Tuesday, February 18, 2020
Thursday, February 13, 2020
Local groups are also a great resource to:
1) find a helpful doctor (and know who to avoid)
2) meet local Cushies who empathize and understand. Cushing's makes Cushies isolated and lonely.
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.
** BUILD YOUR SAFETY NET **
We have links to all known Cushing's groups below. Special thanks to Samantha B. for gathering helping to gather these links and developing this project.
Please help us guide our Cushie friends to these local groups, because we are in the business of saving lives. 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
The EPIC Foundation
Thursday, September 5, 2019
Monday, May 13, 2019
|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.
Saturday, April 27, 2019
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
|NDC for IMPAX/ Global is 0115-7033-01.|
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.
- 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 email@example.com
Thursday, January 3, 2019
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
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
https://labtestsonline.org/ 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
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
I feel lonely and unfulfilled.
I barely feel alive.
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.
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.
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.
No one cares that I am sick.
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.
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?
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.
Monday, July 9, 2018
Be sure to like my facebook page: Fight Cushing's with Moxie. Bye for now!
Wednesday, July 4, 2018
Too little or too much corticosteroid? Coexisting adrenal insufficiency and Cushing's syndrome from chronic, intermittent use of intranasal betamethasone
Be sure to like my facebook page: Fight Cushing's with Moxie. Bye for now!
Thursday, June 21, 2018
Prepare for your doctor's appointment. Read the tips I wrote 10 years ago about how to prepare for your doctor visit.
Tips to steady your feet
That doctor, not matter how good he/she is supposed to be, will act like it is impossible for you to have Cushing's. It happens all the time, to nearly all of us, so don't be alarmed. Knowing this in advanced should make you get serious about the task at hand. That doctor is the gatekeeper who will decide what happens to you next. Please understand that it is your job to make sure you get what you need out of that appointment, namely lab orders or imaging orders.
Sit up straight. Be confident. You know your body better than anyone, and you know something is wrong. Don't let doctor interrupt you and dismiss you. Your life depends on you standing up for yourself. Now is not the time to diminish your symptoms and downplay its effects. If you find your doctor doing that for you, you must stand up for yourself and get the help you came for.
I will list all the labs that will give you the big picture about your hormone health. I know what all of these tests are, and you need to know them, too. Spend some time on this super helpful site, Lab Tests Online. Search for the test in the search box. Then scroll down to common questions. My favorite section is "What do my test results mean?" This section is awesome because it tells us what both high results and low results mean. I have been using this site for over a decade, and it has been the cornerstone to my medical knowledge.
Print the following list and say to the doctor:
• midnight saliva cortisol x 4 (Docs suggest 11 pm but we know 12:15 am works better)
• midnight cortisol serums x 10, completed at the lab at the local hospital.
with patient's name, date of birth, test name and frequency, and diagnosis code.
Moxie Melissa dob: 11/1/1980
12 am + 12:30 am cortisol serum x 10
|The way the MRI machine "slices" through the |
pituitary at 2-3 millimeter slices.
Source: Oregon Health Science University,
School of Medicine, Diagnostic Radiology
— Images are taken. Then IV contrast is given while images are taken. This is the dynamic part of the protocol. These images are critical for radiologist and neurosurgeon to see how the contrast dye is absorbed. Normal tissue will absorb the contrast uniformly, but tumors/adenomas will not absorb the contrast.
Learn more about dynamic protocol of the pituitary.
Have a "Get It Done," "Won't Take No for an Answer", but "Catch more Flies with Honey than Vinegar" attitude. Persistance is key. So is a smile.
Remember that some doctors are jerks and decide if they will help you. In the end, it could be them and not you. If you realize you will not get anywhere after concerted efforts, tell the doctor that you are disappointed in this service, and you won't be coming back. Or, like many Cushies have been reduced to, hold back your emotions for as long as you can and burst into tears in your car. It happens, and it isn't your fault. Read this link about some doctors being bad and you will realize, this is an uphill battle even if we didn't have Cushing's. It is just a dire situation once we finally find the name to what ails us after so many years.
9. Graphics for diagnosis
I've included this graphic only as a sample, not as the gospel. Why? Because this and the many graphics found in Google images only apply to patients who are FLORID, meaning cortisol results will all be high. These processes do no apply to CYCLICAL patients like me, who despite having normal UFCs and suppressed on the low dose dexamethasone suppression test, STILL DO HAVE CUSHING'S.
|Source: American Association of Endocrine Surgeons|