Beewoman's interview
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How did all start?
It started about 6 years ago with a dry, irritable cough that just wouldn't go away! The doctors couldn't see anything on a lung x-ray and assumed it was GERD. Changing my diet appropriately did nothing so they thought it was asthma or allergies. Long story short, I just felt that it was here to stay and I would just have to learn to live with it!
Do you already have a diagnosis? How long did it take you to get it?
It took about 18 months to get a diagnosis and it took moving to another country for that to happen. They started with blood work, then moved on to scan of liver and spleen and on to bone marrow biopsy where granuloma's appeared. I was then referred to a specialist who had dealt with Sarcoidosis before and asked for a lung scan that confirmed Sarc. I was then officially diagnosed with lung, liver and spleen Sarcoidosis.
For what medical specialties have you been treated? What has been the most useful specialty for your?
No treatment yet
What has been the most useful thing for you so far?
Walking. Keeping relatively fit and getting a good nights sleep.
What have been your biggest difficulties?
My biggest difficulty is walking up stairs or steep slopes. I find that I avoid it at all cost!
How has your social and family environment reacted? Have your social or family relationships changed?
Very well. We don't talk about it much and that helps actually. The whole family knows that I start panting as soon as I walk up a flight of stairs and we all kind of laugh about it!
What things have you stopped doing?
Going up flights of stairs, I take the elevator when possible.
What do you think about the future?
I'm hoping it doesn't get worse and that I won't need to have steroids.
So far, which years have been the best years in your life? What have you done during them?
The best years were around 30-40. I was working out every day for about 90 minutes doing kick boxing, zumba, running and spinning. I also ate a very healthy diet and felt wonderful!
What would you like to do if you didn’t have your condition?
I would love to be able to run up the stairs without panting and wish my knees didn't ache.
If you had to describe your life in a sentence, what would it be?
I feel so lucky to be surrounding my loving friends and family and so glad that I can do what I want, in spite of the heavy breathing :)
Finally, what advice would you give to a person in a similar situation?
I would advise to keep walking and keep moving!
