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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

How to Be Tested for Adrenal Insufficiency

Adrenal disease can be life-threatening and is rarely tested for. This post was written to explain how to be properly tested for adrenal disease. This is not to be used to diagnose or treat condition. Contact your doctor before starting or stopping any medication or treatment.

There are many forms of adrenal disease-

(This is not an all inclusive list, there are hundreds of adrenal complications)

Adrenal Insufficiency- Disease of the adrenal glands, resulting in the lack of cortisol production. Can also result in lack of DHEA, aldosterone and disrupt the balance of endocrine hormones, electrolyte balances and blood sugar levels.

Primary Addison’s disease- Autoimmune disease resulting in the
destruction of the adrenal glands, rendering them unable to
produce proper amounts of cortisol, DHEA & Aldosterone.

Secondary Adrenal Insufficiency- When the pituitary gland does
not produce the hormone ATCH (Adrenocorticotropic hormone)
resulting in the lack of cortisol production in the adrenal glands.

Tertiary Adrenal Insufficiency- When the hypothalamus fails to
release CRH (corticotropin-releasing hormone) which stimulates the
production of ACTH by the pituitary gland.

Congenital adrenal hyperplasia (CAH)- Genetic disorder present from birth that impairs the adrenal glands. CAH patients lack the enzymes the adrenal glands use to produce hormones that help regulate metabolism, the immune system, blood pressure and other essential functions.

Cushing’s Disease- A rare condition that is the result of too much cortisol production in the body.  One source of Cushings is when the adrenal glands have a tumor; making too much cortisol. Another cause of Cushing’s syndrome is when the body makes too much of the hormone ACTH; which causes the adrenal glands to make cortisol.

Possible Symptoms of Adrenal Insufficiency-

(Note- This disease is sometimes referred to as “Syndrome X” because it presents different in everyone. The following symptoms are possible ailments that may be present in adrenal disease but are not all inclusive.)

Pain in the abdomen or muscles or joints, dehydration, dizziness, fainting, fatigue, lightheadedness, loss of appetite, low blood pressure, low blood sugar, water-electrolyte imbalance, or sweating, nausea or vomiting, craving salty foods, darkening of the skin, excess urination, muscle weakness, reduced sex drive, or weight loss.
If you are craving sea salt or salty foods, PLEASE get tested. That is one of the most prominent signs of adrenal disease.

The primary diagnostic tests that endocrinologists use to diagnose adrenal disease:

ACTH stimulation test- Measures how well the adrenal glands respond to the release of the adrenocorticotropic hormone (ACTH). When this test is done, blood is drawn prior to injection of ACTH, then at 30 minute intervals for a few hours to test your adrenal response to the ACTH. If your cortisol levels do not rise properly, you are then diagnosed with adrenal insufficiency.

Dexamethasone Suppression Test- Tests adrenal gland function by measuring how cortisol levels change in response to the steroid dexamethasone. This test has historically been used to diagnose depression as well.

8am Cortisol Blood Draw- Your body’s natural cortisol levels should be the highest in the morning, according to your body’s circadian rhythm. If your AM levels are low, it indicates an adrenal issue.

(Saliva and urine tests are also performed, but are not as widely accepted for diagnostic criteria)

Alternative Test- An insulin tolerance test (ITT) is a medical diagnostic procedure during which insulin is injected into a patient’s vein, after which blood glucose is measured at regular intervals. This procedure is performed to assess pituitary function and adrenal function.

Important Warnings-

Do not get on any steroids before you have had an ACTH stimulation test. You will forever battle for the right diagnosis with an endocrinologist if you do. Steroids can cause adrenal suppression and if you do not get tested BEFORE your steroid use they will always assume you have secondary adrenal insufficiency, even if that was not the reason you developed adrenal failure.

Do yourself a favor and get tested and discover your body’s natural adrenal function. 

Steroids are life saving medications for those with adrenal insufficiency, but they do come with side effects.  (Such as- Weight gain, stretch marks, cataracts, glaucoma, easy bruising, acne, increased appetite, increased growth of body hair)

They are not medicines that you want to start on a whim.

Steroids CAN cause adrenal suppression.  DO NOT get on them unless your doctor is SURE you need them.

(Acute uses of steroids are common for infections and asthma, this is not what I am talking about. Long term or repeated use DOES come with risks. Please be advised and ALWAYS consult your doctor regarding your medication use) 

An adrenal crisis will lead to death if left untreated. If you suspect you are having adrenal issues, please request the following-

Tests-

ACTH Stim Test

or

Dexamethasone Suppression Test

Blood Tests-

Aldosterone, DHEA, Cortisol and Renin levels.

 

To read more about adrenal disease visit the following links-

Understanding Adrenal Disease

The Care and Keeping of Adrenal Disease

Video- How to easily explain Adrenal Disease

This post is not intended to diagnose or treat any medical condition. Consult your health care provider before starting or stopping any medical treatment. I am NOT a doctor, nor do I claim to be. I am simply an adrenal insufficient woman who has done much research to understand adrenal disease and seeks to help others understand as well.

Advocacy

Understanding Adrenal Disease

Adrenal Diseases-

Adrenal Insufficiency- Disease of the adrenal glands, resulting in the lack of cortisol production. Can also result in lack of DHEA, aldosterone and disrupt the balance of endocrine hormones, electrolyte balances and blood sugar levels.

Primary Addison’s disease- Autoimmune disease resulting in the
destruction of the adrenal glands, rendering them unable to
produce proper amounts of cortisol, DHEA & Aldosterone.

Secondary Adrenal Insufficiency- When the pituitary gland does
not produce the hormone ATCH (Adrenocorticotropic hormone)
resulting in the lack of cortisol production in the adrenal glands.

Tertiary Adrenal Insufficiency- When the hypothalamus fails to
release CRH (corticotropin-releasing hormone) which stimulates the
production of ACTH by the pituitary gland.

Congenital adrenal hyperplasia (CAH)- Genetic disorder present from birth that impairs the adrenal glands. CAH patients lack the enzymes the adrenal glands use to produce hormones that help regulate metabolism, the immune system, blood pressure and other essential functions.

 

Body Chemicals Affected in Adrenal Insufficiency-

Cortisol– Glucocorticoid hormone: The body’s stress hormone.

Aldosterone– Mineralocorticoid hormone: Regulates electrolyte balances by instructing the kidney to release potassium and retain sodium.

DHEA– Hormone that aids in the production of androgens and estrogens (male and female sex hormones)

(Blood sugar levels and electrolytes can also be impacted)

Diagnosis-

The primary diagnostic tests that endocrinologists use to diagnose adrenal disease:

ACTH stimulation test- Measures how well the adrenal glands respond to the release of the adrenocorticotropic hormone (ACTH). When this test is done, blood is drawn prior to injection of ACTH, then at 30 minute intervals for a few hours to test your adrenal response to the ACTH. If your cortisol levels do not rise properly, you are then diagnosed with adrenal insufficiency.
Dexamethasone Suppression Test- Tests adrenal gland function by measuring how cortisol levels change in response to the steroid dexamethasone. This test has historically been used to diagnose depression as well.

8am Cortisol Blood Draw- Your body’s natural cortisol levels should be the highest in the morning, according to your body’s circadian rhythm. If your AM levels are low, it indicates an adrenal issue.

(Saliva and urine tests are also performed, but are not as widely accepted for diagnostic criteria)

Easy Explanations-

Most people understand what diabetes is. Diabetes is the lack of the appropriate amount of insulin. Diabetics have to be vigilant of their blood sugar levels and manage their disease with insulin shots/pumps. This is very similar to Adrenal Disease. Just the like the diabetic, the AI patient has to have an external source for their deficiency, but instead of insulin- we replace cortisol. Unfortunately, unlike the diabetics, we have no meter to check our cortisol levels. We have to physically watch our symptoms and stress dose or use an emergency injection if we drop too low. Lack of cortisol is DEADLY. An adrenal crisis will occur if an AI patient does not have cortisol replacement.

Adrenal Crisis-

An adrenal crisis presents differently for everyone,
depending on which form of AI the person has.
Some possible symptoms are-
Blood Pressure/Heart Rate Changes, Weakness, Vomiting, Trouble Breathing, Anxiety, Flank/Back Pain,
Mental changes. These are not the only symptoms-
Everyone presents differently. It is important to always
wear a medical alert bracelet and have an emergency injection with you AT ALL TIMES.
Adrenal Crisis WILL result in death if left untreated.

Treatment of AI-

Medications such as Prednisone, Dexamethasone & Hydrocortisone replace the steroid hormone, cortisol in the body.

The medication Florinef (Fludrocortisone) is used to treat the lack of aldosterone in the body. Not everyone with AI needs this medication, it is mainly used in primary addison’s disease patients.

Side Note- Everyone is different! Not all steroids work for everyone!
Find the right one for YOU with your endocrinologist!

Managing adrenal disease is different for everyone,
but the absolute essentials for EVERY AI patient are-
Daily Replacement Cortisol Medication
Proper rest, hydration, stress management and nutrition.
Knowing the signs of low cortisol (there is no meter to check blood levels)
Respecting the physical limits of your body
Having an Emergency Injection of Cortisol at all times
Wearing a medical alert bracelet at all times

Adrenal disease certainly presents with  it’s own unique challenges,
but it is not impossible to live a happy life with A.I.

Proper self care, medication and stress
management is imperative to living
the best life possible.

This post is not intended to diagnose or treat any medical condition. Consult your health care provider before starting or stopping any medical treatment.

I am NOT a doctor, nor do I claim to be. I am simply an adrenal insufficient woman who has done much research to understand adrenal disease and seeks to help others understand as well.

Sources-

http://www.healthline.com/health/acute-adrenal-crisis#overview1https://www.niddk.nih.gov/health-information/endocrine-diseases/adrenal-insufficiency-addisons-disease

http://www.medicinenet.com/script/main/art.asp?articlekey=2191http://www.mayoclinic.org/drugs-supplements/dhea/background/hrb-20059173https://pituitary.org/knowledge-base/disorders/adrenal-insuffieciency-addison-s-disease

Advocacy

Adrenal Awareness Care Package Program

We are so excited to announce the Adrenal Awareness Care Package Program!

The Adrenal Awareness Care Package program is run by the Adrenal Alternatives Foundation and provides adrenal patients with comforting products and supplies as well as encouraging and educational resources to improve their lives as they fight this devastating disease.

To qualify, you must live in the United States and have been diagnosed with an adrenal disease.

(We hope to branch out to be able to ship care packages internationally at some point but for now only can ship in to the USA due to costs)

Applications will be considered by the Foundation.

Our Care Package program will begin taking applications now through April of 2019 and we will begin our package distribution in the summer of 2019.

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Applications for the following year will be accepted again in January of 2020.

To apply, please fill out the application at the link below.

https://docs.google.com/forms/d/e/1FAIpQLScgu4TctP0LcrqEu4KQKU-krHAG7wPehABGgqCXTJ8h79RCcw/viewform?usp=sf_link

Wishing you all comfort and cortisol,

The Adrenal Alternatives Foundation

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!

Advocacy

Understand your Adrenals Series

One of the main goals of this Foundation is to bring awareness to Adrenal Disease.

We are pleased to announce we have collaborated with the healthcare education site- ZUBIA ( https://zubialive.com/ )  to teach a 4 part webinar series designed to educate the world on the adrenals, what they do and bring awareness to adrenal issues.

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The videos are posted below-

Episode 1- What do the Adrenals do?

Episode 2- Adrenal Fatigue VS Adrenal Insufficiency

Episode 3-  Types of Adrenal Diseases/Problems

Episode 4- Keeping your Adrenals Healthy

Advocacy

Test after test with no results.

A powerful post on the truth of addison’s disease by foundation contributor, Ilena Bickley.

 

One of the most frustrating things about having Addison’s Disease is the extreme exhaustion. I want to do things, but my body doesn’t allow for it. I have a life to live, but I can barely make it from my bed to the couch. I can’t explain what causes the exhaustion. I have tried to track what I have done, but no matter what it is, there is no consistency. One day I can rest all day long and the next day, I am even more exhausted.

One day I can push through and get everything I need done and the next day have all the energy in the world. No matter what I do, I can never predict when I am going to have a bad day.
All the other strange symptoms that come with it as well. I have no clue where they are coming from or if it’s from Addison’s. I can’t tell if one day I will be able to walk, or have nausea, or extreme joint pain. I know that I have gotten worse and when I go to the Drs. they want to run tests to see what is wrong. And of course the tests all come back normal. Why are they normal, when I don’t feel normal? Is this my new normal? When do you stop going in for tests and just accept all the new, weird, painful symptoms? Can we do that? What are the risks for ignoring them? So many unanswered questions.
I just had my colonoscopy and endoscopy on Tuesday and that was hell. They ended up taking some tissue and sent it off, but everything else looked good. I have horrible pain, bloating, and nausea when eating, so why does it all look normal? I know this is not in my head. I want to be able to eat again, but if the results come back with normal results, what do I do? I am already vegan. This issue just started over a month ago so I am at a loss of what is going on.
I like to look through Facebook and Instagram to see if other Addisonians are having these same issues. I know every Body is different, everyone has multiple autoimmune diseases, so all the symptoms are different (a lot are similar though).
When will Drs. start taking us seriously? I wouldn’t wish this disease on anyone. It is such a difficult life to live. People don’t believe you…. Drs. don’t believe you. You feel like you are losing your mind and then start to question your own symptoms. No one wants to feel like this. No one wants to live with this kind of pain (at least I hope not).
I can understand when results always come back as normal. It’s hard to believe that something is going on when there is no proof. There is no proof of a lot of things, but people will search and search to find answers…. So why is it different when it’s a person’s body. I think that autoimmune diseases are known about enough for their to be more research done on it.
I recently watched Brain on Fire. It was like watching my own life (to a point). They ran test after test and said she was fine, but there was something wrong. She had amazing parents who wouldn’t stand for their answers and they pushed. Finally one Dr. knew something was missing and she went seeking help and found it. The Dr. worked hard and finally found out what was going on. I know if I was a Dr. I would want to exhaust every resource in order to find answers and then keep going. We are not guinea pigs, but to some extent I would be willing to try things in order to get answers and help the research in curing autoimmune diseases. There is so much out there on cancer, but autoimmune diseases seem to be just as common as cancers.
Even though your test results might not show anything, please don’t give up. There might be some Dr. out there that will look harder and find something that will change the game for all of us. Keep fighting and keep advocating for yourself. I know it’s exhausting, but we have to keep fighting.

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