The Irony of a Name: The REAL Story of Addison's Disease > Addison’s Disease - The Slow Insidious Takeover
November 15, 2005
Addison’s Disease - The Slow Insidious Takeover
I always thought that a person’s name was interesting. It used to be that surnames were determined by a person’s occupation or some characteristic about the family. For example, people who crafted shoes became the “Shoemakers.” (I wonder what happened to the guy who cleaned up after the cattle - let’s not go there.) Coming to the point, did being named Addison with the last name of Kennedy seal my fate. Was I destined/doomed to have Addison’s Disease? And while we are on the subject, and if we aren’t, let’s get on it, why on earth do doctors say that if you have Addison’s you can live a perfectly normal life?
As all good stories do, let’s start at the beginning. A real “once upon a time,” type beginning. The only way to tell a story is to start at the start and end at the end; I don’t have an end for you, and I don’t plan on having one for quite some time, but I can give you the journey. If you happen to be on that journey, you’ll recognize the path.
Once upon a time, I was as healthy as anyone could wish for. I was active, busy, intelligent (hopefully I still am), overloaded with activity… life was everything a woman living in busy, thriving New York City, could ever want. I am unmarried and have no children so my life is my own. I was, and am, an artist and I have many hobbies that do not veer too much from my way of earning my keep in this world. It is no exaggeration to say it is wonderful to live in Greenwich Village if you are an artist.
I don’t remember when it all happened. That is one of the things Addison’s Disease took from me. Memory. I have big blank spots in my head where memories of my life used to live. I just remember that I used to be well. Very healthy, very well and then I just wasn’t. I think I vaguely remember getting sick with some mysterious flu-like thing; I was really, really sick and to complicate matters I came down with a secondary case of bronchitis. I have never coughed so hard in my life, before or since. I actually hurt my back coughing! But that bronchitis probably saved my life.
When I developed the secondary infection, the doctor I was seeing assumed it was the flu or something close enough to it that it didn’t really matter. The bronchitis was almost a relief to him because a bacterial infection can be treated. I was prescribed antibiotics and large amounts of prednisone to treat the wicked coughing attacks. After a short time, very short time as I recall, I felt 100% better. I took the prednisone for a few weeks, tapering the dose down as I went and that was the end of that.
But it was odd. I never got my energy back. I found myself getting tired so easily. It was as though I had some little vestigial flu that didn’t want to go away. The doctor thought it was just one of those viruses that is hard to shake and dismissed it for the most part. The interesting part about insidious fatigue is that you get used to it. Slowly, over the months, which turned into years, I became used to feeling fatigued, tired, and just plain shot.
Looking back, the signs are so clear. Isn’t it amazing how easily we all can see in retrospect? They say hindsight is 20/20 and I think that is right. Tomorrow, I’ll post about what happened next; chapter two if you will. It is an interesting story because Addison’s Disease creeps up on you slowly. It can take years to diagnose. It took me 10 years to get the diagnosis. It is somewhat of a miracle that I didn’t die in the process.
Oh, the irony? Well, the Addison part is obvious. The Kennedy is the real irony because only about one in 100,000 people have Addison’s Disease and President John F. Kennedy was one of them. There is even a theory that had he not had Addison’s, the assassination would not have been successful in 1963. Interesting. I’ll explore that theory later too.
I have been looking forward to sharing this story for a long time. And the story continues to unfold. Thank you for joining me on this journey.
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Comments
I've had Addison's for over 20 years. I have not taken cortisone since about 1988 or so. It took 3 years in and out of hospitals before a dr correctly diagnosed me in his office. Stay on top of it and read all the signs your body sends you. Be good to yourself. It's sometimes so very hard and lonely because chances are you don't know anyone else who has it, but if you treat your body the way it is telling you to you'll feel better and more confident and it will become a habit to be so good to yourself. Hang in there!
Posted by: Debbie at January 22, 2006 12:06 AM
umm... im doing addisons disease for a project and I stopped to read this. I just wanted to tell you that your story has moved me. Hang in there, hope you get better.
a friend
Posted by: a friend at February 27, 2007 06:22 PM
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