- Adrenal Insufficiency
- Interviews
Ruty's interview
How did all start?
It started with Orthostatc Hypotention...nausea and nearly passing out on standing.
Do you already have a diagnosis? How long did it take you to get it?
It took two years of doctors, ERs, hospitalizations, and staying in bed, before I got a diagnosis.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I saw an Internist, Cardiologist, ER and hospital doctors, Neurologist, and finally an Endocrinologist. The Endocrinologist gave me a tentative diagnosis within 10 minutes of walking in the exam room.
What has been the most useful thing for you so far?
The most useful is of course the medication. Then joining a Facebook group and hearing from others with the disease.
What have been your biggest difficulties?
My quality of life is not up to par. I cannot make plans. I never know if I will feel well enough for going out.
How has your social and family environment reacted? Have your social or family relationships changed?
It's pretty much non-existent except for special occasions...birthdays, holidays. People do not realize the seriousness of my illness...they always ask if I'm STILL sick. I'm afraid of being around others who may have a virus or other illness. It could be dangerous if I caught it. If I ask if anybody I'm going to be with is ill, they usually say they just have a sore throat or the sniffles and they just won't touch me. So I'm a bit isolated.
What things have you stopped doing?
Anything physical. Leaving the house except to go to an appointment, the grocery, or family gathering.
What do you think about the future?
Surely this isn't my future...surely! I'm hoping I figure out my bio-rhythms, and levels of cortisol I need from moment to moment throughout the day, so I can maintain some sort of normalcy.
So far, which years have been the best years in your life? What have you done during them?
My 40's were the best years of my life. New grandchildren arriving and lots of family activity. I need family activity.
What would you like to do if you didn’t have your condition?
Travel, go to events, be with family, enjoy the day without lifesaving medications that are a guess at best.
If you had to describe your life in a sentence, what would it be?
Right now life is prety much dismal. But I'm newly diagnosed and not knowledgeble enough yet to figure all this out.
Finally, what advice would you give to a person in a similar situation?
Read everything you can get your hands on about your illness. Be your own advocate. Join a support group. Find a doctor who is supportive. Relax.
