Julie's interview
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How did all start?
In 2013 with blood in my eye and sever head ache but not like anything I've had before.
Do you already have a diagnosis? How long did it take you to get it?
Yes. It took about two weeks
For what medical specialties have you been treated? What has been the most useful specialty for your?
Neurologist; Vascular Surgeon and Opthamologist
What has been the most useful thing for you so far?
Seeing my massage therapist who works on moving the cranial bones
What have been your biggest difficulties?
Finding a doctor who can help
How has your social and family environment reacted? Have your social or family relationships changed?
I find that people don't understand the condition. They get fed up with you telling them your not feeling well. My husband is a funny man so it helps to have someone in your life you can keep you smiling. I have a super awesome best friend!
What things have you stopped doing?
Strenuous activities; eating out; traveling in aircrafts.
What do you think about the future?
I'm able to work right now but I wonder how much longer it will be until I can't work anymore.
So far, which years have been the best years in your life? What have you done during them?
No one particular year comes to mind. I cherish each year. I have two teenage children and a wonderful husband; I've travelled quite a bit in my life and seen lots of interesting things.
What would you like to do if you didn’t have your condition?
Travel more
If you had to describe your life in a sentence, what would it be?
Even with this disease, my life is enriching, joyous and in constant motion - it tries to stop me but I just find different ways of doing things.
Finally, what advice would you give to a person in a similar situation?
Try and focus on what's working well and be your own advocate. You will need to educate yourself as those around you will not know.
