Tuesday, April 12, 2011

#59 - Once Upon a Time...

Once upon a time, I had the strength and energy to run in circles and then climb the walls with a smile. Energy was in abundant supply. My body was a great team-mate for me to do everything in life that I wanted.

After my fairy tale existence with my body came to a crashing end, literally, I found myself in a body that seemed to be detached and out of touch. I became very weak and sick with Addison's disease because a diagnosis had not yet been made, I faced daily challenges that became very serious. My mobility became severely impaired and it was only growing worse every day.

So often, as morning approached and I needed to go to the restroom while home alone, I'd lie there giving my body a pep talk and going over the plan, "Ok, the hard part will be to get myself out of bed, but once I am standing...I'll get moving pretty fast in the direction of my master bathroom, for the toilet. And I won't stop or I might not make it there. I'll hold on to whatever pieces of furniture are along the way. Once I reach the toilet, I might not be able to make it back. If that happens, I can actually sit there until I get help, not my preferred scenario, but at least I'll be able to lean my head on the counter and have a water faucet nearby. God forbid I need to have a bowel movement because those can actually cause me to pass out. I do not want to pass out while on the toilet, home by myself. It's an ugly fear, but it is possible. If all goes well, when finished, I can launch myself upward and make a stumbling run back for the bed. Ok, deep breath, pull back the covers, slide the feet over the edge of the bed and now...toilet here I come!"

Before I became very sick with Crisis symptoms because all of the many doctors and clinics and hospitals could not find a diagnosis, I never imagined what it would be like to live inside a body that could not respond to do the most simple of tasks to meet your basic needs. This struggle went on for a long time. I had too many long months of my precious time being wasted on useless doctors, I spent untold thousands of dollars trying to find an answer to my health problem and the most I would get is "You have chronic low blood pressure, low sodium and are a woman living with stress."

I continually felt discarded. I could not believe that the doctors were always so rushed and so eager to reach for the closest textbook answer. Not one doctor had the brain power to put my symptoms together and suspect adrenal problems. Even when I had to lie down in the backseat of the car to reach the clinic, then lie down until called in to the examining room and once inside the tiny examining room, I would have to have help to lie down on the uncomfortable examining table so I could remain conscious. Some nurses were puzzled, not able to comprehend why I could not sit up to even have my blood pressure taken. Even so, my blood pressure was approximately 72 over 44. Yet, at the end of the appointment, I'd basically hear the same words, "Go eat more salt."

My condition worsened so severely that my husband and my parents knew that any more doctor appointments would not be possible. I was too sick to make it into a clinic. I was too sick and weak to wait in a chair, I could not sit upright. I was too sick and weak to walk from the waiting area to the examining room. My body had become totally uncooperative. My entire family was worn out and very aware that something was very wrong with my health. Everyone was becoming aggravated with the doctors.

I remember this phase in my life as total helplessness. I was sinking into a dark cave further away from everything I knew in life, sinking into a place that was unknown and terrifying. Some mornings, I'd wake up and tell myself that this silliness was OVER and that TODAY was going to be a new day, with my body behaving like normal and all problems would be far behind me, because I DECIDED for it to be that way. Then, with all my firm determination, I'd stand up, my blood pressure would plummet, my vision would fade to black and my limbs became jello. Back into bed and back to reality I'd go. There was no convincing myself, no changing my attitude so that my body would follow suit, there was no mental compensation to make my body able to stand and walk and jump and do the things it had done months previously. I was stuck.

Waiting for that diagnosis had to be one of the worst times of my life, especially because I didn't know if it would ever come. I didn't know if what I had was something that could even be "fixed." Meanwhile, every day I was getting worse. My body was becoming more and more weak; I was forced to lie down and watch life pass me by. It got so bad that I didn't have the blood pressure to sustain my body even in a propped up position. Soon, all I could do was lie nearly flat on my back with minimal movements while trying to stay conscious. It was dire.

My diagnosis changed my life. I went from being a ragdoll to feeling life's energy surge through my body once again. For a long time, I was unstable on my feet and wobbly in my head, but I was able to walk, to cook, to dance around the room being silly with my daughters...I was finding myself again. I did get exhausted quickly and had many close calls still to come, but learning to maintain my Addison's was a difficult lesson because of how far down in health I had gone.

After diagnosis, I soon began to mourn the fact that it didn't help bring back the same old me. I wasn't the same old me any more - I looked for her, I missed her, but it would take a while for me to accept that she was long gone. But, the new me was re-surfacing from the brink of death and the new me had a fresh outlook in life.

My body was different, my mind was different and my entire existence had been altered. Now, as I look back to that time about ten years ago, I can still feel the anguish and trauma from those days when no one had any idea what was going wrong with my body, as my friends would walk into my room with fear on their face while they tried to act like nothing was wrong - some friends could only cry - some never came back. That was fine. Frankly, I was too sick to be concerned about the friends who were disappearing; the more that disappeared, the less effort I had to exert. It was a mixed blessing.

I look back and know that the years in between have helped to create a new Lana. The years in between would also hold more incredible challenges that I would never have imagined being a part of my life, but I made it through each and every one of them. Some days I still go in circles, so my journey in Finding Lana is far from complete, but I keep trying, and I have learned to appreciate every lesson.


  1. My son was diagnosed a year ago. He was sick for months, but nothing as bad as your story. He's 13 now. Doing better,but I still have many questions. Addison's is very mysterious. Its hard to speak with people who have no clue what it is...they give a blank look. You sure know who your true frineds are when going through something like this. :)

  2. Lana, Your story sounds a lot like mine. But, it didn't take too long to diagnose me thanks to my gastronterologist. I went to the ER and they addmitted me because they thought it was my Crohn's acting up. My hero doctor find the Addison's the next day. I had been sick with symptoms for a few months but just kept going until I couldn't go anymore. What a f*#@%ing disease huh?


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