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.

25 comments:

  1. Amber, I have prayed for you for years. I am so proud of you for choosing life because God does give us joy when we are in trials. My 19 year old daughter also lives with a chronic disease and has gotten better but is slowly slipping back due to decisions that she has made to not care for her body as she should. Stay strong and work hard at staying healthy. I will keep praying for you!

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    1. Thank you so much for your encouragement! I feel so blessed knowing how many people support me and care for me.

      Living with a chronic disease is so difficult at times. I definitely have multiple stories of where I chose to ignore my disease which normally ended with a visit to the emergency room. I will slowly share both my triumphs and my set backs here.

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  2. I am so proud of you Amber. You can be an inspiration to others using your skill with writing. Way to turn lemons into Lemonade!!!! Praying with you and for you xoxoo
    Sue

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    1. Thank you so much :) Some days my lemonade is more sour than other days, but I still strive to improve the recipe daily :)

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    2. Hi there, i am so glad to have found your blog.. I have never followed a blog before and would like to follow yours. So silly question.. How? How do i follow you and get notified when you post? Sorry for the dumb question but i can't seem to figure it out :-)

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    3. Hi Heather,

      No worries! There are a few options for you to follow my blog. On the right side of the page there is an option to "Follow by E-mail." You'll have to confirm your subscription, but this will allow you to have every blog post sent directly to your inbox.

      Another option is to like me on facebook: www.facebook.com/clearlyaliveart Every time I publish a new post, I also share it to that facebook page.

      I hope this helps! And welcome :)

      ~ Amber

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  3. Amber, I am so honored to be your friend. Your determination and fighting spirit is an inspiration to me! I am so proud of you. I've known you through a lot of your struggles as you were being forced to accept your Addisons (while juggling one of the hardest majors at college... living in Korea for a semester... etc etc.). And today I see you charging forward, working hard, running, painting, and loving your cats. You are an amazing woman my friend! Keep it up!

    Palmer

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    1. Thank you Palmer :) I look back at some of the stories and struggles I've had the past couple years and I just have to laugh at the ridiculousness of some of them. Thank you for sticking with me, dear friend.

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  4. Amber, I had no idea! But I knew there was something extra special about you :)

    Miss you!

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    1. Thanks Grace! I look forward to seeing you and Allen over your Christmas break :)

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  5. "I choose life. I choose optimism." LOVE this!!

    What a great blog! My young daughter has Addison's and it frustrates her to see people (many blogs, comments) afflicted with this feeling sorry for themselves, seeming to seek sympathy and blaming the illness for everything. I love your outlook and your drive for life! Honestly, what a breath of fresh air of courage you are. This site is a real reference for hope and happiness for people who have, or love others who have, Addison's Disease. I cannot wait to show my daughter this blog to see that there are others who optimistically choose life!! Thank you, Amber :0)

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  6. Amber - you are inspiration and an example. I love you friend!

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  7. Hello Amber,
    I am a friend of yours on the fb page "Addison's Disease Support Group". I didn't know that you were an Artist, but I see. Great work! :D Been thinking myself of getting into watercolor. I am a Portrait Pencil Artist myself...and it is a passion, besides singing.
    Just wanted to check out your site and yes, we can slip into depression. but I do as you do...I keep positive and it does lift a person. It is way better than feeling blue or keeping a frown. I do not like frowning..it really seems to hurt more and feel worse..when, I do frown. So, I found that being positive is way better. :D
    Take care girl and glad that you want to keep going and choose life. We have to keep on, keeping on. Smiles to ya. :)
    When you get a chance..check out my mixed up blog lol. It has a lot of everything on it...whatever, I was feeling and even some holistic medicine info there too. I have had so many mixed emotions going through all of this that I had to write my feelings down. Very therapuetic for all of us..who are dealing with so much in life. God Bless you girl.
    Skeet65.blogspot.com
    It is called "Life..and the things it brings"

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    1. Hey Karen,

      Sorry it took me a couple days to respond to this! And I agree that writing (and art) is incredibly therapeutic :)

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  8. Hi Amber,

    Thank you so much for sharing your journey. My name is Eryn, and I have been living with Addison's disease 10 years next month. I am currently training for my first half-marathon, and reading through your blog has been a great help! I look forward to following your story as it continues!

    Eryn

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    1. Welcome Eryn! Please keep in touch :)

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  9. Addison people can join the facebook group "Yes, I have Addison's Disease. No, it's not contagious." It's a closed group so whatever is said there stays there. I was finally diagnosed in 2008 i believe. It's good to have someone to listen to and know what your going through

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    1. I completely agree. It's so nice to know that you are not alone in your diagnosis!

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  10. God Bless You Amber. I am a lung cancer survivor, I had cervical cancer also. I have pulmonary hypertension and have had 3 surgeries to remove benign growths from my vocal cords. I have had congestive heart failure and a heart attack. I also have secondary adrenal insufficiency (Addison's Disease) and have been living with it since 2001. I have had two addisonian crisis.

    Travel within....meaning find out who you are. There are gifts that one receives when one has a life altering event in his/her life. We have to be open and receptive to receive these gifts.

    Be strong my dear, be strong. Only the strong survive!

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  11. I wrote the comment above Amber, I forgot to add that I walk at least 2 miles a day.

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  12. Amber, please have your B12 levels checked. Taking over the counter vitamin D twice a day may aid you as well. (Caltrate)

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  13. Hi Amber , maybe my English not good enough to explain my case and to share my experience but I will try .
    first of all let me tell you that once I saw your page I started crying because I felt that im not alone .. thers someone who share this type of pain with me

    actually , my case more complicated the yours , I'm hypopituitarism pt. that means all my glands not working , and the most important and difficult one is the adrenal , on 2008 I did the surgery (macro adenoma ) removing , through my nose ..
    and then the drama started .. hydrocortisone daily and for ever and antidiuretic hormone ( Minirin ) and thyroxin daily and for ever .. as you u know our problem become worse when we get stressed or tired or sick , we must double the dose and some times it will not make any effect .. the new problem now that im losing a lot of sodium and within minutes the level of sodium become 110 or 115 and the normal 145 ! and it Couse coma and usually I admitted in ICU for 10 days or one week .. and with very high doses of hydrocortisone .. and once i finish all this drama the new story starts that my wait after each time I had this problem increased maybe for 10 kilos and my face become very round and white !
    I was trying to search and find some medications or maybe herbs that can activate the adrenal gland cells ! so it works normally again ..

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    1. That's so scary about your sodium levels! I start to feel beyond awful any time my sodium drops below 140. 110 or 115 is MUCH too low!

      Do you take Fludrocortisone? I take it daily in addition to my hydrocortisone to help my body retain sodium. It helps balance our my electrolytes and keep me from getting as easily dehydrated.

      As for searching for something to activate the adrenal gland cells, I know in my case (Primary Adrenal Insufficiency), there is nothing. The safest and most natural thing for me to do is take HC in such a way to mimic a healthy adrenal gland.

      Any herb or supplement that claims it can replace HC is VERY DANGEROUS for me. My adrenal glands produce no cortisol, so the safest thing for me to do is replace that cortisol.

      Now I also monitor my diet, try to reduce my stress load, surround myself with a solid group of healthy relationships. A healthy life is so much more than just swallowing pills. And it is so nice to know that we are NOT alone on our journey :)

      Welcome :)

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  14. Nice to "meet" you, Amber... Thank you for stopping by my blog. :)

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