2. Narcolepsy
3. Interviews

Teri's interview

How did all start?

Falling asleep in the shower, while standing up, in the middle of conversations, behind the wheel stopped at a red light or in bumper to bumper traffic, face down on my keyboard at work or home.

Do you already have a diagnosis? How long did it take you to get it?

Yes. Several years ~ but partially because I didn’t even know what Narcolepsy was.

For what medical specialties have you been treated? What has been the most useful specialty for your?

For all of my conditions. Narcolepsy. I’ve learned so much about it that I can help effectively myself (as much as is possible) even though my body won’t tolerate any of the Narcolepsy medications on the market.

What has been the most useful thing for you so far?

Winning my disability case!

What have been your biggest difficulties?

Everything!

How has your social and family environment reacted? Have your social or family relationships changed?

My immediate family have reacted negatively (except my Mom). They don’t really believe anything is wrong. Most of my diseases are “invisible” so I mist not really be sick, according to them. My friends and extended family are my support. My favorite tee shirt says: “I don’t look sick? Well, you don’t look stupid! Looks are deceiving. Narcolepsy Awareness.”

What things have you stopped doing?

Working; traveling; socializing as much; driving more than 30 minutes at a time and never in rush hour (dr imposed driving limitations)

What do you think about the future?

Looks like it won’t change much but that’s OK. I’m happy.

So far, which years have been the best years in your life? What have you done during them?

2014 to 2017: stopped working; fighting for disability; lost my Mom to Lupus, COOD and Frontotemporal Dementia after living with her 7 years and spending almost every minute together the last 3 years; moving; cleaning out her house; winning my disability case; learning how to live without my Mom, my heartbeat and best friend.

What would you like to do if you didn’t have your condition?

Travel and work until I had s great nest egg for retirement. Socialize more.

If you had to describe your life in a sentence, what would it be?

Chaos until this last year

Finally, what advice would you give to a person in a similar situation?

Invest in your retirement early! Research your conditions and know the right questions to ask your doctors. BE YOUR OWN ADVOCATE! GET ANOTHER DOCTOR IF THEY DON’T LISTEN TO YOU! Research what it means to go out on Social Security Disability before doing anything else. Understand all the ramifications of what decisions you make and when you make them.

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Narcolepsy is only one of many conditions

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