“Genetics and runaway appetite are not the only causes of obesity. Sometimes, your own body can turn against you in ways you never thought possible.” ~The Science of Obesity
Friday, January 24, 2014
Change through Service
Wednesday, January 15, 2014
If I Were an Owl...
Tuesday, January 14, 2014
Monday, January 13, 2014
My Favorite Poem
Sunday, January 12, 2014
Pills to Live
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 until the morning."
She didn't care for my joke.
Saturday, January 11, 2014
CUSHDAR
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 cortisol cycles that defy scientific or medical explanation. A Cushie always knows best.
In Search of the Perfect Siesta

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 3:30 pm). I dropped from 35/7.5 (12.5 mg is a little too big of a drop) because I had symptoms of high cortisol again: insomnia, 5 new pimples on my face, a small boil on my chest, and couldn't take a nap during the day for two days. Oh the misery! Haha Also, my mom pulled my husband aside and asked about my medication. She said I had been talking nonstop all day (no, really?!)
** A cortisol meter one day would be nice although I'm pretty impressed with my CUSHDAR. **
On 25/5, I am extremely fatigued by 1 pm and I have happily resumed napping for 2-3 hrs in the late pm. I have no other signs of AI. I am doing pretty well, but I wanted to post and explain my absence. My online and FB presence is spotty, and frankly what I see in the first 10 mins gets my attention for the hour I'm online. I wish everyone well and hope you are enjoying 2014. I love it. Best year yet.
PS. Did I already post about dropping dose and talking too much? Shoot. I don't even remember anymore.
Friday, January 10, 2014
Cushing's Support & Research Foundation
Cushing's Patient Education Day, 2014
The CSRF is holding a Cushing's Patient Education Day in Atlanta, GA, February 28 - March 1, 2014. You can register to attend through our website.
Click here for more information and to register
http://csrf.net/news-events/cushings-patient-education-day-2014/
Wednesday, January 8, 2014
Good news 7 days post op BLA
** double checked many times for accuracy
Tuesday, January 7, 2014
Dr Friedman's Adrenal Gland Chapter
Monday, January 6, 2014
Patient vs. The Labs: Are You Ready?
>
> http://survivethejourney.blogspot.com/2012/04/day-16-of-cushings-awareness-challenge.html?m=1
Sunday, January 5, 2014
Bye Bye Adrenals, Hello New Friends
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 for those Cushies who have opted for surgical intervention with bilateral adrenalectomy, and watch them with awe and amazement, thinking they were BRAVE-- so brave to face uncertainty of Addison's because they knew, just knew, that shutting off the spiget of cortisol was the right thing to do. Taking that leap into the unknown is a very difficult thing to do, especially when the medical community and even family and friends warn you of the risks, lifelong changes, and irreversibility of the procedure.
Now that I have had my BLA, I *know* that we Cushie BLAers are brave, and that I am brave, too. This group of brave souls will save each other's lives over and over. We do so gladly. We reach out to one another for help and we hold on to one another in crisis. We are forever bonded by what we lack: adrenals.
Update
I have been napping a lot, and my mind is calm. My pain level is good--under control. I was hoping to feel this good a few weeks from now. I'm so HAPPY! My brain and body are no longer fighting each other. They now work together towards the common goal of health and wellness. Have a good Sunday, everyone!
- Melissa
Current dose is 40 and 15 hydrocortisone, or 40/15 for short.
Wednesday, January 1, 2014
Tuesday, December 31, 2013
Update
Teaching Moments
Hi Olga!!
BLA on the way
Not many people here!
Very high tech hospital. QR codes on patient wrist band and very cool patient-in-surgery tracking system. My husband can look at a large screen in waiting room and know by the color where I am.
New Best Friend
~ patient-controlled dilaudid ~
Let's Get This Party Started
I made two word bubbles two years ago. The first one focused on the difficulties of life with Cushing's. This one focuses on new life once Cushing's is gone. Today, just in time for my BLA, I post this. It truly makes me smile knowing that these words mean so much to me as a sick person. With this surgery, I finally get my chance to get it all back and find my new places of joy. I can't wait to get back to traveling, running errands, visiting with my friends, walking around just to see what we could see. ROLLERBLADING! I really miss rollerblading. One day soon, I will be able to stand up on those inline skates and blade. I am grateful for all the opportunities for growth that lie before me.
Sunday, December 29, 2013
Goodbye Cushing's: Finally, I get my BLA
There has been a lot of activity in the past two months. In November, I tested again and got the highest and most conclusive tests results confirming Cushing's once again. My Cushing's specialist cleared me for surgery. Surgeon set a surgery date of 12/17/13 and sent me to staff endocrinologists to confirm. First endocrinologist, a diabetes specialist, reviewed my case, said no, and blocked my surgery. After imploring the surgeon to help me, he scheduled an appointment with another endocrinologist. She was fascinated but perplexed by my case. I'm a medical curiosity! She invited another doctor in. I debated two endocrinologists at the same time for two hours. We spread all my photos, charts, lab results, MRI studies, and clinic notes across the table. They were misinformed on many aspects of the medical literature for Cyclical Cushing's but wouldn't listen to me. "Bilateral adrenalectomy is not reversible! You will be on medication the rest of your life! You will be miserable!" They blocked my surgery even though I had a doctor -- a NIH-trained physician who specializes in Cushing's and sees 1000 Cushing's patients in his practice -- who referred me to surgery. My surgery on December 17 was cancelled.
I left the hospital, dejected, uncertain, and suicidal. I know I am dying inside this broken body. My family circled the wagons and protected me. My mom flew in from out of state to help care for me, my husband, and daughter. She spent Christmas away from my father and family for the first time ever just to be with us. I continued to test per the deal I struck with the endocrinologists but I quickly tapped out. Three 24-UFCs with 17-ohcs, five midnight saliva cortisol tests, plus a low dose dexamethasone test really did me in. Test results showed even more high tests that point to hypercortisolemia: two high urine cortisols in 17-ohcs and two high MN cortisol salivas (2x and 3x upper limit of normal). I suppressed on dex test, as many cyclical Cushing'a patients do. My surgeon agreed to do the surgery again.
When I see the photos, I feel both sadness and hope. Sadness because of all the time I have lost to be my best self. Hopeful now that I can say goodbye to her and start a new life. Those two Melissas are gone. I will never be those people again. Hopeful because the new Melissa will be the MELISSA REMIX - the best combination of us all.
Tuesday, December 17, 2013
Patient Information for Laparoscopic Adrenal Gland Removal (Adrenalectomy) from SAGES
Society of American Gastrointestinal and Endoscopic Surgeons
http://www.sages.org/publications/patient-information/patient-information-for-laparoscopic-adrenal-gland-removal-adrenalectomy-from-sages/
Sunday, December 8, 2013
Inflammation: Why You STILL Have Low Thyroid Symptoms
I can truly appreciate this video of a doctor explaining how a patient with hypothyroid symptoms show normal lab results, stump doctors, and get passed around but never treated. This has happened to me! I, too, have inflammation, and everyone including the PCP, chiropractor, acupuncturist, endocrinologist, rheumatologist, and psychiatrist have all taken note of my edema, or swelling. My massage therapist ALWAYS says by body is inflamed.
So, this doctor seems to understand the runaround that patients get, explains why we get the runaround, and offers advice about how to solve the inflammation "problem." He has a series of YouTube videos. I'll make my way through them eventually. - Melissa
Hidden Cause #20 Why You STILL Have Low Thyroid Symptoms - Inflammation Blocks T3 Receptor
http://youtu.be/ljRWZ9gCxws
Friday, December 6, 2013
Life Lines: My Cushie Friends
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 day of the week and twice on Sunday.
Thursday, December 5, 2013
Cushing's, Cortisol and Receptors
Preoperative Normalization of Cortisol Levels in Cushing's Disease After Medical Treatment: Consequences for Somatostatin and Dopamine Receptor Subtype Expression and In Vitro Response to Somatostatin Analogs and Dopamine Agonists
http://m.jcem.endojournals.org/content/98/12/E1880.abstract
Support your Loved One with Chronic Pain
Solu-Cortef on the Ambulances
Print this flyer and give to your EMS team
Non-Green States => Preventable Deaths
CARES Foundation is another non-profit organization that is working to educate EMS professionals while getting Solu-Cortef on every ambulance. Their members face congenital adrenal hyperplasia and need the hydrocortisone dose via Solu-Cortef, too. They keep track of legislative status by state and advocates for us to make the change happen in our town and state.
We have a long way to go before these states are all green. So, let's all get started and help our friends. -M
Hey EMS Professionals: Study Up
"This presentation is intended for EMTs of all certification levels. We recommend that you review the slides from start to finish, however hyperlinks are provided in the table of contents for fast reference. Certain slides have additional information in the ‘notes’ section. This presentation was created by MA EMS for Children using materials and intellectual content provided by sources and individuals cited in the “Resources” section. "
& Trauma System gets it right.
Wednesday, December 4, 2013
RIP Sarah: Another Senseless Cushie Death
![]() |
| Sarah Thomas, 30, died six hours after EMS refused to take her to the hospital oradminister her the life-saving Solu-Cortef injection. |
I send my most sincere condolences to Sarah's friends and family.
I am so rattled. This is unjust. It's so avoidable!
A simple injection of Solu-Cortef could have saved Sarah. It costs less than $10.
Taking Sarah to the hospital could have saved her.
Something must be done to stop the medical profession's ignorance about adrenal insufficiency and cavalier know-it-all attitude.
We must be able to count on someone to help us. How can we rest easy each day, wondering who will listen, who will believe us?
You will save others as you work to save yourself. - Melissa
*****************
Incompetent paramedics told dying woman: ' You just have a tummy bug'
Woman would have survived if she was taken to hospital and given a simple injection
**************
I only have two words: NO SHIT (Blogger emphasis).
Management of Adrenal Insufficiency
You know how I feel like that Europe is publishing so much research about Cushing's and adrenal insufficiency. Here's an article posted in September 2013.
THERAPY OF ENDOCRINE DISEASE: Perspectives on the management of adrenal insufficiency: clinical insights from across Europe
Monday, December 2, 2013
READY FOR BLA: keychain case
Friday, November 29, 2013
Lori's Brainiversary
cushingsmoxie sent you a video: "CushieSteph Intro"
| ||||||||||||||||||||||||||||||||||||
cushingsmoxie sent you a video: "Cushing's Disease & Acromegaly (brief story of my journey)"
| ||||||||||||||||||||||||||||||||||||
cushingsmoxie sent you a video: "Renée - Cushing's After a Failed Surgery"
| ||||||||||||||||||||||||||||||||||||
cushingsmoxie sent you a video: "Melissa - Cushing's Symptoms & Diagnosis"
| ||||||||||||||||||||||||||||||||||||
cushingsmoxie sent you a video: "Phillip - Living with Cushing's Syndrome"
| ||||||||||||||||||||||||||||||||||||












