Saturday, June 3, 2017
Office staff is friendly and very responsive to mychart messages and refilling meds.
Dr. Sasan has a calming and reassuring bedside manner.
He always asks me, "How does that sound to you?"
Dr. Sasan is open to all my questions and analyses of labs and symptoms. I spend 30-50 minutes with him. He answers all my very nuanced questions.
This is so refreshing after seeing at least 10 arrogant, think-they-know-it-all endos who brazenly dismissed my Cushing's--cortisol ups and downs (cyclical) and reoccurring--for years.
Dr. Sasan asked me how often I'd like to see him. I feel most comfortable with every three months. He allowed me to set up my appointments for every three months for a year out. There is piece of mind knowing that I can get labs and discuss them with him often. Changing Texas seasons means big dose changes to fludrocortisone, so I find comfort with access.
I highly recommend Dr. Mirfahkrhee.
For those in DFW who have seen other doctors at UTSW and staff said you can't transfer to another endo, Dr. Mirfahkrhee said he has never heard of this. He said he would be happy to see all my Cushie and BLAer friends!
For those who can't make it to Dallas for your endo appointments, please use this as a checklist of the type of doctor-patient partnership we Cushies need and deserve.
Tuesday, May 30, 2017
Tuesday, April 11, 2017
Cushing's Awareness Month, day 4.
Syndrome nicknamed 'ugly disease' left Scottish woman with a round face and a 'buffalo hump'
The debilitating Cushing's syndrome causes unsightly and unusual weight gain and zaps sufferers of energy.
Have you heard of Percy Lavon Julian and his contributions to the Cushing's and Addison's community?
|The grandson of slaves, Percy Lavon Julian overcame racial barriers to achieve scientific, business, and personal success.|
I owe this post to my Cushie and BLA friend Trisha, who brought PLJ to my attention. In her words:
He later started his own company to synthesize steroid intermediates from the Mexican wild yam. His work helped greatly reduce the cost of steroid intermediates to large multinational pharmaceutical companies, helping to significantly expand the use of several important drugs.""
- For those of you in education, how about teaching a lesson on Percy Lavon Julian?
- For the chemists and science folks, want to build a steroid?
- Still can't believe you don't know about Percy Lavon Julian and want to share with friends and family? Looking for a role model for the children of Cushies and Addies or your own kids?Buy the PBS DVD for $12.99 here.
- high cortisol
- low cortisol
- brain fog
- performance pressure
- the words "deadline"
- "done today"
- "everyone is waiting on me"
- "but I made a promise"
- "I will disappoint everyone"
- "I have so much to do"
- + any other symptom(s) that decide(s) to STAND UP and BE HEARD that day.
- calling the insurance for preauthorization on procedures, surgeries, imaging, growth hormone injections
- calling the insurance for review of benefits
- calling the insurance for error in claim(s)
- calling the insurance for prescription pricing and coverage
- calling the insurance for specialty injection for adult growth hormone deficiency
- MyCharting/calling the doctor(s) for appointments, questions, requests, refills
- checking MyChart for appointments, lab results, and imaging reports
- studying every word in the lab results and imaging reports
Regular readers (some o' y'all tell me it's true!) know that I advocate for patients to self-advocate as well as to promote cortisol imbalance awareness (Cushing's, Addison's, Adrenal Insufficiency).
- sleep medicine for sleep apnea due to weight
- physical therapy
- mineral endocrinology (I know, right?! that's another post)
- allergy and asthma
- ophthalmology for cornea (contacts for keratoconus) and retina annual exams for RA med (more later)
- sleep apnea
- advanced ob/gyn ("for female hormone stuff)
- nutritionist (August 2017)
- orthopedic hip speciality
- pain specialist
- pain clinic with TWO doctors (physical therapist, psychiatrist = summer 2017)
I also rely on my PCP and endocrinologist as a team for my medical health.
I cling to my psychiatrist and psychologist for my mental and "behavioral" health. All are wonderful and *actually remember* what I told them last time. Novel concept for a doc these days and a total plus, right?!
Let's remember, folks. I am in remission.
My first pituitary surgery was June 18, 2009.
My second pituitary surgery was April 20, 2011.
My BLA was December 31, 2013.
I am more than three years post op BLA, and I still need all those doctors to find treatment and comfort for all that lingers after cortisol excess damaged my body.
Cushing's is not joke. It doesn't mess around.
Will this all happen to you? Will you need this much help this long after treatment? I don't know. No one knows, not even the doctors who tell you that "you are cured, stop worrying." Cushies know better than to use the word "cure." We say remission, and still fear the day that high cortisol symptoms decide to say "Hello. I'm back."
Saturday, April 1, 2017
Cushing's Awareness Month starts today.
H O O R A Y !
Am I cutting it close or what? 11:55 pm on day 1 of the blogging challenge.
I want to tell you that my life has undergone great change in the past year. I hope you will visit us often. Will this blog reach one million page views this month? At 922,000, we don't have far to go.
For 30 days in April, I will be blogging about:
~ My 10 year anniversary with Cushing's!! How did I survive
~ A Decade to Wellness: Moxie's full Cushing's story all in one post + never before seen personal photos
~ All things Cushing's: what the docs should know. New journal articles about hypercortisolemia, panhypopituitary, adrenal insufficiency, and adrenal crisis in the medical literature
~ Training Tux. Follow along to see how Moxie trains our service dog to detect cortisol for me and blood sugar for my husband plus many basic dog commands without ever having owned a dog before. This gets comical.
~ My new rheumatoid arthritis diagnosis and how high cortisol sets many Cushies up for autoimmune disease after remission. Bonus: are rheumys better than endos?
~ Prednisolone: my success with a relatively unknown cortisol replacement
~ Weight loss 3 years after BLA: it is finally happening. You'll never guess that our old, ubiquitous nemesis Metformin is now the hero
~ Growth hormone insufficiency landmines: why are endos hesitant to prescribe this after Cushing's pituitary surgery and how to deal with predictable delays and deliberate stalling by he insurance companies
~ Korlym: how doctors are prescribing it in 2017 vs. 2013 when it was first approved by FDA (hint: follow the money). Disclaimer: I own stock in Corcept Therapeutics. See full disclaimer on the side bar to the right).
~ Cushies make headlines: Follow up on the Cushies we've seen in the news
~ Patient spotlight in Cushing's right before your eyes. See the many faces of Cushing's in patients' before and after photos
~ Life after BLA: Words of Wisdom from Cushies about controlling cortisol, taking medicine every day, and living with the ever-present threat of adrenal insufficiency and adrenal crisis. Is it better or worse than endos threaten it will be?
Be sure to like my new Facebook page: Fight Cushing's with Moxie.
Forward those posts to your friends, family, and community to help spread awareness for Cushing's.
SUPPORT CUSHING'S BLOGGERS ALL APRIL by forwarding their blog posts to your FB peeps. Let's make it our goal to make them see the word Cushing's twice a day for 30 days! We can do it, everybody!
Thanks for stopping by. See ya soon.
~ Moxie Melissa
Tuesday, March 28, 2017
|From Robin @ http://survivethejourney.blogspot.com/|
Sunday, March 19, 2017
These Dogs Save Lives By Smelling People's Breath
MAY 08, 2014
"The fact that dogs can sniff out cancer is pretty miraculous, but that’s not the only disease canines know how to catch with their incredible olfactory abilities. Medical detection dogs -- who have been trained to sense the symptoms of a range of illnesses -- perform a unique service unlike the typical assistance dog, alerting their owners to physical problems that might otherwise go unnoticed. Thanks to the work of Claire Guest, a doctor who founded the UK-based charity Medical Detection Dogs, dozens of lives have been saved (and improved) because of disease-sniffing dogs."
Tuxie and Moxie train with Service Dog Express. www.servicedogexpress.com
Today my family got a service dog, Tux. He will be trained to detect cortisol for me and blood sugar for my husband who is a type 1 diabetic.
Follow along this new journey. Go like our Facebook page, called Fight Cushing's with Moxie.
And stay tuned, because April is Cushing's Awareness Month, and my 10th anniversary with Cushing's. Lots of new stories coming up.
Friday, March 3, 2017
Friday, January 20, 2017
A few of my friends are in the battle of their lives. Convinced they have Cushing's, these patients have played the test-and-wait game, for a long, long time. They can barely see themselves in this life that is focused just on the bare necessities (food, care for kids, our self care gets skipped) and SLEEP. A lot of sleep. All the times you can't go to sleep because of daytime duties and responsibilities and wide awake when it is actually time to go to sleep. Add doctors dragging their feet and you slowly to diagnosis and high cortisol to the mix. Cushie just want to give up!
In case you haven't read it lately, here are my moxie set of tips to steady your feet and get yourself diagnosed.
I haven't changed one thing on that post in the nearly nine years since I wrote it.
It pains me to see how relevant it is today-- patients still suffering too long and doctors too sure of their knowledge to admit the patient may have something rare.
The world of information has changed since that 2008 post, too. I started to research cushing's on the internet in March 2007. I didn't use Facebook back then. A simple google search resulted in more posts about dogs and horses than people.
(🐶 + 🐴) x info > 👩💻
So be happy that information is available and keep fighting Cushing's with Moxie.
Tuesday, January 17, 2017
Saturday, December 31, 2016
Thursday, April 7, 2016
- Obesity (lose weight, lose symptoms)
- Polycystic ovarian syndrome (PCOS)
- Fibromyalgia (no lab tests can prove this; diagnosis given when they don't know what else is wrong with you)
- Back and muscle pain
- Blurred vision, visual field loss, double vision
- Chronic fatigue syndrome
- Dry, oily, or sweaty skin
- Impotence or infertility
- Joint pain, joint/bone abnormalities
- Muscle weakness, carpal tunnel syndrome
- Temporomandibular joint/TMJ/jaw joint pain
- Thyroid imbalance or "slow metabolism"
What your symptoms really mean if doctors put them all together - CUSHING'S
- Facial redness
- Rounding of the face (moon face)
- Unexplained weight gain around belly
- Buffalo hump, or hump on back of neck
- Pink or purple stretch marks
- Thicker or more visible body and facial hair
- Muscle weakness (difficulty standing or climbing stair)
- Extreme fatigue (no amount of sleep is enough)
- Depression, anxiety and irritability
- Pink, red or purple stretch marks along your abdomen, arms, or thighs
- Thin and fragile skin that bruises easily
- Slow healing of cuts, insect bites and infections
- Bone thinning (osteopenia, osteoporosis), easily broken bones
- Recurrent infections
- Sleep disturbances, night sweats, awake at midnight or 4 am
- High blood pressure
- Diabetes mellitus
- Irregular or absent menstrual periods in females
- Clotting disorder