6 Things to Remember when a loved one is battling Adrenal Insufficiency

6 Things to Remember when a loved one is battling Adrenal Insufficiency

 

Perhaps you have come across this article because you or someone you love has just been diagnosed with Adrenal Insufficiency. I am writing this article because I have been in the front lines of this fight alongside someone I loved. 

Those of us unfortunate enough to cross paths with this situation will tell you the naked truth; A.I is no laughing matter. In fact, it can be downright debilitating.

Don’t be defeated; all is not lost. When life bears down upon you in such a unfair way, you must push back with even greater determination. Sometimes, however, it can be difficult to even see the way forward. I have been a part of the AI fight for almost ten years and I will share with you the things that I wish I would have known sooner.

  • Take your diagnosis seriously!


    A.I is no laughing matter. You or the one who was diagnosed have a fight for quality of life on your hands. A.I can worsen if left undiagnosed, unchecked, or untreated and can even become life-threatening. The sooner you act upon it, the better you will be able to mitigate the effects of AI. My then-girlfriend began experiencing symptoms of AI almost 10 years ago. The tiredness, the diet changes, the sleep paralysis were all chocked up to stress, depression, etc. It took 5 years to get a proper diagnosis identifying what was actually wrong. By this time, AI had done so much damage that her adrenals were in total failure and beyond recovery. Do your best to take action ASAP.

  • Don’t despair; there is support out there.


    There are others out there that are dealing with the same circumstances you may be currently facing. These people can certainly help remind you that you are not alone in this fight. However, just like in any community, remember to associate with the right people. There will be those who have succumbed to despair and after all, misery loves company. Surround yourself with those who are positive. Learn from those who have found ways to make the best of their situation. In addition to this, there are advocacy organizations, such as Adrenal Alternatives Foundation  which can help inform you in the fight against AI.
  • You’re going to have good days and bad days.


    Go ahead and come to terms with this one. Depend on the severity of your diagnosis, you are not going to feel like a ray of sunshine every day. Don’t beat yourself up. Don’t tell yourself that you need to need to be doing everything your healthy peers do. If you are having a bad AI day, then do not push yourself! Remember, you do not have the advantage of health that your peers have. Don’t let others pressure you into doing more than you can handle that day. You may have to tell them “no”. You may have to insist. There are many people who won’t understand your situation. Do not allow them to get under your skin or make you feel bad.
  • If your loved one has AI, support them as best you can!


    Following up on the last point, people suffering with AI are not going to be at 100% very often. If your loved one has AI, please be understanding and patient with them. Many times they will feel depressed, defeated, or otherwise negative. I can tell you from experience that they need your special attention more than ever at these times. It can be difficult on you, the caretaker, sometimes. However, don’t think that your loved one is purposefully being a downer. If they could help the way they feel, they would change it. Don’t get discouraged, though! There is a response to this situation that works a lot of the time!
  • CORTISOL, CORTISOL, CORTISOL!


    This is the juicy part. Depending on your diagnosis, there is a good chance that you need to take cortisol in order to stay alive. If you or your loved one with AI is really dragging, or seems to not be acting like themselves (for example my then-girlfriend would get overly emotional) there is a very good chance that they need to increase their cortisol intake. I’m no doctor, but I can tell you from years of experience that when the migraines start coming on, the despair starts setting in, or the will to carry on just isn’t there, a updose in cortisol is the tried-and-true answer 90% of the time.  It isn’t some sort of panacea, but it almost always has helped. Sometimes you may have to remind your loved one to up their dosage. Often, the effects of AI can be so overwhelming that the one suffering can forget to updose themselves.
  • Look into all of the methods of AI treatment.


    Let me be frank. The endocrinologists don’t know a whole lot about how to handle  AI. In fact, finding a good ‘endo’ can be a huge challenge. In our situation, we have tried everything from pills to shots when it comes to delivering the cortisol/steroids that you may need. If you ask my personal opinion, the Cortisol Pump method has been the best solution by far for us. Obtaining a cortisol pump allowed quality of life to return to an otherwise bedridden woman. If we had known about this option from the start, we would have gone after it immediately instead of trying the other methods.

Dealing with this disease can be a costly matter. However, the most important thing is to not give up. It is possible to get insurance to cover some things. You can definitely get to supplies you need. Talk to people, because there are those out there looking to help you with your situation. Sometimes you might get bad news for your efforts, but keep on punching, because eventually you will break through, even if it takes a while.

Even though it has been a challenge to fight adrenal insufficiency, it doesn’t make you any less of a person. I would have chosen this woman over and over again despite her diagnosis. 

Don’t give up. 

Miracle Mermaid- The Story Behind the Adrenal Alternatives Foundation

Mermaids and adrenal disease……what do these two things have in common?

We all know mermaids are the mythological creatures found in fairy tales and storybooks we read as children. Many of us spent countless hours in pools and the ocean, pretending to be these fantastic, beautiful creatures…..only to grow up to find the harsh reality that mermaids don’t exist….but diseases like adrenal insufficiency do.

Winslow E. Dixon was that little girl who loved mermaids. She loved the water and idolized all things ocean. As a child, she blissfully played in the ocean waves, pretending she was a creature of the sea.

But that little girl grew up to realize that her fairytale of living in the sea wouldn’t come true. Life dealt her a stiff hand of medullary sponge kidney disease and endometriosis, which resulted in chronic pain from a young age.  This chronic pain was so severe it taxed her life and resulted in total adrenal failure- Addison’s disease. At 23 years old, this little girl grew up to find the nightmare of an adrenal crisis, never to be the same again.

Her health failed and her dreams crashed along with it.

But that little girl, all grown up now, was determined to get her life back.

She searched far and wide for options to treat her disease and discovered the promising hope of the cortisol pump.

She quickly discovered this treatment option was hard to come by.

Nevertheless, she persisted.

She visited multiple endocrinologists nationwide and was rejected by multiple doctors. No one seemed to want to take a chance on this treatment.

After two years of fighting, she decided to do it herself. She enlisted the help of a pharmacist and consulted Professor Hindmarsh and decided to take control of her health. She began the cortisol pump in March of 2018.

So where does the mermaid come in?

Winslow went from being completely bedridden and unable to function to being able to enjoy life again.  She was able to fulfill a life long dream of swimming like a mermaid, thanks to the strength she found from using the cortisol pump.

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Though the pump has not been a cure, it has helped her find better days and more quality of life.

After seeing how little resources there were on cortisol pumping, Winslow then decided to start the Adrenal Alternatives Foundation to help adrenal patients find every resource to manage this devastating disease.

When you’re adrenals fail, you are forced to find alternatives…..which are typically oral steroid pills. The treatment protocols for adrenal insufficiency have not changed since 1920. This is unacceptable. Research and treatment protocols are outdated.

For those with severe forms of this disease, oral steroid therapy is not enough to live a normal life.

This foundation was created to be the voice for those struggling with unmanaged adrenal disease.

Life may not be a fairytale, but it doesn’t have to be a nightmare.

Winslow’s story shows us that even though things may look bleak, there is always hope.

Adrenal Alternatives Foundation is here to educate the world on the TRUTH of adrenal disease and to empower patients to find the best quality of life possible.

Change is coming for adrenal disease ❤

 

 

 

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

 

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!

Up-dose or Collapse: A Lesson about managing cortisol with adrenal disease

In a normal person, during situations of emotional or physical stress their body releases more cortisol. The excitement from a happy event, the sadness from a death of a loved one or the strain from exercising are examples of things that would cause the body to release more cortisol.

In an adrenal insufficient person, this does not happen.

They have to artificially manage their cortisol. Their personal cortisol needs may differ from day to day. No two days are the same and it is a struggle to regulate proper cortisol levels.

Most of us “adrenal disease veterans” know this.

We know we have to constantly be vigilant of our cortisol levels.

Yet, most of us still struggle when deciding to up-dose.

We typically think things like……

Do I REALLY need more cortisol?

I can push through this….

I’ll be fine….

Some of our endocrinologists scold us for up-dosing or relying on a higher basal cortisol dose.

All these things flood our minds when we are trying to manage our adrenals artificially.

Unlike diabetics who can check their blood sugar, there is no cortisol meter for adrenal patients. We have to constantly be aware of our levels, which can present with various signs of “lows” and everyone is different.

How do you know when you need to up-dose?

How do you know when your cortisol replacement is correct for you?

I had to learn a hard lesson recently about the true importance of up-dosing with adrenal insufficiency.

I have adrenal disease, endometriosis, medullary sponge kidney disease and I am currently on the cortisol pump.

This past weekend, I was a bridesmaid in my baby brother’s wedding. The wedding required me to travel, stay away from home and was very physically taxing.

The wedding was Saturday, we traveled to the destination on Thursday and the weekend was filled with pre-wedding activities.

It was a massive struggle with my health. The traveling alone was taxing….then the rehearsal dinner….entertaining guests and having to sleep on a couch….

I started to develop low symptoms, which for me are unbearable cluster migraines which usually result in temporary blindness.

A board member of this Foundation and fellow adrenal disease patient texted me to check on me. I told her my migraines had come with a vengeance.

“Are you sure you are replaced enough? Sounds like your low.” She said.

“Yeah, I’ve bolused a few times here and there.” I responded.

(My bolusing was 2-4mg here and there…which I now realized was like nailing jello to a tree with all the activity, heat and symptoms I was enduring)

I did all my pre-wedding duties and was exhausted.

When I woke up the day of the wedding, my migraine was even worse. But it didn’t matter. I HAD to DO what I HAD to DO!

I was determined that I was going to be in my baby brother’s wedding.

I determined that I was stronger than this disease. Mind over matter was going to work for me that day!

So, I pushed through……

My board member friend called me.

“Winslow, I just wanted to call and make sure you were preparing for today. Have you bolused? Did you adjust a temp basal increase?” She asked.

I had never before done a temp basal increase. I always think I can just endure whatever I force myself through.

I explained to her I’d bolused here and there and she convinced me to set my rates to a 200% temp basal increase. I hesitantly did it, mainly because the migraine was at an unbearable point and I hoped it would quell the awful pain.

My pump rates were set higher and I continued to get ready for the wedding.

Migraine didn’t stop but I pushed through anyhow.

The first duty of the day was to take pictures before the wedding.

Little did I know, these pictures would be done fully dressed in the ballgown bridesmaid dress, in the Florida heat with tons of walking around to different areas outside.

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(Here is a picture during the ceremony, as you can see the dresses were not made for the heat of Florida in the summer!)

We started taking pictures at 11:30 and didn’t get done until 1:30. I had spent 2 hours in the heat. Being salt wasting, I struggled to keep control of my consciousness.

My head was killing me. All I wanted was to lay down in a cool room and eat an entire shaker of salt and drink cold water.

But the wedding started at 2:00pm. I had to push through. I had to make it. I had to smile and look like I wasn’t as absolutely miserable as I truly was.

I didn’t have any water so five minutes before the wedding, I choke down/dry swallowed a migraine pill (sumatriptan) and hoped it would quell the unbearable throbbing going on in my head.

I was in a corseted dress and couldn’t get to my pump. I felt myself struggling to stay conscious. Even with the temp increase, I was getting dangerously low. I quickly asked my mother to access my pump and give me a bolus. This was a challenge because it was hooked to my spanx in the back of the dress. Mom had never before touched the pump so explaining how to bolus was a challenge, especially since we were in a hurry.

She bolused the max my pump would at 5units (mg)

I quickly rushed into the wedding line up and smiled the best I could.

During the wedding, I stood the whole time. My headache only got worse but I kept smiling.

Thoughts of my stubborn personality mindset swirled through my head.

I will not ruin this day for Joshua and Rachael.

I can make it through this.

I will not throw up.

I am stronger than my disease.

I will not let anyone see me collapse.

I’m stronger than this pain.

Just breathe, Winslow. Just breathe……

You are strong enough to endure this suffering.

Smile…..don’t ruin this for your brother….

I made it through the wedding, they said I do and I wanted to say GOODBYE and go lay down.

I’ll just sneak off and miss the reception….. I thought.

No. We had pictures to take after the wedding.

After that, I was informed we would be announced into the reception as the bridal party.

I realized sneaking away wasn’t an option.

My assigned seat was right next to the bride at the head table.

I felt my cortisol dropping. After I was announced into the reception I grabbed my plate, acted like I was going to get food and just kept on walking back into the church.

I started losing my eyesight, getting tunnel vision and realized I was heading into crisis.

I wasn’t going to ruin this day for my brother.

I refused let everyone witness the trainwreck that my health is.

I struggled to walk back into the room the bridesmaids had gotten ready in, turned the lights off and collapsed in the floor.

How am I low with a 200% increase?! I wondered.

I suddenly got a strong wave of nausea and started vomiting.

Crisis, I knew I was headed straight into crisis.

I texted a friend of mine with my fading eyesight and hoped they’d alert my family…which they did not……

The bride’s sister found me laying in the floor of bridal suite room.

My intention was to slip away and get it together enough to return to the reception. But I was too low and ended up vomiting and passing out.

By the time my dad got to me, I had lost my eyesight and was fading in and out of consciousness.

He took me back to the house we were staying in. I laid down and tried to keep it together.

I knew I needed more cortisol.

My good friends from home had come to the wedding and immediately came to my aide so my dad could return to the reception.

My best friend, her sister and her mom helped me get out of my dress, administered more cortisol and gave me electrolytes (pedialyte).

Throughout the whole wedding, I had only had 50mg of cortisol. My normal dose is 37mg daily.

Though I had 200% increase, it was NOT enough for all that activity, physical and emotional stress.

Had the board member not called me and made me increase my basal rates, I’m quite sure I’d have suffered a major crisis and may not have survived.

My choices were either UP-DOSE or COLLAPSE.

The lessons I learned-

1-There is NO magic number for cortisol. If you need it you need it!

2-Do not be afraid to updose.

3-Give your body what it needs!

4- Artificially managing a body system is complicated and needs careful attention.

5- It’s better safe than sorry.

Take a page from my stupid book and up-dose BEFORE you crash.

This is your life, your disease and your health.

Take care of yourself. Give yourself enough cortisol.

Wishing you comfort and cortisol,

Winslow E. Dixon, Adrenal Alternatives Founder

Thank you foundation board member, Erin Fallon for talking some sense into me.