A Ankylosing Spondylitis interview , Crohn's disease.

Kirsten's interview


How did all start?

Leg and tailbone pain as a child Knee pain as a teen Severe sciatica and tailbone pain at twenty. Became more severe from then onward.

Do you already have a diagnosis? How long did it take you to get it?

I was diagnosed at thirty, x-rays and CAT scan showed completely fused SI joints and spine that looked like a "65 yo with advanced arthritis"

For what medical specialties have you been treated? What has been the most useful specialty for your?

Primary Neurologist Orthopedic Surgeon PT & OT Rheumatologist Therapeutic Massage Chiropractor Psychiatrist Pain Specialist Pulmonologist Hematologist Gastroenterologist

What has been the most useful thing for you so far?

Most useful have been Rheumatologist, Pain Specialist and Theraputic Massage Hematology and gastroenterology. I've had success with IV Iron and Humira has greatly improved my Crohn's. Prior to my 20s

What have been your biggest difficulties?

Pain, fatigue, lack of mobility due to structural changes, loss of height and chest expansion

How has your social and family environment reacted? Have your social or family relationships changed?

My world has b come much smaller as I don't have the energy to do the things I'd love to do. That includes spending time with loved ones when I'm too sore or exhausted. I'm very cautious about being driven by others as a little fender bender is an inconvenience to them, but could be life changing for me.

What things have you stopped doing?

Many physical things also social activities.

What do you think about the future?

I pray that new treatments are available to aid my body so that old age isn't agony.

So far, which years have been the best years in your life? What have you done during them?

Prior to my twenties, I was as physical as possible My years raising my children as they kept me going during my worst times.

What would you like to do if you didn’t have your condition?

Hike, camp, swim I would have had more children and wrestled with them. Chased them and done plenty of physical activities that I had to avoid.

If you had to describe your life in a sentence, what would it be?

Physically very difficult, older than my years by far Blessed with my husband, children and grandchildren.

Finally, what advice would you give to a person in a similar situation?

Don't give up looking for a correct diagnosis, mine was incorrect for 6 years and it was detrimental. Don't give up finding something that helps you keep moving. I took part in the final double-blind study for Enbrel back in 2001


Sep 8, 2017

By: Kirsten

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