Sunday, March 17, 2013

"Wait, what?"

"Wait, what? I can't tell if you're joking or serious."

"I'm serious. I really do have to take steroids for the rest of my life."

"But, you don't look like you're on roids!"

It's always interesting seeing how people respond to my medical alert bracelet. I actually use several but they all say something along the lines of "ALERT: Adrenal Insufficiency. Steroid Dependent." And I'm glad I don't look like I'm on a massive amount of steroids! Overdose of my drugs are NOT fun. Instant weight gain, emotional instability, unmanageable appetite... yeah, if you don't need to be on my drugs, stay away from them! I have to put up with the negative aspects of them because they really do sustain my life. And if I'm on the correct dose, I need not worry about the negative side effects.

The interesting thing for people to grasp is the fact that I don't look diseased. How can I live with this incurable auto-immune disease but look perfectly normal? The more astute observers notice me taking pills multiple times a day and never being far from my water bottle or healthy snacks (I still have hypoglycemic episodes). Sometimes I am plagued with a sudden onset of pain that is hard to mask or ignore. If you manage to catch a glimpse of me at that moment, you can see the pain across my face. A co-worker caught me in one of those moments. He immediately asked me if I was ok. I chuckled and said yes and sadly replied that at times I just get huge pain that happens quickly and fades. I have had it checked out with multiple doctors and they said I was fine. I could tell he didn't believe me and was slightly concerned. He asked me the next day if I was feeling better, which got other co-workers concerned. "Wait, are you sick?"

How should I answer that? Well, yes, of course I'm sick. I will be diseased for life and will never come off my medicine. How about the other extreme? Uh, no, of course I'm not sick. Do I look sick? Of course not, I'm perfectly healthy. I seem to love my black and white absolutes. I swing from one extreme to the other. But real life isn't black and white. I am both sick and healthy, simultaneously.

I won't lie. Life is sometimes more challenging with this darn disease. My stubbornness has carried me through most obstacles, but at times I am reminded that I cannot do everything. I definitely ran out of spoons at 4 pm yesterday and was in bed asleep by 9:30pm. It sucked having to cancel plans and tell people that I could not spend time with them. But life is always about choices. Even a person without Addison's cannot accomplish everything that they wanted to do every single day.

PS- One week until my half marathon. I haven't been able to train as regularly as I would have liked so I'm hoping the fact that I could race 9 miles a month ago will allow me to run 13.1 miles in a week. I will be very pro-active about increasing my medicine and I just hope my disease behaves. Although I can handle setbacks after triumphs, I would rather have this next story just be a triumph. I'll be sure to let y'all know how it goes!

Here are three of my medical alerts. If you see someone wearing something with this symbol, it means they have a medical condition. Also, my bracelet in the bottom right has the word "Hope" attached. That is to constantly remind me although my disease will never go away, I must never loose hope. I am clearly alive.

9 comments:

  1. Hi Amber, I enjoy reading your blog. I myself was diagnosed with secondary adrenal insufficiency about a year ago at age 33. I'm just now at a point where I feel like I'm getting my life back! And I'm thankful for every moment of every day!

    Thanks for sharing your story, and good luck with the marathon!

    Lacey

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    1. Hi Lacey, I'm happy you found my blog :) I love hearing from others who also have adrenal insufficiency. I find it endlessly fascinating how it affects each of us differently. Did the doctors say what caused your secondary AI? I remember it being such a shock when I was finally properly diagnosed and it took a bit of adjustment to get back to "normal" It definitely took some time.

      Please keep in touch!

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  2. Hi Amber! I was diagnosed with Addison's and hyperthyroidism about two years ago. I am 36 years old now and starting to feel like a human again :) It is really hard to find people with this and NOBODY understands (except my husband) about the whole steroid thing :) Thank you for sharing your story! I am curious about how you were diagnosed and how long it took...I am not sure if you still check this but how was the marathon?
    Laura

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    1. Welcome Laura! Isn't feeling human again a wonderful feeling!

      I was diagnosed in 2005, but my health began declining several years before that. And my half marathon went well! My time was 2:08:33. I survived it and was able to walk the next day. However, for my NEXT half marathon I will tweak my stress dosages and training schedule. I am still learning how to live with Addison's and to work with it, even after eight years.

      Feel free to check out "The Timeline" at the top of the page. It has all of my blog posts in chronological order so you can read more of my journey. And keep in touch! :)

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    2. Thank you for that...Not sure why I didn't check that before :) I LOVE the quote from the woman in the waiting room...freedom-that is what it is once someone tells you what you have and that something can be done about it! I love your optimism and courage :) Thank you for sharing your story so that people like myself can find it and realize that we are not alone-and life goes on...live it or get left behind :)

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  3. Hi Amber! I have enjoyed your blog. My dog Kaiser has Canine Addison's Disease. To understand him, I enjoy reading about the human disease, trials and tribulations - since he cannot tell me what is wrong. Thank you for your insight. My boy is on an injectible med called Percorten-V. I don't believe this is used for humans any more. I think JFK used Percorten which was a time release med (like Depo-Provera) under the skin. He is also on daily Prednisone. Percorten works better in dogs than Florinef. Have a wonderful day!

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    1. Welcome Denise!

      I remember the first time I met a dog with Addison's. I saw how cortisol is crucial for all living creatures. It definitely gave insight and understanding to my day to day life. I found it endlessly fascinating :)

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  4. Hi Amber!
    I was just diagnosed on 8-1-14. I started my steroids yesterday. Is it odd to feel both scared to death and relieved at the same time?

    Thanks!
    Bonnie

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  5. Hi Bonnie and welcome to the family!

    And yes, that response is completely validated. There is relief in knowing a diagnosis, but the unknowns of the future are at times so frightening!

    The good news is that you are not alone on this journey. If you want, send me a facebook message. I'll link you up with some online support groups that provide a great wealth of resources. A new diagnosis is a scary thing. But I find great comfort in knowing that I can relate to others that walk similar paths.

    And please keep in touch :)

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