Sunday, March 24, 2013

To Be Continued...

The Start

The Prize


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.

Saturday, March 2, 2013

Mom's Letter: Estrella Foothills

Dear Amber,

For a brief moment we will play a game: “If only I had known then what I know now” and “would have, should have, could have”.

If only I had known then what I know now, this race would not be a memory because I would have argued with you that you NOT run this race.  I also should have forbid you from competing (as if that were possible).  And let’s not forget that I could have fought the coaches harder about Gatorade and had you carry fluid & salt with you (coaches disagreed with anything other than water and I didn’t know the facts about low sodium levels in AD patients)

Sometimes I hate playing that game especially when recalling this particular event.  You were physically spent (close to a full blown Addison’s crisis), and I was so mad at myself for not circumventing and preventing this situation.  If only, would have, should have, could have, blah blah blah.

But now that it’s out of my system, I am extremely grateful that you lived and learned several lessons from this experience.  You learned that you WILL NEVER knowingly put yourself in that situation (or a similar situation) again.  You also learned to examine and analyze all the factors surrounding the goal then make adjustments and when necessary change the final goal based upon re-evaluation.  Some races should not be run at all.

From watching you I learned that running a race isn’t always about winning or losing but in fact crossing the finish line.  I learned how strong you are despite insurmountable circumstances and that your sheer determination is a force to be reckoned with.

I am still learning that while looking back (at this event and many others) I must forgive myself for my lack of knowledge and definitely not let my mind get stuck in the useless game of “If only I had known then…”

You are clearly alive and I am most grateful that we are on this journey together.

I love you,

In response to Estrella Foothills