- Ankylosing Spondylitis
- Interviews
Sal's interview
How did all start?
Back pain, joint pain (hips, knees, shoulders, wrists, etc.)
Do you already have a diagnosis? How long did it take you to get it?
Yes. It’s took ~1 1/2 years
For what medical specialties have you been treated? What has been the most useful specialty for your?
Rheumatologist ran a myriad of blood tests and imagery to determine and DX that I had AS
What has been the most useful thing for you so far?
Remicade was prescribed and slowly but surely I found relief to the point where I could return to work and lead (pretty much) a normal life again
What have been your biggest difficulties?
Accepting physical limitations as I was a very active and athletic person; I lost 37 pounds (all muscle mass no fat)
How has your social and family environment reacted? Have your social or family relationships changed?
Yes. Fatigue hinder me. I was a very outgoing person and loved being with family and friends. The fatigue really effected my social activities. The other huge factor I dealt with, accepting limitations; again I was a very athletic and active person, so it took a while to ‘alter my activities’; hence the struggle with accepting this disease
What things have you stopped doing?
Until the treatments started working I stopped virtually all activities as the weight/strength loss precluded many things. Once I started to respond to the treatment I started resuming almost all activities but to a lesser degree
What do you think about the future?
Hmmmm, good question! I guess I have to say, I’ll take the good days and enjoy the heck out of them :-)
So far, which years have been the best years in your life? What have you done during them?
Most of the time (after treatment was ‘dialed in’) I’d say all years since have been a blessing
What would you like to do if you didn’t have your condition?
Pretty much the same as I am now, just more of it
If you had to describe your life in a sentence, what would it be?
Taking the good with the bad and making it work from day to day. Rest when you need to and enjoy when you can
Finally, what advice would you give to a person in a similar situation?
Find a GOOD rheumatologist! I know that easy to say but I’ve relocated a few times and my first rheumatologist was ‘the man’ finding someone who could understand, not just my symptoms, but me on the whole...what I like to do versus can do and focusing on setting milestones to realize that. I’m telling you, the rheumatologist is ‘key’
