It's no wonder TASokie found CPAP compliance so quickly, I have never met anyone who had such a determination and positive attitude as this wonderful woman who proudly calls herself TASokie! I'll bet you can guess where she hails from! Okie found talkaboutsleep.com early in 2000 when she began searching for answers to her profound sleepiness and newly diagnosed OSA condition. The educational material on our web site led her to our chat rooms for additional information. She was not shy in asking questions and was eager to share her experiences with other OSA patients in the chat room. She found CPAP success quickly and because of her eagerness to help others, she was asked to join our chat host team in 2001.
Although she might be thought of as a typical sleep apnea patient, she is far from it. CPAP treatment was so successful for her, she began educating other family members and co workers about sleep apnea. I've lost count as to the number of people who can credit Okie with their own apnea diagnosis and treatment but I know it includes a dozen family members including her husband and children. She has also enlightened over two dozen co-workers, friends and patients who are cared for by the agency she works for – all now using CPAP. That number grows each year.
You cannot see her genuine smile or the sparkle in her eyes in the chat room when she hosts her Thursday evening apnea chat, but you can feel it. You know she is knowledgeable, you know she is compassionate and caring and you know you can count on her for encouragement. A busy career woman, she still finds time to volunteer week after week as part of our TAS family of chat hosts. TASokie, we salute you! - Tracy Nasca, Vice President, Talk About Sleep
We asked Okie to provide her story:
My fist cpap was delivered to my home, an old Tranquility Quest set to 18 cm h2o, a Fisher & Paykel humidification starter kit, chin strap and ResMed Mirage mask. Everything was zipped in a generic case. Nothing was in original packaging, nor did any piece of equipment have a user manual or instructions. The delivery person set everything up on my kitchen counter. He connected the cold Passover humidifier while explaining that my insurance company would not approve a heater base until I tried to use cold water for at least 6 months. He poured in the distilled water, and adjusted the mask. He mentioned he had used a “special” hose than was lighter weight than most, because it was better. He showed me the ramp and on/off switch, got the signatures for my insurance papers, and left. All of this took place in under twenty minutes.
They must have been pleased to get my prescription while they were cleaning off their shelves. I was a brand new, gullible, sleepy person to unload their remaining old inventory on. I now realize that not only was everything I received used, which is why there were no manuals, but the “special lightweight hose” was actually cheap disposable tubing that would soon be splitting and leaking!
The deliveryman had pointed to a sticker on the top of my machine, with a phone number to call if I had problems or questions. The following week, I tried to call with questions, only to hear from a recorder they were no longer in business! So much for patient support or follow-up! I was alone with my machine.
It was June of 2000, the very month that Bill and Tracy Nasca and Dr. Jim O'Brien were launching TalkAboutSleep.com, an information packed, patient support website. I was back to the Internet, determined to learn more about my condition and equipment. I could spend hours reading general information, without always finding the exact answer I needed, and then eureka, there they were! Nightly chats with real live friends, who would patiently listen, answer my questions and offer tips that really worked! People who actually CARED if I succeeded with the treatment I needed! A light sense of humor made the chats enjoyable; solid practical information made them valuable. I am ever grateful that when the medical system failed me, TalkAboutSleep.com was there with the information and support I needed to succeed.
Over time I found myself repeating those tips to others who were just beginning their treatment, remembering how much those little nuggets of information had helped me. A year later, I was invited to join the volunteer staff and began hosting chats on Thursday nights, still learning, while meeting new friends from all around the world. Seven years later, I still look forward to weekly chats with old friends, and meeting new ones as we all share the frustrations and successes of living life with sleep apnea.
So whether you are a veteran CPAPER with lots of answers to share, or a newly diagnosed person with lots of questions, please drop in on Thursday night to say “Howdy”. We would love to hear how you are doing. We will be saving you a chair. Ya'll come now, ya hear!