Cushing’s Help message board member sherryc presented this PowerPoint at Pioneer Pacific College in 2017. I am resharing since Sherry recently died.
It took a lot of work with her failing memory but she did It! She wanted to get the word out about Cushing’s and her journey with this awful disease.
She says that it took a lot of work with her failing memory but she did It! She wanted to get the word out about Cushing’s and her journey with this awful disease.
Over the years, we went on several Windjammer Barefoot Cruises. Â 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. Â One trip we were supposed to go to Saba but couldn’t make port. Â 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. Â 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. Â (You wondered how I was going to tie this together, right?)
The cruise was uneventful, other than the usual mishaps like hitting docks, missing islands and so on. Â Until it was a particularly rough sea one day. Â I was walking somewhere on deck and suddenly a wave came up over the deck making it very slippery. Â I fell and cracked the back of my head on the curved edge of a table in the dining area. Â 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. Â 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.
“In October 1998, the majestic schooner Fantome came face-to-face with one of the most savage storms in Atlantic history. The last days of the Fantome are reconstructed in vivid and heartbreaking detail through Jim Carrier’s extensive research and hundreds of personal interviews. What emerges is a story of courage, hubris, the agony of command, the weight of lives versus wealth, and the advances of science versus the terrible power and unpredictability of nature.”
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 seen several people mention on the message boards that they had a traumatic head injury of some type in their earlier lives.
Because it’s a Sunday again, this is a semi-religious post…
After I was finished with the Cushing’s long diagnostic process, surgery and several post-op visits to NIH, I was asked to give the scripture reading at my church. The man who preached the sermon that week was the survivor of a horrific accident where he and his family were hit by a van while waiting at an airport.
I thought I had written down the scripture reading carefully. I practiced and practiced. I don’t like speaking in front of a crowd but I said I would. When I got to church, the reading was different from what I had practiced. Maybe I wrote it down wrong, maybe someone changed it. Whatever.
The real scripture turned out to be Psalm 116. I got very emotional while reading this and started crying when I got to verse 8 “For you, O LORD, have delivered my soul from death“.  Others in the congregation who knew part of my story were very moved, too.
Psalm 116 (New International Version)
1 I love the LORD, for he heard my voice;
he heard my cry for mercy.
2 Because he turned his ear to me,
I will call on him as long as I live.
3 The cords of death entangled me,
the anguish of the grave came upon me;
I was overcome by trouble and sorrow.
4 Then I called on the name of the LORD:
“O LORD, save me!”
5 The LORD is gracious and righteous;
our God is full of compassion.
6 The LORD protects the simplehearted;
when I was in great need, he saved me.
7 Be at rest once more, O my soul,
for the LORD has been good to you.
8 For you, O LORD, have delivered my soul from death,
my eyes from tears,
my feet from stumbling,
9 that I may walk before the LORD
in the land of the living.
10 I believed; therefore I said,
“I am greatly afflicted.”
11 And in my dismay I said,
“All men are liars.”
12 How can I repay the LORD
for all his goodness to me?
13 I will lift up the cup of salvation
and call on the name of the LORD.
14 I will fulfill my vows to the LORD
in the presence of all his people.
15 Precious in the sight of the LORD
is the death of his saints.
16 O LORD, truly I am your servant;
I am your servant, the son of your maidservant;
you have freed me from my chains.
17 I will sacrifice a thank offering to you
and call on the name of the LORD.
18 I will fulfill my vows to the LORD
in the presence of all his people,
19 in the courts of the house of the LORDâ
in your midst, O Jerusalem.
Praise the LORD.
This Psalm has come to have so much meaning in my life. When I saw at a book called A Musician’s Book of Psalms each day had a different psalm. “My” psalm  was listed as the reading for my birthday, so I had to buy this book!  For a while, it was the license plate on my car.
I used to carry a print out of this everywhere I go because I find it very soothing. “when I was in great need, he saved me.” This print out is in a plastic page saver but now I have this info on my phone and iPad.
On the other side there is an article I found after my kidney cancer. Â You can read that article in Fridays post.
This is one of the suggestions from the Cushing’s Awareness Challenge post:
What have you learned about the medical community since you have become sick?
This one is so easy. I’ve said it a thousand times – you know your own body better than any doctor will. Most doctors have never seen a Cushing’s patient, few ever will in the future.
If you believe you have Cushing’s (or any other rare disease), learn what you can about it, connect with other patients, make a timeline of symptoms and photographs. Read, take notes, save all your doctors’ notes, keep your lab findings, get second/third/ten or more opinions. Â Make a calendar showing which days you had what symptoms. Â Google calendars are great for this.
This is your life, your one and only shot (no pun intended!) at it. Make it the best and healthiest that you can.
When my friend and fellow e-patient Dave deBronkart learned he had a rare and terminal kidney cancer, he turned to a group of fellow patients online and found a medical treatment that even his own doctors didn’t know. It saved his life.
In this video, he calls on all patients to talk with one another, know their own health data, and make health care better one e-Patient at a time.
This is one of the suggestions from the Cushing’s Awareness Challenge post:
What have you learned about the medical community since you have become sick?
This one is so easy. I’ve said it a thousand times – you know your own body better than any doctor will. Most doctors have never seen a Cushing’s patient, few ever will in the future.
If you believe you have Cushing’s (or any other rare disease), learn what you can about it, connect with other patients, make a timeline of symptoms and photographs. Read, take notes, save all your doctors notes, keep your lab findings, get second/third/ten or more opinions. Â Make a calendar showing which days you had what symptoms. Â Google calendars are great for this.
This is your life, your one and only shot (no pun intended!) at it. Make it the best and healthiest that you can.
When my friend and fellow e-patient Dave deBronkart learned he had a rare and terminal kidney cancer, he turned to a group of fellow patients online and found a medical treatment that even his own doctors didn’t know. It saved his life.
In this video he calls on all patients to talk with one another, know their own health data, and make health care better one e-Patient at a time.
What am I doing for Rare Disease Day?
For me, it’s more that one day out of the year. Each and every day since 1987, Â I tell anyone who will listen about Cushingâs. Â I pass out a LOT Cushingâs business cards and brochures.
Adding to websites, blogs and more that I have maintained continuously since 2000 – at mostly my own expense.
Posting on the Cushing’s Help message boards about Rare Disease Day. Â I post there most every day.
Adding info to one of my blogs about Cushingâs and Rare Disease Day.
Adding new and Golden Oldies bios to another blog, again most every day.
Thinking about getting the next Cushingâs Awareness Blogging Challenge set up for April…and will anyone else participate?
And updating https://www.facebook.com/CushingsInfo with a bunch of info today (and every day!)
Talking to anyone who will listen about Cushing’s. I was delighted recently to meet a non-endo doctor at a clinic who actually knew about Cushing’s!
~~~
Why am I so passionate about Rare Disease Day?
I had Cushing’s Disease due to a pituitary tumor. I was told to diet, told to take antidepressants and told that it was all my fault that I was so fat.
My pituitary surgery in 1987 was a “success” but I still deal with the aftereffects of Cushing’s and of the surgery itself.
Even after my successful surgery at the National Institutes of Health (NIH), a new doctor told me I had wasted my time. Cushing’s wasn’t real.
I also had another Rare Disease – Kidney Cancer, rare in younger, non-smoking women.
And then, there’s the adrenal insufficiency…
And growth hormone deficiency…
If you’re interested, you can read my bio here https://cushingsbios.com/2013/04/29/maryo-pituitary-bio/
I’m on my second round of GH (I had to stop the first time due to cancer). I’ve been on Omnitrope since 2006 and the threads inside my pen must have worn down – I’m having a lot of trouble injecting it now.
I insert the needle and have to balance on the edge of the countertop in the bathroom and sort of lean in. Has anyone else had to replace the pen? I told my insurance company who sends the actual drug and they said “not us”. I don’t know if my endo has to prescribe another “starter kit” or what.
I did find a website that will sell me a new one for $200 but I’d rather not buy one that way. I found nothing on the Novartis website about this, either 
Anyone?
Please respond here or on the message boards.
Thanks!
Originally posted on Facebookâââââââ November 14, 2017:
To all my Cushie friends who are still dealing with this horrible disease, keep fighting, donât ever give up, you will get better. I told a very close friend of mine the other day, if I had the power I would heal everyone you today.  Cushingâs is a horrible disease, and unless you have been through it there is no way anyone could ever understand it.
After a year and a half  since my BLA and I am the healthiest, happiest person I have been in a very long time. I am working out with a personal trainer once a week because I am determined to regain the strength I lost due to having Cushingâs for six very long years.   I have a long way to go and it is not going to happen overnight but it will happen.
I live each day to the absolute fullest and enjoy every minute of every day, I am so grateful to have made it through to the other side, not without some emotional and physical scars, but I made it none the less.
I think about and pray for all of you every day because without your knowledge and support I donât know that I would have made it.
To those of you who are still on the boards please feel free to share this post and my story to everyone there. I am sorry I donât go on the boards any more, but as I said I didnât make through without some emotional scars.
I love you all, god bless and be good to yourself always.
Today  is the birthday, or anniversary, of the Cushing’s Help message boards. They were started September 30, 2000 (The rest of the site started earlier that year on July 21, 2000)
As of today, we have 73,130 members who have made countless posts.
Find the message boards here:Â http://cushings.invisionzone.com/
If you can help, please respond here or on the Message Boards. Thanks!
IÂ Â have many symptoms of cushings, Â I have used cloatasol propionate for about 5 years for my chronic eczema I was on oral steroids in July then high dose steroids again in September. thejuly in July it was for a severe eczema breakout and in September it was for sudden hearing loss. Â Now I need a hearing aid. Â I seen one place after googling that connects cushings with sudden hearing loss. Â Has anyone dealt with this?
