HockeySwimMom78's interview
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How did all start?
Fevers at night, then day and night, extreme fatigue
Do you already have a diagnosis? How long did it take you to get it?
Yes, diagnosed with AOSD in September 2017. Symptoms began October 2016, numerous doctors, rheumatologists, oncologists, infectious disease, finally saw Rheumatologist 2 hours away Dr. Daniel Wallace and he diagnosed me.
For what medical specialties have you been treated? What has been the most useful specialty for your?
My rheumatologist and my Internist work amazingly well together (especially because rheumatologist is 2 hours away).
What has been the most useful thing for you so far?
Actemra and Colchicine worked well for about 4 months then after going off Actemra for 3months being treated for pneumonia, when I returned to injections the Actemra did not control the fevers anymore. Began Kineret 3weeks ago, seems to be improving fevers, but inflammation still pretty bad.
What have been your biggest difficulties?
Having to go off Actemra for pneumonia, then UTI. When I went back on it no longer worked.
How has your social and family environment reacted? Have your social or family relationships changed?
Sometimes activities harder but I usually push though so no significant impact. Extremely supportive husband has made the extreme fatigue more bearable because he picks up my slack!
What things have you stopped doing?
Some days choose not to be as active as usual, however haven’t really stopped anything in particular.
What do you think about the future?
Positive outlook, my doctor will figure this out and relieve my symptoms!
So far, which years have been the best years in your life? What have you done during them?
All! Life is precious! I have two wonderful kids, both in the military, and an amazing husband! My friends and family are the most important things in my life!
What would you like to do if you didn’t have your condition?
Haven’t been that limited yet.
If you had to describe your life in a sentence, what would it be?
It’s a wonderful life!
Finally, what advice would you give to a person in a similar situation?
Stay positive, seek treatment until you are confident in your doctors. Treasure your family and friends and remember that life is precious so enjoy every minute!
