Advocacy

HOW TO GET ON THE CORTISOL PUMP

 

 

HOW TO GET ON THE CORTISOL PUMP-

Step 1- Assess your life, health and disease management.

The cortisol pump is not a cure for adrenal insufficiency and is not a treatment that is right for everyone. If you are well managed on the steroid replacement pills, the adrenal pump is excess money and effort you may not need.

The pump is NOT an easy thing to acquire and the fight to get one takes a great deal of trouble, mental stamina and resources.

You need to consider whether this is something you actually need or not.

Here is a link to a wonderful post about 5 reasons NOT to get a cortisol pump by a lovely woman who has adrenal insufficiency and is on the pump. Reasons NOT to Get a Cortisol Pump

That being said, If you are struggling with your quality of life this treatment may help you.

Step 2- Research, Learn and Educate for yourself!

Adrenal insufficiency is a rare disease not widely understood in the medical community. You need to become an expert on your own health, especially if you are attempting to get on the pump.

Most doctors barely know anything about adrenal disease. They have been taught that replacement therapy with pills is the only treatment and that patients live a normal life with this disease.

Nothing could be further from the truth.

You need to understand your specific health concerns.

Information you need to know-

What is your diagnosis? Do you have primary Addison’s disease, secondary adrenal insufficiency, tertiary adrenal insufficiency or congenital adrenal hyperplasia?

If you are unsure, here is a link to Understanding Adrenal Disease

What is your quality of life? Are you able to work, drive, do housework or function normally?

What have you tried to manage your adrenal disease?

Typically an endocrinologist will not even consider the pump until you have tried EVERY oral steroid possible.

What is your current daily dose of replacement steroid?

How much are you stress dosing?

What other medical issues do you have?

Are you able to afford the supplies and medication needed for the pump? Insurance does not typically cover “off label” treatments.

 

This disease is expensive and life threatening if left untreated. If you have A.I you HAVE to have some sort of steroid replacement to stay alive.

Just educate yourself on everything you need to know. You will have to present YOUR case to an endocrinologist to get the cortisol pump. Which brings us to the next point.

Step 3- Finding An Endocrinologist

This will be a difficult part of your journey to the pump. Finding an endocrinologist that understands adrenal insufficiency is a needle in a haystack and then finding one who will be brave enough to attempt guiding you through pump therapy just adds to the challenge.

Prepare the best case possible. Send your research, your health information, everything you can to the endocrinologist BEFORE your appointment so they are aware of your intentions before hand. Write a letter to the endocrinologist explaining diagnosis, failed treatments and desire to be on the pump.

You will have to fight to find a doctor willing to write the script for the pump. It will take effort, lots of research and a mental stamina.

Step 4- Battling the Insurance Company

Adrenal Insufficiency is documented to be treated by oral steroids and not by the insulin pump. Be prepared to be on the phone for hours and be told incorrect information. Just be aware that you will have to tell the same story to a different agent over and over and over again. Don’t give up.

 

Step 5- Getting A Pump & Supplies

If your insurance cooperates and provides you with a pump and supplies, GREAT! But I’m pretty sure with A.I it won’t be that easy.

Take heart, there are other options.

There are many ways to obtain a pump and supplies: Diabetic Barter Sites, Facebook Groups, Craigslist and Ebay.

The internet is a plethora of connectivity. You can find what you need, you just have to put in the effort to look.

Step 6- Waiting for the Pump

If you are not doing well on pills, switching to subcutaneous injections of solu-cortef may be an option while you are waiting.

To figure out your dose, You need to convert it from oral milligrams to liquid solu-cortef.

2 units= 1mg if you are doing a 2:1 ratio with actovials of solucortef.

You can also run a 1:1 ratio with 1ML of saline per 100mg of solucortef powder vials.

You also need to dose according to the circadian rhythm percentages.

Circadian dosing method example-

6am and 12 noon 40%

12 and 6pm 20 %

6pm to Midnight 10-15%

Midnight and 6am 25-35%

Source for the dosing is based on Professor Hindmarsh’s research (link posted below)

http://www.cahisus.co.uk/pdf/CIRCADIAN%20RHYTHM%20DOSING.pdf

Use solu cortef solution and inject with insulin needles.

The standard recommendation is to have lab testing to see how quickly you absorb and “use” the cortisol in your body.

You can have cortisol clearance testing done but it is not typically covered by insurance. It is beneficial to creating proper rates for your specific needs. A pump is only as good as the information programmed into it.

Step 7- Staying Sane

The process to get on the pump is long, obnoxious and detailed. No one should have to fight for years to get better quality of life. The healthcare system is broken and changes need to made. This stands for all diseases and treatments, not just adrenal disease.

Everyone should have access to a better life.

Take heart friends, Our voices will be heard.

This foundation is dedicated to adrenal disease advocacy.

 

Advocacy

When Invisible Illness Becomes Visible

Awareness about invisible illness is something that this foundation is incredibly passionate about. Those who suffer with diseases and conditions that cannot be seen are scrutinized by those who simply do not understand.

Conditions like Addison’s, Cushing’s and most adrenal diseases cannot be seen by the human eye but effect the lives of so many sufferers.

But what happens when your invisible illness suddenly takes on a visible form?

Which is worse; Looking well but being sick- therefore having people assume you are lazy and unmotivated  OR being sick and looking sick and having people stare at you in confusion; knowing something is wrong but not having the compassion to understand?

In either of these situations, people with chronic illness feel misunderstood.

My illness took on a physical form after my diagnosis of adrenal disease.

My body now bears the exacerbation and side effects of poor steroid absorption. Before I was on the cortisol pump  I was on steroid tablets, which I did not absorb and got very sick.

My once clear, ivory skin now bears the unfortunate appearance of acne, my figure is now in double digits instead of the quaint size “8”  I  formerly was and my body bears the bright purple/red stretch marks and scars resulting from my surgery and the mismanaged cortisol medication.

Every time I take a bath, I want to fight back tears. I want to scream and escape from the cage that my  body is. This cage is painful and unattractive. My once invisible illness has taken on a very visible form. I no longer can hide the fact that I am sick. No amount of exercise and make up can fix my body now. My diet is a strict as possible and I am in an intense physical therapy program for exercise and muscle strengthening. In chronic illness, there are just some things that cannot be controlled. I have to accept who I am now.

Self worth should never be dependent on looks. It is truly inner beauty that counts.

How someone treats another person is the TRUE reflection of who they are.

Anyone can have a pretty face, but not everyone can have a pretty spirit after going through darkness, pain and tragedy.

“True self control is controlling your thoughts, actions and feelings when nothing is the way you feel it should be.”

When I look at my body now, I have to realize that I did not choose this. I did not make bad decisions to cause any of the problems I have. Guilt is the worst thing a chronic illness sufferer can harbor in their spirit. It destroys us and is absolutely an unnecessary emotion.

Most of us with adrenal disease have struggled with our looks. Before my diagnosis, I was 87 lbs at 5’4….then four years later before the pump I ballooned to an obese size.

 

But you know what? My heart remains the same.

 

The only size that should matter is the size of your heart.

 

We have enough to battle, let’s not battle our own spirit as well.

You did not choose your illness, but you do choose to bravely fight it every day.

Whether your illness is visible or invisible, I hope you accept yourself for the strong warrior that you are.

If you are struggling with self acceptance, please reach out to us, we have counselors available to help you!

 

Wishing you Comfort &Cortisol,

Love, Winslow E. Dixon

The Adrenal Alternatives Foundation Founder

 

Advocacy

Celebrating Rare Disease Day

Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.

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For #RareDiseaseDay this foundation is running the AI Butterfly Challenge, where we are raising our hands for adrenal disease awareness.

The butterfly is the symbol for adrenal insufficiency, which is why we have chosen that as our hand gesture for this awareness challenge.

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To participate- Take a photo with your hands in the shape of a butterfly and upload to social media using the hashtags #ShareyourRare and #AIButterfly!

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Our objective is to flood social media (pinterest, instagram, facebook and twitter) with our butterfly photos to spread awareness on Addison’s disease, Cushing’s disease, Congenital adrenal hyperplasia, Sheehan’s Syndrome, Hypothyroidism, Conn’s syndrome, pheochromocytomas and all forms of adrenal insufficiency.

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Please join us by raising our hands for awareness with the AI Butterfly Challenge!

 

 

If you would like your photo edited with the official Adrenal Alternatives image, please send us your photo to inspire.fire@aol.com and we will edit it for you!