mom reading to her daughter in bed

If I Was Well for Just One Week

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If I was well for just one week, I would get up each morning and tidy around the house. I would take a quick shower and get changed into some nice clothes.

If I was well for just one week, I would make breakfast for the family. Get my daughter ready for school, brush her hair and put them in pig tales.

If I was well for just one week, I would walk my child to school each day and collect her at the door when the school day ended.

If I was well for just one week, I would gather all the junk in my home and take it to the secondhand market. If I was well for just one week, I would go swimming and walk the dogs for exercise.

If I was well for just one week, I would go on a trip to the beach and spend the day in the sand walking the promenade, taking my child on rides and visiting the shops.

If I was well for just one week, I would go on an evening date with my husband and have fun — the kind of dates we had before I was diagnosed with adrenal insufficiency.

If I was well for just one week, I would cook my favorite meals in the evening, make gorgeous salads and even do the dishes after tea.

If I was well for a week, I would have the strength to give my daughter a shower, do story time and hang out for an hour talking about anything and everything.

If I was well for a week, I would not have to go to appointments, have blood tests and use all my energy visiting specialists.

If I were well for a week, I would feel more in control. I would feel more understood and more able.

But I’m not well, not even for one week and the simple daily tasks exhaust me. Many I cannot do. I have to pick and choose. I have to accept help. I can’t be the mother I want to be. I can’t shower, tidy, cook or clean without feeling wiped out for days. I can’t go out without being wiped out for weeks.

I am not well. I have adrenal insufficiency which brings with it chronic fatigue, and this is my life.

I’d love to feel well just for one week or even one day.

When someone sees me out and about I’ve often had many days resting beforehand and will have many days resting after. People will say, “It’s great to see you looking so well.” Sadly I am not well. I am not better just because I am trying to have a moment of normalcy. I am simply trying to life with a condition which for now will never go away.

Follow this journey on Days in Bed.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? Check out our Submit a Story page for more about our submission guidelines.

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3 Things I Learned After I Was Diagnosed With a Second Chronic Illness

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This past fall I felt sicker than I have ever been in my life. Fatigue covered my days like a heavy fog. Nausea haunted me, and I found myself vomiting a couple days a week for no good reason. I forced myself to go to class to see my therapy clients but otherwise spent the rest of my waking hours in bed.

It was such a confusing season, largely because fatigue is a big part of my autoimmune disease, ankylosing spondylitis (AS). I’m used to debilitating fatigue, but this was worse. Oddly, my joints weren’t hurting, and usually my fatigue corresponds with intense joint pain.

When I start to feel sick, my first thought is that I’m in a flare-up of my disease. It’s usually that simple. When something new hurts — like my eye — I figure AS can affect that, too. (Don’t worry, I see a doctor when odd pains crop up!)

When that’s not the cause, I start thinking I’ve caught an infection or a virus because being on multiple immunosuppressant drug therapies definitely make me very susceptible to infections. But that wasn’t it.

Katie Jo Ramsey, right, with her friend, Bess.
Katie Jo Ramsey, right, with her friend, Bess, who also writes for Anchor for the Soul.

Days of nausea and fatigue turned to weeks. And then weeks turned to months. After every doctor visit and new medical test, I had no answers. In those months I began to feel sad. Really sad. A heaviness veiled my normally happy disposition. As a counselor, I knew I was experiencing symptoms of depression. But being sick with no answers is inherently depressing, so I figured that was why.

My rheumatologist faithfully searched out the cause of my mystery illness and was determined to see me well. Both her instincts and mine told us this wasn’t AS and likely not rheumatologic. When the blood tests, CT scans and biopsies came back normal, she tested one more thing. “It’s a far-off chance that it’s this, and I’ve never seen it in my entire career, but let’s check it anyway,” she said.

The day she called with my test results I was fully expecting to hear the results were, again, normal. The undiagnosed but very sick know normal test results are often the worst news to receive. Abnormal or positive test results mean answers, mean help and mean life can get better than the hell you are living.

Almost no one understands why getting bad test results is such good news except the determined and courageous patients who haven’t given up on fighting for answers to the cause of their illnesses. But that day, I got the beginning of an answer.

My doctor informed me that during my cosyntropin stimulation test my adrenal glands produced virtually no cortisol, which meant I had adrenal insufficiency (AI) . The onslaught of Google research commenced after I learned all the things I had been experiencing, including depression, were symptoms.

I needed to start steroid therapy to replace the cortisol my body wasn’t able to make. Hydocortisone made my life immensely better in the span of about two weeks. But managing my new condition hasn’t been entirely stabilized, and we’re still determining the cause of my secondary adrenal insufficiency. Developing an additional condition has meant seeing more doctors (specifically, an endocrinologist), having even more regular blood work and sucking up the fact that I’m dependent on steroids daily to function. (Really, to live. Without steroids, adrenal insufficiency patients can go into life-threatening adrenal crisis.)

Developing and managing a second disease requires bravery. “About 25 percent of autoimmune patients have a tendency to develop additional autoimmune diseases,” according to Maedica. And that diagnosis will bring new challenges and opportunities to process, grieve and hope for the better life we all want. Six months after finding out about my new condition, this is what I’ve learned:

1. Listen to your body.

When we are attuned to our bodies, we often know when something is off physically. Trusting your internal sense that something is off can enable you to be persistent to get the care you need.

2. Value your health.

The fear of not getting answers and being judged as a complainer or drug-seeker can keep us from pursuing medical care. If you are experiencing new, unexplainable and frustrating symptoms, value yourself enough to do the frustrating and scary work of seeing your doctor.

3. Let yourself grieve.

Giving yourself the space to grieve your illnesses isn’t a pity party. Even though you’re used to being sick, it’s a blow to find out that one more thing is wrong with your body. Let yourself cry about it. Talk to a friend. Go back to see your counselor. (That’s what I did.)

Whether you have one diagnosis, two or five, I hope you’ll be brave and value yourself today.

Follow this journey on Anchor for the Soul.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

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To My Mother, Who Traveled Across the World to Help Me Battle My Illness

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Dearest Mom,

I know you despise it — leaving on a whim, leaving where you’re contented to go elsewhere. One of your favorite works of literature is “The Agony and the Ecstasy,” the story of Michelangelo’s life. I can’t count the number of times I’ve pleaded with you to travel to Rome to see St. Peter’s Basilica, or to Paris, to walk the streets where Hemingway once roamed. Your answer never fails to change: “No, I have no desire to see anywhere but here.” (“Here” is Sri Lanka, the beautiful, lush island my parents and sister returned to after almost 30 trying years in the States.)

Your anxiety tends to get the best of you, especially when you’re traveling alone. I understand.

“Which gate do I go to?”

“Who’s going to help me get there?”

“I only have six hours to get from one gate to the other!”

I know the 10,000 mile, 24-hour journey is not easy. So when I threw in the towel last December, after two years of draining, inexplicable fatigue, reaching the point where I could barely walk the dog around the block, I knew what I was asking of you when I asked you to come. I made that phone call, every bone in my body resisting. I had no choice but to finally ask for help.

That week, the plane ticket was booked (thank you, Dad). I know you had been wanting to come for a long time. The ask is difficult, because I know what you’re leaving behind  my older sister, who has a disability and lives with paranoid schizophrenia, and my father, who unfortunately has faced some health setbacks the past few years. I always thought I could handle my illness and its many complications with just my husband and I, but at that time every doctor’s visit felt like an axe chipping away at the core of my inner strength.

Ashanthi and her mother in the hospital.
Ashanthi and her mother at the NIH.

What I want to say is that you saved me, in every sense. You went from a sunny, humid 80 degrees to single-digit weather that bites and cuts through, regardless of how many winters you’ve experienced. And in it, you did the groceries and walked the dog. You kept me company. The almost two years I spent being unable to work or be around people on a daily basis was excruciating. You were someone to talk to while my husband and friends were working during the day and being busy. You were someone to sit with in the doctor’s waiting room, and a hand to hold after my appointments. And after our long, 10-day stay at the National Institutes of Health (NIH), you watched me break down in tears after the doctor confirmed my latest diagnosis, idiopathic secondary adrenal insufficiency. You didn’t shed a tear. You let me cry. You let me say my piece to him, when I was frustrated at the world for having a disease where the natural history is still unknown.

When the doctor left, you said, “I am so proud of you.

To say you are our family’s “rock” would be doing you an injustice. A rock is stiff and cold, jagged and without empathy. You are our family’s banyan tree in which we can find cool shade when life exhausts us. Your roots run deep into the Earth, so even the fiercest gusts of wind won’t shake you. The only time your branches came close to bending was when life took one of your own, your youngest flesh and blood, our littlest sister. But your roots dug a little deeper, and you continued on, for us.

For every obstacle in life, I remember your many more, and instead of an axe chipping away at you, it has somehow made you stronger. For every time I am thrust into the darkness of the unknown with my illness, I remember your early days of motherhood, before the Internet even existed. The days when you sat alone in a tiny apartment, in a new country, without family or friends to comfort you as you watched all three of your children fail to medically thrive. Yet, your hope and love carried us through. You waited years to finally return home, only to be uprooted once again to get on a plane, scurry through the hectic airport crowds, and meet me in the middle of a Midwest winter.

For every mile you’ve traveled to see me, thank you, a million times more.

To the mothers who refuse to give up for the sake of their children with disabilities and illness, thank you. To their sons and daughters, don’t be afraid to ask for help. It might be the best thing you’ll ever do for yourself.

The Mighty is asking the following: What’s one thing you want to make sure the special needs mom in your life knows? *If you are the special needs mom, challenge a loved one to respond to this! 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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When I Learned to be Kind to Myself With Adrenal Insufficiency

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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.

*Sign up for our Chronic Illness Newsletter*

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To the Person Who Just Googled 'Adrenal Insufficiency'

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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.

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When I Run Out of ‘Spoons,’ This Is What My Day Is Like

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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

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