September #39 : The Circle Game - by Lark Lands, PhD

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Talking 'Bout Their Generation

Youth to Youth

Bargaining Power

Growing Up in Public

Liver Worst

Family Tree

Blood Lines

S.O.S.

To the Editor

And on the 7th Day...

In the Sack

Vertex Vortex

Pump and Grind

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Spin and Needles

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Prime-Time Lives

Don’t Make Me Over

Confessions of a Jerk

Life Lessons

Quality Time

Valuable Kitchen Tool

Better Safe Than Sushi

The Heart of the Matter

To C or Not to C

The Circle Game

Youth on Drugs

Uncertain-teens

Making the Grade

Finger on the Pulses

Fountain of Youth

Where to find it

Reality Check

Leftovers



Most Popular Lessons

The HIV Life Cycle

Shingles

Herpes Simplex Virus

Syphilis & Neurosyphilis

Treatments for Opportunistic Infections (OIs)

What is AIDS & HIV?

Hepatitis & HIV


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September 1998

The Circle Game

by Lark Lands, PhD

How one teen gets by with a little help from her relatives

Upstate New Yorker Lara Stanford (not her real name) has been HIV positive since birth, courtesy of a blood transfusion. Now 15, her status was discovered when she was eight. She soon began taking AZT, but her CD4 cells continued to decline, so the drug was discontinued after 14 months. Meanwhile, Lara’s family kept her on a comprehensive protocol of nutrients and herbs. She did quite well until the age of 12, when fatigue and memory problems began. These worsened over time, eventually leading to severe illness. For several months, Lara couldn’t remember anyone’s name or the day of the week. Formerly a high-achiever, she could no longer read, write or think clearly. She began to have vision difficulties, and balance problems kept her from walking well. Nonstop diarrhea combined with inability to eat resulted in serious weight loss. She was bed-bound for several months.

Her family aggressively sought answers, and finally, NIH researchers diagnosed inflammation in the brain caused by HIV. Lara was placed on potent antiviral drugs (acyclovir and foscarnet) for almost a year. Her family believes that it was the combination of these with complementary therapies—especially nutrients—that ultimately brought her back. Today, Lara still uses the best-of-East-and-West approach. She’s a healthy teenager living her life the way she wants to. And she credits her survival to the circle of family around her:

The Mother: The overall coordinator; very knowledgeable on both meds and complementary therapies; shares with Lara meditation, chanting, yoga, deep breathing, visualization; big believer in the therapeutic power of humor. She says,

Lara has a great sense of humor. She’s very funny. We laugh a lot. It’s good for the soul. We both love music and dance, and often just let loose dancing in the kitchen. “And we’re so appreciative that there are meds now. When there were no other options, we did nutrients and we think that’s a big part of why she’s here today. But it was experimental medications that brought her back to us when she was so ill. Now we look at this as a very holistic experience. It’s obvious that it’s about doing the meds along with getting enough sleep, having a healthy lifestyle, eating a good diet, taking the nutrient supplements, putting it all together. And absolutely enjoying life and being as optimistic as possible.
 
And understand: We had to stick it out through some bad years to get here. Never, never give up, no matter how hard it is. Lara and I are very close. She is a great support to me—encourages me, has faith in my ability to help her, believes in me—all of which helps me to do the best for her. It’s like a circle of love.

The Grandmother: The practical optimist; keeps up on nutrient info; consults regularly with a nutrition counselor, especially when symptoms arise or problems surface; sees to it that supplements are purchased; is there to put out the pills and make sure Lara takes what she needs at appropriate times. Lara’s mother says,

She’s a big part of promoting everyone’s optimistic attitude. She’s an amazing nurturer, and will literally do anything to make Lara’s life better.

The Grandfather: The medspeak translator; a scientist and engineer, he keeps up to date on HIV research—meds, theories and trends—and explains it to the family in understandable language. Lara’s mother says,

He’s a sharply analytical person who’s a great problem solver.

The Father: The passionate supporter; extremely committed to Lara’s welfare; always available to support her; always helps Lara think positively; is very funny and helps her laugh. Lara’s mother says,

He’ll do anything for Lara. He’s fiercely loyal and believes deeply in her ability to survive.

The Brother: The ultimate big brother; greatly admired by Lara, he’s cool, funny, a rock musician who wrote special songs to convey positive messages to her when she was ill; now in college, he remains very supportive, giving gifts that are very meaningful to her. He says,

We all have a lot to learn from Lara. She is a very special being who has transformed all of our lives.

Lara: The most vigilant of all; scrupulous about taking meds and nutrients on schedule; happily participates in all the other therapies; remains optimistic; and laughs a lot. She says,

I will do anything to keep from becoming ill again. I know that the medications have the power to keep me from going back there. When you’ve lost your health and know how horrible that is, you never want to be there again. Fear is a great motivator. Perhaps that’s the advantage of having lived with this your whole life. If I could tell teens one thing, I’d say that they don’t ever want to be where I was. You, too, can get that sick. And it’s a horrible thing—lying in bed with no energy. You’d do anything not to be there again I’m going to live.




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