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Feb 24 2011 Struggle for diagnosis-meds+self care

Posted Feb 24 2011 8:31pm

wake up gophers The mystery - WHAT is happening to you? 
Getting a diagnosis can sometimes take years,
 you think you are only getting older andweaker…isn’t that natural? 
Should you complain about it?  
YES!  Every little change in your habits can bea clue for the doctor.   Finally gettingdiagnosed with a progressive lung disease(or any other disease)  is a shock, a roller coaster ride of emotions!   Then as weak and deconditioned as you feel, you findYOUhave to learn about
your particular disease and how to cope with it.You have to take charge and push for trying medicines that might work better for you, and on top of that, you are told to “exercise”.

 I don’t know, would it be better if they said move more and work your way towards
 exercising?  No matter what, ‘it’ IS hard to do.  It takes time to accept the fact you
 have this ‘thing’, and can’t get away from it.  You have to decide what you want to do. 
I decided the supplemental oxygen was so helpful I stuck to using it and thankgoodness I believed the respiratory therapist that it would work eventually to improve my fitness and ability to recover good functioning in daily life. 

It was presented to me as “the only way to go”.  And I decided to work hard to become “normal” again…and NOW after 8 years, sometimes I forgetI am notnormal…when Ihit the end of my oxygen tubing, or when I have to remember to come home before mysupplemental oxygen portable is empty. This next video  from a COPD International’snewsletter is inspirational.  understanding the power of gratitude can change life…a short movie
 from Learning to Dance in the Rain. The words, photographs, music are beautiful!  
  http://www.danceintherainmovie.com/  

Pete Wilsons websiteMore on anything you could possibly want to know about oxygen from a patient's perspective http://www.portableoxygen.org/  and yet another  POC comparison chart on  his site
 
http://www.portableoxygen.org/POC_Comparisons1-15-10.pdf 

 
The ATS Patient information series, links that were chopped off from Feb 19 th page. ifindex below
does not click go here to get the clickable list
http://patients.thoracic.org/information-series/index.php   ,

Acute Respiratory Distress Syndrome (ARDS)

Alpha-1 Antitrypsin Deficiency

Arterial Catheterization

Asthma and Exercise for Children and Adults

Central Venous Catheter

Chest Tube Thoracostomy

Chronic Obstructive Pulmonary Disease (COPD)

Congenital Central Hypoventilation Syndrome (CCHS)

Disposable Respirators

Fiberoptic Bronchoscopy

Influenza - "The Flu" 2008-2009 Season Update

H1N1/Swine Influenza (Swine Flu)

Hermansky-Pudlak Syndrome

Lung Function Studies: Methacholine or Challenge Test

Lymphangioleiomyomatosis (LAM)

Mechanical Ventilation

Medicines Used to Treat COPD

Obstructive Sleep Apnea in Adults
Obstructive Sleep Apnea In Children

Occupational Lung Diseases

Oxygen Therapy

Oxygen Therapy for Children

Palliative Care

Pulmonary Function Testing in Children

Pulmonary Function Tests in COPD

Pulmonary Function Tests

SarcoidosisSigns and Symptoms of COPD

Sleep Studies

Staging of Lung Cancer

Surgery for Chronic Obstructive Pulmonary Disease

Thoracentesis

Use of a Tracheostomy With a Child

Using Your New Inhaler With HFA Propellant

What is Interstitial Lung Disease in Children?

What is Lung Cancer?

What is Vocal Cord Dysfunction (VCD)?

"Lyn"
(Roxlyn G. Cole) Littleton, CO 
roxlyngcd@comcast.net
Pulmonary rehab and AFTER  http://www.wellsphere.com/roxlyn/92052/posts
 or  http://tinyurl.com/4tdzvsl

 
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