- Sarcoidosis
- Interviews
Althea's interview
How did all start?
2004 abnormal lung xray. But no one linked it to Sarcoidosis. Then in 2016 I had a breast MRI which showed enlarged lymph nodes and granulomas in my lungs.
Do you already have a diagnosis? How long did it take you to get it?
After my breast MRI I had lung biopsy and was diagnosed right away
For what medical specialties have you been treated? What has been the most useful specialty for your?
Pulmonary, Neurology, Electrical cardiology, cardiology, gastrologist, Endocrinologist.
What has been the most useful thing for you so far?
My pulmonologist. She listens to everything and acts quickly when new symptoms arise.
What have been your biggest difficulties?
How my body is constantly acquiring new diseases. I believe that they are all linked to Sarcoidosis, but seems like every 12 months or so I have an added diagnosis which needs a different type of treatment.
How has your social and family environment reacted? Have your social or family relationships changed?
My family is very supportive, even though they don't truly understand. Love how they look at me and say "wow, you look great, things must be going well" when in reality my insides are in a constant battle with themselves.
What things have you stopped doing?
My main thing is running, now I walk but have issues breathing. I also have days where my limbs are too weak to do the daily routines I use to do so I just don't do them. I do not work, but housework is hard. We have ended up buying a robot vacuum which has helped.
What do you think about the future?
I get sad thinking about the future so I try not too. This is one area where I can get depressed. I look back and the things I could do 10 years ago that I can no longer do. Then I link wow! what will happen to me in the next 10 years? My arms are weak, and even though I do not have grandchildren I think about the day that I will and that I won't be able to hold or do the things I want with them.
So far, which years have been the best years in your life? What have you done during them?
My 20's and early 30's. I lived in India and Australia. We traveled a lot seeing new things and living in new places! These were the best times of my life.
What would you like to do if you didn’t have your condition?
I would continue to live in different countries and travel.
If you had to describe your life in a sentence, what would it be?
"key is adapting to the ever-changing conditions"
Finally, what advice would you give to a person in a similar situation?
Don't give up! Find doctors who care and are willing to listen and believe in you. Try hard not to constantly complain to family and friends. They ask how you are but they really don't wan in-depth details so join a support group. Men and women who have the same diseases as you do! They will listen and not judge.
