Sick | Life with a Chronic Illness
I wasn't going to write this post. I don't usually disclose details about my health publicly other than sharing brief updates with close friends and doing some advocacy in my own time. While many know that I have a chronic illness and sometimes have bad days, the specifics of what those days entail are only known by those closest to me. I am writing this because so many asked me to share details so that they could better understand what my life is like.
I do want to be clear about something. I am not writing this to get sympathy or imply that my situation is better or worse than anyone else's. We are all dealt our cards in life and this is the hand I have been given. I try to make the best of it and I am grateful for every day that I wake up and can enjoy my life.
The rest of this post will be long and full of a lot of medical details. Please feel free to skip if it's not your cup of tea. You won't hurt my feelings, but if you are interested in what life with a chronic illness is like, continue reading.
Seven years ago, I was diagnosed with Addison's disease or primary adrenal insufficiency. I had been sick for several years prior and was making a steady nosedive in the last nine months leading up to this particular day.
In the early morning hours of December 10th, 2010, my (then) husband found me collapsed on my living room floor when he got up to go to work. I was not responsive, so he called for an ambulance. When the paramedics arrived, they took my vitals and determined that I was very close to death in what they originally thought was a diabetic shock. My blood pressure was 60/40, core body temp was just at 86°F and my blood glucose was at 34. They gave me a dextrose injection to bring my blood sugar level up, started giving me intravenous fluids, and rushed me to the local emergency room.
I don't remember anything from about 10 p.m. the night before until twelve hours after being admitted to the hospital that morning and waking up from the coma. I didn't even remember that I was married when I was asked who the guy beside me was. All the details above from those first hours were relayed to me by my ex-husband and medical records.
WHAT ADRENAL INSUFFICIENCY IS
The adrenal glands are two tiny organs that look a lot like mini fortune cookies and fold over the top of each kidney. They are comprised of two parts: the cortex, or the outer layer, and the medulla, the inner layer. These glands produce several hormones that are essential to life: cortisol, aldosterone, and adrenaline.
The adrenal cortex produces cortisol and aldosterone. Cortisol is a steroid hormone that regulates metabolism, acts as an anti-inflammatory, influences memory formation, controls electrolyte balance, and influences blood pressure and nearly every cell in the body has cortisol receptors, so it plays a major part in every bodily function in humans. Aldosterone is another steroid hormone that mainly controls the body's natural sodium balance, prompting the kidneys and colon to reabsorb sodium back into the bloodstream and therefore keeping the body from dehydrating.
Adrenaline is produced in the adrenal medulla and essentially controls the body's fight or flight response in times of stress.
Primary adrenal insufficiency is when your adrenal glands fail or die (or in some cases, are removed surgically) and no longer produce these vital hormones. The human body cannot survive without these.
I have complete adrenal failure, both the cortex and medulla. My doctors believe my adrenal glands have always been faulty, but probably failed about two years prior to my coma. They also attribute my failure to autoimmune disorder because I have other conditions that are also caused by this.
THE SYMPTOMS OF ADRENAL FAILURE
When the emergency room doctor came in with my final lab results confirming the adrenal failure, I immediately pulled my phone out and researched the disease to see if I could connect any of the symptoms I had been experiencing to this condition. The list was long and I checked off every single one. As you can see from these symptoms, adrenal insufficiency affects every system of the body from the heart and lungs to kidney function and even the skin.
chronic fatigue and severe lethargy (I would often sleep twenty hours a day.)
chronic inflammation (for me, this was in my lungs. I always felt like I couldn't breathe.)
muscle weakness (I was unable to hold a pencil and write because of this weakness.)
loss of appetite and unexplained weight loss
low blood pressure
blotchy, dark tanning or freckling of the skin (I looked like Snookie in the middle of winter)
dangerously low blood sugar
nausea, vomiting, and diarrhea
inability to cope with stress
moodiness, irritability, anxiety, and depression
intolerance to heat or cold
craving salty foods (I was eating a Costco-sized jar of green olives a day)
headaches
irregular menstrual cycles
dehydration
disorientation, psychosis, slurred speech, inability to form simple sentences
dizziness
muscle aches
joint pain
fever
convulsions and/or loss of consciousness
sudden, severe pain in the legs, abdomen or lower back
hyponatremia (low sodium levels)
hyperkalemia (high potassium levels)
abnormalities in blood count (my white blood cells were extremely low - causing a leukemia scare)
HOW I WAS DIAGNOSED
Unfortunately, the symptoms of adrenal insufficiency mimic so many other diseases, that diagnosing it is very difficult and takes a long time. It is also believed that no two cases of AI are exactly alike, as many patients experience some of the symptoms but not others and this differs with everyone who has it.
In the two years leading up to my diagnosis, I couldn't stand upright for more than thirty seconds without blacking out because my blood pressure was dropping so low. I had no appetite and could only sip broth as everything else would make me sick. I looked like I spent an hour in a tanning booth every day. I felt like I had the flu all the time because of the severe body aches and inflammation.
I met with several specialists over that period of time, had so many tests run, and heard everything from possible lupus to "worst-case scenario," leukemia. Because there is no definitive test for adrenal problems, and many doctors aren't familiar with adrenal function and what complete failure looks like, it's hard to get the tests needed to confirm the diagnosis. It took me having to go into a coma and the doctor at the emergency room (Dr. House, as I lovingly call him) not going home for three days until he figured out what was wrong with me before I got some answers.
WHAT A DAY WITH ADRENAL INSUFFICIENCY LOOKS LIKE
I consider myself blessed because not many people who get to the point of going into a coma from adrenal failure survive it. When I first heard the diagnosis, I was afraid that I would feel like I had for the last two years, for the rest of my life, but my doctor was really encouraging, breaking the disease down so I could understand it, and immediately recommended an online support group with over 8,000 members worldwide who have some form of adrenal insufficiency.
Day-to-day life can be pretty tricky at first, but once you learn to manage medications and how the adrenal system is supposed to function, it becomes a lot easier. In order to supplement the hormones that my body is no longer producing, I have to take two different steroids. One acts as the cortisol and the other as the aldosterone. Without these medications, I would have no fight or flight response, meaning, when I am faced with a stressor (something as simple as a verbal argument to something severe like being in a car accident or losing a loved one) my body would begin shutting down. I'd go into organ failure, slip into a coma and would die.
Because the human body produces these steroids at varying levels throughout the day and spikes production of them during stressful times and illnesses like the flu, taking medication needs to follow this pattern. I can't just take a pill in the morning and forget about it. I have to take different doses throughout the day to mimic the natural circadian rhythm production of hormones and increase when I'm sick or facing more stress than usual. I also have an emergency steroid injection that I can give myself when I begin to go into a crisis situation.
There is no cure for adrenal insufficiency and the medications have quite a few side effects that are sometimes worse than the disease itself. I still deal with chronic pain every day. Some days, it's so bad that I struggle to get out of bed. I'm always tired but the steroids cause insomnia, making restful sleep nearly impossible. I have no immune system, or more specifically, my immune system attacks normal functions in my body, so I have to be extremely careful to avoid illness at all costs. I currently take twelve pills a day and lots of supplements to stay alive. Because my condition is autoimmune, I will occasionally go through periods where I'll reject my medications and have to go into the hospital for infusions to get my levels back up to where they need to be.
One of the hardest things about having this condition (other than feeling like crap) is the stigma that comes with having a chronic illness. I don't look sick, so many people don't believe I am sick. I don't have a disability that is visible to the naked eye and I don't have something like cancer that I can point out on a scan of my body. I think anyone who deals with a chronic illness can attest to this. It's hard enough to feel bad all the time but even more difficult to have to convince others how sick you are. This is particularly true when someone with an invisible chronic condition is applying for disability. Illness discrimination is a real thing in that arena.
This is one issue that I will always advocate for. I want to encourage people to understand that chronic illness comes in many forms, mental and physical, many of which can be seen, but many cannot. The visibility of an illness does not determine the validity of it. We all have challenges we are working to overcome. We all have a story. This is mine.
If you stuck around to the end of this post, thank you so much for taking the time to read. It means a lot that so many of you asked me to share more about my illness and what I deal with every day. <3
If you have any questions about adrenal insufficiency or my experience with chronic illness, please leave them below and I'll try to answer them the best I can. To learn more about Addison's disease and adrenal insufficiency, visit the National Adrenal Diseases Foundation.
