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.

 

Posted via email from Mary'Out and About

Dr. Ted Friedman will return for his Third Live Voice Interview, February 13, 2011

Theodore C. Friedman, M.D., Ph.D. has opened a private practice, specializing in treating patients with adrenal, pituitary, thyroid and fatigue disorders. Dr. Friedman has privileges at Cedars-Sinai Medical Center and Martin Luther King Medical Center. His practice includes detecting and treating hormone imbalances, including hormone replacement therapy. Dr. Friedman is also an expert in diagnosing and treating pituitary disorders, including Cushings disease and syndrome.

Dr. Friedman's career reflects his ongoing quest to better understand and treat endocrine problems. With both medical and research doctoral degrees, he has conducted studies and cared for patients at some of the country's most prestigious institutions, including the University of Michigan, the National Institutes of Health, Cedars-Sinai Medical Center, and UCLA's Charles Drew University of Medicine and Science.

He's the "Dr House" of endocrinology. He loves complicated cases and is an outstanding diagnostician.

He also has a PhD in pharmacology.
The Everything Health Guide to Thyroid Disease: Professional Advice on Getting the Right Diagnosis, Managing Your Symptoms, And Feeling Great (Everything: Health and Fitness) (Paperback)

by Theodore C., M.D., Ph.D. Friedman (Author), Winnie Yu (Author)

If you have a thyroid condition, you are not alone. An estimated 13 million Americans suffer from thyroid disease. The Everything Health Guide to Thyroid Disease, cowritten by acclaimed thyroid specialist, Theodore C. Friedman, is the authoritative handbook you need to help you live with this disease. You'll learn about:

• How the thyroid functions and dysfunctions
• Who is at risk for thyroid disease
• Well-known thyroid disorders-hyper, hypo, and Grave's disease
• Far-reaching effects (weight loss and gain, anxiety, depression)
• Treatments and living with the disease

Complete with a glossary, additional resources, and even a section on thyroid disease in children, The Everything Health Guide to Thyroid Disease is the complete guide for everyday healthy living.

Sample chapters (PDF format)

• Chapter 1
• Chapter 2
• Chapter 3
• Chapter 4
• Chapter 5

Kate (Fairley) and Dr. Ted Friedman on National Geographic TV, September 2007

Read Dr. Friedman's First Guest Chat, November 11, 2003.
Read Dr. Friedman's Second Guest Chat, March 2, 2004.
Listen to Dr. Friedman First Live Voice Interview, January 29, 2009.
Listen to Dr. Friedman Second Live Voice Interview, March 13, 2009.

Dr Ted Friedman will return for his Third Live Voice Interview, February 13, 2011, 9:00PM eastern. Listen live at http://www.blogtalkradio.com/CushingsHelp

Posted via email from Cushings Podcasts

40 Days of Thankfulness: Day Twenty

Today is a very special day for me.  I am thankful to so many, named and unnamed.  This is the 23rd anniversary of my pituitary surgery at the NIH in Bethesda, Maryland.

I couldn't have gotten to surgery without a myriad of books from the public library, my parents who watched my son while I was at NIH for 6 weeks pre-op, an oncologist, the endo who got me there... So many, and so many years of sickness just trying to get diagnosed.

I won't bore anyone with my "story" but if anyone is interested, it's available here.

The short version is that I knew I was sick starting about 2003.  No doctors would offer any help.  A chance description of Cushing's convinced me that this was what I had.  Even when I presented Xerox copies of medical texts to doctors, they would all say that I couldn't have it.  It was "too rare".  I was fat.  I cheated on my diet.  I was depressed.  Go away.  Take drugs.

I finally got to an endo who got me into NIH in 2006.  During six weeks away from home as an in-patient, they diagnosed me with pituitary Cushing's.

For those who don't know, here's where the pituitary gland is:

I had a 7 year old son and I was sure I was going to die during surgery, if not before. I wrote letters "just in case".  I was terrified of what could happen and also what would happen if I never had surgery.  I knew I couldn't live with the Cushing's.

A college contempory of mine wasn't so lucky.  Luckily, I didn't read this in the Alumni magazine until after my surgery. She had the same operation. She came from my home town. We  had the same major at the same college, we were the same age. We had the same surgical and medical team. I recovered. The other woman died during surgery.

So, today, on my 23rd anniverary, I am thankful that I saw my son grow up, that my husband stuck with me, that I'm still alive, that I'm able to help others beat Cushing's...

Thanks to Dr Edward Oldfield, NIH, nurses, doctors, Fairfax County Public Library and how it all worked out in the end.

 

Posted via email from Cushings Help

40 Days of Thankfulness: Day Fifteen

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I hope I'm not jinxing myself but today I am thankful that I haven't had any migraines for a long time.

It's not "just" not having migraines, but the fact that, should I get one, there's nothing I can do about them anymore.

I used to get migraines quite often, a hormone thing probably.  I spent lots of hours in a completely dark room, blocking out sound, trying to keep my head from pounding.

There was a long period of time that I had a migraine 6 days out of the week for several weeks.  By accident, a friend asked me on a Monday if I had one that day and that started me thinking - why do I have them every day except Mondays?  I figured out that it wasn't a migraine at all but an allergy headache - I was allergic to the bath oil I was using Monday-Saturday.  I gave that to my Mom and those headaches went away.

I still often get allergy headaches.  Since my Cushing's transsphenoidal pituitary surgery, I can't smell things very well and I often don't know if there's a scent that is going to trigger an allergic reaction.  In church and elsewhere, my Mom will be my "Royal Sniffer" and if someone is wearing perfume or something scented, she'll let me know and we'll move to a new location.

There's a double whammy here - since my kidney cancer surgery my doctor won't let me take NSAIDs, asperin, Tylenol, any of the meds that might help a headache go away.  My only hope would be that coffee from Day Fourteen. And that's definitely not usually enough to get rid of one of these monsters.

So, I am very thankful that, for the moment, I am headache/migraine free!

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Posted via email from Cushings Help

Four Years Post-Op Kidney Cancer Surgery

Yesterday was my 4-year surgery anniversary.  Amazing how time flies.  If anyone had told me then that I’d have four years to live, it wouldn’t have seemed like “enough”, though.

Four years ago yesterday was also the first (and only!) Cushie Cruise, leaving for Bermuda on Mother’s Day.  I wasn’t able to go due to financial reasons, but a very kind Cushie Angel made it possible.  I got new clothes, and was very excited.  I’d never been to Bermuda.

So, along comes this surprise cancer.  I told my surgeon-to-be while still in the ER about this cruise and he said no way could I go.

I ended up getting out of the hospital the day before the cruise, the day before Mother’s Day, and the doctor was right.  There would have been no way I could have gone and enjoyed this cruise.  It was a few weeks before I could even walk, and several days before I could consider getting off pain meds.

Another lucky Cushie got to go in my place, so all was not lost.  I got to use my new clothes on a “second chance” cruise and I’m now 4 years cancer free!

Happy endings all around!

Here’s a review of the cruise by other non-Cushies with lots of pictures: http://www.cruisereviews.com/RoyalCaribbean/ExploreroftheSeas115.htm

If you’re a member of the Cushing’s Help message boards, you can see cute pictures of “Penelopee Cruise” at http://cushings.invisionzone.com/index.php?showtopic=16494.  Penelopee was made from someone’s 24-hour UFC jug.  The pictures and captures are a real hoot.

At four years post-op, I have no signs of my cancer returning or showing up in another organ.  (Hooray!)  I do have an enlarged lymph node between my lungs but that seems stable at this time.

Energy levels are still very low thanks to the combination of post-pituitary surgery panhypopituitarism, the removal of one adrenal during kidney surgery and low-functioning remaining adrenal.  Beats the alternative, though!

Daily (l-o-n-g) naps are a must and, I guess, will always be.  Doctors haven’t seem to come up with any ideas for extra energy for me.

I don’t have any lingering symptoms from my bout with cancer, so it’s all good.

As I learned to say in church yesterday, despite my illnesses, “I am blessed!”

About Me

I am a Cushing's and kidney cancer (renal cell carcinoma) patient, founder, owner and webmaster of Cushing's Help and Support, web designer, piano teacher and mom.

I am a Cushing's patient who has dealt with Cushing's symptoms and the aftereffects of pituitary surgery since 1983.

Because I had very little support for my symptoms, diagnosis and surgery, I decided to try to make things a little better for other patients and started a support site called Cushing's Help and Support in 2000. The site has grown to astronomical numbers. This disease isn't as rare as doctors have told us!

In 2006, I was also diagnosed with kidney cancer (renal cell carcinoma). My left kidney and adrenal gland were removed. Having an adrenal gland removed complicates my post-Cushing's symptoms.

I am not planning to have any more rare and unusual diseases.

My entire bio to date can be found here: http://www.cushings-help.com/maryos_story.htm