C.j.'s interview
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How did all start?
Coughing and shortness of breath. Even just walking a couple of steps. I lost my voice because I couldn't breathe and talk at the same time. I couldn't drink and swallow at the same time either. It would come up through my nose.
Do you already have a diagnosis? How long did it take you to get it?
I was diagnosed in Oct of 2013. It took almost 3 years for a diagnosis.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Family Medicine, Pulmonology, Rheumatology, Hematology, Gastroenterology, Urology, Gynecology, Cardiology, Electrophysiology, Ophthalmology, Nephrology, Orthopaedic surgeon.
What has been the most useful thing for you so far?
My oxygen and prednisone.
What have been your biggest difficulties?
Lugging my oxygen around, weight gain, developing diabetes, and cataracts.
How has your social and family environment reacted? Have your social or family relationships changed?
I don't have much family support other than my mom. My biggest supporter is my best friend.
What things have you stopped doing?
Working. Going out as often as I'd like too.
What do you think about the future?
That it's very uncertain and scary.
So far, which years have been the best years in your life? What have you done during them?
I feel like I haven't really had any good years. I feel like life just passed me by. I never got married or had kids. Two things I desperately wanted to do in life.
What would you like to do if you didn’t have your condition?
Go back to work, date, be financially independent again.
If you had to describe your life in a sentence, what would it be?
It could always be worse.
Finally, what advice would you give to a person in a similar situation?
Count your blessings everyday.
