Monday, July 26, 2010

2010 Camp Cushie Tip List (Seattle, Washington)

LisaFriday has shared this on the message boards and has given permission to share with others who are interested in being tested at Dr William Ludlam’s extensive “Camp Cushie”. 

General information on Seattle Pituitary Center at the Swedish Neuroscience Institute can be found here.

Lisa writes:

I just attended Dr. Ludlam's Camp Cushie July 12-16th, 2010...
I plan to use this thread to educate/inspire/encourage/advise anyone planning on going to Camp Cushie...
I will update this thread every time I think of something else that I think would be helpful if you are headed there...

YOU are going to LOVE:
Dr. Ludlam-
Jill Evans, Dr. Ludlam's Patient Care Coordinator (PCC)-
Priscilla and Yolanda (his other PCC's)
Jennifer Mercado (one of his two...never met/saw the other) Nurse Practitioners
Joy and Sigrid and Rebecca and Deb and Bill and Nancy and Maureen: Ambulatory Infusion Nurses
PICC line (You get this first thing Monday am. Will not get 'needle stuck' from that moment gift ever!!!)
Cafeteria yummy and has a huge variety of food that is quite affordable...if you eat a lot, you might spend $20/day...
The INN at Cherry Hill (5th floor of hospital) $75/night for 2 single beds, $80/night for 3 single beds...not fancy, but, clean, comfy and convenient...a MUST! Call Paul at: 206-320-2164 FAX: 206-320-3526
The ICE MACHINE in the communal kitchen at the is 'tiny ice pellets' and makes my water taste so yummy!

What to bring:
Short sleeve shirts because of PICC Line
Even in July, it is cool outside in the mornings, so, bring LAYERS...
Very comfy clothes (draw string pants/with no metal/sports bra/with no you do not have to change clothes for MRI/CT)
EXTRA Alarm Clocks, phones, etc...YOU will have blood drawn every 4 hrs for a couple of CANNOT be late or miss a draw!
Stationary for Thank you will want to write to these incredibly helpful, understanding, encouraging people here...I promise!
A 'shower caddy' to hold your shampoo/razor, etc. because the shower is tiny and has no where to put anything except on the floor of the shower, so, it is difficult to bend down to get what you need...
Robe and Slippers to go down to 1st floor in the night to give your 4 hr. blood draws
Sharpie Marker to label your food/drinks/groceries in the communal kitchen's refrigerator...
Zip loc bags (all sizes) to put leftovers/food/snacks in the communal refrigerator at the INN
Tide Pen for little stains you get along the way...there is a nice washer and dryer with powdered washing soap...NO dryer sheets or softener or bleach provided...
Snacks for your room...popcorn was great for me... there is a microwave in the communal kitchen too.
Lap Top, WiFi is available and is working great in my room right now as I type this info to you!
Money for is located in the lobby on the first floor!
A tote bag (see below)
YOUR personal pillow CASES...they can cover these not so great pillows and make you feel a little more at home...

BRING A TOTE BAG to carry:
YOUR UFC Urine Bottle...
YOUR "HAT" to catch your urine...HA/HA (only need this big bag for Mon/Tues/Wed)
YOUR Cell Phone (Jill and Yolanda will be calling often...answer the phone...things change or are added often)
A pad of paper and a pen to write down these changes and times/directions/phone numbers, etc...
YOUR normal 'purse' stuff for the day...

HERE ARE "TIPS" that I think you might need or want to know:
(Listed in Cushie Brain Order...just as I think of them, by no means are they listed by importance...ha/ha/ha!)
A taxi from the airport (SEA TAC) to the Swedish Hospital Cherry Hill Campus takes about 15 minutes (about $30 tops)
Give them this address to plug into the GPS: 550 17th Avenue Seattle, WA 98122
*If you arrive after 9:30pm-6:30am you must enter through the ER...the ER receptionist will give you your key and directions to the 5th floor... let them know in advance that you will be arriving after hours so that they will be expecting you.
When you check in to the INN, ask for one of the two box fans that a fellow Cushie, HOLLY, donated to the INN for us Cushie's to enjoy.
Bus No.3 or 4 (right outside the hospital) on Jefferson St. will take you downtown to the: PIKE Market, Nordstrom, Macy's, McDonald's, Louis Vuitton, PF Changs, etc.
It costs $ need exact change. Ask for a 'transfer' ticket and it will get you back to the's roundtrip!
The MRI has headphones for music and they give you earplugs...very relaxing!
Ask for copies of your MRI/CT and the notes that go with them and all of your lab results...fill out a form on Friday and take it to Medical records on 1st floor, they will mail them to your home...this is great to have for your personal file.
I actually made friends with the MRI/CT receptionist and she got me copies that I picked up from her the day after the tests...Her name is her!
DO NOT DRINK anything 30 mins prior to any of your 4 hour blood will mess up your results...they do not tell you this...IMPT!
Order the PICC line protector on-line, it is $40...I loved it and will try and find the website and put it on this thread later...sorry.
I was so busy during this week with testing that I really did not have time to read or watch DVD's...
The TV in the INN has about 15 channels: The History/Discovery Channels, A&E, CNN and a local channel- KOMO news, etc.
In the past, some Cushie Camp Patients recommended bringing a soft-sided cooler to keep your urine jugs cold...I brought one with me but, I did not need it because, now, they put a tablet in your jug that mixes with your urine. This additive no longer requires it to be kept much easier on us!
Any prescriptions you may need filled (Dexamethasone for the DEX/CRH test) can be filled at the Pharmacy located on the first floor across from the Gift Shop...The Hours are: 9am to 5:30pm M-F.

If you get scheduled for an Octreotide Scan:
(Only given this test if an ectopic source is suspected...only a few people will have this additional test)
Sue, Raphael and Chuck are wonderful!
You will be injected with Radioactive Isotopes the day before the scans. These isotopes will bind to the bad cells and will show up (light up) on the scan.
I had my head/lungs/abdomen scanned...all clear! YAY!

For this scan:
They will ask you to purchase laxatives. I got them at the Pharmacy on the first floor across from the Gift Shop. I also bought and used Magnesium Citrate to clean out my bowels the nights (2) before the scans... a clean bowel will make the reading more accurate.
OK, well, this is a good beginning to my TIPS LIST for Camp Cushie...

I will continue to update THIS THREAD as my mind remembers things that I think could be useful for you to have:
THE BEST Camp Cushie Experience possible...
While you are there, may you have the "HIGHS" of your Cushie Life!

Lisa who flew to Seattle all the way from Alabama!

Friday, July 23, 2010

Cushing’s Blog Alerts ~ July 23, 2010

10 Years of Cushing's Help. Who Would Have Guessed? - Cushings Help
This website ( first went "live" July 21, 2000 and the message boards September 30, 2000. Hopefully, with this site, I've made some helpful differences in someone else's life. ...
Cushings Help -

What Causes Hypertension in Cushing's Syndrome? | High Blood ...
By admin
Hypertension may or may not occur with Cushing's syndrome. I for one had it for years, never had it, but had friends that could not control it. So that symptom, like any other, can happen, but does not have to happen. ...
High Blood Pressure & Hypertension -

Day 202 in the life of a (former) Cushing's patient - 365 days ...
Day 202 in the life of a (former) Cushing's patient. I will NEVER be through with these orange jugs. UFC's and 17-hydroxycorticosteriods will haunt me until the end of my days. Now it's to see if my levels for replacement hormones need ...
365 days with Cushing's Disease -

survive the journey: The Retrospective: Part III (a guest post)
By (RobinS)
In fact, several years ago, when a family member was on more than 100 mg of prednisone a day (20 times the biological baseline) she did not have the severity of symptoms that Cushing's specialists seem to want to see. ...
survive the journey -

Wednesday, July 21, 2010

10 Years of Cushing’s Help. Who Would Have Guessed?


Ten years ago yesterday I was talking with my dear friend Alice, who runs a wonderful menopause site, Power Surge, wondering why there weren't many support groups online (OR off!) for Cushing's and I wondered if I could start one myself.  We decided that I could.

This website ( first went "live" July 21, 2000 and the message boards September 30, 2000. Hopefully, with this site, I’ve made  some helpful differences in someone else's life.

Who could have known how this site – now sites – could have grown and grown.

It started as a one-page bit of information about Cushing’s  In people, not dogs, horses, ferrets…

Then, it started growing and growing, taking on a life of its own.  To truly emulate Alice, I added message boards in September.  They were really low-quality, a type put together by an old HTML editor but we had members and actually had discussions.

Not too long after, a real board was opened up and things really started happening.  Then we outgrew that board and ended up in our current home.

The message boards are still very active and we have weekly online text chats, live interviews, local meetings, email newsletters, a clothing exchange, a Cushing's Awareness Day Forum, podcasts, phone support and much more.

Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the "Cushie Helper" program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.

Things have changed over the years, though.  The original Cushings-Help site is still updated with new bios, new Helpful Doctor listings, meetings and more but all new articles have moved to a new site - – which is much easier to maintain than the older strictly-HTML site.

Also new are a CushieWiki, a site for the Cushing’s Help Organization, several blogs (of which this is one), three Facebook entities (Cushing's Help Cause; Cushing's Help and Support Group; and the Cushings Help Organization, Inc.); a Twitter stream and much more.

New recently:

NEW! Daily News Summary at Cushing's Daily News

NEW! is now optimized for viewing on PDAs and mobile phones

NEW!  Medical Centers. These are centers which specialize in Cushing's, pituitary or adrenal patients.  If you, as a patient, have one that you'd like to have added, please send any info you may have to Mary O'Connor (MaryO).  Thank you!

Occasional Newsletters are Back: Members of will automatically receive these occasional newsletters. Of course, you may opt-out at any time. Thank you for your interest.  Non-members may subscribe through the Newsletter Subscription module on the left side of this page.

Cushie Toolbar: Be the first to know! The Cushie Toolbar features a Google search box, the 911 Adrenal Crisis! page, the Cushie Reads book recommendations page, Cushie Calendar, all the bios, arranged by diagnosis type or date, add (or update) your bio, our locations around the world, the message boards and chatroom, Helpful Doctors list, add (or update) your Helpful Doctor, support page, scrolling message area for Cushing’s news, Cushing’s blogs, NIH Clinical trials for Cushing’s, pituitary and adrenal, the Cushings Help Organization cause on Facebook, Staticnrg and Cushings on Twitter, new CushieWiki and listen to the Cushing’s podcasts right from this toolbar.

CushieWiki: Please feel free to contribute! The CushieWiki is an ever-changing, ever-growing body of Cushing's knowledge provided by *YOU* and other patients.

Members of the site have additional features:

We’ve grown out of control from that simple one-page info sheet to way more than I could have ever imagined in that phone conversation with my friend.  I would never have thought that I could do any of this, provide these services and touch the lives of so many others.

I also never thought that I would spend hours a day updating, adding, improving, helping, emailing, phoning, paperwork, writing…

But it’s all worth it if the lives of other Cushies are made better.

Here’s to another 10 years…

Tuesday, July 13, 2010

Cushing’s Blog Alerts ~ July 13, 2010

NCLEX Question for Cushing's syndrome | Nursingbuzz
By Dennis_01
Cushing's syndrome NCLEX Question,NCLEX Question,Sample NCLEX Question,Free NCLEX Question,Online NCLEX Question.
Nursingbuzz -

D-Day, Zero Hour - The Weary Zebra- Cushing's Patient w/o Insurance
By The Weary Zebra
I do not know a life without Cushing's so its a bit intimidating. But I know it is for the best. Im so hungry, and I have sinus drainage so my stomach is not good this morning. I didn't sleep well, tossing and turning, but I did sleep. ...
The Weary Zebra- Cushing's Patient... -

Living with Cushing's Disease: In a Hospital AGAIN
By StacyLeigh
0 comments: Post a Comment. Older Post Home. Subscribe to: Post Comments (Atom) · Living with Cushing's Disease. This is my description of wha I felt while going through all the treatments and living my life with this awful disease ...
Living with Cushing's Disease -

Thursday, July 1, 2010

Cushing’s Blog Alerts ~ July 1, 2010

Cushing's & Cancer: Cushing's Syndrome and Receiving Social ...
By MaryO
Cushing's syndrome is a relatively rare disorder. It usually happens to adults between the ages of 20 and 50. An estimated 10 to 15 out of every million people in the United States are affected by it each year. ...
Cushing's & Cancer -

Day 182 in the life of a (former) Cushing's patient - 365 days ...
I am offended by the above slide and accompanying audio from a presentation by a supposed Cushing's expert. I have good reason to add the "supposed". To read more about the origins of this slide and how/when it was presented (including ...
365 days with Cushing's Disease -

NCLEX Question Cushing's Syndrome | July 2010 Nursing Board Exam ...
By Postagent
Sample Test Question For Cushing's Syndrome,Sample NCLEX Question,NCLEX Question with rationale,Free NCLEX QUestion.
July 2010 Nursing Board Exam... -

survive the journey: I am offended.
By (RobinS)
In February, the Cushing's Support and Research Foundation (CSRF) hosted a Cushing's Patient Education Day. I was not able to go either physically or financially at the time. This was sponsored by an unrestricted educational grant from ...
survive the journey -

What Causes Hypertension in Cushing's Syndrome? | All About ...
Having trouble understanding exactly what causes raised blood pressure in Cushing's syndrome. The closest I've gotten thus far is that hypertension in.

Cushing's Syndrome/ Buffalo Hump.
Has anyone had any experience here with Cushing's Syndrome?. Somebody mentioned to me on Curezone and since then it's been on the back of my mind.

Corcept Therapeutics Nears Completion of Enrollment in Phase 3 ...
"We are near our target of dosing 50 patients in our Phase 3 study of CORLUX for the treatment of Cushing's Syndrome. We remain on track to announce top ...