Road Trip to Pennsylvania!

On Wednesday of this week, the Pender staff took a road trip to Pennsylvania to see Jonah at the Sight and Sound Theater.  It was my first time going there - what a neat experience!

We left the church at 7:30am and got to Ronks, PA just in time for lunch.  Methodists love to eat!  We stopped at an all-you-can-eat restaurant featuring wonderful Amish food.  Dienner's logo was much more sedate than the one next door...

In the same parking lot, RevKev spotted this fine establishment (the small print says "fresh fudge"):

After eating all we could, we headed over to the Sight and Sound theater.  From their webpage:

Story, song, and spectacular staging bring each of Sight & Sound Theatres' epic shows to life. Dozens of professional actors attired in elaborate costumes, meticulously detailed sets towering up to 40 feet high, trained animals, unmatched special effects, and beautifully memorable music inspire 800,000 guests every year.

When we first got to the theater, there was a wonderful quartet of Victorian-era carolers singing for us.  It even snowed on them at the end of their segment.

We found our seats and settled in for the show.  It really was fantastic, very colorful (except for Jonah!).  I liked the feeling of being there, since the theater wrapped around the audience on 3 sides - and had things like fish swimming through the audience and jellyfish floating above.

The boat that looked like a whale was very clever - and the "real" whale was something to behold.

Lots of animals, too -

I would recommend this show to anyone.

After the performance we headed out to eat again even though it was only 4:00.  This time we went to Plain and Fancy for an Amish Feast

Click to view full-size

We finally got home about 8:30.  I was exhausted but it was a fantastic day.

Jonah and the Whale - Story Summary:

The story of Jonah and the Whale, one of the oddest accounts in the Bible, opens with God speaking to Jonah, son of Amittai, commanding him to preach repentance to the city of Nineveh.

Jonah found this order unbearable. Not only was Nineveh known for its wickedness, but it was also the capital of the Assyrian empire, one of Israel's fiercest enemies. Jonah, a stubborn fellow, did just the opposite of what he was told. He went down to the seaport of Joppa and booked passage on a ship to Tarshish, heading directly away from Nineveh. The Bible tells us Jonah "ran away from the Lord."

In response, God sent a violent storm, which threatened to break the ship to pieces. The terrified crew cast lots, determining that Jonah was responsible for the storm. Jonah told them to throw him overboard. First they tried rowing to shore, but the waves got even higher. Afraid of God, the sailors finally tossed Jonah into the sea, and the water immediately grew calm. The crew made a sacrifice to God, swearing vows to him.

Instead of drowning, Jonah was swallowed by a great fish, which God provided. In the belly of the whale, Jonah repented and cried out to God in prayer. He praised God, ending with the eerily prophetic statement, "Salvation comes from the Lord." (Jonah 2:9, NIV)

Jonah was in the giant fish three days. God commanded the whale, and it vomited the reluctant prophet onto dry land. This time Jonah obeyed God. He walked through Nineveh proclaiming that in forty days the city would be destroyed. Surprisingly, the Ninevites believed Jonah's message and repented, wearing sackcloth and covering themselves in ashes. God had compassion on them and did not destroy them.

Again Jonah questioned God, because Jonah was angry that Israel's enemies had been spared. When Jonah stopped outside the city to rest, God provided a vine to shelter him from the hot sun. Jonah was happy with the vine, but the next day God provided a worm that ate the vine, making it wither. Growing faint in the sun, Jonah complained again.

God scolded Jonah for being concerned about a vine, but not about Nineveh, which had 120,000 lost people. The story ends with God expressing concern even about the wicked.

Posted via email from Mary'Out and About

Books, Books, Books...

This paragraph didn’t make it onto some of the places I auto-post so I’ll add it here.

This is the end of the catamaran trip from yesterday:

Something new – just as we got back to the Careenage, the captain/crew started playing this and most everyone danced their way into port.  What fun!

I usually try to keep a list of books I’ve read on trips.  One thing I like about coming here to Barbados is that they have a book exchange and I can often pick up British books I might not be able to get in the states. Anne Perry was one of those authors I discovered here.

When I first got here I was reading

That’s a pleasant enough book but I don’t know if I’ll finish it or not.  I just don’t really care enough about the plot or the characters.  If there’s ever a moment when I’m somehow bookless, I might finish it.

On Tuesday, August 28, I had set up an auto-delivery to my Kindle of

I love the Gamache series. I discovered these books either last year or the year before here and have read the whole series.  The characters are interesting and the plots are fascinating.  They take place in Canada, which I find interesting.

I also like a mystery series by Michael Genelin which takes place in Slovokia about a female detective named Jana Matinova, but I’m up to date on those.

At the end of the Gamache book was a note “…if you liked this book, you might like…”

So I tried

I usually read British novels from the 19th century and this was contemporary but I really enjoyed it, anyway. Loved the main characters and I hope the author, Emma Jameson, writes more in this series.

So then I read

I finished that this morning and started this

When that’s done, probably some time tomorrow afternoon, I’ll start

And that about wraps up this trip, I think…

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Winding down...

I haven’t made very many blog posts this time around because we haven’t done much except read, work, nap and a few dips into the pool.

Yesterday, we went out on a catamaran, though – the Cool Runnings III.

They picked us up at 8:15 am.  We were on time for once, but still the third of 3 couples going from The Crane.  We didn’t make any more pickups.  WooHoo!

So, we set off from the Careenage. This is an inlet into Bridgetown where several ships, boats and catamarans make berth. The “bridge” in Bridgetown is over the Careenage. There are two bridges now. The original is now a foot bridge with the newer, wider one for vehicles.

On any of these ships, they have an open bar and start off with yummy banana bread for a morning snack. After they clear the Careenage, they put up the sails and we’re off.

Tom on mobile – of course!

Our first stop of the morning was Payne’s Bay where Tom swam with the giant sea turtles.  A woman taking pictures was talking kind of snootily to someone that “In Hawaii they gave them flippers…”  I barged in and told her that they couldn’t have flippers at this stop because of the turtles but they would have them at the next.  ”So?!?”  I told her the turtles were an endangered species and didn’t like being kicked in the head with flippers.  Sheesh!

Turtle at Payne’s Bay, Barbados

The second stop was Folkstone Marine Park. All these ships stop there because it’s home to a sunken barge. This creates a home for lots of marine life. I’m not very good at recognizing fish but I always know when I see a school of sergeant major fish.

School of fish, taken from the deck of Cool Runnings III

Our last stop was a swimming stop off Alley’s beach. During this stop, we had a typical Bajan tourist lunch. The main dishes in this are flying fish, barbecue chicken, peas’n'rice, green salad, potato salad, a lo-mein sort of dish and rolls. Sometimes a sweet coleslaw, macaroni pie or beef stew is added but not today. Today’s dessert was carrot cake with cream cheese. Just like at home!

I didn’t get in the water this time but that’s ok – I just love being on the boat.

Back home and into the pool.

The next post will be the one where I list what I’ve been reading on this trip.  It will be fewer books since I’ve been working more than usual…

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They're Baaack!

It was Wednesday and we had breakfast at L'Azure, one of the restaurants here at The Crane.  I told Tom I couldn't take much more of staying in the penthouse.  I felt like it was too big, I wasn't really here, that it was isolating being so far away from everything, that I felt like I was watching the pool area on a TV.

So, after breakfast, we packed our stuff and moved to our "home" - 211.  It just feels so right to be here.

There was no one in 211B so the connecting door was left open.  We actually own this apartment, too, but usually put it in the rental pool.

The year that my dear friend, Sue (SuziQ to Cushies), was here, she stayed in this apartment and used the garden a lot to think about things.  She was going to come back with us the next year, too, but she died first :(  I still miss her so much.  I'm writing this in "Sue's garden" and remembering how special she was.

So, we've been going about our daily business, working mostly, a bit of reading, time by the little pool, a few naps scattered here and there...

Life is good.

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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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