[My] Life in Wisconsin

To All "Addicts"

"I'm right there in the room, and no one even acknowledges me"



Good Morning All...

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



** Comments are briefly closed. Please comment on following post...


17 comments:


  1. I can only hope that you can know the point I am trying to make.

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  2. Got it, and completely understand. My Mom has nueropathy (sp?) and other diabetic related pains. She too is addicted

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  3. When you are in excruciating daily pain, what other alternative do you have? Relieving pain is what pain medications were designed to be used for.

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  4. You have made excellent points there Anne. I so hope that it got through to some of the other parents...

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  5. Even If you have a toothache and need dental surgery...you need something for pain. You run that risk of addiction at those times too. Even if you play tennis and come down with "tennis elbow" or blow out your knee doing a favorite past time such as jogging. You still run that risk of addiction even if it is only to an over the counter medicine for pain.

    We seek relief. Pain, especially a constant pain, can be quite overpowering. I'm sure all of us can remember the days when we "felt good." Can we help it if we seek to obtain that on a constant basis? Heck...I have even considered taking up smoking Miss MaryJane. And I don't even smoke! I hear it comes in a capsule form but you know me....I don't do well with swallowing pills either. But I would consider a brownie or two laced with it! Am I too old to become a "pot head?
    Pain will make us resort to many things for relief.

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  6. wow, good letter hun!! hopefully it will open up people's eyes.

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  7. I think you said all of this well. Dont know that I can add to..


    I have been so blessed with the health of my family and myself. May all who have not been so blessed know that I do include you in my prayers.

    Big hugs sweety!

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  8. I, personally, don't see Casey as an addict. An addict, IMHO, is one who takes the pain meds to "feel good". Casey takes them to be able to live. When she no longer needs them, she will put them down. An addict cannot put them down. Casey and her wonderful Mother is/are beautiful strong people and will get through this however they can.

    OXOX,
    Snotball.

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  9. amen.

    There are addictions and then there are addictions.

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  10. My response will be in todays post... Thank you to all who replied/commented.

    XOXO
    Me

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  11. I totally agree Sweet Annie, I went through this with my sister Margie, I held her little body while putting drugs into her iv I squeezed her morphine pump for her when she just didnt have the composure to do it she was in so much pain, I even lit up the joint I gave her to feel like eating at least a piece of toast or candy, I believe an addiction is when you take any kind of drug when not needed and will then steal, lie, hurt to get it again.......not when your loved one is in so much pain the only thing your worried about is being able to stop it.

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  12. And you did, never explain anything that the love of a mother endures..

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  13. Dear Sweet Patricia;
    I don't honestly know how to answer your question in its entirety without retelling of our whole journey with this awful disease.

    Personally, I have gone TO/THROUGH hell and back (Literally, 100's of times).
    I have cried.
    I have prayed.
    I have tried to make deals with the devil himself.
    I have gone from one extreme to the other. (Again, literally 100's of times).

    And yet I myself have become the 'dependent' one-
    Simply even by the number of postings that I wrote privately to a friends on this site- and did so privately, so that Casey would not worry about me after already worrying about herself.

    I became dependent upon all of my friends.

    And I even dared to get mad.
    That, in and of itself- the outward anger- is what finally keeps my head clear enough to deal with all she went through- (And with all she continues to go through).
    Perhaps 'mad or "anger" isn't the proper word. But it is the first words that came to mind- after the frustration.

    it is bootstraps it is faith, and it is friendship-
    it is a dogged determination, that the rest of the world be damned, I swore that I would do anything for my child that I could do.

    I think I learned how to even beg. No class or pride in that- But those things be damned too-
    I begged for people, mostly doctors, to even just listen- Not to me- but to what my child was telling them!

    And I think I learned a lot better how to love and care for many many others in the process.
    (Just that I might have ignored a few things of my own that might have kept me out of this wheelchair I sit in now). hehehe

    Would I go through this all, all over again?
    In a heartbeat.
    Even if it wasn't "for" my own flesh and blood.

    The post above is continued within this link
    http://flintville.multiply.com/journal/item/914

    But these 2 blogs were (I think) all I ever wrote about people denying their children necessary drugs- And only because of one little word- and fear of what somebody else might think. What the heck sense does THAT make anyway?


    There are many entries about "caseysick" in my tag list on my top page.
    Entries too- "medical rag" where we had some real negative experiences with doctors, pharmacies, and nurses etc. (of the know-it-all variety).
    Posts about "sutherland" -who is the ONE doctor then, that finally LISTENED to my daughter.

    But what I went through? Or maybe what I still go through? I just don't know.
    I learned how to rely on things that I could not control.

    I am so sorry Patricia- But as you can tell, I am just not sure how to answer

    XOXO
    Anne

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  14. I wrote all of the above to you without realizing that you answered your own question with your own last 6 words.

    "the love of a mother endures"
    You have said it all, already.

    XOXO
    Me

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