tag:blogger.com,1999:blog-52422477787650008682023-11-16T12:01:25.194-06:00Cushing's with Moxie: Fighting The Worst Disease You've Never Heard Of“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 ObesityMoxie Melissahttp://www.blogger.com/profile/02490690443761896312noreply@blogger.comBlogger536125tag:blogger.com,1999:blog-5242247778765000868.post-65018365675113054702021-04-28T20:59:00.002-05:002022-02-05T17:21:00.941-06:00First Surgery after Bilateral AdrenalectomySurgery is a big deal with no adrenal glands. All that cutting into skin and stuff is stressful to the body. With no adrenals to increase cortisol and offset the body's biological need, patients with adrenal insufficiency (primary or secondary) must take extra cortisol for that surgery. It is a whole big thing that we patients have to do to make sure we don't die on the table -- even before we Moxie Melissahttp://www.blogger.com/profile/02490690443761896312noreply@blogger.comtag:blogger.com,1999:blog-5242247778765000868.post-14771255424628266492021-03-17T11:16:00.001-05:002021-03-17T11:16:16.153-05:00Uncured Cushies and Extra-Pituitary Tumorsextra-1. a prefix meaning "outside," "beyond," freely used as an English formative: extrajudicial; extraterritorial; extra-atmospheric.As I reflect on Lori's Cushing's segment today on the Dr Oz show, I remember that her fourth pituitary surgery revealed a tumor in her sinus and her fifth surgery removed her entire pituitary gland as well as part of the bone.Internet surfing led me to&Moxie Melissahttp://www.blogger.com/profile/02490690443761896312noreply@blogger.comtag:blogger.com,1999:blog-5242247778765000868.post-44044607726504609272020-11-17T16:30:00.001-06:002020-11-17T16:30:54.232-06:00Will You Try Amazon Pharmacy?"Amazon Prime members have access to an additional pharmacy perk called the "prescription savings benefit," which offers a discount of up to 80% on generic medications and up to 40% on brand-name prescriptions." 😳 🤩 🥳Amazon Pharmacy also says it will accept "nearly" all insurance plans.Will you give Amazon Pharmacy a try? We definitely will. I take 20 medications a day, and my husband hasMoxie Melissahttp://www.blogger.com/profile/02490690443761896312noreply@blogger.comtag:blogger.com,1999:blog-5242247778765000868.post-34088741892745096282020-11-13T15:09:00.002-06:002020-11-13T15:16:29.690-06:00COVID Care + AIU SURVEY for Post Op CushiesHello dear Cushie friends. I hope all y'all are staying safe and hunkering down in Month 8 of the COVID-19 pandemic. We must be so careful. Be sure to check out the the National Adrenal Disease Foundation's COVID survey and one-page handout to guide medical professionals treating us for both COVID and adrenal insufficiency. Please take a moment to print this, place the copy in yourMoxie Melissahttp://www.blogger.com/profile/02490690443761896312noreply@blogger.comtag:blogger.com,1999:blog-5242247778765000868.post-40597835652548881432020-10-27T14:50:00.001-05:002020-10-27T14:50:31.321-05:00COVID-19 and AI PatientsCOVID-19 Information for Adults & Children with Adrenal Insufficiency🆘Give to all emergency and hospital personnel 🆘#covid #ER #AandE[ Print multiple copies and place them with your emergency kit in your purse or car. Print another for your loved ones.]The National Adrenal Disease Foundation has been conducting a survey (link below) regarding your concerns about COVID-19 with adrenal Moxie Melissahttp://www.blogger.com/profile/02490690443761896312noreply@blogger.comtag:blogger.com,1999:blog-5242247778765000868.post-68749827345175170282020-10-25T13:02:00.001-05:002020-10-25T13:02:39.367-05:00Cushing’s and Bilateral Adrenal TumorsThis post is for those with nodules on both adrenal glands, and the endo/ surgeon wants to remove one first to see how it goes. Before you agree, be sure to ask to be tested for Conn's and the gene PRKAR1A. [In fact, there are other genetic causes for bilateral adrenal tumors like iMAD, PRKACA, PRKAR1A, GNAS, PDE11A, PDE8B,PBMAH, ARMC5, plus others].
PPNAD/ normal CT scan.
PRKAR1A-negative Moxie Melissahttp://www.blogger.com/profile/02490690443761896312noreply@blogger.comtag:blogger.com,1999:blog-5242247778765000868.post-15568261036898631972020-03-01T09:16:00.000-06:002020-03-01T09:17:04.725-06:00🧬 GENE THAT METABOLIZES CORTISOLI tried many cortisol replacements in the first five years post op bilateral adrenalectomy (BLA) — hydrocortisone, prednisone, dexamethasone, prednisolone, and in many combinations. None worked for me. So much wasted time! I don't even have gastroparesis or gut issues. Last week, I asked my endo to review my results from the genetic test, www.genomind.com i used to find the best anti Moxie Melissahttp://www.blogger.com/profile/02490690443761896312noreply@blogger.comtag:blogger.com,1999:blog-5242247778765000868.post-25955980811470381502020-02-18T14:11:00.001-06:002020-02-18T14:19:02.018-06:00article: 2013 v. 2017 adrenal crises
A retrospective analysis of adrenal crisis in steroid-dependent patients: causes, frequency and outcomes.
2019 article
Although we seem to be aware that extra precautions need to be taken to avoid adrenal crisis during trips and emotional stress, the truth is that most patients are AT HOME when AC occurs.
https://bmcendocrdisord.biomedcentral.com/articles/10.1186/s12902-019-0459-z
Moxie Melissahttp://www.blogger.com/profile/02490690443761896312noreply@blogger.comtag:blogger.com,1999:blog-5242247778765000868.post-67536340750744118592020-02-13T09:57:00.001-06:002020-10-24T15:48:53.921-05:00Get Connected: Facebook groups
Fighting Cushing's with moxie is difficult. We have to surround ourselves with people who know what it's like and how to help us. One of the best Cushing's resources is our local, state, regional, and country groups on Facebook. Are you a member of yours?
Local groups are also a great resource to:
1) find a helpful doctor or who to avoid
2) Cushing's makes Cushies isolated and lonely.Moxie Melissahttp://www.blogger.com/profile/02490690443761896312noreply@blogger.comtag:blogger.com,1999:blog-5242247778765000868.post-56026296785012211442019-09-05T11:28:00.001-05:002019-09-05T11:28:32.148-05:00Brain holds A.M. meeting I wanted to share a cute video from Juggling the Jenkins about what would happen if our brain held a morning meeting to prepare us for the day. All the usual characters come into play. For Cushies, the longevity and unrelenting force we face really wears us down. Take this video and multiply it by years and years. That's how badly Cushies feel it!https://www.facebook.com/391955364517474/posts/Moxie Melissahttp://www.blogger.com/profile/02490690443761896312noreply@blogger.comtag:blogger.com,1999:blog-5242247778765000868.post-7738571049731577872019-09-05T08:44:00.001-05:002019-09-05T08:44:22.534-05:00Twelve year old with Cushing’sTwelve year old Juliana says moving to Alabama saved her life, as doctors finally diagnosed her with Cushing's after five years of symptoms.https://www.wbrc.com/2019/09/03/exclusive-decatur-girl-with-rare-disease-says-moving-alabama-saved-her-life/I wrote the journalist Jenna Rae on Facebook messenger:Hello. I read your 9/2/19 article about Juliana Goode, the little girl with Cushing's. Thank youMoxie Melissahttp://www.blogger.com/profile/02490690443761896312noreply@blogger.comtag:blogger.com,1999:blog-5242247778765000868.post-42092646879960024552019-05-13T13:29:00.003-05:002019-05-13T13:33:58.814-05:00How Good is Your Safety Net: Join your Local Cushie Group
Having Cushing's often feels like we are free-falling.
Join your local Cushing's group and grab an arm or leg. Hang on forever.
How good is your safety net? If you have an adrenal crisis, do you have friends who can support you? The best way to tighten our collective safety nets as Cushies is to get to know other Cushies. Nearby Cushies are even better. I whole-heartedly encourage each of Moxie Melissahttp://www.blogger.com/profile/02490690443761896312noreply@blogger.comtag:blogger.com,1999:blog-5242247778765000868.post-13318432656434156962019-04-27T10:16:00.001-05:002019-04-27T10:16:25.198-05:00Stanford research develops cortisol meter for sweatSuch an invention would simplify testing, diagnosis, and post op care for Cushing's patients. What a world it would be if there was no more arguing with doctors about what our adrenal glands do all day and how the best tests to catch cortisol fail many of us miserably. Think of how much lost hope would be regained. "A group led by materials scientist Alberto Salleo at Stanford University Moxie Melissahttp://www.blogger.com/profile/02490690443761896312noreply@blogger.comtag:blogger.com,1999:blog-5242247778765000868.post-22414524328573557422019-01-04T12:12:00.002-06:002019-01-04T13:03:01.085-06:00Fludrocortisone shortageToday I share with you the January 4, 2019 notice from National Adrenal Disease Foundation. It provided an update for the ongoing fludrocortisone shortage many US adrenally-insufficient patients are facing, including Cushies without adrenal glands, like me.
I recommend that you provide a national drug code (NDC) when you call your pharmacy to ask them to find fludrocortisone acetate for you. Moxie Melissahttp://www.blogger.com/profile/02490690443761896312noreply@blogger.comtag:blogger.com,1999:blog-5242247778765000868.post-58935406677587396172019-01-03T13:22:00.001-06:002019-01-03T13:22:16.236-06:00Getting your Cortisol Dosage RightDoctors generally scare patients from taking extra cortisol (ie updosing or stress dosing) after pit surgery, adrenal surgery, or removing both adrenal glands (BLA). This is rich. They barely believed that we had Cushing's in the first place, yet now we must respect them as experts in the damage caused by excess steroid replacement. They rail against the damage of long term cortisol Moxie Melissahttp://www.blogger.com/profile/02490690443761896312noreply@blogger.comtag:blogger.com,1999:blog-5242247778765000868.post-42279552718878665512018-12-02T21:57:00.001-06:002018-12-02T21:57:27.758-06:00Patient PortalsBack in my day, when I was first testing for Cushing's in 2007, there were no online patient portals. It would take two to three weeks for the results from simple blood tests to come in, so said the doctors and staff. Determined not to wait until medical staff called me with results, I bought a fax machine and a second phone line. I wrote my own 800 fax number on the lab requisition in the Moxie Melissahttp://www.blogger.com/profile/02490690443761896312noreply@blogger.comtag:blogger.com,1999:blog-5242247778765000868.post-75589174482932149532018-10-23T01:40:00.002-05:002018-10-23T01:46:18.190-05:00Insurance Inspection: It's Open Enrollment Time
Today, I share with you some wise words from a post op Cushie and patient advocate, Susan G. She moderates the Facebook group, The Many Faces of Cushing's.
Spend some time learning about your health insurance coverage.
"Open Enrollment for insurance will be starting very soon. Now is the time to look over your plan very carefully and make any changes. Look at your provider directory Moxie Melissahttp://www.blogger.com/profile/02490690443761896312noreply@blogger.comtag:blogger.com,1999:blog-5242247778765000868.post-46290442531550740952018-07-13T13:32:00.000-05:002018-10-23T01:47:53.695-05:00Guilt. Pain. Depression.I sit on my back porch staring at the flower across the yard.
I hear the birds sing in the distance.
I hear my service dog's nails hit the pavement.
I feel the heat of the intense Texas sun on my body, while tears fall down my neck.
I feel numb in this world.
I feel lonely and unfulfilled.
I barely feel alive.
Why do I feel this way?
I fill the day by playing a few games on my phone Moxie Melissahttp://www.blogger.com/profile/02490690443761896312noreply@blogger.comtag:blogger.com,1999:blog-5242247778765000868.post-53496423481866216992018-07-09T11:38:00.001-05:002018-07-10T13:35:31.199-05:00Cleaning while Cushie
Cushing's causes depression. Not over the way we look but by the chemical hormones our pituitary puts or doesn't put out. Excess cortisol causes depression, too.
Add that to the muscle atrophy and pain many feel when standing still, and simple things like washing dishes becomes unbearable and is then avoided at all cost.
That's why the article, "How to clean your kitchen when depressed" Moxie Melissahttp://www.blogger.com/profile/02490690443761896312noreply@blogger.comtag:blogger.com,1999:blog-5242247778765000868.post-71195522368319108412018-07-04T23:33:00.001-05:002018-07-10T13:36:02.580-05:00Cushing’s from SteroidsThink back to all your doctors appointments: How many times were you offered steroids for treatment? Steroids are passed out like candy in medical offices, urgent cares, and ERs these days. Every time, the doctors will assure us that we can't get Cushing's from these low dose steroids, even if used long term. We have always heard quite a different story from patients in our online community. Now Moxie Melissahttp://www.blogger.com/profile/02490690443761896312noreply@blogger.comtag:blogger.com,1999:blog-5242247778765000868.post-77037730691922806802018-06-21T01:04:00.001-05:002018-07-13T20:06:57.039-05:00Initial Cushing’s Work Up
Many tests must be run to rule out the diagnosis of Cushing's, yet we hear from many who suspect Cushing's that their primary care doctors or endocrinologists REFUSE to order these tests because they say Cushing's is so rare that it is impossible to have it. Most just say we have PCOS and give us anti-depressants and metformin.
RIDICULOUS.
Yet, what doctors don't tell us is that Moxie Melissahttp://www.blogger.com/profile/02490690443761896312noreply@blogger.comtag:blogger.com,1999:blog-5242247778765000868.post-50483007528482100772018-05-24T11:09:00.004-05:002022-05-19T20:01:27.218-05:00Elusive Remission: More Pituitary Treatments or BLA
Today, someone on the message boards asked about removing both adrenal glands. This surgery is called bilateral adrenalectomy (BLA), as a treatment for persistent pituitary Cushing's. Here is my response:
I've noticed that the people who replied have never had BLAs. I'm the moderator of a group with more than 400 patients with Cushing's who have undergone surgical removal of Moxie Melissahttp://www.blogger.com/profile/02490690443761896312noreply@blogger.comtag:blogger.com,1999:blog-5242247778765000868.post-6392788952869613972018-05-11T01:46:00.002-05:002019-03-21T15:28:57.276-05:00Comprehensive List of Cushing's Symptoms collected by a Cushie
I've spent the last 11 years of my life surviving Cushing's and its aftermath by immersing myself in the patient community online. I noticed fairly early on that the symptoms listed on the websites of the major medical centers didn't quite reflect all the symptoms that I and my friends on the Cushing's message boards faced daily. The medical sites always listed their top 10. This has always Moxie Melissahttp://www.blogger.com/profile/02490690443761896312noreply@blogger.comtag:blogger.com,1999:blog-5242247778765000868.post-20246963247050487502018-04-29T00:33:00.001-05:002018-04-30T17:55:44.287-05:00Tips for the ER #1
April is Cushing's Awareness Month.
We Cushies have to go to the emergency room when we face adrenal insufficiency and adrenal crisis. I'll post some additional links (here), (here), and (here).
Tip #1: Stay focused on what you need
Dehydration, infections, and the inability to keep down oral cortisol replacement cause Cushies to take the dreaded drive to an emergency room. So before you get Moxie Melissahttp://www.blogger.com/profile/02490690443761896312noreply@blogger.comtag:blogger.com,1999:blog-5242247778765000868.post-1970113651907521912018-04-24T12:44:00.000-05:002018-04-24T13:29:04.451-05:00TEAM TUX UPDATE: Service Dog for Cortisol DetectionAPRIL IS CUSHING's AWARENESS MONTHAs you may know, I have a service dog to detect low cortisol.Tux alerted me that I needed meds on Saturday. I got my emergency kit. While I held it and unzipped it, he nosed his way into it and grabbed the bottle of hydrocortisone with his front teeth!! We have never trained for this: never used saliva samples and never played any scent games. He couldn't pull Moxie Melissahttp://www.blogger.com/profile/02490690443761896312noreply@blogger.com