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Author Topic: When the diagnosis is scary  (Read 1793 times)

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Offline J.R.E.

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  • Posts: 6,962
  • Joined Dec-2003 Living positive, since 1985.
When the diagnosis is scary
« on: January 14, 2007, 11:20:40 AM »
When the Diagnosis is Scary---By Jessie Gruman,

This article appeared today in the Parade section of the Sunday Newspaper. I thought it was a pretty good article. There is certanly information here that applies to all.

EDITED 1/16/07   This article became available online today (Tuesday) You can click on the link below, to read entire article.

http://www.parade.com/articles/editions/2007/edition_01-14-2007/Diagnosis

I am only able to give bits and pieces of it:

When The Diagnosis Gets Scary :

The first 48 hours after you or a loved one receives a serious diagnosis can be terrifying. Receiving bad health news sparks great personal upheaval. Some people rage against the unfairness while others wither from sadness.  Some people lose their faith, and others find it.  Some are torn between their fear of pain and their fear of death.  Families are wracked by the threat of loss.  It is a time, when nothing is certain, and the future looks dark.

But no matter how devastating the diagnosis, critical actions must be taken in the short window of time following it.  Among them : Learning about the conditon and it's treatments, deciding whether to involve others, finding the right doctors and hospitals seeking others opinions about what is wrong and what to do about it, managing ones work life, paying for care, and finding relief. But first you have to deal with the initial shock.


PROTECT YOURSELF :

This is a crisis. Treat it as one. Don't try to go on ,as if nothing is happenning to you. Stay home from work at least 48 hours--and cancel your your social engagements, until your feet are back under you. If you exercise, keep it up--if you feel like it. If you don't exercise regularly but feel closed in or agitated, go for a walk. If nothing else,it will remind you that the world is carrying on in spite of your news. Eat--even if you are not hungry; you don't need a hunger headache. Breath.


EDUCATE YOURSELF :

During the first days, stop reseaching your diagnosis on line if it is confusing or frightening, unless you have an acute emergency, you have some time to collect and digest that information.

But over the next few weeks, you WILL need to learn about your condition, it's probable course and how to manage its progression. Some people prefer to know only the basics, others want comprehensive knowledge.

These are some of the questions you should ask :

1. How does this disease or condition affect the body ?

2. What causes this condition to progress or get worse?

3. What tests and and procedures are commonly used to determine the course of treatment?

4. What effect does each treatment have, generally? Does it slow down its progression? How much?

5. What complications and side effects are common and uncommon- with each treatment.


Once you know the answers to those questions, discuss with your doctor how this condition affects you specifically, and the best ways to treat it, given your age, sex, and medical history.

Designate a partner :

Designationg a partner is a good idea, because the distress of receiving a serious diagnosis can affect your ability to listen and to understand unfamiar, tecnical information; a partner can write it down to be revisited later.

Its hard to question or disagree with a doctor, who seems to hold your life in his or her hands; a partner can request clarification and ask hard questions. Having someone do this, steadies the person who is ill and makes him or her feel less isolated.



This was just part of the article in the Parade Section of todays ( Sundays ) newspaper.



Ray
« Last Edit: January 16, 2007, 06:37:17 PM by J.R.E. »
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of DEC 9th, 2013,  t-cells are at 437 Viral load  <40 .

 Current % is at 16% (L)

  
 62 years young.

Offline bear60

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  • Posts: 4,104
Re: When the diagnosis is scary
« Reply #1 on: January 14, 2007, 11:22:52 AM »
Ray....You beat me to it.  I just finished reading that and of course thought about the conversations on AIDSMEDS. So, thanks for posting it!
Poz Bear Type in Philadelphia

Offline Christine

  • Member
  • Posts: 1,069
Re: When the diagnosis is scary
« Reply #2 on: January 14, 2007, 11:48:42 AM »
Hi Ray,
Thanks for posting the article. It was good, and accurate.
Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline emeraldize

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  • Posts: 3,260
Re: When the diagnosis is scary
« Reply #3 on: January 14, 2007, 02:02:25 PM »
Thanks Ray!

Offline Blixer

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  • Posts: 712
Re: When the diagnosis is scary
« Reply #4 on: January 14, 2007, 02:03:46 PM »
Those of us who have been there can sure identify with what the article has to say.  I recall my diagnosis just over a year ago.  I did fine the first few hours.  Then I was a wreck.  But I found some discussion forums (ultimately this one) and it made a big difference.
David
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline Eldon

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  • Posts: 2,664
Re: When the diagnosis is scary
« Reply #5 on: January 14, 2007, 07:41:04 PM »
Thanks Ray!

Offline Lisa

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  • Formerly known as sweetieweasel/Joined Nov. 2004
    • http://www.myspace.com/lisanowak58
Re: When the diagnosis is scary
« Reply #6 on: January 15, 2007, 10:40:08 AM »
I'd like to say thank you too, and also vote this post to be stickied! It would be great for the newly inducted to have this advice as a guide.
Good job Ray.
No Fear  No Shame  No Stigma
Happiness is not getting what you want, but wanting what you have.

Offline JPinLA

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  • Posts: 148
  • Cheers!
Re: When the diagnosis is scary
« Reply #7 on: January 15, 2007, 12:45:55 PM »
I agree with Lisa..it's a great article and culd be very helpful for the new folk (like me!).

Thank you!

JP
11/06 - Diagnosed - VL/5784 & CD4 326
2/07 - VL/6000 & CD4 290 2/07
3//07 -Began Truvada/Viramune 
4/07 VL/undetectable and CD4 320 22%
7/07 VL/undetectable and CD4 286 22%
11/07 VL/undetectable and CD4 302 26%

Offline sweetasmeli

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  • Love what you are...
Re: When the diagnosis is scary
« Reply #8 on: January 16, 2007, 01:24:11 PM »
Bump!

Some sound advice here Ray. Well spotted!
Maybe this could be copied and stickied in I Just Tested Poz forum too...?

Melia
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(,,,_ ,,,)/   (,,,_ ,,,)/ Cats rule!

The difference between cats and dogs is that dogs come when called, whereas cats take a message and get back to you.

Yeia kai hara (health and happiness) to everyone!

Offline swede_dish

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Re: When the diagnosis is scary
« Reply #9 on: January 16, 2007, 01:32:53 PM »
Meli...I was JUST typing that when I looked up and saw you did! =)
"I married a German. Every night I dress up as Poland and he invades me. "
-Bette Midler

Offline sweetasmeli

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  • Love what you are...
Re: When the diagnosis is scary
« Reply #10 on: January 16, 2007, 01:34:51 PM »
Meli...I was JUST typing that when I looked up and saw you did! =)

Ssshhpoooooky!!! ;D
/\___/\       /\__/\
(=' . '=)    (=' . '=)
(,,,_ ,,,)/   (,,,_ ,,,)/ Cats rule!

The difference between cats and dogs is that dogs come when called, whereas cats take a message and get back to you.

Yeia kai hara (health and happiness) to everyone!

 


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