Tammie's interview
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How did all start?
I started getting horrible neck pain and numbness in my fingers. I started getting brain fog, and the pain kept moving and spreading. I wasn’t sure what was wrong. I had had multiple medical problems, it wasn’t until this past year that they discovered a connective tissue disorder that made sense of all of my problems
Do you already have a diagnosis? How long did it take you to get it?
I was diagnosed in 2014. The search began when I was a child suffering from migraines. The doctors just always said it was stress related. And it wasn’t until the back pain became so horrendous and I lost feeling in my fingers that they decided to do an MRI and that’s when they found the problem.
For what medical specialties have you been treated? What has been the most useful specialty for your?
My disease affects every system in the human body. I have seen everyone from a neurologist to a urologist. The best doctor I have had is a neurosurgeon. He is one of the very few that understand what I go through. He has been a huge advocate.
What has been the most useful thing for you so far?
Having to be on narcotics unfortunately. I have tried everything else to try to combat the nerve pain and muscle wasting. Also using meditation to try to slow the mind. Having to reinvent myself as this disease progresses.
What have been your biggest difficulties?
Not having the support of friends and family. It’s been very daunting. When people don’t understand and don’t want to be bothered with a rare disease. There seems to be a stigma attached.
How has your social and family environment reacted? Have your social or family relationships changed?
Every relationship has been impacted in my life. My marriage fell apart, relationship with friends have fallen away. And it shouldn’t have to be like this. No one goes out looking for a rare disease without a cure or treatment
What things have you stopped doing?
I had to stop working, I can no longer walk any more than two minutes, anything I want enjoyed I can no longer do. So you have to try to find things you can do and within reason because the number one thing with this disease is no stress.
What do you think about the future?
Very uncertain. From everything I have researched my life will be cut short.
So far, which years have been the best years in your life? What have you done during them?
My 30s was good. I was working full-time, I had my youngest son. I used to go out dancing all the time, My health for the most part was good.
What would you like to do if you didn’t have your condition?
I would love to take a vacation to Machu Picchu. They have a hike through the rain forest to get there and wake up in the ruins.
If you had to describe your life in a sentence, what would it be?
Live in the moment
Finally, what advice would you give to a person in a similar situation?
Try to find the positive in each and every day
