Wednesday, April 28, 2021

First Surgery after Bilateral Adrenalectomy

Surgery 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 can think about the success or complications of the surgery we are undergoing that day!!

I realized that I posted this to my Fight Cushing's with Moxie page on Facebook but not here on my blog. So, today we go back in time a bit to ensure this important message is here with all the rest of them!


July 21, 2020 

AI’s always on my mind, sung to the tune of Elvis' You are always on my mind (btw Elvis had Cushing's, you know!)

Today I checked into the hospital for gall bladder surgery. It’s my first surgery since becoming permanently adrenal insufficient in 12/31/2013 when I had both adrenal glands removed. I’ve done everything I’m supposed to do to prepare, and I’ve increased the basal rate on my infusion pump to dispense 6 units of cortisol per hour (3 mg HC). I’ve spoken to surgeon, endocrinologist, and anesthesiologist about my steroid plan for surgery. I will remind everyone again this am what I require. This is a day surgery, and with proper steroid replacement, I hope to be home return home today. 🤞🏽 p.s I tested negative for covid Sunday. 😇

UPDATE 1: All went well. Staying overnight to give steroids via IV push, take IV fluids, and monitor blood pressure.

Wednesday, March 17, 2021

Uncured Cushies and Extra-Pituitary Tumors


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 stumble upon this 1999 article. For the first time, I see an official, medical journal article about uncured Cushies, multiple surgeries, and finally finding unsuspecting culprits in non-pituitary places. Extra pituitary tumors sounds like extra terrestrials, though not as innocent as the E.T. portrayed in the movie. While I have seen more cases of suspected extra-pituitary tumors mentioned on the online groups for Cushing's patients, this decade-old article shows that we are not off-base in our assumptions. 

Regardless, this article is fascinating. i hope you enjoy it the way I did. It gives me concrete hope as I face uncertainty waiting for a tumor to show up eventually on a pituitary MRI. I have considered an exploratory third pituitary surgery. This article and Lori's segment today reminds me to take note of all signs I see around me, keep fighting for my life, and continue claw and my way forward to my cure from

- Melissa 

Extrapituitary Parasellar Microadenoma in Cushing's


Negative sellar exploration, despite the results of endocrine evaluation indicating Cushing's disease, the high incidence of failure of total hypophysectomy, and remission of Cushing's syndrome after sellar irradiation, suggest that the etiology of refractory Cushing's disease in many patients lies near the sella but is not in the pituitary gland. In such patients, the diagnostic and surgical effort should consider the identification and selective resection of an extrapituitary parasellar adenoma and the avoidance of total hypophysectomy and adrenalectomy, which necessitate life-long hormonal replacement therapy and risk development of Nelson's syndrome (2127).

Tuesday, November 17, 2020

Will 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 has at least five. Out of all the things that we spend money on, our medications and their prompt delivery are most important to us.

Mail-in order pharmacies we have dealt with in the past have had very poor service, unnecessary delays, and technology that just wasn't up to snuff. This will not be a problem for Amazon. 

Consumers need someone to bust up current medication pipelines, someone to facilitate the quick delivery of meds , and someone to hopefully lower costs for consumers.

My fingers are crossed that Amazon will fix this. Amazon has always provided superb customer service. Shopping on an intuitive user interface is sooo much easier than dealing with clunky set ups of other retailers, much less CVS and Walgreens. 

We are proud Prime Members since Amazon first shipped diapers and wipes to a very tired Cushie mom back in 2008.  We have been getting groceries delivered through Amazon Fresh long before the pandemic. We love our shipments and savings through the Subscribe and Save program. Our experience with Amazon has always been great. 

I just wish that the company would respond to criticism and clean up their reputation by being nicer to employees (allowing more time for workers to get from one spot in the warehouse to the others, allowing bathroom breaks, allowing worker protections through unionizing, etc). 

I will get back to you with more details as I try Amazon Pharmacy. Tell me about your experience, too. Promise?


[Let's not turn this post into a debate about Amazon. It will stress me out, and I'm on a fixed cortisol dose. You don't want to make me sick with adrenal insufficiency on purpose, do you? I can't help others when I'm sick!! ❤️ ]

CNBC report

Go straight to Amazon Pharmacy

Why Amazon bought Pill Pack and how they turned that into Amazon Pharmacy

Friday, November 13, 2020

COVID Care + AIU SURVEY for Post Op Cushies

Hello 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 your emergency kit, and email it to loved ones likely to accompany you to the ER.

I also wanted to share an email I received today. I encourage all post-op Cushing's patients to participate in this survey for Oregon Health Sciences University. While I'm so pleased that a researcher seeks to expand medical knowledge on the disease we pick up on the other side of Cushing's, I want to stress (haha) that we Cushies must try to describe how horrible our care is as we transition from one disease to another. We hear that endocrinologists routinely fail to prepare us properly for AI before surgery, and we continue to struggle post op without proper guidance that every other disease seems to be getting. That is not fair, and we deserve better.

Now it is our turn. Your participation in this survey will amplify the voices of the Cushing's community. Please do not let the opportunity pass you by. I'm going to make the medical establishment pay attention to us, if it is the last thing that I do. I need your help.

Take care and stay safe, friends. ~ Moxie Melissa

P.S. Be sure to follow my Fight Cushing's with Moxie Facebook page and become my FB friend. Send me a pm and introduce yourself. I'll help you all I can and make sure you are in the groups that will help. Be sure you are part of our extensive online community.

Please help us collect valuable data. All answers are de-identified and confidential.

AIU has been contacted by a health professional at the Oregon Health Sciences University (Moxie added link to Cushing's info) in Portland, Oregon. She's asked us to share this and spoke how much more research and knowledge is needed for our community. Here is the link to the survey. This survey is for anyone -- in any country -- affected by AI. If you suffer from any form of adrenal insufficiency, are a relative, or a medical professional working with someone with this disorder, you are invited to participate in this survey.Your COVID exposure or status is only one part and will be towards the end of the survey.

The survey will take about 10 minutes to complete.

Survey Intro:

"People with Addison's disease or Adrenal Insufficiency (AI) are at risk for adrenal crisis in the event of an illness, but little is known regarding the risks associated with COVID-19.
This survey was developed by a collaboration of patient advocacy representatives and endocrine medical professionals. It will take approximately 15 minutes to complete. By combining many responses we hope to understand more about individual risks for the development of adrenal crisis during this pandemic, and to identify treatments that will influence clinical decisions to improve self care in the future."


Take Survey
Copyright © 2020 Adrenal Insufficiency United, All rights reserved.
We're sending this email to those who've signed up on our lists, visited or store or attended past conferences and events.

Our mailing address is:
Adrenal Insufficiency United
PO Box 168
Oregon City, OR 97045

Tuesday, October 27, 2020

COVID-19 and AI Patients

COVID-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 insufficiency. Survey responses have provided excellent insight into concerns regarding COVID-19. Specifically, many people with adrenal insufficiency are worried that EMS, Emergency Room or hospital staff will not know how to treat them properly. To address this concern, NADF has created a one-page 'handout' document with medical staff instructions for adults and children. As always, the guidance provided in the document has been fully approved by our medical advisors. Download the PDF below for printing.

If you do find yourself in a situation where you have COVID-19 and need to go to the hospital, please don't hesitate to hand this to all medical personnel involved in your care.

To participate in the NADF survey, click here: 


Sunday, October 25, 2020

Cushing’s and Bilateral Adrenal Tumors

This 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 familial Cushing's syndrome: two case reports
Lee Ling Lim et al. J Med Case Rep. 2015.

"The cases of these two patients illustrate the difficulties involved in diagnosing primary pigmented nodular adrenocortical disease, a variant of adrenocorticotropic hormone-independent Cushing's syndrome that is managed with bilateral adrenalectomy. A high index of suspicion for this disease is needed, especially in adolescents with adrenocorticotropic hormone-independent Cushing's syndrome who have a significant family history, features of Carney's complex, and no resolution of Cushing's syndrome after unilateral adrenalectomy.

**Patients with primary pigmented nodular adrenocortical disease can either have bilateral/multiple adrenal nodules or normal adrenal glands visualized by computed tomography.*** Long-term surveillance is imperative in patients with confirmed Carney's complex and in those who have not undergone complete genetic testing to exclude this hereditary disorder."

Sunday, March 1, 2020


I 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, i used to find the best anti depressant last summer to see if he saw anything that affected endocrine issues. He said I have an issue with my CYP3A4 gene that causes me to process cortisol rapidly. Labs always showed I had enough cortisol but my cells disagreed. I was always feeling low with extreme fatigue. Now that I have been on the cortisol pump for 14 months, that low feeling is gone. My body gets much more of what it needs in small batches of cortisol delivered slowly and directly. Even still, I have to take a higher amount than many due to this gene. I still take 30-35 mg solucortef daily even though it drips straight into the blood stream. 

If you aren't feeling well post op, get the Genomind test. It could improve your mental health as well as your cortisol replacement issues.

I'm still learning about the genetics stuff. Feel free to help me research and share what you learn. I have a theory that this CYP3A4 gene may also hinder cyclical Cushies like me to always get normal results on 24-hour urinary free cortisol tests (UFC) while always getting high hydroxycorticosteroids (OHCS) on those same UFCs. I feel this is a major scientific breakthrough. 

Tuesday, February 18, 2020

article: 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.

Thursday, February 13, 2020

Get 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. Meet local Cushies who empathize and understand. 

3) create Cushing's awareness projects in your community

4) ask for help when ER docs aren't following protocol for treating adrenal insufficiency and adrenal crisis.


We have links to all known Cushing's groups below. Special thanks to Samantha B. for developing this project and helping to gather these links.

If you are already in your local groups, please help us guide our Cushie friends to these local groups when you see someone asking about doctors in the big Cushing's groups, like The Many Faces of Cushing's  You can help. We are in the business of saving lives, aren't we?  

[This works only if you are a member of the group: To tag a group in a FB post, simply type the @ symbol then the name of the group, select the group from the drop down menu. It will appear in your comment hyperlinked to the group. So easy!]

** STAGE OF DISEASE (members as of post)**

Post Op Cushies (324)

Cushing's Recovery _ Don't Stop Believin' (992)

Life after BLA (375)

Parents of Children who have Cushing's (275)

Cushies with Service Dogs (233)

** REGIONAL CUSHING'S GROUPS (members as of post)**

Midwest Cushies (33)

New England Cushies (36)

Pacific NW Cushies (73)

Southern Cushies (9)

** CUSHING'S STATE GROUPS (members as of post) **
Alabama Cushies (9)

Alaska Cushies (3)

Arizona Cushies (23)

Arkansas Cushies (11)

California Cushies (88)

Colorado Cushies (19)

Connecticut Cushies (9)

Delaware Cushies (1)

Florida Cushies (102)

Georgia Cushies (9)

Hawaii Cushies (1)

Idaho Cushies (6)

Illinois Cushies (27)

Indiana Cushies (20)

Iowa Cushies (3)

Kansas Cushies (7)

Kentucky Cushies (7)

Louisiana Cushies (10)

Maine Cushies (5)

Maryland Cushies (25)

Massachusetts Cushies (15)

Michigan Cushies (31)

Minnesota Cushies (15)

Mississippi Cushies (8)

Missouri Cushies (37)

Montana Cushies (4)

Nebraska Cushies (4)

Nevada Cushies (4)

New Hampshire Cushies (2)

New Jersey Cushing's Patients (58)

New Mexico Cushies (6)

New York Cushies (52)

North Carolina Cushies (29)

North Dakota Cushies (1)

Ohio Cushies (34)

Oklahoma Cushies (26)

Oregon Cushies (10)

Pennsylvania Cushies (74)

Rhode island Cushies (5)

South Carolina Cushies (22)

South Dakota Cushies (22)

Tennessee Cushies (27)

Texas Cushies (120)

* DFW Cushies (71)

* Central Texas Cushies (11)

* Houston (64)

Utah Cushies (15)

Vermont Cushies (9)

Virginia Cushies (27)

Washington cushies (19)

West Virginia Cushies (6)

Wisconsin Cushies (29)

Wyoming Cushies (1)

** INTERNATIONAL CUSHING'S GROUPS (members as of post)**

Cushings - Australia (190)

Cushing's Disease Awareness - Canada (105)

Europe Cushies (1) -- NEW

Indian Cushies (9)

Cushing's UK (783)

New Zealand Cushies (1) -- NEW

South Africa Cushies (1) -- NEW

** DOCTOR LISTS (members as of post)**
Cushing's Support and Research Foundation

Cushing's Help - SCROLL DOWN

Pituitary Network Association

Thursday, September 5, 2019

Brain 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!

Twelve year old with Cushing’s

Twelve year old Juliana says moving to Alabama saved her life, as doctors finally diagnosed her with Cushing's after five years of symptoms.

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 you for writing it. I too had Cushing's, and I want to reach out to the family to plug them into a network of resources we have on Facebook and beyond. We have a group for people with Cushing's in Alabama, the South, as well as all the other 50 states. We have groups for parents of Cushing's patients (we call ourselves Cushies) and post op groups that help when hormone balance is very difficult after the removal of pituitary tumors. I have been a patient advocate for over 12 years and I have been a blogger for 11, writing over 500 articles about Cushing's. My site is  I also have a Facebook page It is critical that I reach Kennie and James to help them navigate the many months of post op recovery that will be required for Juliana and all Cushies to recover. Doctors don't know what patients know, and unfortunately, patients have died listening only to doctors. It's my job as patient advocate to grab every Cushie I can find and place them into the safety net we Cushies have built for ourselves. I would be so thankful if you could pass this message along to Kennie and James. They can reach me here on FB.

Thank you so much for your help and for covering this story. We Cushies say that Cushing's is not a rare disease but it is rarely diagnosed. Doctors are taught in medical school that they will never see a case in their entire medical careers, so diagnosis is difficult. If you are interested in writing more stories about other Alabamans with Cushies or how this disease affects women 5 times more than men and how women are told to diet, lose weight, and exercise even though we have brain tumors, we sure need help telling our stories. We hope to catch even more patients who read these articles and see themselves in the patient stories. Thank you again!

Monday, May 13, 2019

How 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 you to connect with Cushing's patients in your area. 
I realized lately that many newer Cushies don't know that we have Cushie groups set up for every US state. I'm sharing my post announcing this back in February 2018.
US STATE GROUPS: Tonight I completed a dream project to create a state cushie group for 49 of 50 US states. 
So I took my own advice and I created a state cushie group for 49 of 50 states. Please join your group. Go to search box in Facebook and search for your home state plus the word Cushies, like this: Texas Cushies. Montana Cushies. Florida Cushies. Each of us Cushies has the unique ability to help other Cushies, no matter where in this big world you are and they are. I am asking for your help in connecting Cushies.
As we see new people come into the groups or someone is frustrated over an uncooperative doctor who is unwilling to test more, prescribe more HC post op, or consider reoccurrence, please look at their profile to see if they list a location where they live. Then reply to them and post: Please join @ sign then group name, like @Colorado Cushies, to activate a link to that group. You can be the person who makes the difference for someone fighting to find answers.
We also have regional groups called Midwest Cushies, New England Cushies, Southern Cushies, Pacific NW Cushies, and Central Texas Cushies. We even have enough patients to create city-specific groups like DFW Cushies (Dallas-Fort Worth Cushies) and Houston Cushing's Support Group. If you are willing to travel for good health care, be sure to join.
I am active in the DFW Cushies group, and these ladies are a life-line for me. We have gotten together a half dozen times, and each has brought me closer to people who understand what Life is like as a Cushie. We understand the lingo, the complications, the horrible symptoms, the weaning, the surgeries, the doctors!, and the struggles. Meet regularly. Help locally. Then those groups can organize events, prep people for surgery, meet with families, go to doctor appointments... you name it. We can help push someone to their next step to wellness, and we can be there when someone really needs someone to listen. This type of unwavering support should not be underestimated. We all need it. We deserve it. We shall have it. Bring the Cushing's experience from the Facebook groups into real life and make real friends and lasting friendships. We are all out there, and all you have to do is find us. Go to a gathering even though your heart is beating out of your chest and the doubt and fear of judgment about your looks makes you want to flake out and stay at home. Go. I wish for you the lasting friendships I have made in my local area.
We must create a safety net ourselves. Even though the medical community continues to fail us and this disease's aftermath plagues us, we can cling tight to each other and keep each other safe.
Please take a pledge and commit to helping me funnel Cushies to their state groups.
Now, I move on to the other 100 Cushing's projects I have my heart set on to complete.
Be well.
P. S. Please be sure to like my Fight Cushing's with Moxie page on Facebook, where I will post every time I update this blog.
P. S. S. If I have helped you move forward on your path to better health by answering questions or you have benefit from the material I have written, please consider leaving a review on my Fight Cushing's with Moxie page on Facebook. Those reviews are the best thanks for the almost 11 years of maintaining this blog and being a Cushing's advocate. It will keep me going!!

Saturday, April 27, 2019

Stanford research develops cortisol meter for sweat

Such 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 has created a stretchy patch that, applied directly to the skin, wicks up sweat and assesses how much cortisol a person is producing."

Friday, January 4, 2019

Fludrocortisone shortage

Today 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. The pharmacist tech will simply punch this NDC into their computer to locate this medication.
NDC for IMPAX/ Global is 0115-7033-01.

According to the U. S. Library of Medicine, the NDC for fludrocortisone acetate manufactured by IMPAX/ Global is 0115-7033-01.

NDC for IMPAX/ Global is 0115-7033-01.
In addition, I have my endocrinologist write my prescription for fludrocortisone for 0.1 mg bid or twice daily, even though I only take 0.2 mg fludrocortisone during the summer. This allows me to build a small stock pile of this life-saving medication during the other times of the years. It is critical for us to be prepared for times of natural disasters like fires, hurricanes, snow storms, manufacturing delays, shutdowns, or shortages. 

We have to be smart about how to keep ourselves alive. 

Download NADF's original statement here.


"This is an important update on accessibility of fludrocortisone acetate. Barr/Teva has informed us that the company is phasing out their production of fludrocortisone acetate. We want to reiterate that there are other manufacturers of our life-preserving aldosterone hormone replacement fludrocortisone acetate including Impax/Global Laboratories, Inc. and for those with government insurance, AvKARE. However, AvKARE is experiencing a manufacturing delay so that product may also be temporarily unavailable. 

To complicate matters, McKesson is one of the largest pharmaceutical distributors in the USA, and has exclusive contracts with many manufacturers on the supply side, as well as many of the large pharmacy chains and mail order pharmacies on the distribution side. In this case, McKesson has an exclusive contract with Teva/Barr for fludrocortisone acetate, and does not supply Impax products.This means that patients might find ordering fludrocortisone acetate from one of the larger pharmacies as impossible, because that pharmacy has McKesson as their pharmaceutical product supplier. 

NADF's updated (12/31/18) recommendations for obtaining fludrocortisone acetate should you run into problems: 
  • Ask your pharmacist if they have contacted their wholesaler network and exhausted all options
  • Try a smaller non-chain/local pharmacy since they are often not bound by exclusive contracts. If you have a good relationship with your pharmacist where the Rx is unavailable, ask them if they mind calling around to a few local pharmacies to check stock for you and then they can transfer the Rx electronically or via fax
  • Try a hospital pharmacy
  • If you are still not able to obtain your fludrocortisone acetate, please contact NADF at

You can share your experience getting your fludrocortisone prescription filled by taking this NADF survey. It's short--only four questions. 

Thursday, January 3, 2019

Getting your Cortisol Dosage Right

Doctors 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 replacement TO CUSHING'S PATIENTS, as if we don't know, as if we aren't still living the nightmare of excess cortisol made in our bodies. Many doctors refuse proper cortisol evaluation, imaging, or simple blood tests to evaluate related pituitary and adrenal hormones even when the patient asks. Doctors delay diagnosis in every way possible, leaving us with rampant cortisol excess for 7-10 years on average.

So let me be clear.

Updosing for illness is life-saving in the short term. The long term doesn't matter much if we are dead and not here to enjoy it.

All bodies use cortisol to fight off infection. Our bla bodies will fight off infection but it will use up our daily dose of cortisol replacement to do it, leaving us under-replaced and on a path to adrenal crisis. Diarrhea and vomiting both cause dehydration which alters how much fludrocortisone/ aldosterone replacement we have to rebalance our fluids. If a BLAer vomits, dehydration is an issue but the more dire concern is that oral meds won't be absorbed before vomiting again. In this case, we can take 20 mg HC under the tongue, take anti nausea medicine like zofran or phenergan to hold off the vomit. If we can't take extra cortisol by mouth, we must go to the ER 1) for IV fluids due to dehydration and 2) IV hydrocortisone. For diarrhea, dehydration happens but we can easily take oral steroids under the tongue to keep AI and AC at bay. Those of us who have D instead of V in adrenal insufficiency have more time to figure things out. After 4-6 bouts of diarrhea, then we have to go to the ER for IV fluids even if we keep the cortisol dose down. So it is a tricky flowchart to follow but we must do it when we are sick.

Docs tell us to just stress dose with fever. This is not true. Many of us need more cortisol meds for urinary tract infections, simple colds, upper respiratory infections, pneumonia, shingles, pain from kidney stones, etc. BTW I've had all those post op BLA. I needed more cortisol that the 20-25 mg HC i was taking daily. Once, I was feeling very tired and worn down one Monday. All I wanted to do was sleep. Wednesday morning I coughed once. I knew I was sick. I went to urgent care that same morning and I had pneumonia.

Our bodies will tell us it needs more cortisol. We must learn the cues, trust ourselves, take doc advice into consideration but ultimately take meds as we need to, without worry of judgment or repercussion from the docs. They don't live without adrenal glands. We do. All 230+ in the BLA group do. That is why I place 40% of my faith into the answers I get from BLAers, 10% from doctors, and 50% from my experience, knowledge, and instinct. I encourage you to gain enough knowledge and surround yourself with experienced Cushies for you to do the same.

Sunday, December 2, 2018

Patient Portals

Back 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 CC place. I told the labs it was my pcp doctor. They believed me and duly entered that number into their system. 

I would get my results via fax at the same time the ordering physician did. No additional waiting.

How did I know what the results meant? I made it my business to learn it all. Lab Tests Online  is the best resource I've found that gives simple yet thorough descriptions of the test, the reasons doctors order that test, and most importantly, what high or low results mean. 

I soon realized that doctors and staff tell us results take much longer to come in because they are building in the time it takes for the doctor to review each person's lab work and pass along next steps to their staff: call patient and schedule a follow up, add or change medication, refer to specialist, etc. Then we waited for that staffer to make it through those calls to the patients, adding days of waiting. 

Be thankful that we have patient portals now, and many times, we only have to wait 48 hours after results are released to the doctor before they are automatically released to us. 

Tuesday, October 23, 2018

Insurance 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 online, and search for some of the major medical facilities (MD Anderson, John Hopkins, Cleveland Clinic, Emory, Mass General, Cedars Sinai, etc). See if LabCorp and Quest are covered medical labs. Look at your out-of-network requirements/costs.
If you are going to aggressively seek treatment (especially surgery) in 2019, find a plan that gives you a wide range of options. For instance, if you know you want Dr. Chiang to perform your bilateral adrenalectomy, move to a plan that lists him as a provider. Your monthly premiums might go up, but that will be less expensive than paying for surgery out-of-network.
Don't assume that the "standard" (more expensive) is better than "basic" (less expensive). Because I am post-surgery, and most of my medical expenses are lab tests, I switched to the Basic plan because they cover labs at 100%. Yes, if I end up having to have surgery the hospital costs will be higher, but probably not much more than I've saved on premiums throughout the year.
Don't assume that the lower deductible plan is better. Look at the various copays and premiums. A high deductible may never be met (if you are fortunate and don't have to see many doctors) but those premiums are a guaranteed expense.
Finally, remember that this is an election year probably one of the most important of our lives. Denying coverage for pre-existing conditions is still a possibility, and Medicaid is on the chopping block. Vote for your Senators and Representatives like your life depends on it -- because this year it might.

Just in case someone is not really familiar with the terminology:

Deductible is the amount that you will be required to pay out of pocket before insurance starts paying anything. 

Annual out-of-pocket is the total amount you will have to pay. In other words, it includes your original deductible and then the amounts that insurance won't cover ($50 emergency room copay, 20% of surgical procedures, etc.). Once you hit the OOP, you pay nothing the rest of the year."

Friday, July 13, 2018

Guilt. 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 throughout the day. World Chef and Best Fiends, if you must know. I scold myself that this is the reason I can't get anything done. I vow to wake up the next day with a plan, a list, with focus. I am so behind. I have to get some things done. So I document all the tasks that need my attention, the bills that must be paid, the items that can no longer go unattended. I go to sleep with some hope that tomorrow will be better.

Then, it's not. It is the same as it was yesterday and the day before that, and the week before that.

That's the way it is with depression. Our bodies are suspended in time -- part of today but not fully --while the world continues to race past us with each second that goes by. We ourselves don't move but we constantly feel the wind of being left behind.

I can't do anything.

I have no motivation -- for even fun things, for important things, for myself, for my family.

Even with a list in hand, I have no 'get up and go.' I reprimand myself to get up out of the bed in the morning, and when I am finally out of bed, I long to go back 'home.' That's all I want to do... sleep. Even when I wake from a three hour nap, the relief I feel is brief. 

My mind caves under the pressure of consciousness. I didn't cook dinner. Again. I didn't go to the grocery store, and I didn't order groceries to be delivered. Again. I didn't send my husband a grocery list for him to stop at the store on the way home, because after 13 years together and with a 10-year-old child, he never knows what to buy for us.

I left my child alone again, with only the company of the TV to stimulate her brain and senses. I feel great guilt over this. TV is bad for kids. Video games are bad for kids. Yet what do I expect her to do when I leave her alone during summer? If I can let it go, I do, but on bad days like today, I realize that my poor child has spent far too many days in front of the TV while Mama slept. I realize that is not the priority for worry today, but each of these thoughts weigh me down, trapped in a world of things I can not do and can not change.

This is my life after Cushing's. I don't know how I got here, and I don't know how to get out. I see no glimpse of my old self, of my old life, and yet I see no path forward for me to reach a new level of happiness just as I am.

I feel the weight of the world on my shoulders. Ok maybe not the world but definitely the weight of my life and that of my family. I don't know how to carry this guilt and anxiety about the guilt with me anymore. I don't want it. I want the problems to go away, and I don't want to feel this way anymore. Yet, I don't know how it will ever go away when so much of the load falls on my shoulders. I have outsourced and paid heftily for everything I can. I pay housekeepers to come weekly to clean the house and wash our clothes. I have already perfected saying no. I say no so much that when I want to do something, there is no one around or nothing to do. 

The remaining jobs are mine, and I can't do them. I don't want to do them. They are too hard. I am a wife and a mother, and I don't feel very good at either.

I'm lost in the mundanity of my world. I don't want to be the inventory clerk of my house. I don't want to be responsible for cooking dinner every day and feeding my family and myself three times a day. I don't want to be asked where something is. I don't want to open to mail and pay bills. I don't want this to be the only thing I do with my day, so I avoid it. When I try, I quickly realize the limitations that Cushing's has placed on my body and mind. The chores go undone for another day.

With so much on my "To do but I don't want to do" list, I never get on to anything else, anything that I want to do, anything that piques my interests and makes me smile a bit. You see, I don't have the energy for those things either. On days when the schedule is empty and I could spend all day working on my interests and hobbies, I don't. I don't feel like it. I think about things I want to do when there is no time to do it. My curiosity isn't in sync with my abilities or mood. I feel guilty about that, too.  

As my day continues, so do admonishments I heap onto myself. Why don't I use my time more wisely? I'm such a phony because I am all talk. I have been talking about becoming fluent in French and moving to Europe, for how long? 30 YEARS?! I talk about going to the French movies that play once a month at the local college. I talk about studying the ancestors in my family tree. I talk about all the ways I need to renovate my house, projects to complete in my back yard and my front garden. I talk about how I have several children's books ready to write and how I just need to write them down. I even have a reminder on my phone to remind me daily to "Write for 30 minutes." Yet, I don't. I don't write, and I don't do any of the things on a daily basis that bring me joy or excitement. I feel guilt over that.

Who can make me do what I want besides me? Who stands in the way of me doing what I want to do? Me.  All blaming fingers point to me. I have 24 hours of time every day, just like you do. I am sensitive to all that I am *not* doing every day. I see around me and I hear the messages... "Live today like there is no tomorrow." I know what I am supposed to do, but I just ... can't. I'm burdened by all the living I'm supposed to cram into one day because those days turn into my life. Yet, I do none of those things that I say I want to do. I just don't want to do anything.

The days pass slowly into the next, with the only difference between them is how late I woke up, whether I managed to wear real clothes or even shower, or am I lying down on the couch or in the bed when my husband comes home. There are no other highlights in my day.

Sure, I have my daughter. As much as I love the dickens out of her, she is learning to be independent. As she does that, she realizes that she doesn't have to agree with Mama all the time. She is her own person, with her own ideas and desires. As outspoken as I am, I still sit here dumbfounded that my daughter who inherited this gene wields it against me. I have such a low tolerance for the arguing. I can't withstand the constant questioning of why I said no. With multiple explanations with more depth, she still demands more of me. I snap to break the intensity. No TV for you. No you can't go to your friends. She stomps off. Doors slam. I sit and wonder how on earth am I supposed to adapt or how will she?  I can't pass down life skills like coping when I feel like I can't cope.

My attempt to squelch the increasingly stressful episodes leave me feeling like a failure as a mother. Why can't I be more patient? She is just a kid. Why does she act that way? She must have learned it from me. She sees my inability to cope with stress, and she is talking back and acting out like I do. Either way, it is my fault. I'm the parent. I'm the mom. My child is a reflection of me.

No one cares that I am sick.

I feel like I can't win.
I don't know when it will end.

I think of all the expectations that I don't meet and I don't care about meeting. Yet the expectations I have for myself, for this life, I just can't let them go.

How do I forget everything I always wanted for my life? How do I throw all that away and dream up new dreams that are so small, they are barely an accomplishment? I have no expectations, and I have no goals. Why? Because I have held tight to small, achievable goals, and when the deadline comes up, I'm a no show. I flake. I can't hack it. I've learned not to make such deadlines for myself. 

I've seen the self-help shows and read the books and articles. I need to be more grateful for what I have. I run through all the things for which I have gratitude. I write it down only to completely forget about it a few days later. My mind is like a sieve. With all the things I forget, why won't I let myself forget all the things I never accomplished and the things I've done wrong?

How do I focus on today, when today is filled with no motivation and wanting to check out of this world with a nap? How do I focus on what I want when I have no ability to achieve my goals?

This is depression. 

Depression is the cycle of impossibility that never lets you see the glimpse of the light saying you can. That it will, somehow, happen for you--that you can do it.

Depression is sitting here wondering why you are just sitting here.

Depression is knowing you are not doing enough with your time and your life and not being able to do anything to self-correct.

Depression is spending weeks like this and only realizing later that you are indeed depressed. No other outward signals tell you that this is happening to you. Again, the weight of this discovery is on your shoulders to resolve, next to the heavy load you carry.

Once I realize I am depressed, I dutifully make the appointments with my psychologist and psychiatrist only to realize it is Friday, and I will have to muddle my way through the weekend and next week until 'the next available appointment' on Wednesday.

When the thoughts are swirling around my head so fast I don't know where else to put them, I come to a blog I have maintained for a decade.  I write it all down. On the one hand, I hope that writing it down will remove it from my head space. On the other, I hope someone who reads this blog will see herself in these words so she knows she is not alone.

I'm just hoping for my mind to quiet and to let me see some sparkle of hope that tomorrow can be different, that tomorrow can be better.

I close my eyes and check out of this world, hoping that my respite from the worry over my pain, emotions, and thoughts will give my body a few hours to reset and start again. Technology teaches us that when things go haywire, log out and try again later.

I have to put my faith in naps, because it is the only tool in my tool box that I can grab now.

I'll deal with all the guilt of inactivity and non-accomplishments later.

For now, my brain and my heart need a break.

I reach for the only thing that quiets my mind from the weight of the indignities.

I crawl into bed for a sweet nap and hope that I can tomorrow.