April marks Adrenal Insufficiency Awareness Month. I am always very open about the health events I go through. This is my most challenging and frustrating of my chronic illnesses. I will share with you what it is like to experience adrenal insufficiency. Interesting fact — John F. Kennedy had this, too!

Sitting on your kidneys are two triangular shaped objects called adrenal glands. They are the fancy top hats to your kidneys. In your brain is a pituitary gland that is the size of a peanut. It sends messages (not via text message) to your adrenals to make stress hormones. You may have heard “stress hormone” or “cortisol” on “Dr. Oz” in relation to stress leading to belly fat. While this may be confusing, cortisol is actually 100 percent necessary for a person to remain alive.

My body is like, “Awww heck no, I’m not making this stuff.” It was scary when I was diagnosed years ago because I couldn’t keep down nutrients and was slipping into a coma. I’ve never written an essay about it because it’s still pretty traumatic for me. Here’s the thing — cortisol is necessary to live and is also released when are under any kind of major body or emotional stress. Except mine doesn’t.

I have my daily dose of medication and have to stay deeply in tune with my body to know if I need more medication. If I somehow don’t notice, I start to become very ill. However, I know myself well. This makes any stress situation — medical or emotional — more challenging. There’s also no “one shoe fits all” protocol for everyone. What’s hard is so many paramedics and ER staff seem oblivious to this condition during the time when treatment is desperately needed. I’ve gone from barely able to be conscious to perking up with a simple injection. They just need to be informed to provide that injection, which is why awareness is crucial.

It can be a challenge at times when I look at what my peers are able to accomplish. It’s then that I remember that life is not a race. It’s hard when I lack the energy to do typical things that 20-somethings are known to do. I went through a phase of trying to push my body beyond its limits. I had a night or two of trying to go out to clubs or bars, only to realize that it made me sick and zapped my energy for weeks. It wasn’t worth it. I do love traveling, and this also tends to put a lot of stress on my body. I have learned to arrange flights to be as short in duration as possible. I make sure my first day upon arrival is a rest day.

In time, I’ve learned the only way to live successfully with a chronic illness is to be kind to yourself. I’ve been fortunate that my calling in life is writing, something easily accomplished while in bed. I will be taking part in an 8K walk in September for the hospital I attended as a child. It will take me months to build up to walk that far. It could be easy to spend days frustrated about what I used to be able to do — endless energy, staying up late, not needing rest days, or not having to worry about making sure I have pills with me at all times. Instead, I take pleasure in spending time with loved ones and pursuing my creative endeavors.

man and woman wearing aprons at painting studio
Sami painting with her boyfriend.

What’s challenging about adrenal insufficiency is that no case is the same. What I’m capable of, others may not be capable of at all. Some people are able to do far more than I am able to. There is no winner. It’s also easy for others to be confused that you are actually ill because you look so well. It’s frustrating when I or my fellow adrenal insufficiency cohorts are expected to be a representation of bravery just because we have an illness we didn’t choose to have. It’s important for all of us affected by adrenal insufficiency to take the time to grieve the life that was once lived before diagnosis, and it’s helpful to have the support of family and friends during this time.

It can be a very uncertain life, but can’t that really be said of all things in life? I keep going when I can. I stop and rest when I need to. People with illness are often told they are an inspiration just because they are disabled. I would only hope that the reason anyone would be inspired by my journey is because it encourages them to not feel like they are alone or that all of their hopes and dreams are crushed due to a diagnosis.

It sucks, I won’t lie. Even if my medication is fairly regulated, I do fatigue easier than my well friends. Running marathons probably isn’t in the cards for me, but I can take a fun Saturday painting with my boyfriend. It’s all about reshaping your life to focus on your capabilities versus be continually disappointed about what isn’t possible. I have a wonderful life and know that medical advances are always on the horizon. It’s always scary to talk about my health issues because I can easily pass for well. If I don’t speak up, who will?

Make no mistake… I’m not brave. I’m living!

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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So you or your loved one have been diagnosed with adrenal insufficiency?

I guess I am correct or you wouldn’t be here, feeling the way you are, tapping away at Google and desperately trying to make sense of it all.

This was me two years ago, and I wish I could have read this then.

Are you feeling like your world is collapsing around you? You can’t breathe or sleep for worrying and have no idea what the future holds. The whole world seems oblivious to you and your new diagnosis and to be truthful, you have never heard of it, either.

Please stop! Take a breath, and let’s go through this together. Yes, this is a life-threatening disorder, but it is all going to be OK. I write to you as a mom, so the subject here is the most important thing in my life: my daughter Molly. I want you to know from the beginning, you are not alone.

What is adrenal insufficiency?

It means that the body does not produce enough of the stress hormone called cortisol. It is a steroid and one of the hormones the body needs daily to survive. You cannot live without it.

We as human beings all have the fight-or-flight mechanism inside us (a rush of cortisol and adrenaline) which prepares us to fight or flee. People with adrenal insufficiency do not have this cortisol rush, so if they are in a car accident (or any type of severe trauma) they may have an adrenal crisis and need an emergency glucocorticoid injection.

Even if you read no more of this, just always be your own advocate.

There are different types of adrenal insufficiency, primary and secondary. My daughter’s condition causes secondary adrenal insufficiency. This means that her adrenal glands do work, but are not told to release cortisol by the pituitary gland her brain.

Primary adrenal insufficiency (also called Addison’s disease) is different. This happens when the adrenal glands do not work. Each have different causes, but both use steroid replacement medication.

To you and I, the doses, along with the chopping up of small tablets four times a day in order for your child to survive, may seem quite unscientific for such a serious condition. You would be right to assume this. You have to be aware that medical science does not seem to have progressed in this area in years.

Why do I spend my life raising awareness and support? Because Molly is ill.

Fourteen years without diagnosis has made her weak. Her body could not cope any longer. Had she been diagnosed as a baby she could be relatively healthy now. She could have gone through school, had her prom, had a good education, and had many friends. She could be at college now, working toward her future.

She uses a wheelchair and her chest is scarred from all the lung infections. She cries every night in pain. I have seen her go from a tiny little girl to this 17-year-old who cannot even walk, let alone go to school or have any social life.

People say to me “Why do you focus on Molly’s adrenal insufficiency and not all the other problems she faces?” Molly’s condition also causes no thyroid function, no growth hormone production, and she now has severe myalgic encephalomyelitis. I concentrate on this one problem because adrenal insufficiency is the only thing I fear could take her away from me. And I’m scared.

Now please don’t despair, we all now know the risks. You cannot dress this up or play it down. It is serious.

For the other side of this, what I said about not feeling alone — the adrenal insufficiency patient, family and friend community is huge!

I felt so alone before Molly was diagnosed. I had no diagnosis in common with anyone. That’s changed now. I have so many friends now all over the world, we share good times and bad, and I class them as family. You will find that every parent is an expert.

Molly often says, “Oh god Mom, are you discussing me again on the internet?” I always laugh and say “Yes! Yes I am!”

I thought I had found all the friends I needed in my life, but I have so many more now! And I know they will be lifelong friends. Because we are all in the same boat, we all love someone with the same thing, we all want them to have the best care and to be the safest they can be.

I  was utterly devastated by the truth that my precious little girl has been diagnosed with a lifelong and life-threatening condition I did not understand. I felt absolutely shattered.

Two years later, I finally realized that while this is true, I cannot live in fear of this. I cannot wrap her up in cotton wool; her risk is more than anyone else’s, yes, but we all take risks every day.

Nothing has changed; she is still the same person she always was, but with an extra sprinkle of gold dust which we need to keep an eye on.

Follow this journey on Rachel and Molly’s Facebook page.

The Mighty is asking the following: Write the article you wish you’d found the first time you Googled your or a loved one’s diagnosis. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

I think every patient with a chronic illness knows Christine Miserandino’s “spoon theory.” People with chronic illness use spoons to describe how much energy we have. She was able to put into words what so many of us experience. But what happens when we run out of “spoons”? The experience varies for each of us.

My alarm typically goes off at 8 a.m., and I can usually drag myself up. Today I cannot. I can barely get the message from my brain to my arm to my hand. I turn off the alarm and go back to sleep. Ten hours was not enough. Three hours later, I wake again, groggy, and I test my brain first. It is somewhat functioning. Through the fog, it knows I have a doctor’s appointment at 1, and I need to be out of bed soon if I am to make it. It also knows I need steroids, soon, although it cannot figure out why there are not any next to my bed. Why? I need to fix that, but I cannot comprehend such complicated logic right now.

My brain tells my legs to move. Nope. Not happening. It spends the next half-hour trying, and failing, to convince my legs they are needed in this process. My bladder is screaming now that, after over 13 hours in bed, it is full. It takes another 20 or 30 minutes before enough adrenaline kicks in to power my body out of bed. I finally manage to get up, dizzy, and grasp my nightstand until the wave passes. I stumble to the bathroom, then go directly to the kitchen and take my morning handful of medications, including steroids. I manage to pour myself a cup of coffee, stagger to the couch and lie down for half an hour to give the steroids a chance to kick in. I realize I am not going to make it to the doctor today, because, well, I am too sick to go. Once the steroids kick in enough for me to form coherent sentences, I cancel my afternoon.

I am freezing. I have a migraine now. I have turned up the heat and the fireplace, and I am bundled under three blankets. The television is on reruns of one of my favorite old shows for comfort. I fall asleep, but by 2 p.m., I manage to get up and brush my teeth, eat a few crackers and open a Coke. My brain feels like the fog is lifting. However, I speak with my husband on the phone, and he says I am still slurring my words. I lie back down and doze off. He wakes me when he gets home, makes sure I am still alive and covers the basic questions: who is the president, what is your middle name, what is our daughters’ teacher’s name? I pass, so no emergency. (This is painfully routine after so many years.)

By 7 p.m., I am slowly coming back to life. However, I am sore from head to toe. I am groggy. I feel like I have been in a losing battle with an 18-wheeler, but I am able to think fairly clearly again, eat dinner and move around the house a bit when I want to. I no longer have to debate the merits of making it to the bathroom versus cleaning up the mess if I don’t. Small victories. By 9, I have enough energy to check out the Kindle deals of the day. Yay!

I have had the adrenal insufficiency portion of my diagnosis for over five years. In theory, I should be able to prevent most situations like this; however, days like today show how difficult this is to manage. No medication, no human, can replace the natural body’s function. My cortisol was too low, and I was experiencing the first tier of symptoms.

In many cases, Addisonian crisis is caused by an extreme situation, such as injury or illness. However, prolonged, “lower-level” stressors can also cause difficulties, sneaking up on you like the stalkers they are. According to Mayo Clinic, symptoms of a crisis can include but may not be limited to:

  • severe vomiting and diarrhea
  • pain in the lower back or legs
  • low blood pressure
  • pain in abdomen
  • loss of consciousness

I have experienced this before, and I know when it is time for me to take an injection (followed by a trip to the ER) versus when to just up my oral dose and ride it out. I knew I had been “overdoing” it for a week prior to this, and I have an appointment with my endocrinologist in a few days to discuss how I can avoid this in the future. It will probably be several more days before I feel decent, and a week before I recover from it. I think the worst part is that brain fog is generally one of the first symptoms, and that makes it more difficult to manage.

How does running out of spoons affect you?

Editor’s note: This is based on one person’s experiences and should not be taken as medical advice. Consult a doctor or medical professional for any questions or concerns you have.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

Growing up, I had only ever seen people skiing on TV, during the Winter Olympics and while watching things like James Bond movies. I always hoped to try the sport out myself, and when I heard about a school ski trip (at 16 years of age) to Mt Ruapehu, in the North Island in New Zealand, I jumped at the chance. The trip was not cheap, and I had to pay for travel, accommodation and hire equipment myself. My parents did not have the money.

I worked at a supermarket in Auckland and saved every penny to attend the trip. It turned out to be a group of 20 students who happened to be rich and snobby and who were all well experienced in skiing. Looking back at the experience, I now realize just how unprofessional the three teachers were and that they pretty much were on vacation themselves and were not interested one iota in keeping an eye on any of the students. We arrived at Mount Ruapehu quite late in the day. In fact, there had been a huge snow drift, meaning we were stuck at the bottom of the mountain with all our luggage to carry up. The lifts had closed for the day and we had to literally climb a snowy mountain with our gear to reach our log cabin.

The teachers went ahead and the students followed. I found the journey difficult. Walking through knee-deep snow as the sun went down and dragging my luggage was a hard task. The cold air began to affect my lungs, and my asthma got out of control. I had to stop to find my inhaler. No one stopped to wait. Everyone simply carried on, and I found myself halfway up a mountain with asthma and not one person in sight. It was evening on a dark, wintery night, and all I could see was a black sky and white snow. I did not know where to go but simply followed the footprints in front of me. The experience was quite distressing, and I remember crying to myself and feeling scared and exhausted.

Eventually after a few hours, I arrived at the log cabin. Everyone else had settled in and chosen their beds, the dinner was nearly cooked and I was just arriving. No one wanted to talk to me. I was certainly the odd one out, with no experience and pretty much a loner by myself for the whole week. However, I decided that I would not let this upset me, and the next day I went out with my skis and taught myself to ski. I started off on a small slope and then moved up the mountain to a bigger slope and so on. Eventually I was at the top of the slope skiing as well as the other students in my group, and they were just staring at me in shock. I had a bittersweet skiing holiday where I enjoyed myself with my own company. Sadly, the holiday came to an abrupt end when one of the students in the group had an accident that left him paralyzed. I have never been skiing since and don’t think I’d ever be well enough to do it again, but I did get to experience the sport, and despite the social nonsense, I enjoyed the thrill of skiing fast down the mountain.

I think one day I’d like to take my daughter to the snow, and if I’m well enough, we could get some tire inner tubes and ride down the mountain together. That would be so cool! It is going to be a some time before I get well, but still I can have goals, dreams and plans for the future.

Although my experience at 16 was not the best, I did learn a few lessons at a young age. I learned that in order to do something difficult, something that is incredibly hard such as climbing that mountain and walking through the unknown, I need to be strong. I need to depend on myself because the harsh reality is that in today’s world, I believe many people only think of themselves and focus on what they can get out of life. I recognize that there are genuine people out in the world who do care, and I do have some supportive friends in my life (especially online, as that is where I do most of my socializing as an unwell person). However, the truth is if I want to make something of my life, to be the pro blogger I want to be, to be the mother I want to be, the wife I want to be and live the dreams I want to live, I need to take those steps toward these dreams on my own. I am fortunate to have my husband by my side pushing me up and sometimes dragging me up the mountain we are climbing together. 

At times it is hard trying to accomplish what seems impossible, especially in relation to my health goals and dreams and all the steps I need to make to get there. I feel the National Health Service (NHS) is letting me down and that they really do not care. I have my relatives who love me and friends who support me from a distance. I even have some blogging friends who support me in the blogging community, and for that I am truly grateful, but at the same time if I don’t work each day to fight my cause and try to be heard, to raise awareness for my illness in the hope of one day getting better, I will not get anywhere because no one is going to do it for me. 

I have three main health goals for 2016, and they all revolve around my illness, adrenal insufficiency. Adrenal insufficiency is a condition where the body fails to produce cortisol, the “stress hormone.” This can be life-threatening and causes symptoms such as muscle weakness, nausea, low blood pressure and headaches.

My first goal for 2016 is to lose more weight, to strengthen my muscles and use my wheelchair less often. When I first went on steroids for adrenal insufficiency, I gained weight. I’ve been working towards a healthy BMI and lost 30 pounds so far. Losing weight will ultimately reduce my daily steroid dosage, which will be better for my body.

My second goal is to find a new endocrinologist who will work with me to use the adrenal pump. I’m currently on hydrocortisone tablets, which do not keep my health stable. I would like the opportunity to have the best medical option available. Finding the right endocrinologist to wrk with will be a major stepping stone to improving my health.

My third goal, which is related to goal two, is to raise the funds to purchase my own adrenal pump and cover the cost of consumables, medication and private appointments. I don’t have much choice as my NHS endocrinologist is not familiar with the adrenal pump and unwilling to consider this as an option for me.

I don’t mean to offend, but the truth is, I am on my own. No one is going to do the work that needs to be done in order for me to reach my goals. I must fight my own battle, and when it feels like I’m doing it on my own, I must not give up. When I do get to the top of this mountain, I will ride back down and enjoy the scenery and the view. Those who have supported me will be remembered, and those who simply couldn’t care less, well, I’ll ride straight past them and onto better and greater things.

Angela in the hospital holding a stuffed panda
Angela in the hospital holding a stuffed panda

Follow this journey on Days In Bed.

My mom and I have been in your shoes. I remember the doctor coming in and hurriedly explaining adrenal insufficiency to us. No cure. Diseased for life. Steroid dependent. Be mindful of stress. And yet, I can live a “normal” life?

Over the years, we slowly realized we weren’t as isolated as we thought. We worked together and learned together. As someone who has lived with this diagnosis for more than a decade, I would like to share some insights with you.

1. Yes, cortisol controls a lot.

The production of cortisol within the adrenal glands influences so many things: heart rate, blood pressure, blood sugar. The ability to fall asleep. The ability to wake up. Balance, appetite, mood, weight, memory, emotions, electrolyte balance. And this seemingly overwhelming list isn’t even fully inclusive!

Doctors are still discovering more things that cortisol influences. But the good news is that as you work out a treatment plan tailored to your child, some of these seemingly unrelated symptoms should resolve themselves.

My mom and I had no idea that my frequent hospitalizations due to severe dehydration were a symptom of undiagnosed adrenal insufficiency.
My mom and I had no idea that my frequent hospitalizations due to severe dehydration were a symptom of undiagnosed adrenal insufficiency.

2. Yes, this disease is worsened by stress.

Please don’t see this as an opportunity to try to isolate your child from any situation that might be considered stressful. Instead, work with them to teach them how to identify potentially stressful situations and practice steps to take to help reduce the overall stress load. Also, please keep in mind that not all stress is bad. Extremely happy and joyful moments can still be considered stress on the body, but it’s good stress.

​Holding a baby tiger in Thailand is a good type of stress.
​Holding a baby tiger in Thailand is a good type of stress.

3. Yes, you will occasionally mess up.

And that will probably cause your child pain. Please forgive yourself. We forgive you. We know you’re trying your hardest, and we know this isn’t an easy disease to manage. Allow yourself grace. Use the lesson you learned today to make tomorrow better.

Amber Nicole.4 This is a note showing I had to use my emergency injection recently. A few years ago, a similar episode would have hospitalized me.
This is a note showing I had to use my emergency injection recently. A few years ago, a similar episode would have hospitalized me.

Every day, you will continue to discover new things that will help you and your child manage this disease better. Welcome them as learning opportunities. And as your child continues to grow, know that your role in helping manage this disease will continue to change and evolve. Over the years, my mom went from being the sole person managing my disease to allowing me to have full responsibility.

That being said, I know she is never more than a phone call away if I need her.

A photo of my mom and me.
A photo of my mom and me.

Follow this journey on Clearly Alive.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

“You don’t look autistic.” This is a common statement I hear if I ever tell someone my diagnosis. I use a service dog for my autism and severe migraines, and I am currently training his successor. So people are always curious as to why someone who can walk, speak and seems perfectly “fine,” uses a service dog. Most people assume I am training them for someone else in more “need.” While it is no one’s business, it is a common question.

Service dogs are trained to mitigate multiple different disabilities. Many are visible and many are invisible. Having one or the other or even both doesn’t make us any less disabled. Just because you can’t see my autism, doesn’t make me not disabled. My neurological conditions don’t have a “look.” Autism doesn’t have a specific “look.” It doesn’t usually affect an individual’s physical features. Autism can have physical manifestations, such as motor-skill delays and balance issues. I personally have balance and gastric issues connected to my autism. But even those aren’t “visible” to the untrained individual.

Autism is a part of everything I do. It’s a part of me. I can’t turn it on and off at will. Autism partially makes me who I am, but that doesn’t mean I should be singled out or treated differently. And I honestly prefer to be treated as everyone else. Is this too much to ask? Apparently in the United States, it is quite a bit to ask for. There are autism stigmas everywhere. I believe the new “Sesame Street” character, Julia, even empowers the stereotypes and stigma about how autistics should act. We are all individuals and cannot be stuffed into a tiny box of absolutes. We should be treated as individuals and respected as such.

The stigmas hurt us more than they help us. Every fellow autistic I know and have come into contact with wants to be an individual. They also have strong voices of their own, and they want to be heard. Does this mean every autistic is like this? No, but the adult ones I have met are.

So, the moral of this post is basically to think before responding to someone’s diagnosis. Saying something like, “You don’t look autistic,” is rude and assuming. Don’t put us in a small box. It isn’t easy for many of us to open up to people.

Please don’t make our lives harder with assumptions. Let us spread our wings and be ourselves.

Liz Bernstein.1

Follow this journey on Liz’s Life, Aspergers, Gluten Free and Raw Fed Aussies.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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