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rich emollient used in the management of eczema, psoriasis and other dry skin conditions.

2Oct

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There are very few things in life that truly last forever, you can change how you look, you can change partners, people die and families change, you can change your personality, and you can fall in and out of love. In fact, I am having a hard time thinking of something personal that truly lasts forever.  So what does forever feel like?  It’s something you have probably never thought about because you’ve never had to.

When I was twelve years old, I was diagnosed with a disease that is incurable.  I was told the disease lasts your entire life, but to a twelve year old, your entire life is only twelve years.   When someone says forever, you think they mean next year and growing old means going to high school.   In all truth it is almost impossible for a twelve year old to comprehend what forever means.   But forever is a very long time and as I grow older, I begin to realize just how long it is, and what that means for the rest of my life.

Forever feels impossible, it feels as if, you are climbing a ladder with weights on your back, and as you climb you see everyone else climbing past you and reaching their goals.   But the weights on your back slow you down and as you look up, you search for the end of your ladder, but you don’t see it.  You keep climbing, getting more tired as you go, but no matter what you do, the end is never in sight.  When you stop to catch your breath, you still have to hold on to the ladder and hope you don’t fall.  When you get too tired you fall, and your weight drags you down, and you start again.   All the while watching people pass you by and accomplish their dreams.

With a disease, no decision is short term, not when forever is at stake.  Every decision can and will effect me.   A mistake today, leads to a flare tomorrow, which leads to scar tissue next month, causing surgery next year, which removes more of my intestines, eventually leading to short bowl syndrome.  There is little room for error when you are dealing with a disease that lasts forever.

Forever is daunting, especially for a 21 year old college student, its taken me 9 years to comprehend forever, and I am just now starting to understand it.   I suppose I have chosen to deal with forever by accomplishing the seemingly un-accomplishable each and every day despite my disease.   I work hard at the things I believe are important and learn to take what my disease throws at me in stride.   It’s not easy and often depressing, but I refuse to let my forever be dictated by my disease.  I may be sick forever, but I am so much more than my disease and will never ever forget who I truly am.   So although my disease will be with me forever, and has forever changed my life and my body, I refuse to let my disease dictate “my story” and will fight to make my own “forever” each and every day in my not so normal life.

  

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