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!

https://www.facebook.com/391955364517474/posts/906917286354610?sfns=mo

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.

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 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 www.cushingsmoxie.com.  I also have a Facebook page https://m.facebook.com/fightcushingswithmoxie/. 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!

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.

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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.

Moxie

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!!

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."

https://news.stanford.edu/2018/07/20/wearable-device-measures-cortisol-sweat/?fbclid=IwAR3nLduaowkiwpnL0b3ad8ddMkiPKK6Hm2GevuTL8I9Ic9RcIlKl1ASXxO8

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.

Excerpt:

"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 nadfmail@nadf.us

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

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.