Finding My Roots

Finding My Roots

Life Rebalanced Chronicles Season 3, Episode 6

When Joy got sick with Mal de Debarquement, she felt like her whole world turned upside down. Her symptoms were constant, and her life was disrupted. Joy was raised by an adopted family, so when she learned that there could be a hereditary component to what she was experiencing, she decided to seek out her biological family. Through her vestibular journey, Joy found her roots.



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Joy Mohr 

My brother and I were both adopted from separate families. We grew up knowing that we were adopted. Our parents read us books about being adopted. So it was never kept a secret. I always questioned like, who were my parents? Or who did I look like? In college, a friend of mine, and I went to the courthouse in the county that I was born. But the records were all sealed. Shortly after going to PA school, getting married, working, having kids like, things just got busy, and then it just kind of got pushed to the back. I was a physician assistant, working very busy hours doing hospital and outpatient clinic work. I love to travel, I still love to travel, we’re going on vacation. See you in Florida, tried to take the kids on as many adventures whether it was close to home or a little bit further away from home. So it was my third cruise that left me with mal de debarquement syndrome and vestibular migraines. The cruise went perfectly we all had fun when we got home that night. And the next day I was exhausted, which I expected. And every time I got up to start doing something or like go to the bathroom or go to get something to eat. I felt like I was laying on a raft in the middle of the ocean and that I was going to be flipped off the raft. I had to hold on to my desk at work, counters at home the walls doors. And it was crazy because I knew I wasn’t moving. But yeah, I felt like I was in constant motion. I was a mess. Crying, not understanding why do I feel like this? Why can I not multitask the way I used to I used to be able to go go go and figure out what to do with multiple patients at once. And all of a sudden it was I could only do one thing. So it was super stressful, super stressful with kids because they don’t understand like, we need to be quiet. doesn’t feel good.I made an appointment with an ear nose and throat doctor and neurology that your nose and throat doctor. He got me in with a vestibular therapist who had been practicing for like 30 years. And she pretty much diagnosed it. My employer did not understand. They told me that I looked normal and that I was making it up. Ultimately I was fired for this condition. Because they didn’t believe it. They thought I made it up they thought I made up the diagnosis. I had thought that I was in the last job of my career like my forever job. Living in my husband’s hometown raising our children here with other family friends. And then I felt like the entire world just completely spun out of control, flipped upside down, ripped apart and shredded with gasoline poured on top and a lighter to set it on fire. I didn’t feel good. I didn’t know how to make myself better. I had been seeing my neurologist doing vestibular therapy. I had been referred to the University of Iowa Haas. Going clinics to a specialist there. And I was waiting on a referral appointment to Mayo Clinic. So I was doing all the things that I could. I had read that people with motion sickness have a higher chance of developing vestibular related disorders. And I’d read that motion sickness also was common in families. So it was about a year ago, I did one of the DNA kits. I was curious about vestibular stuff, but I was also curious about cancer related things. When I got my results, it linked me up with two close relatives. My cousin reached out to me sent me a message. She’s She said something like, I think you’re my aunt’s daughter. If you would like to talk, here’s my email address. It was like instant excitement. Like, oh my gosh, she knows about me. It’s great. So I sent her a message back and we were messaging and then we’re like, let’s talk on the phone. Hey, oh, my gosh, I can’t believe how much we look alike. And talking to her, it was like I was talking to a friend or family member that I had known my entire life. So since then, I have met some in person. I’ve talked to pretty much everybody over the telephone or through FaceTime or texting. My parents are married. They stayed together, got married, and I have a sister and a brother. Yes, it’s crazy. I can’t believe that. After five years of being on this journey, I’m sitting here in my biological brother’s house, looking at family photos. Yeah, and after hearing your vestibular story, I can think back now growing up, there were times with my mom where she wouldn’t tolerate going on long car trips. We would go to amusement parks, and she wouldn’t go on any of the rides, it was pretty bad. My birth mom and I are very similar. We look a lot like she, she dealt with or still deals with a lot of motion sickness and vestibular related issues. And then my siblings have some motion related issues. And their children have some motion related issues. So in a way, it kind of felt validating for me, because there are people that thought I made this up and I’m like, making it up. And then to know that my birth family has similar symptoms, diagnoses. Just not that I would wish this on anybody. But it just made me feel like I’m really not making this up. So I finally got to Mayo Clinic, and I was there for roughly a week and had tons of testing. And over the course of probably a year and a half. And a lot of medication trials. We started to get on a regimen that was working good for me. And during this time, I had started to meditate. I was doing mindfulness and through a lot of the integrative functional medicine approaches, the more holistic approaches that started to give me more of a like a calmness. I’ve been doing a lot of reflecting over the lat last couple of months because this is the five year mark. And there have been so many changes. So went from mom, wife, full time pa career to literally losing everything. And now rebuilding. I’m part time pa still a mom. My ex husband and I, we do a pretty good job of coherent team. I have been rebuilding myself and life hasn’t been perfect. I still have some flare ups. I’ll still have more of the vestibular migraines, but I’ll still have some MdDS flare up symptoms here and there. Just the whole vestibular journey has been. It’s been a difficult journey. And there are times I’m just so tired and just want to be done. But then having the biological family come in at the time that they did, has been refreshing and has kind of given me like a new breath of fresh air.