April is Adrenal Disease Awareness Month.
As I said to Nicole Audrey Spector
In high school, I began to feel like I was nothing like myself. I had much less energy than usual. It seemed completely normal to believe it was stress-related. As college got closer, school got more intense, and there were the normal teenage things like dating and managing friendships.
As I entered college, other symptoms began to appear, including anxiety, nausea, dizziness, loss of appetite, and difficulty regulating body temperature. I was in my car with the windows down during a very cold winter. Stranger: My skin has taken on a slightly tan, jaundiced tint, especially around the joints.
I wondered if my life was going by so quickly that I couldn’t keep up, or if I was just stressed out.
I saw my primary care doctor who examined me and did blood tests. All seemed fine in my lab. And despite losing some weight, he looked fine. At least that’s what everyone said. The slightly darker, slightly yellow tint on my skin really complimented it. People would say, “You’re so tan.”
By the time I graduated from college and was preparing to go to graduate school in another state, my symptoms had become almost unbearable. I was so tired that just getting dressed in the morning felt like climbing a mountain. I couldn’t stand up without feeling dizzy. I suddenly had a fainting spell. I would walk across the room no problem and then collapse.
A primary care doctor examined me and suspected my problem was psychological. He sent me to a psychologist to hypnotize me. I’ve been there twice at most and left with no diagnosis or guidance, completely convinced that my physical symptoms were all in my head.
I visited the emergency room several times, complaining of constant vomiting, dizziness, and abdominal pain. They told me I was severely dehydrated and offered to give me IV fluids. The sap always made me feel better, but it didn’t last long.
I was hoping the cardiologist would give me an answer after running several tests. He wasn’t like that. A doctor prescribed me low blood pressure medication, which helped relieve some of the dizziness, but my other symptoms continued to worsen.
I started to believe that I was a lost cause.
Eventually, I became so sick that I had to take a semester off and return home. I was essentially bedridden and too weak to do much for myself.
In a way, my father was the one who saved my life. He heard a commercial on the radio where an endocrinologist talked about a rare autoimmune disease. It was as if a little bell was ringing in our universe. Ding, ding, ding! Could this be it?
My parents took me to an endocrinologist. Tests showed that I actually had Addison’s disease, an autoimmune disease. A serious condition I had for many years was Addison’s crisis. This occurs when the adrenal glands do not produce enough cortisol, the stress hormone we all need to survive.
The endocrinologist said I was lucky to be alive. A major Addison’s crisis can kill you.
Addison’s disease can be difficult to diagnose because it is rare and routine tests often come back “normal.” Symptoms may also be similar to those caused by other conditions. Your body can appear perfectly healthy even when it is completely at rest.
Many people with Addison’s disease do not initially receive a proper diagnosis. Like me, they may suffer for years thinking they have a mysterious disease for which there is no cure.
When I finally received a diagnosis, I felt incredibly relieved. I’ve been through so much. Not only in terms of symptoms, but also in terms of testing. I also had a CT scan and a spinal tap. I was really starting to think that I wasn’t just physically ill, but mentally unwell. I finally had an amazing doctor who truly understood what was happening to me and could help me.
There is no cure for Addison’s disease, but it can be treated with corticosteroid medications. This is a matter of maintaining correct levels in the body and requires lifelong medication. You should also test your cortisol levels regularly to ensure proper dosage.
I had some trouble finding the right medication dosage. I felt a little bad at first. But once the dosage issue was resolved, I felt like myself again. Not only I, but my family and friends were so happy. I got my life back. My prayers were answered, and I felt incredibly blessed.
Today, I take corticosteroid medication three times a day and blood pressure medication in the morning. Stress and illness take a huge toll on people with Addison’s disease. Because we can’t produce enough cortisol to manage it. I still occasionally end up in the emergency room due to a stress-induced Addison’s crisis (a high dose of cortisol helps me get back on my feet). But most days it’s stable.
Addison’s disease may be rare, but keep in mind that “rare” in this case still means that tens of thousands of people worldwide have the disease. Although it can affect anyone, the majority of people diagnosed are women.
It is hoped that awareness of Addison’s disease will increase and that awareness will lead to increased funding for more research and education for medical professionals. If I had known about autoimmune diseases, including Addison’s disease, when I started experiencing symptoms, I probably would have gotten a diagnosis right away and saved myself years of debilitating symptoms and self-doubt.
But I’m more focused on the fact that I was lucky enough to finally get a diagnosis rather than the fact that it took me years to get it. I am grateful for my health care providers and my faith in getting me to the point where I can cherish every moment with my family and friends.
Do you have a real woman or real story of your own that you’d like to share? please let us know.
Our Real Women, Real Stories captures the real experiences of real women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect HealthyWomen’s official policy or position.
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