"I'm right there in the room, and no one even acknowledges me"I am going to cheat this morning as I have much to do before the dang snow flies.
I have written the following to our pancreatitis group. After reading a few messages that dealt with the parents problems. Their failure to give their own children, who are suffering, the doctors prescribed medications; simply because of the negative implications of 'addiction'.
I know there are many children and adults who will not be getting any relief from their pain due to the ignorance of others.
You know me. I call a spade a spade.
Read on.
XOXO
Anne
**************
There is an elephant in the room.
You know he is here.
Yet we all dance around our replies so very cautiously when we pretend he is not here.
This is my story- Mine, and my daughters.
Having seen CaseyAnne, 22, deal with this illness for 5+ years now, I have also seen her receive massive amounts of drugs to treat it, and the same massive quantities of drugs to keep the pain at bay. (And I learned a very long time ago already that some of the things she has taken would kill a small horse).
It frightened me horribly to see my 4.0 GPA honors student dependent on these dangerous drugs. After all, she is my youngest daughter. She is the one who took the ACT (college aptitude) test at only 11, and received an 18 on it!!!
Even Northwestern and Bryn Mawr wanted her after that. The letters, from all over, just kept coming in!
Then came the dx... "Chronic Pancreatitis"
I think it was there earlier on in her lifetime, just that we never caught it.
Her tummy aches were 'growing pains'.
Or maybe she had a bit of food poisoning.
Perhaps mittelschmerz.
Whatever, it was, it would pass.
Those bouts always did. (Given enough time anyway).
Those tests. The hospitalizations. The flare ups. ALL too numerous to recall offhand. The surgeries that followed, numbering already in the high teens.
All these things brought drugs, and more drugs.
Oh my god, my daughter was an addict!
With that thought process came a very profound sense of failure. How would I explain this?
Yet if you know me, you will respect that the feeling of failure I had didn't last long. There came a profound sense of compassion, and some very literal understanding.
She NEEDED those drugs to get through an hour, or a day. (And damn what anyone else thought they knew)!
She needed those drugs just to live and breathe.
Always responsible, she did not take more, (always making an appointment, or a trip to the ER), when she felt it wasn't enough-
(Those times she is bent like a question mark, and pain radiates from her features, her sorrowful little body bent, -sad, and twisted).
Casey had her TP/AIT last December. We spent Christmas and January in Minneapolis, so far away from home. Naturally her overwhelming and unrelenting pain was gone.
She recovered from that, only to learn that she had megacolon. In April they removed 70+% of her colon.
She is now facing two more surgeries.
She is still on narcotics, (though she has removed herself from the Fentanyl patch).
She is also attending college, and is still receiving great grades.
All this, not only because she has a great attitude, she also has a wonderful pain doctor.
Is she an addict?
Yes she is. And in the most humbled definition of the word too.
Now about that elephant...
I know there are many parents who are reading this, and who cannot get past the negative images of what an 'addict' is.
Get over yourselves already.
That addict is your child.
That addiction is not negative; it is only the way your childs body has reacted to the only way s/he has to relieve the pain and the suffering.
Keep your priorities in order.
When people ask what your child is taking, remember only that it is nobodys business but your own.
Remember too that, (if negative in the least), your own gestures, sighs, attitudes, and words can/will offer the greater pain to your child. Your son/daughter has enough to worry about already.
Do not put more onto them.
That addict is your son/daughter.
Worry less about the pills than you worry about the pain. When that pain is gone then, (and ONLY then), are you/your child to worry about getting away from the pain medicines.
Know that there are no two ways around it.
Know too that it doesn't happen overnight.
I can only promise that it WILL happen.
Admit that the elephant is in the sitting room. But leave him quietly alone.
He will leave in his own time.
Peace and health to everyone during this holy season, whatever your own beliefs are.
Believe in yourself.
More importantly, believe in your child.
XOXO
Anne
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