Jessica's Story
Jessica lives in rural South Dakota with her husband Cole and two children. She is passionate about being a mother, advocating for others through her job as a law enforcement case manager, and advocating for herself and people living with post-bariatric hypoglycemia (PBH).
Listen to Jessica’s Story (5-Minute Listen)
Jessica’s Story: The Knowledge I’ve Fought to Find
Imagining a different future
Deciding to undergo bariatric surgery was supposed to make things easier and open doors for me. I was probably about 260 pounds at one of my highest points. My health was declining, and I wasn’t functioning well physically. I was really struggling and just wanted to make that change to be able to live a fuller life. So in 2018, I had Roux-en-Y gastric bypass surgery. I successfully lost more than 60 pounds and kept the weight off for two years, during which time I met and married my incredible husband, Cole. But then I started developing strange symptoms after eating.
Noticing the signs
Cole and I had been connecting some dots. As time passed, I started having more and more intense episodes, and I was linking them all to being about an hour or two hours after I ate. The only constant was knowing that after I ate, my blood sugar would crash.
My symptoms were (and still are) unpredictable. I can’t even narrow it down to specific foods because I can eat the same meal on two different days and have completely different reactions.
I was initially told it was dumping syndrome (another condition that can be caused by bariatric surgery), that I wasn’t doing enough to manage my diet, or that my symptoms were normal.
My search for answers
The very first time I took my blood sugar, it was 15. I should have been really freaked out, but I felt so validated that something was actually wrong. My blood sugar was actually low. Any normal person would look at that and call 911 immediately. But I had been functioning at this level and just had no idea. I was quickly referred to an endocrinologist, and my search for answers started. Honestly, I want to cry thinking about my first endocrinology appointment because I had just felt so judged by some of my previous doctors. I learned that PBH looks different for many. For me, it is unpredictable and often very frustrating.
My low blood sugar episodes often look different as well. I’ve had incidents where I was found wandering around work, unsure of where I was. I had people concerned about my well-being at a dog park because they thought I was acting intoxicated, when really, I was having a blood sugar low. I’ve injured myself trying to get myself food to stop a low by cutting a finger or hitting my head on a cabinet…or I simply pass out. So even though it felt really good to be believed, it was still very isolating, and it was scary to think about the future.
What PBH has taken from me
My PBH has drastically changed how my life looks from five years ago, and this condition has closed a lot of doors for me. Many of the activities and things I loved are impossible now. For example, my coworkers and I have volunteered with the Special Olympics for several years. I used to look forward to helping carry the Flame of Hope across the state leading up to the summer games Opening Ceremony every chance I could, and because of my condition, my volunteering role has to be much more limited today. I’ve missed out on special trips and experiences. I stopped being able to do any sort of strenuous workouts, due to passing out from low blood sugar when working out. I’m unable to work overtime or longer hours without accommodations. I’ve missed out on great career opportunities that would’ve allowed me to do more of what I’m passionate about in law enforcement. PBH even impacted my family’s decision to live in the same building as where my husband works so that he’s nearby in case of a crisis.
I’ve always been very dedicated to my work, but that doesn’t compare to how much I love being a mom. I just want to be a fun and awesome mom, but my situation has to look different in order to stay on top of everything. I have to be really careful and plan every aspect of the activity. I never feel safe getting in the car and driving somewhere with my children, because my blood sugars are that unpredictable. I would give anything to be able to drive to the park or zoo with them and not have to worry. Even if my blood sugar crashes only twice a day, that’s still two times too many. It’s about the life that I’m missing out on. I think it would be incredible to regain some normalcy again.
Advocating for information and support
It took me years of being “pushy,” advocating for myself and doing a lot of my own research, to get to where I am today. We need treatments for PBH. In the meantime, if I can help even one other person with the knowledge I’ve fought to find, then that work is worth it. I’m proud I never accepted the answer of, “It is what it is, and you’re just going to have to deal with it.” That’s not a life I want to live. There’s got to be some other answers out there. I refuse to say my life is over because I have PBH. I will fight until the very end to continue to live a fulfilling life, although it may look drastically different.
