Rhonda's interview
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How did all start?
Pain climbing stairs, inability to sit through meetings, went from chronic diarrhea to chronic constipation, slight slopes hurt to walk. Standing, sitting, walking hurt to craziness. Feels like a sharp rock pressing your tailbone. Exhausted all of the time.
Do you already have a diagnosis? How long did it take you to get it?
Took me a year to figure out what was wrong and to find Dr. Feigenbaum. Other doctors were no help. Tried three orthopedic doctors before I read my MRI report and looked up the terms online.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Tried orthopedic ( three different doctors) Pain management Neurosurgeon My cysts have been drain and wrapped. It helped some but the pain is still severe and chronic. The recovery from the surgery has been years long. It created new issues. It was worth a try. It works well for some. Pain management has been my best solution. Activity exacerbates it. But you have to do things or go crazy
What has been the most useful thing for you so far?
Having confirmation that it wasn't all in my head.
What have been your biggest difficulties?
People don't understand the devastation this causes. They think you just need to exercise to fix it.
How has your social and family environment reacted? Have your social or family relationships changed?
I don't do anything I used to do.its painful and exhausting. I deal with a lot of hopelessness. It took hubby a long time to understand my condition
What things have you stopped doing?
DYI, motorcycles, dancing, gardening, anything physical. Less than an hour on my feet, sitting, walking, standing or even riding in a car causes pain and exhaustion. Laying down eases the pain.
What do you think about the future?
bleak
What would you like to do if you didn’t have your condition?
travel, ride motorcycles, dance, build things, garden
If you had to describe your life in a sentence, what would it be?
Painful, exhausting and boring
Finally, what advice would you give to a person in a similar situation?
Try surgery if its feasible. There's A chance it will help
