jfouts1979's interview
Error
How did all start?
Grave's Disease - 2007 - Spine surgery - malpractice - 2009 - developed Complex Regional Pain Syndrome - 2010 anti-thyroid drugs no longer worked - caused liver issues - had thyroid removed via radioactive iodine...December 2010 developed burning symmetric foot pain - kept spreading continues to spread today - have many other comorbid conditions
Do you already have a diagnosis? How long did it take you to get it?
Yes. It took 6-7 years to get the SFN diagnosis - and I continue to, unfortunately, develop more health problems each year. It is very disheartening.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I am seeing many right now, and I believe I have seen 18 different specialities in the past....the most useful specialty for me has been gastroenterology, however, neurology, sleep, primary care, and vascular surgeons have also been very useful in terms of helping me feel better.
What has been the most useful thing for you so far?
Finding a therapist who will listen is helpful...one that will not doubt your conditions. Getting more rest - not working full time - reading to find hope...IVIG has been helpful somewhat - I recently hit the 1 year mark for it...still going...
What have been your biggest difficulties?
Pain, fatigue, losing all social support, losing all friends, being isolated, extreme burning alive pain is the worst! So is the fatigue!
How has your social and family environment reacted? Have your social or family relationships changed?
I don't have much of a social network. My mom and dad love me, but they are older now, and I feel I am only a burden to them when I speak to them, so I try not to mention my health problems that much.
What things have you stopped doing?
Most things...
What do you think about the future?
It is very difficult to see a future with this condition.
So far, which years have been the best years in your life? What have you done during them?
College years. I used to be a very sociable, outgoing person. I loved meeting new people, especially women ;-) Now though, it is hard to do just about anything.
What would you like to do if you didn’t have your condition?
Date again - hopefully - and find a nice partner that could vibe well with my INFP-t personality type... Spend more quality time with my son (who was dx with Autism Spectrum Disorder this year, and has ADHD) - especially doing more physical activities with him - he just doesn't understand what I am going through - no one can - unless they are living through the same hell of pain and fatigue.
If you had to describe your life in a sentence, what would it be?
Misery with nearly completely extinguished hope, yet eternally optimistic, so the flame will never die completely...full of dialectics....
Finally, what advice would you give to a person in a similar situation?
Don't waste time on doctors who won't listen or who treat you badly - find ways to try to improve patient-doctor relationships, don't let anyone treat you badly - if they don't understand and have no compassion - there are other people in the world that do...you have value in the world, and a purpose, and deserve to feel better.
