Jessica's interview
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How did all start?
I had severe stress from a traumatic life change, two decades of untreated migraines, and a new psych prescribed me four new meds to start taking all at once (which my doctor believed was too much for my system). I went to bed completely "normal" and woke up with severe stomach pain, sweating profusely, and vomiting uncontrollably.
Do you already have a diagnosis? How long did it take you to get it?
It took me three years to get a partial diagnosis. The neurologist I started working with two months ago diagnosed me with Abdominal Migraines (which closely mirrors Cyclical Vomiting Syndrome) and believes my vomiting episodes are primarily the result of my migraines. If the following months prove a different main trigger, we will shift my meds towards CVS specifically.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I had to find a neurologist who specifically had extensive experience with CVS, and that is very rare to find.
What has been the most useful thing for you so far?
Having a doctor who listened to me and believed me.
What have been your biggest difficulties?
I avoid the ER at all costs because they see me as a drug seeking patient. They rarely believe my pain is real despite vomiting for days in the hospital. I've waiting hours just to get an IV for severe dehydration. I've been kicked out of ER beds and made to wait, lying on the waiting room floor, vomiting in pain and crying for three hours until a ride could get there to take me home. ER staff are notoriously cruel to CVS patients.
How has your social and family environment reacted? Have your social or family relationships changed?
I've lost most of my friends, but my family unit has gotten stronger through the trials. It's extremely hard on my partner to see me in constant pain and never be able to do anything about it. We all feel helpless and overwhelmed.
What things have you stopped doing?
I've lost a job because of this disease. I've had to stop drinking alcohol completely. I can't handle being out of the house for more than a couple hours tops - too many triggers. I also can't exercise anymore because there's a very fine line and if I cross it and start working out too hard, I'll starting throwing up without warning and that's very embarrassing in public, to say the least.
What do you think about the future?
I'm hopeful now that I have a doctor who listens and is helping, but honestly I try not to think too far into the future because I have to take things one hour at a time.
So far, which years have been the best years in your life? What have you done during them?
?
What would you like to do if you didn’t have your condition?
Travel without having an episode. I've booked too many trips and then not been able to get on the flight because I was throwing up. No refunds available... No vacation, lost money, and it triggers an episode. And there's nothing I love more than traveling.
If you had to describe your life in a sentence, what would it be?
My life is a rollercoaster.
Finally, what advice would you give to a person in a similar situation?
Get a doctor to write up ER directions and sign so that you have some legal/medical ground when asking for or demanding the correct medications and IVs.
