Comments for Caring Voice Coalition

Comment on Alpha 1: Diagnosis or an Opportunity For Life? by Linda M. Pless

Linda M. Pless — Sat, 18 Feb 2012 22:03:15 +0000

Thank you CVC for all you do for chronic disease sufferers and an especially heartfelt thank you for all you are doing for my son,Matthew. As far as I’m concerned, you are saving his life.

Comment on Walking and Beating by Dennis

Dennis — Wed, 08 Feb 2012 14:52:06 +0000

Thank you all for your kind words and support!!! I’m deeply touched. I’m sorry I didn’t post much early, but I just moved into the century from a flip phone to iPhone . There are some downs having PH, but one of the greatest thing in my life is meeting and talking tol loving supportive people like you all !!! . And thank you CVC, I wake up every morning thinking of you all. Those angels in Richmond………………………..Dennis

Comment on The Stress of Being a Caregiver by Caring Voice

Caring Voice — Thu, 02 Feb 2012 22:33:23 +0000

Hi Teresa. Thank you for sharing your story with us! Being a caregiver is really a lot harder than people know. It is for that reason that we try and highlight just how difficult it is, and also how important it is that caregivers get the rest and recognition that they need. We do hope things improve for you soon, and we will be sure to continue to share stories which help not only those with illnesses but also those that take care of them. We wish you the best!

Comment on The Stress of Being a Caregiver by teresa williams

teresa williams — Thu, 02 Feb 2012 22:20:41 +0000

My husband is only 57 years old, but the last 2 years his body is gradually being attacked by crippling arthrtis, gout and high blood pressure. He gets very frustrated and depressed because he can not do anything without constant pain. His frustration level is very high and he has no patience with anything. Especially me! He has had to go on disibility, but now we are also on a fixed income and when things go wrong, they are much more stressfull. Sometimes I was get overwhelmed by everything.
Thank you for listening.
T. Williams

Comment on A Life With Narcolepsy by carol

carol — Sun, 29 Jan 2012 13:52:04 +0000

Wow. I am overwhelmed hearing a similar story to mine! I thought I was on the island of narcolepsy by myself. Just me and my pillow. I can`t work or plan anything. I have had night terrors since I was a child.

Comment on A Life With Narcolepsy by Ann Austin

Ann Austin — Thu, 26 Jan 2012 07:32:48 +0000

Joyce! The bedrock of Narcolepy Network! She who keeps everything running smoothly from the day to day operations to backboning the national conference each year. How magnificent that you found a good home with Narcolepsy Network and the Network found you! You pave the way for others who read your story and finally understand that their struggles may be sleep related and no matter the timing, there’s always hope for an accurate diagnosis. Your journey helps us believe that with diagnosis and a good treatment plan, a new and rewarding life can be a possibility for most! I’m forever grateful for your open heart, loving wisdom, and the tenacious care you give to the 1000+ members of Narcolepsy Network.

Comment on Walking and Beating by Rita

Rita — Wed, 25 Jan 2012 03:32:29 +0000

Wow! Dennis thanks for sharing, my family has recently been touched by breast cancer and we lost my sister to it. Sometimes when I see the hurt, cancer has left on my family it is hard under any circumstances to ask for support with my PAH. Even though the doctors have explained explictly my condition and the prognosis sometimes I think they live in a certain denial that tragedy could not possibly hit so close to our family twice. I leave it alone but turn to this forum sometimes for support. Thank the good Lord for CVC they have helped me too with outlandish medical expenses and have done so with a loving and grateful to do it spirit. Heres to a cure soon. And many, many thanks to CVC!

Comment on Walking and Beating by Christina Rodrigues

Christina Rodrigues — Tue, 24 Jan 2012 20:20:00 +0000

First… Thank you for your brave service! My four year old daughter has PH. We are holding our 2nd Annual PHun Walk for a cure in Edison NJ (pretty close to Staten Island) on June 3rd. We raised $16,000 last year. My hope is this will bring us one small step closer to a cure so you and my daughter and everyone who suffers from this horrible disease can one day breath easy.

Comment on Walking and Beating by CK McGee

CK McGee — Sat, 21 Jan 2012 06:58:25 +0000

Dennis hang in there this stuff is a hard nut to crack. I am on O2 24/7 and only able to walk from room to room. But with all the help that CVC is providing and with my insurance untold thousands of dollars a month in drugs are provided for which I give thanks In return I help answer requests for help at 4 different web sites on a daily basis. You can do this sitting. I can do that!
If everybody pitches in what they can, maybe we can bat this monster or at least play a tied ball game.

Comment on Caring Voice Coalition Patient Testimonials: Video by JOSEPHINE ALVARADO

JOSEPHINE ALVARADO — Thu, 19 Jan 2012 17:34:04 +0000

The staff at CVC has been very informative and supportive with m Pulmonary Hypertension meds and when I have a ins question or concern my case mgr Raylene is very attentive
I thank the Dear Lord for CVS being there for us in different situations