Saturday, December 29, 2012

External Links


Here are a few websites that describe Addison's Disease, for your reading pleasure.

About the Disease

About the People

Additional Addison's Bloggers

Wikipedia

Resources and Support


More of my Writings:

  • The Importance of Perception, 09 April 2014, Adrenal Insufficiency United
  • Addison’s Disease & Gluten Intolerance: Amber’s Story, 20 November 2013, Purely Thriving Health & Wellness
  • The Beauty of Community, 31 March 2014, Adrenal Insufficiency United

    Wednesday, December 19, 2012

    Mom's Letter: The Diagnosis

    Dear Amber,

    I’m grateful you remember that day and test. I like your version much better. I can laugh at my version now, but at the time not so much.You had interrogated me with your best logical questions and pleas for well over an hour before we arrived at the endocrinologist office. The short version went something like this:

    AMBER: I really don’t want to do this.
    ME: I know you don’t want to do this, but sometimes we have to do things we don’t want to do because it’s the right thing to do.
    AMBER: What if the test is like the last one and doesn’t work?
    ME: Amber the last one worked because it eliminated hypoglycemia. That’s a blessing.
    AMBER: But we still don’t know what’s wrong so it didn’t work.
    ME: Yes it DID work because we know that you DON’T have hypoglycemia

    And on, and on you relentlessly questioned, “Mom why do I have to do this test? It’s not fair! Why are you making me do this? I don’t want to go. Where is this test? What does the nurse look like? How many times are they going to poke me with the needle? How many people are having this done? Are they my age? Will you be with me the whole time? Can I eat a snack while I’m there? What if I have to go to the bathroom? I don’t feel good; maybe we should do this on another day.” I had to tell myself to breathe. It didn’t work.

    I was thankful to get you into that car and walk into that small office full of other patients. I knew in my heart that this doctor (at this time with these tests) was a positive answer to prayer and a blessing, but at the time I wasn’t feeling it. I was praying repeatedly that no one would speak because I was worn out, needed quiet AND because I didn’t want anyone to give validity to your fears.

    Then that lady began speaking. Obviously I wasn’t praying hard enough, and my Jedi mind control powers were failing me. My worn out spirit went on high alert. I really didn’t hear most of her words, but I did notice her comforting tone and relaxed a bit on the praying hard for her to hush. I heard her say she drove over 2 hours to this specific endocrinologist because he was the best in his field for miles around.

    When she said: “We are so blessed to be sitting here...” I about lost my composure, wanting to burst into tears right there in that little waiting room. She said very eloquently what we both so desperately needed to hear AND she was credible since she, for many years, had lived with this and had suffered like you. Glad my prayers for her to hush were answered with a “NO” that day.

    We made it through the test, or I should say you made it through the test. The results came after two long weeks of waiting. I wasn’t sure what Primary Adrenal Insufficiency meant; I just knew that I was relieved to have an actual name to call your “condition” but also shell shocked to hear that you were “cortisol dependent” for the rest of your life.

    Amber, I’m really glad you remember that day and those two weeks differently than I do. It’s given you strength to this day. I never heard that lady in the waiting room describe freedom, I just heard her words about blessing.

    Maybe they are the same thing.

    I am laughing through my tears.
    Love,
    Mom

    In Response to The Diagnosis

    Saturday, December 15, 2012

    The Diagnosis

    The year was 2005. As my mother and I sat in the waiting room of my endocrinologist, I looked around observing the other patients. There were eight of us here for the same two-hour blood test. I was the youngest at fifteen. The next person closest in age was in her early twenties.

    It started out awkwardly. The eight of us starred at each other wondering about our uniting factor. I was reminded of the movie The Breakfast Club. We were complete strangers from a variety of backgrounds yet we were all in one small room for a specific amount of time. One woman decided to break the silence and began to speak. As she spoke, I realized that she was quite knowledgeable. She talked about how she was diabetic, had tendinitis, horrific allergies, and now possibly this. Yet when she said this, she did not state it with anger but with a tone of joy in her voice.

    She retold a conversation she had between the endocrinologist and her. She discovered a statistic that stated it takes on average eleven years to diagnose a person with this because it so often goes misdiagnosed. When she told that to the endocrinologist, he laughed and said, “No, it takes longer than that.” I looked at my mom as she nodded silently in agreement. I had been misdiagnosed for fourteen years. The woman looked around at the group in the waiting room, as if she was on the verge of saying something significant. When she decided to speak, I realized that I would never forget the words that she said.

    “We are so blessed to be sitting here in this waiting room, participating in this test. We have the capability to live the rest of our lives free from this. It’s treatable. We can live without hindrance. We have the rest of our lives to live…” Her voice slowly started to drop off as I realized the seven began to look at me. It was quite obvious that I was the youngest in the room. The oldest was a man, probably in his late fifties. The second to oldest was the woman who just spoke. Here I was, a teenager among adults, about to receive one of the greatest gifts in life. Freedom. It was a freedom from an unknown medical condition that had plagued me my entire life. We all were receiving the same gift, yet mine seem so much more valuable due to my young age.

    The two hours ended. As we all gathered our belongings in order to return to our different homes I remember the lady saying, “Well, I guess I’ll never see you again. Good luck and may you never forget this blessing.”

    Within two weeks, it was time for me to return to my endocrinologist to see the results of the test. As he looked over the chart from the two-hour test, he merely stated, “Amber, you have primary adrenal insufficiency. You will have to take Cortef for the rest of your life.”

    That day, I became free.

    I was unsure of what this freedom looked like. I was unsure of what lay ahead. But at least I had a diagnosis. I had a name that I could associate with my suffering.

    Primary Adrenal Insufficiency.

    Three years later, the name was changed to Addison's Disease.

    Thursday, December 13, 2012

    Mom's Letter: Hypoglycemia

    Dear Amber,

    I used to describe you as “Taz” the little Tasmanian devil cartoon who was calm and mild mannered one moment then wild, uncontrollable and irrational in the very next second. It was the strangest thing and NO parenting book, class, or article had prepared me for this phenomenon in your behavior.

    I noticed early on that feeding you approximately every 2 hours would keep you from morphing into “Taz”.  And yes, the pediatricians called it “hypoglycemia” or low blood sugar.  That diagnosis and treatment plan of eating high protein with carbohydrates every two hours worked generally well for a few years.  Except that sometimes when it didn’t work the episodes were becoming increasingly worse. 

    And it failed miserably at band camp the summer before your first year of high school.

    When I FINALLY found an endocrinologist who was willing to partner with me on the journey to properly diagnose and treat you I was relieved.  He wanted to scientifically eliminate the diagnosis of hypoglycemia if the treatment plan was no longer working.

    After that hard week, we sat in his office and he informed us that you did not have hypoglycemia.  I had such mixed emotions.  I had to remain calm because your anger and reaction of frustration was clearly evident and I did not want to escalate it, but calm you.  I couldn’t lose control, not now, not in front of my daughter.  All I could manage to utter was “…now what?  Where do we go from here?”

    I am thankful he had a plan, and that he remained very calm and reassuring.  I am thankful he had another test in mind.  He only gave us the information that we could digest at that time, no false hopes yet at the same time, reassurance that he was going to keep digging until we found an answer.

    He was committed to finding an answer that we could live with, and one that would allow you to live better, and stronger, and healthier.

    I’m still thankful.

    Love,
    Mom

    In Response to Hypoglycemia?

    Wednesday, December 5, 2012

    Mom's Letter: Band Camp

    Dear Amber,

    I knew something else was terribly wrong but had no substantial evidence to prove it. Culture shock had struck all four of us as a family and it was very difficult to navigate.

    The awful feelings (both physically and mentally) you were experiencing were reasonable and somewhat expected due to our move across states from the South to the West, a new job for Dad with a new company, new house in a strange city, trying to make friends while attending new schools, etc.

    THEN, Band Camp!!!! I remember the looks on the chaperones’ faces and band directors’ faces when I was emphatically describing your “condition” of hypoglycemia. I gave them a detailed note listing actions to be taken just in case you suffered an “episode”. I glimpsed a slight eye roll from one of the parents as they patronized me and nonchalantly told me that band camp was no big deal and that you’d be just fine.

    And then I got the phone call saying you had blacked out and fallen down. Those chaperones weren’t rolling their eyes now! They assured me you were alright; they had given you Gatorade, and had you eat and said you were resting comfortably and that you were going to take it easy during the rest of the day.

    I spoke with you briefly and we analyzed every moment you could remember. What troubled me the most was that according to everything we knew at the time, you shouldn’t have fainted.

    This was indisputable evidence that something other than hypoglycemia (coupled with culture shock) was terribly wrong. Hypoglycemia and the treating of your “condition” wasn’t working anymore and I had to find out what was happening to my beautiful child.

    You had suffered enough! And thus began my desperate search.

    Love you much!
    Mom

    In response to Band Camp

    Saturday, December 1, 2012

    A Triumph and a Setback

    Originally I was going to share my diagnosis story this week. However, I would like to pause that story to share somethings that happened more recently in my life. I will never outgrow Addison's. It is something I must live with every day. Like everyone else, my life has good times and bad times. I have triumphs and I have setbacks. I'll share one of each here.

    With Addison's, I'm considered a "salt loser." My body just does not retain sodium. I have to take extra precautions to make sure that I remain properly hydrated. I'm also a runner. Running dehydrates a person fairly quickly. I probably could have picked a sport that is kinder on my body but where's the fun and challenge in that?

    On Thanksgiving Day, my parents and I participated in the Turkey Trot race. My parents decided to complete the 5k (3.07 mi). I wanted to push myself. I wanted to test the limits of my disease. I wanted to complete the 8 mile race. I knew this was going to be hard on my body. Could I do it?

    The 5k and 8mi shared the first couple miles together. Then we had to face a choice. 
    Turn left and finish in 1/2 mi, or continue straight and run another 5 miles.
     I  continued straight.

    I am proud to say that I finished the 8 miles! I ran 8 miles in 1:19:50. I had proven to myself that I had a handle on Addison's. I had this under control. Go me! I even felt the need to brag about it on Facebook.

    Black olives are high in sodium.
    I normally eat an entire can to quickly re-hydrate.
    Triumph achieved! And my setback? Well, I spent about 2 hours in the ER on November 28th. What started out as a headache turned into extreme nausea. I didn't want to move at all. Then came the upset stomach. Then the uncontrollable shaking. Once I started shaking I couldn't stop crying. I couldn't walk, I was too dizzy. I knew I was slipping into a crisis. I needed help. It was time to go to the ER. I was so thankful that I could call up my friend who lived close and he could drive me. Actually, he had to escort me down the stairs of my apartment because I was too dizzy and weak to walk on my own. At the ER, the doctors ran some tests and gave me extra cortisol and fluids. It's pretty standard protocol. The doctor said that there is a nasty virus going around, and when it hits me, it just hits me harder than others. I was free to go, but I had to take it easy for the next couple of days.

    Yes. Going to the ER at 8:00pm is totally how I wanted to spend my Wednesday night.
    I would love to be able to pretend that I have this disease 100% managed. But nothing in life can be managed 100%. We plan, we prepare, and then something completely unexpected comes up. Six days after I celebrate my two year ER free anniversary, I find myself hooked up to an IV and shaking uncontrollably under three blankets in the emergency room. Go me?

    So now what? I pick myself back up, celebrate the fact that I did manage to stave off an Addisonian Crisis for two years. That is an accomplishment. I will focus on my triumph, but acknowledge my setback. Such is life, be it a healthy life or a life with Addison's Disease.

    Sunday, November 25, 2012

    Hypoglycemia?

    After fainting at band camp, the hunt for a proper diagnosis escalated. As a toddler, my doctors were convinced I had hypoglycemia. I would be a normal child one moment and then I would morph into an uncontrollable devil with extremely destructive tantrums. After the destructive mood, I would become ridiculously emotional and be unable to stop my uncontrollable crying. This progression would happen normally under an hour window and would conclude with me "falling asleep" and not remembering any of my mood swings afterwards. My mom discovered that this ordeal could be avoided if I ate every two hours. I never felt hunger and was trained to eat according to a clock. The doctors called it hypoglycemia.

    Was it truly hypoglycemia? I went to one endocrinologist who did not believe a word my mom was saying. He requested a very cruel test to prove to her that I wasn't hypoglycemic (I'll save that story for another time). We saw him twice and refused to return.

    Mom then found another endocrinologist. She spoke to the office staff explaining to them how she needed a doctor to play "Inspector Gadget" and look at all the evidence. The office staff assured her that this endo would do that. During our first visit, we explained to him the test that the other endo requested. He agreed that it was ridiculous and there were much safer ways to rule out hypoglycemia. He wanted me to wear a constant glucose monitor for a week. I've included an image below. The white part was attached to my hip, while the black box would clip to my pants.

    My glucose monitor looked very similar to this. Picture taken from here.

    In addition to wearing the monitor, I had to manually prick my finger and check my glucose levels four to five times a day and to record everything I ate with a time stamp. I was thrilled at the end of the week when I could have the huge black box removed from me and stop testing my glucose levels during school hours. A week later, I found myself back in my endo's office with the results of the test.

    "Amber, you do not have hypoglycemia. Your night glucose levels do not dip low enough."

    At this revelation, I was mad. I began crying tears of anger. What?! No. I must be hypoglycemic. I've believed I was all my life. How dare you tell me different. What else could explain the lack of hunger, the dizziness, the anxiety, and the malaise? Am I imagining these symptoms? Am I imagining my pain? What is wrong with me?

    My endocrinologist calmly stated that there was another test that he would like to perform. He was bringing in a specialist specifically to run this test for a couple of his other patients. It was a more in depth blood test that would last two hours. He believed this test could provide me with some definite answers.

    What was wrong with me?

    Saturday, November 17, 2012

    Band Camp

    I had a rough year in eighth grade. I moved states summer before and that move was extremely difficult. Most of my struggles in eighth grade came from the fact that I just did not feel well. I could not explain what was wrong, I only knew I felt awful.

    So let's add some picture perfect cheerleaders and me... who just felt so out of place. A southern gal who was used to playing football suddenly had to learn about Coach purses and Tiffany's necklaces. Hello different culture. Couple that with the fact that I was continuously feeling worse, but yet I could not explain my pain. Yes, I had a very rough eighth grade year.

    However, ninth grade mean high school. It was a fresh start! I would go from a school with thirty eight graders to over seven hundred ninth graders. And I was going to be in the marching band! I was going to attend band camp in Northern Arizona the summer before ninth grade. I was excited, but also anxious.

    I don't remember what day of band camp it was, but I do remember that the weather was gorgeous and that I had a good breakfast that morning. We were just doing basic drills that day. Stand at attention. Turn right. Turn left. Turn around. I remember not feeling well, but I did not want to draw any attention to myself.

    Then the world went black.

    "AMBER! AMBER!! AMBER!!!!"

    When I regained consciousness, I realized that my friend and fellow clarinet player was standing over me and shaking me violently while screaming my name. Slowly, the world came back into focus. I was surrounded by people which overwhelmed me. I was extremely confused so I started crying. Someone said I started convulsing on the field. However, no one could tell me how long I was unconscious.

    Awesome. I was now the freshman that fainted at band camp. At least that makes a good "this one time at band camp..." story.

    My unexpected blackout was the final straw. My mom was determined that there was something else wrong with me. Hypoglycemia was no longer fitting the facts. The hunt for answers just escalated. We had to find a doctor that was willing to search for the answer.

    What was wrong with me?

    See my mom's response

    The t-shirt hides the severe muscle wasting in my arms.
    I cannot hold my head straight up nor can I look at the camera.
    My dizziness was unmanageably high.

    Wednesday, November 14, 2012

    The First Letter

    The Background

    I have asked my mom to help contribute to this blog. I live with this disease, but so often I do not see the entire picture. There are many times that my memory is fuzzy. My mom has been fighting for me for my entire life.

    People do not survive in isolation. Also, a chronic disease affects more than just the one diagnosed. My entire family has had to make sacrifices due to Addison's Disease. That is why my mom's voice needs to be heard on this blog.

    She has decided to write her posts as letters to me. They will be responses to what I have shared with y'all. Through our combined voices, you will be able to get a clearer picture of what our journey has looked like.

    The First Letter

    Dear Amber,

    It has been a journey, maybe even an adventure at times; and we are just getting started. When you were born and placed in my arms years ago, my thoughts were “She’s beautiful and she’s perfect!” Dad and I were overwhelmed with joy.

    We had no way of knowing that you would have to overcome so many obstacles, have to deal with so much pain due to undiagnosed Addison’s, and have to make so many conscientious choices along your journey.

    You are choosing to share your private journey (difficulties and successes) of living with this incurable yet manageable disease. I’m so proud of you for letting go of depression and hopelessness and instead you are choosing to live!

    You ARE clearly alive!

    I am thankful,
    Love you much!
    Mom

    In response to Why Blog? Why Now?

    Saturday, November 10, 2012

    Why Blog? Why Now?

    My name is Amber, and I live with an incurable disease. How's that for a conversation starter?

    Prior to 2005, my doctors just believed I suffered from Hypoglycemia. However, several medical crises in 2003 and 2004 led my mom on a mad hunt to find the true answer to my suffering. In 2005 I was diagnosed with Primary Adrenal Insufficiency. In 2008, my diagnosis was formally changed to Addison's Disease.

    At the time of my diagnosis, not much was known about the disease and how to successfully live with it. I felt alone and isolated. No one could understand living with an unheard of disease. As years have passed, doctors and I have continued to learned more about this disease and how to successfully manage it so that my life can approach normalcy.

    I wanted to start this blog to chronicle some stories of a life with Addison's Disease. Living with a chronic disease that requires daily medicine can be quite difficult at times. It is easy to slip into depression and hopelessness.

    I am done doing that.

    I choose life. I choose optimism. And I choose to share some of my stories here.

    I want people to know that I am Clearly Alive.

    Ready to read through my journey? Start Here.

    Disclaimer: This blog shares my personal journey and struggles. It is not intended as a substitute for the medical advice of physicians. I am no doctor. I am just an average girl, living with Adrenal Insufficiency fighting constantly to remain Clearly Alive.

    Additionally, this site uses affiliated links. When you use the links provided by my blog to purchase things from places such as Zazzle or www.Roadid.com , you are helping me raise money for NADF and AIU. Thank you.

    10% of your Purchase supports NADF and AIU.