Friday, February 21, 2014

7 week post op update

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A family member, 2nd cousin, asked how I was doing. I decided to share it here for all to see.  "Thank you for asking! I'm seven we...

What Happens after Diagnosis

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I wanted to share something I recently wrote to a mom asking questions about her 20-year-old son's future as an undiagnosed Cushie. She...
Thursday, February 20, 2014

Print for Fridge

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Tuesday, February 18, 2014

Cushing's Changes You

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I learned I can keep the changes I like and dump the ones that no longer suit me. Which is which? I get to decide.
Monday, February 17, 2014

Happy Presidents Day!

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Today, I share a special Presidents Day treat. It brings a smile to my face to know what is possible for me.  BLAers and pre-BLAers. We ca...
Friday, February 14, 2014

You are the Medical Expert

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I hear this question among Cushies and non Cushies alike: Should we change our cortisol dose on our own or wait to speak to a doctor first? ...
Thursday, February 13, 2014

National Organization of Rare Diseases Supports Cushies with Grants for Medical Expenses

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APPLY NOW: NORD ANNOUNCES NEW CUSHING'S SYNDROME PATIENT ASSISTANCE PROGRAM In partnership with Corcept Therapeuti...
Saturday, February 8, 2014

Laparoscopic Right Adrenalectomy

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I am fascinated by the removal of my adrenal glands. Reaching hormone balance after BLA is challenging but doable. The surgical aspect fasci...
Thursday, February 6, 2014

Empower EMS nationwide to administer the life saving drug solucortef in emergencies for Adrenal Insufficient patients. | We the People: Your Voice in Our Government

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EMS must be required to carry Solu-Cortef of ambulances. We are currently fighting state by state to get this basic protection in place. ...

Solu-Cortef administration

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Giving a shot to save your life is extremely overwhelming. Our loved ones aren't thrilled about the responsibility of doing it for us, ...

Trouble refilling Solu-Cortef

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I tried to refill my prescription of Solu Cortef. The Pharm Tech told me they no longer have this Rx. I knew about the new number but I for...

Cortisol pumps in the future

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I hope BLA patients will be next to be included in the study. We can benefit from a pump just as type 1 diabetics do. Right now, we BLAers a...
Thursday, January 30, 2014

Difficult to Diagnose

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Almost seven years after I first was dismissed over my concerns I suffered from Cushing's, I am disheartened to talk with undiagnosed Cu...
Wednesday, January 29, 2014

No "Minor Surgery" after BLA

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Retro peritoneal approach, like I had There is no such thing as a minor surgery or a simple outpatient procedure. This is one if many...

Aldosterone can be just as important as Cortisol

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Our good friends at Stop the Thyroid Madness shared this post about aldosterone. For a recent BLAer, this importance of this hormone cannot ...
Tuesday, January 28, 2014

Describe Life after BLA

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Nah. I don't feel like it.  I don't want to write down all my happenings. I want to clearly explain everything but that takes time. ...
Friday, January 24, 2014

Change through Service

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I read many books and had many discussions about Martin Luther King, Jr. over the last week with my young daughter. We even did this MLK egg...
Wednesday, January 15, 2014

If I Were an Owl...

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... this would totally be me -- fighting for my  Cushing's diagnosis,  pituitary surgery date,  rediagnosis,  pituitary surgery date,  r...
Tuesday, January 14, 2014

My Trump Card, Now and Forever.

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!! TWO BRAIN SURGERIES and ADRENALECTOMY!! Pbbbbbbsssssttttt :P
Monday, January 13, 2014

My Favorite Poem

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Cushies, stay strong in your fight for health and happiness.  Rudyard Kipling's If-- IF you can keep your head when all about you  Are l...
Sunday, January 12, 2014

Pills to Live

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My mama brought my meds to me in bed. After I took my 5 mg HC and 0.05 Florinef, I proudly announced, "Good. That'll keep me alive ...
Saturday, January 11, 2014

CUSHDAR

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Cushdar is a word I made up 10 mins ago. Similar to radar and sonar, it's the keen sixth sense Cushies develop about their bodies and co...

In Search of the Perfect Siesta

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Image courtesy of The Guardian. I'm post op BLA day 11 and made it through day three at dose 25/5 (hydrocortisone 25 mg at 8 am, 5 mg at...
Friday, January 10, 2014

Cushing's Support & Research Foundation

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Cushing's Patient Education Day, 2014 The CSRF is holding a Cushing's Patient Education Day in Atlanta, GA,  February 28 - March 1, ...
Wednesday, January 8, 2014

Good news 7 days post op BLA

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I wanted a quantitative way to track my progress post BLA.  My mother, a fantastic seamstress, took my measurements in 12 different places...
Tuesday, January 7, 2014

Dr Friedman's Adrenal Gland Chapter

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Guess who wrote the adrenal chapter of this very well-known and recognized medical textbook? Our very own Dr. Theodore Friedman! "Stude...
Monday, January 6, 2014

Patient vs. The Labs: Are You Ready?

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> My friend Robin gives a wonderful explanation of the tests used to diagnose Cushing's and then ways the labs can ruin the hard work...
Sunday, January 5, 2014

Bye Bye Adrenals, Hello New Friends

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Adrenal glands, red in this image, are buried under all that human organ stuff in the abdomen. I used to see BLAers, a term of endearment fo...

Update

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I was discharged on Friday on a dose of 45 mg hydrocortisone at 8 am and 15 mg hydrocortisone at 3 pm, plus Florinef 0.05 mg twice a day. ...
Wednesday, January 1, 2014

Happy New Year

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Tuesday, December 31, 2013

Update

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2:21 pm pst - surgeon just visited. He and I are ready to go. He will grab a sandwich. I told him "No turkey!" I asked him to gi...

Teaching Moments

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I'm chatting with my nurse, Olga from Moscow. She is very interested in all I was telling her about Cushing's. She's gonna check...

BLA on the way

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Surgery won't be for a while. 2nd patient just went back. They let me come back to the pre-op room to lie down and get comfortable. It...

New Best Friend

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I know I will make it through with my new best friend / favorite three words for this week: ~ patient-controlled dilaudid ~

Surgery Selfie

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Waiting Room with a View

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Let's Get This Party Started

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My surgery is scheduled for 1:00 pm on 12/31/2013.  Call time is 10:30 am.  I am the third surgery of the day.  I am tired to...
Sunday, December 29, 2013

Goodbye Cushing's: Finally, I get my BLA

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I am finally approved for my BLA in Los Angeles, CA for December 31, 2013.  It's our wedding anniversary, so my husband said he would ta...
Tuesday, December 17, 2013

Patient Information for Laparoscopic Adrenal Gland Removal (Adrenalectomy) from SAGES

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I thought this was a good read. It includes things to do pre-op that I haven't seen written down. Most of these, though, don't alway...
Sunday, December 8, 2013

Inflammation: Why You STILL Have Low Thyroid Symptoms

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I can truly appreciate this video of a doctor explaining how a patient with hypothyroid symptoms show normal lab results, stump doctors, and...
Friday, December 6, 2013

Life Lines: My Cushie Friends

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In life's game of Who Wants to be a Healthy Patient, my phone-a-friend lifeline will be a Cushie friend over any endocrinologist, any da...

We *are* so brave

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From our friends over at www.Butyoudontlooksick.com .
Thursday, December 5, 2013

Cushing's, Cortisol and Receptors

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More research from the Dutch and Germans. I have no idea what this means! My Cushie brain can not piece together this new information.  I ha...

Support your Loved One with Chronic Pain

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Pete Beisner knows a lot about supporting a partner in chronic pain. Here, he shares insights on how to take care of the person you lo...

Solu-Cortef on the Ambulances

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Print this flyer and give to your EMS team http://www.caresfoundation.org/productcart/pc/EMS/Flyer.pdf

Non-Green States => Preventable Deaths

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Solu-Cortef Emergency Medical Response CARES Foundation is another non-profit organization that is working to educate EMS professio...

Hey EMS Professionals: Study Up

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Kudos to  the  Massachusetts Department of Public Health for developing and sharing this presentation . "This presentation is intend...
Wednesday, December 4, 2013

RIP Sarah: Another Senseless Cushie Death

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Sarah Thomas, 30, died six hours after EMS refused to take her to the hospital or administer her the life-saving Solu-Cortef injecti...