Barbara's interview
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How did all start?
In 2002 it started with nerve pain the back of my thigh. Progressed with nerve pain in both legs, fatigue and nerve pain in my back. It took many years and many doctors and too many test to finally get diagnosed in 2011.
Do you already have a diagnosis? How long did it take you to get it?
I was diagnosed in 2011 after the pain and suffering started in 2002.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I have seen multiple neurologist and neurosurgeons and pain management doctors. I was finally referred to a neurosurgeon last year who placed a spinal cord stimulator, that has helped with the pain with about 25-50% of the time.
What has been the most useful thing for you so far?
My spinal cord stimulator has been the most beneficial along with my meds.
What have been your biggest difficulties?
My biggest difficulties have been making my family understand the pain that I deal with on a daily basis.
How has your social and family environment reacted? Have your social or family relationships changed?
My husband has been my hero! From day one he has supported me. As far as my family members, it has been a long road to making them understand the daily pain and struggles that I have gone through and continue to deal with.
What things have you stopped doing?
I used to be an avid crocheter and crafter. I looked forward to and made an extra effort in going to Church every Sunday and enjoyed any extra church activities. However, these days I can't do as many crafts as I used to be able to make, or crochet like I used to. When I get up on Sunday morning and I don't feel like going, I just don't make that extra effort to go. I don't do the going out scene any more. My friends are lucky if I meet them for dinner every once in a blue moon. I used to sit the brand-new, but I only do that on a as needed on a emergency basis now.
What do you think about the future?
I think my future is just living day to day as I can with my hubby. Doing what I can, when I can.
What would you like to do if you didn’t have your condition?
If I was able to I would enjoy playing with my grandchildren and enjoy more time in my craft room. Most importantly, I would go back to work to help support the household.
If you had to describe your life in a sentence, what would it be?
Live life to its fullest and enjoy it day by day!
Finally, what advice would you give to a person in a similar situation?
Find a good doctor that you can trust and one that believes what you are saying and don't give up!
