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In the Spotlight - TASjane

All of our chat hosts are special to us, but TASjane was selected to be featured first because she was our first chat host. Her weekly 2 hour chat on Tuesday evenings is a favorite among our members. Jane has a background in nursing and education and so coupled with her own sleep disorder diagnoses, she is an incredible host. Her caring and compassion is obvious to all who visit her chat. Coupled with her medical background, she is able to provide a unique learning experience to our chat room participants. So generous of her time, TASjane has rarely missed a chat since she began hosting in the year 2000; thank you Jane, for your commitment to our sleep disorder community.

We asked Jane to provide her sleep quest story:

I am honored to be part of Talk About Sleep and to be receiving this recognition.

My experience is like many of the stories that our typical chat participants report. During the 1980's and looking for answers, I kept going to my primary care physician to tell him how tired I was. He gave all the usual responses; “maybe you are working too hard, everyone gets tired.” Next, we went through all the usual tests including blood tests for Epstein Barr Syndrome, tests for Lupus and everything else you can imagine.  This went on for several years.  Then someone at work mentioned Sleep Apnea and how he had gone for a sleep study and his symptoms were so much like mine. I asked my doctor if this could be my problem; he said, “maybe”. He agreed to send me for a sleep study only to find out that I did have Sleep Apnea.

Since I am a nurse, had a managed health care insurance and noting that my primary care physician did not seem very well informed about sleep disorders, I went to the Internet and copied about 30 pages of information. I sent this to my doctor in order to convince him to refer me to a specialist who was board certified in Sleep Medicine.  The referral was made and my new sleep specialist prescribed CPAP and also informed me I had fibromyalgia and Restless Legs Syndrome.

Through my research on the Internet I found a sleep apnea chat room on AOL and started to visit the room.  In my sleep disorder progress I found that my brain didn't function as well as it used to with memory loss and some depression.  The other people in the chat room seemed to understand what I was going through and many times would pull me through difficult times.  As most people who suffer from this disorder know, your family and friends just don't understand what you feel or what you are going through.  The Internet chat was such a big help to me.  This is when I met Tracy Nasca, who eventually became one of the founders of Talk about Sleep. We both had come to the internet to learn about our own sleep disorders. We found the information and support we so desperately needed. Over time, we both became chat hosts at AOL as we realized the benefit of online support. We were both aware of the lack of information available to patients and felt good about giving back to a community that had helped us. The experience was incredible. It was a great way to help others and at the same time keep our own sleep education moving forward.

A few years later, Tracy told me of her dream to start a sleep disorder internet service and include a chat network.  Tracy asked me if I would be interested in joining TalkAboutSleep.com and I agreed to be part of her dream.

I believe that all of us are put here to be of service to others and I have met many angels who have helped me along my path. Being part of Talk About Sleep was just one way I could help be of service to others who have gone through much of the same thing that I had in my early treatment days.  Unfortunately, medicine today is not as patient orientated as it should be. Often, the patient feels rushed or intimidated when talking with their doctor when they have problems or questions about their health.  Talk About Sleep chats are not a substitute for a doctor but it is a wonderful and needed support system that attempts to help people that feel overwhelmed, depressed and just so tired that they can't even think of the right questions to ask their doctors. 

My only disappointment is that more people don't know about Talk About Sleep and make use of the services that it offers.

 

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National Fibromyalgia Association
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