ADDISON’S DISEASE
In a nutshell, I don’t have adrenal glands. Adrenal glands sit on top of the kidneys and are responsible for releasing vital hormones that impact our development and growth.
Cortisol
The adrenal glands produce a steroid hormone called Cortisol. This hormone affects our ability to deal with stress as well as helping regulate metabolism.
Cushing’s Disease
In 1995, my last year of highschool, I weighed 160lbs and was 5’7″. I began gaining weight rapidly and started showing signs of a mood disorder. I stopped menstruating, my skin changed to a grayish colour, and my bones became weak. My blood pressure skyrocketed and I would bruise easily.
By 1998, my last year of university, I weighed 310lbs. I barely finished my last exam. I was lucky to find a doctor in Montreal, Quebec who dealt with rare endocrine disorders. I flew out to participate in his sixty day study. He diagnosed me with Cushing’s Disease. He told me I was producing an extraordinary amount of cortisol but couldn’t figure out how. He sent me home on medication.
Four years later, I found an endocrinologist in Toronto who specialized in Cushing’s Disease. He literally took one look at me and said, “We’re taking your adrenal glands out!” During some pre-op testing, we found out that I had two very small tumours on my pituitary gland. Basically, the pituitary is responsible for telling the adrenals to make cortisol. These tumours interfered with the messaging somehow and were the cause of my Cushing’s Disease.
The surgery was very risky and my heart stopped twice. My kidneys failed post-op and I had a tough time recovering. But with replacement steroid medication, I started to lose the weight immediately and gained back muscle strength. My body slowly started to repair itself.
Life with Addison’s Disease
Addison’s is a very rare disease. It occurs in 1 in every 100,000 people. To put that into perspective, there are only 300 known cases in Canada. So no one really knows much about this disease. I’ve had to educate myself well on the subject and find endocrinologists who are also willing to educate themselves on my particular case.
I have to admit that I struggled with this disease for ten years. My main issue was that my medication never truly absorbed. It wasn’t until I read somewhere that gluten can affect how you absorb medication. For kicks, I tried going gluten free a little over two years ago.
Within fourteen days, I saw improvement. I had more energy, my blood pressure improved, and everything suddenly seemed more manageable.
I also switched pharmacies. I’ve always had to get to know my pharmacists because my medication isn’t generally in stock. When I moved to a new neighbourhood, I chose a smaller, independent pharmacy. When I went to go pick up my prescription for the first time, he told me to store my Florinef (a steroid) in the fridge. I’d been taking this drug for seven years and no one had ever told me to store it in the fridge so I asked him what would happen if I didn’t. He said that the medication breaks down and basically goes ‘bad.’
Now, I have good days and bad. Some days, I seem perfectly normal. Some days, I’m just a little tired. Some days, I’m unconscious in a hospital bed.
Pregnancy with Addison’s Disease
I truly believe that it was a combination of the gluten free diet and the, now effective, medication that helped me conceive. I got pregnant three months after making these changes.
When I ask other women about their pregnancy, mine seemed pretty normal in comparison. I was extremely nauseous for my entire first trimester. I had trouble keeping anything down, including my medications, so there were a few visits to the hospital to get them in to me intravenously. By my second trimester, I started to feel pretty darn fantastic and could finally enjoy the life growing inside of me.
At about 26 weeks, I caught a horrible stomach flu. I became severely dehydrated and went to the emergency department for a dose of my steroids. But I started contracting and the doctors kept me overnight. They pumped me full of fluids and electrolytes and hooked my belly up to the monitor. It was a very scary experience but I left the next day feeling normal again.
My third trimester was the healthiest point in my life. I was full of energy and couldn’t sit still. The nesting bug hit and I was ready for it! I found out after I gave birth that the placenta produces cortisol so my body was producing the hormone I’d been missing for eight years. No wonder I felt so good!
My delivery was also relatively normal. Because I don’t have adrenaline, I feel pain differently from a healthy person. I usually need more freezing at the dentist and stubbing my toe can feel like someone dropped a bolder on it. So I knew that I would have trouble with the pain. When the contractions hit hard, I began losing consciousness. I faded in and out a few time. Luckily, my doctor had ordered an early epidural and I was pain free in no time. I received several doses of my medication intravenously and felt energized when it came time to push. Post delivery I was exhausted but from what I understand that’s totally normal.
Motherhood with Addison’s Disease
When my son was an infant, sleep deprivation was my biggest challenge. I took extra medication on my son’s fussiest days. I tried to nap during the day so I could make it through a sleepless night. As any new parent can tell you, it’s difficult.
As a mother of a toddler, I find it hard to keep up with him. Ironically, the boy has an unusual amount of energy. I wish I was exaggerating. So I, a fatigued and sometimes lethargic person, was paired up with the boy, an enthusiastic running machine. I look forward to my breaks and try to rest EVERY chance I get.
For more information about Addison’s Disease, visit these links
Famous Addisonians:
United States President John F. Kennedy, Popular singer Helen Reddy, Scientist Eugene Merle Shoemaker, Blessed Elizabeth of the Trinity, American artist Ferdinand Louis Schlemmer
Famous People Who May Have Been Addisonian:
Eunice Kennedy Shriver, Charles Dickens, Jane Austen, Osama bin Laden
Not-So-Famous-But-Equally-Notable Addisonians:
Me
If you have Addison’s Disease and would like to connect with another Addisonian, feel free to send me a message here
0 comments:
Post a Comment