A Writer's Life Interrupted #crohns #ibd #uc

 Desiderata
Max Ehrmann

Go placidly amid the noise and the haste, and remember what peace there may be in silence. As far as possible, without surrender, be on good terms with all persons.

Speak your truth quietly and clearly; and listen to others, even to the dull and the ignorant; they too have their story.

Avoid loud and aggressive persons; they are vexatious to the spirit. If you compare yourself with others, you may become vain or bitter, for always there will be greater and lesser persons than yourself.


Enjoy your achievements as well as your plans. Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time.

Exercise caution in your business affairs, for the world is full of trickery. But let this not blind you to what virtue there is; many persons strive for high ideals, and everywhere life is full of heroism.

Be yourself. Especially, do not feign affection. Neither be cynical about love; for in the face of all aridity and disenchantment, it is as perennial as the grass.

Take kindly the counsel of the years, gracefully surrendering the things of youth.

Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness.


Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe no less than the trees and the stars; you have a right to be here.

And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be.

And whatever your labors and aspirations, in the noisy confusion of life, keep peace in your soul. With all its sham, drudgery and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy.

Shalom

Louann

I hope you are learning how to dance in the rain  and I pray that your fears be resolved. Life is hard and that is OK. You take chances. Sometimes you win and sometimes you lose. Don't let anyone or anything define you. That is your purpose, your divine right.

Take time to wonder at the beauty in life. Meet the universe through nature. Find it in the Bluejay that adopts you, the deer who loves your old bananas, or the time you take to listen to the beauty of a Whippoorwill's song. She or He can be found in a flower, a rock, a fossil, split a piece of wood and I AM there.

Remember, life is short.

If you are a friend or family member of someone with Crohn's or UC here are a few things you need to know:

1. We take powerful drugs to control our symptoms. These come with some pretty horrific side effects.
        a. Hair loss
        b. Erratic Moods
        c. Cancer usually Lymphoma
        d. Dry skin
        e. Eczema
        f. Nausea
        g. Vomiting
        h. Serious and/or fatal infections
        f. And a host of other issues.

2. IBD causes issues outside of the colon/small intestine. For example:
        a. Ulcers in the stomach, throat, and mouth.
        b. Stomatitis
        c. Iritis
        e. arthritis
        f. Gall stones
        g. blood clots
        h. Dehydration
        i. Seizures
        j. Shall I go on?
        h. Gastritis
        k. Now I shall stop.

3. Significant mental health problems
        a. Anxiety
        b. Depression
        c. Suicidal thoughts or feelings

4. Having IBD is EXPENSIVE
        a. Average annual cost of Crohn's to a person on Remicade...  $48,000.00 without insurance, your maxed out deductible for those who have health insurance.
        b. Prednisone is the cheapest way to go, but you get to ruin your skeleton and various other organs while on it.

5.  Crohn's patience use the emergency room a lot. Some reasons for visits:
        a. Dehydration
        b. Fever
        c. Blockages       
        d. Abscesses
        e. Sepsis
        f. Pain relief

There is no cure for Crohn's disease. For UC it actually can be cured but it requires the removal of the colon. Not a fun procedure but I hear it actually works. Having a family member or loved one with Crohn's or UC is hard work. Plans are cancelled on a moment's notice. The sufferer is well one day and sick the next, sometimes for weeks and on occasions months and sometimes for a lifetime when remission is difficult to find. It is a disease that makes the sufferer so very tired and because of that it is easy to experience anxiety and depression.

But in between flares life is good. We IBDers have learned to dance in the rain. When a good day comes along we live life to the fullest. For me that means good times with family, friends, and grandkidlets. A day on the lake, a hike up the river, sometimes just walking the dogs brings joy. For those who have yet to find their way to the dance, don't give up. We're waiting for you.

It is all about defining yourself. Just make sure you use the good days and accept the bad as a phase you have to grow through. To the young ones,  I know it's hard, I feel your pain, but remember, you are a child of the universe and you have a right to be here.