at the next port and flew home.

The captains were prone to "Bedtime Stories" which were often more fiction than true but they added to the appeal of the trip.  We didn't care if we missed islands or not - we were just there to sail over the waves and enjoy the ride.

The last trip we took with them was about two years before I started having Cushing's problems.  (You wondered how I was going to tie this together, right?)

The cuise was uneventful, other than the usual mishaps like hitting docks, missing islands and so on.  Until it was a particularly rough sea one day.  I was walking somewhere on deck and suddenly a wave came up over the deck making it very slippery.  I fell and cracked the back of my head on the curved edge of a table in the dining area.  I had the next-to-the-worse headache I have ever had, the worst being after my pituitary surgery. At least after the surgery I got some morphine.

We asked several doctors later if that hit could have contributed to my Cushing's but doctors didn't want to get involved in that at all.

The Windjammer folks didn't fare much better, either. In October 1998, Hurricane Mitch was responsible for the loss of the s/v Fantome (the last one we were on).

All 31 crew members aboard perished; passengers and other crew members had earlier been offloaded in Belize.

The story was recorded in the book The Ship and the Storm: Hurricane Mitch and the Loss of the Fantome by Jim Carrier.  The ship, which was sailing in the center of the hurricane, experienced up to 50-foot (15 m) waves and over 100 mph (160 km/h) winds, causing the Fantome to founder off the coast of Honduras.

This event was similar to the Perfect Storm in that the weather people were more interested in watching the hurricane change directions than they were in people who were dealing with its effects.

I read this book and I was really moved by the plight of those crew members.

 I'll never know if that hit on my head contributed to my Cushing's but I have seem several people mention on the message boards that they had a traumatic head injury of some type in their earlier lives.

 

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Great Country Farms

I came across this video today and it shows off "our" farm to such good advantage.

They just started their 18th year and we've been members for 17 of those years.

 

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For Those Who Celebrate Easter

 

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Is He Waiting for a New Gosling?

Last week I took my mom to her oncologist.  To make it easier, I circle around the ER so she can get out of the car on the passenger side.

We saw this goose standing by the ER entrance.  I took a hunch and circled the parking lot before going in to wait with my mom.

He was still there - alone - pacing back and forth.  I got several pictures from the car and went on to the appointment.

 

 

 

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ThAAAnkful

The Tuesday before major holidays I take my mom to visit a friend of mine.  We typically play seasonal piano duets and trios and go out for lunch. This tradition has been going on for nearly 20 years when my mom would drive here on the Sunday before a holiday.

 

This year, we were taking an exit from one major highway to another and there was some construction going on.  The exit was two lanes and there was a car in the other lane so I had nowhere to go when I saw what looked to be a clump of dirt from the construction.

 

After I hit it, I soon found that it was more than dirt.  The ride got bumpier and bumpier until I could barely steer. 

 

We got off at an industrial park where I'd never been before.  I called AAA and tried to explain where I was.  They gently reminded me that I had neglected to renew my membership at the beginning of the month. You can bet I whipped out my debit card super-fast!

 

It was pouring rain but the nice AAA man arrived within 30 minutes. He got the tire changed out and put air in the other front tire.  My mom didn't even have to help lift the car!

 

My friend had also come so we had sandwiches in a little shop in the industrial park. Not a bad end to the day.

 

I will never let that membership lapse again!

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The Circus Was...

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...Memorable.  It was also great, exciting, wonderful, fun, scary sometimes and brought back some very interesting memories...

I couldn't remember the last time, if ever, I had been to a circus.  

Memory number one: Years ago when we lived in Milwaukee, we went to the Ringling Brothers Circus Parade.  That was the neatest thing - we could watch them set up, hang around the backlots.  

Tom was so engrossed in taking pictures of the Budsweiser Clydesdales that he nearly got run over by them while he was trying to take their picture. Unfortunately, those are on actual film so maybe sometime I'll scan those in.

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Last night we got to the circus in the nick of time.  I was sure we would be late but we got to our ringside seats a few minutes before the show started.  We were literally in the front row.  There was a raised platform running around the ring right in front of us where performers (and some animals) would stand, run, walk.  It was amazing being so close to them.  

The red in this picture is the actual ring in front our seats.  I'm sorry I'd had the flash turned off!

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I started looking around and took the picture of the "stage" to my left.  This is where the larger props came from.  The band was in the "mouth".  Most of the performers came down the aisles through the audience.

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Memory number two: You can't really see it in this picture but about halfway up on the right side is an "imagination chair".  It's a sort of throne-looking chair with a helmut and wires sticking out the top.  Seeing that took me right back to my childhood, to an unpleasant memory.

 At some point when I was a child, someone had the bright idea that you could prevent crimes by making a mockup (although I was sure it was real at the time!) of a wooden electric chair and turning it into a mobile exhibit.  This trailer travelled around Connecticut and scared me out of a life of crime!

Not the best way to start a circus for me.

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The circus did start and there were great acrobats, clowns, a woman climbing a rope, Grandma, a juggler, a comedy magician act, beautiful horses, dogs, a porcupine(!) followed by a potbelly pig and a...

...capybara.  Memory number three.  This one is freaky.

When my son was about 6 I'd take him to Delaware to visit my parents.  On a couple occasions, they'd take us to the zoo where there were some capybaras.  My father and son both seemed fascinated by these large rodents.  They are kinda cute.

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I hadn't thought about capybaras for about 25 years and here they are back, on the anniversary of my father's death.  How odd.  I keep thinking maybe my Dad is sending me a message.  But through a circus?

Whatever, the coincidence was astounding and helped knock the electric chair right out of my head.

We did have a great time at the circus and I'd go again, even though I got a bit more out of it than was expected - or planned.

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Going to See the Big Apple Circus Friday Night!

 

Profiled on the PBS series Circus and dedicated participants in community-outreach programs, the international performers of Big Apple Circus stretch one ring to new limits with this year's original show, Dream Big!. The all-new performance garnered glowing reviews in the Washington Post for its kid-friendly entertainment, talented entertainers, and fashion-forward clown shoes.

With every seat within 50 feet of the ring, eyes clearly catch the nuances of intricate acts, such as Melanie Chy, a third-generation circus performer who woos audiences with her body contortions, or theShandong Acrobatic Troupe, a group of 11 young men ranging in age from 13–27 who walked away from the International Circus Festival of Monte Carlo in 2010 with the prestigious Gold Clown Award and a delicious recipe for crêpes.

Leading the charge in his final year with the circus is lovable clown Grandma, a marquee member of Big Apple Circus since 1982 and inductee into the International Clown Hall of Fame. Grandma has also been seen on CBS's Circus of the Stars and in multiple appearances in Macy's famed Thanksgiving Day Parade and lesser-known Boxing Day Stand-Still.

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A Few More Lipizzaner pictures

See the full gallery on Posterous

I'll post the rest when I get home. I also have several short videos

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