Living with Addison's disease

Have you ever loved someone so much, that just looking at them hurts your heart, for fear that you will one day lose them? I live like this every day with my husband.

When I first met Michael, I wondered why he could not sit still. Some people mistake him as uninterested, fidgety or weird. This of course, is the furthest thing from the truth. He is engaged, focused and wonderful. He also has Addison's disease.

Before meeting Michael, I had never heard of this disease. It's quite rare; 1 in 100,000 people have it, and yet I have heard of 5 people in our family and circle of friends who have also both lived and died of this disease. President John F. Kennedy was diagnosed with Addison's after his election and was always portrayed as healthy and vibrant, yet it was discovered that he actually suffered behind the scenes with the many cocktails of pills that need to be taken.

When Michael was around 18 years old, he had a week long stint of flu-like symptoms at the end of the summer. By early October it hit him again and he saw various Doctors and visited hospitals and as his skin grew darker in pigmentation, he was diagnosed with Addison's disease.

Dr. Thomas Addison founded this disease which is caused by partial or complete failure of the adrenal glands. A more descriptive definition:

Cortisol is normally produced by the adrenal glands, just above the kidneys. It belongs to a class of hormones called glucocorticoids, which affect almost every organ and tissue in the body. Scientists think that cortisol has possibly hundreds of effects in the body.

Cortisol's most important job is to help the body respond to stress. Among its other vital tasks, cortisol helps maintain blood pressure and cardiovascular function, slow the immune system's inflammatory response, balance the effect of insulin in breaking down sugar for energy and regulate the metabolism of proteins, carbohydrates and fats. Because cortisol is so vital to health, the amount of cortisol produced by the adrenals is precisely balanced.

What are the symptoms of adrenal insufficiency?

The symptoms of adrenal insufficiency usually begin gradually. The most common symptoms are

• chronic, worsening fatigue
• muscle weakness
• loss of appetite
• weight loss

Other symptoms can include:

• nausea
• vomiting
• diarrhea
• low blood pressure that falls further when standing, causing dizziness or fainting
• irritability and depression
• a craving for salty foods due to salt loss
• hypoglycemia, or low blood glucose
• headache
• sweating
• in women, irregular or absent menstrual periods

Hyperpigmentation, or darkening of the skin, can occur in Addison’s disease but not in secondary adrenal insufficiency. This darkening is most visible on scars; skin folds; pressure points such as the elbows, knees, knuckles, and toes; lips; and mucous membranes such as the lining of the cheek.

Because the symptoms progress slowly, they are often ignored until a stressful event like an illness or accident causes them to worsen. Sudden, severe worsening of symptoms is called an Addisonian crisis, or acute adrenal insufficiency. In most cases, symptoms of adrenal insufficiency become serious enough that people seek medical treatment before a crisis occurs. However, sometimes symptoms first appear during an Addisonian crisis.

Symptoms of an Addisonian or “adrenal” crisis include:

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

Men are usually notorious for taking their health lightly. I spoke to my mother in law in great detail about Michael's condition as I wanted to get a better understanding as to how I can help him. For starters, since he drives long distances, I insisted he get a medic alert bracelet. This could be crucial if he were to ever get in an accident and his body went into shock. He would need I.V. instantly as his blood pressure could drop. Addison's patients tend to be overweight from the heavy and lengthy doses of steroids they must take and Michael's endocronologist was pleased to see he is in good shape and has the energy to work out.

I can tell when Michael isn't feeling well. He gets out of breath, rocks back and forth and doesn't eat. He craves salty foods but will pound back the gatorade to rehydrate himself. Often we'll take midnight runs to the local Sobey's to get him Gatorade which gives him much needed electrolytes. His muscles start cramping and he needs to up his intake of calcium since the prednisone has caused muscle and bone loss for the past twenty years.

Once, he had a terribly bad toothache . We waited for hours in two Waterloo hospitals for someone to see him. I finally insisted that someone needed to see him instantly as his steroids normally mask pain. He feels pain ten times less than us because of his medicine so when he's in an immense amount of pain, it would be unbearable for the average person. His condition must be mentioned upon arrival in the hospital and usually gets him treated quite quickly. Once, he was prying apart frozen sausages and put a knife through his hand. When he showed me his hand, he was eerily calm and I could tell he wasn't even in pain. We went to the hospital where he was stitched up and didn't even flinch.

He had an Addisonian crisis when we were dating and I've never been so scared. They wouldn't let me stay with him in the emergency room and he was there for a few days on I.V. I've never been so sad or petrified. Stress does not help Michael's condition and I've noticed in the past few years, if I come home with a stressful situation, his condition and breathing worsen.

I've learned to keep stressful situations to myself, as my husband only worries and that does not help his breathing. Don't get me wrong. Addison's patients can live a long and healthy life if they take care of themselves, rest when necessary and take the proper medication.

It can also be fatal and it's important for people to know the surrounding information.

Oddly enough, when I looked up Addison's disease on the internet, I discovered the Addison Society is located in Brantford, Ontario, where we have purchased our first home and currently reside. I plan to find out what this organization is all about and find a way to help those living with this disease.

I love you Michael.