A Writer's Life Interrupted-- #crohns #ibd #life

I am hopeful.
What beautiful words.
You can live while dying and die while living. Your cells shut down, the inflammation gliding along your body destroys nutrients. Your hair falls out, your skin sags, your ability to digest food, that source of power that gives you life, crumbles. And with it, hope.

Pain forces your attention toward it no matter how hard you try to distract yourself. It wracks your body coming as a dull ache that never stops or as a pulsation that dances in time with your heart. You cannot get away. Even the strongest painkillers don’t work forever.  

You die. A little bit at a time.

And you pray.

I have severe Crohn’s disease.  I may not want to believe I do, but I do. I have to accept that. With that acceptance comes a peace I thought would escape me when moving into the scarier area of treatment. I thought I would wonder every day if a cancer cell was invading my body because somewhere, somehow, I developed this genetic disease because I have Jewish blood, or my ancestors came from northern countries, or maybe it’s because I love(ed) diet Coke too much. Or maybe, just because.

Does it really matter?

It did. It doesn’t now.

Now, I want to live.

If somehow my living is shortened by a few years because of drugs I take to keep my disease under control, oh, well. At least I was able to live those years instead of feeling myself die each day, little bits at a time.

I will accept that.

I get that the drugs can cause cancer, drug induced lupus, bacterial pneumonia, histosplasmosis and even TB. I have read the horror stories. I have also lived this disease.

I get that the drug can kill me.

I accept that, too.

I will not go down without a fight. I will swim in the lake next year, I will play baseball with my grandsons, and I will boat with my granddaughters. I will love my husband and my children. I will be grateful I am alive.

  There will be a cure, someday. This is a promise that must go out to the young ones. They must have hope.

I'd like to sing and dance, but I don't have the energy, yet. Still, my heart sings.

The cost of treatment runs upwards of 10,000.00 per dose. In the beginning I will receive three infusions, two weeks apart, and if I show no sign of antibody build up those treatments will extend out to every 8 weeks. If somehow that isn't enough it will drop to 6 and then to 4 weeks. If antibodies show up, well, treatment is done.  I will cross that bridge when I get there.

Thank you, again.

Blessings to all.

Louann

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