Tarshela's interview
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How did all start?
Started in my ears. An ear infection that wouldn’t go away. Burning throbbing pain on outside of ears like someone hit me with a hammer
Do you already have a diagnosis? How long did it take you to get it?
I was diagnosed 3 months after first symptoms because we already knew about RP. My brother passed away from RP back in 2008.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I have a primary doctor that works together with my rheumatologist, ENT, cardiologist, optometrist and orthopedic to keep me pain free. My Primary, Rheumatologist and ENT have been the most useful for my disease.
What has been the most useful thing for you so far?
The Facebook RP group page
What have been your biggest difficulties?
Ever since my first symptoms It’s been constantly on my mind. Not knowing if RP will just take control and take over my body
How has your social and family environment reacted? Have your social or family relationships changed?
Yes it’s changed because I dont know how I’m going to feel from one day to the next.
What things have you stopped doing?
I’m taking autoimmune suppression medications so no swimming in public pools, lakes and oceans due to bacteria
What do you think about the future?
Hope I can live to see all my grandchildren
So far, which years have been the best years in your life? What have you done during them?
30’s it’s when I felt the best health wise
What would you like to do if you didn’t have your condition?
I would do what I’m doing now... Live life to its fullest and do as much as I can but I would have more strength and energy to do it.
If you had to describe your life in a sentence, what would it be?
I want to enjoy every minute I have, take in all the senses, feel every emotion and love with all my heart.
Finally, what advice would you give to a person in a similar situation?
Find a primary doctor that is willing to help you and communicate with all your specialists. They need to work together as a team
