I’m so humbled to be sharing Jenna’s story. Since hearing about her struggles with health, I’ve admired her courage and yet willingness to be vulnerable. She’s always been so honest and hopeful for what God is doing in her life. I think when we’re going through something difficult we feel so pressured to say “I’m good”, instead of being open with people. I hope her openness and perseverance with God’s strength, can encourage others as it has me. Read her story below.
Five years. 60 months. 1825 days.
January 6, 2016 marked five years since the day I woke up not knowing that my life was going to change forever. I was a 14 year old high school freshman girl. I woke up with not even enough strength in my body to sit up, puking profusely laying in my parent’s bed.
This is where my journey began..
Of course we thought it was just the flu, or strep throat or something like that so my Mom made an appointment for me and we went to the doctor a few days later and they prescribed me an antibiotic even though the results came back negative for both. The next week I felt a little better so I went to school for a few days out of the week. But it became a fight every morning to get me out the door for school.
Many mornings ended with me balling my eyes out, laying on the bathroom floor so nauseous, or with my parents finding me laying on the hallway floor, barely catching myself before almost passing out, too dizzy to sit back up, and too weak to walk to my bed without assistance. So many times I made my brother and sister late for school because they had been waiting for me. I often cried because I was scared, not knowing what was going on inside my body and wondering why I felt so sick.
As a freshman in high school I didn’t really understand everything in the whole medical world, so I just went wherever my mom had scheduled a test, or another appointment. Of course, starting high school is a big change, and somewhat scary. So, as all of this went on and I was not getting any better the doctor and my parents kept assuming something was going on at school. They thought it was anxiety, and that I just didn’t want to go to school. It wasn’t though, I was truly sick and I knew there was something wrong. Every time I went to see my doctor she just assumed it was anxiety, or that I was having troubles at school and that I just didn’t want to go or saying it was “all in my head”. That was the exact opposite of what was happening. The first trimester of high school, I had a perfect attendance record and all A’s and B’s. I was an active high school girl. I participated in volleyball, softball, ran track, was in the school musicals and was academically good at school. I loved school and I had great friends. I tried to tell the doctor it wasn’t anxiety and everything at school was in fact fine, but she still insisted on giving me anxiety medication.
Every time I went to a doctor appointment trying to figure out what was going on, I was told “try this” or “this medication might help that symptom”. I was tired of it. I just wanted to know what was going on in my body! My doctor finally told me that she didn’t know what else to do for me, so she suggested I go to a doctor that was a friend of hers in Kalamazoo. At my first appointment with her, I was asked the same questions I had already answered a million times at previous appointments, and once again was told that it sounded like anxiety and the doctor wondered if everything was okay at school. I had a gall bladder test done, many x-rays taken of my stomach, a scope done, a pregnancy test done (because it was literally like morning sickness every single morning) and every other test under the sun. Nobody could find anything wrong. At this point I was extremely frustrated, as were my parents and the rest of my family. We were so angry that all of these tests were coming back fine when we knew something wasn’t right. My faith was tested many times through these five months. I couldn’t for the life of me figure out why after all of these tests and blood draws nobody could even find the slightest thing wrong, but instead just kept prescribing me different medications to mask the present symptoms. It was about 5 months later and we were desperate for an answer and running out of options at this point. That was until we went to the Born clinic in Grand Rapids, MI for more testing.
It was at the Born clinic that the doctor asked if we had ever heard of POTS. We hadn’t. She told me that every symptom I was experiencing sounded exactly like POTS. So, after sitting in a chair for over an hour to get my IV and fluids injected and a hair sample cut out of my head for another test I went home and spent the whole weekend searching POTS information and watching YouTube videos on people with POTS. When I saw YouTube videos of girls explaining what they go through daily it was exactly what I felt like. It was like they were explaining my life. I had such a sense of peace because I felt like maybe now we were heading in the right direction towards some answers. My mom printed off a ton of information about POTS and we took it to my doctor. POTS is not rare, it is just rarely known. She read it and researched it some more. She then scheduled me a tilt table test to be done. That is the test that officially confirms the diagnosis of POTS. The point of the tilt table test is to see if you pass out. (Sounds lovely, doesn’t it?) So, I woke up on the morning my test was scheduled for and headed down to Borgess to complete this test I was dreading. So many emotions filled me in my 25 minute drive down to the hospital and I didn’t know what to expect.
IT WAS THE WORST TEST OF MY LIFE to sum it up. First off, they made my mom leave the room, which is never a good sign when my own mother can’t even sit and watch it be done. They strapped me down to a table. One Velcro strap across my forehead, one across my chest and two across my legs, they then proceeded to hook up a bunch of heart monitors and then they stood me up. I immediately felt dizzy and I was starting to experience hot flashes. Inside I was trying to talk positive to myself saying “you’re okay, Jenna” and “I can do this”. About 7 minutes into the test the nurse asked me if I was okay. I immediately responded with “I don’t feel so well.” I started to get extremely dizzy and then the next thing I remember is waking up, now horizontal on the table and my mom was back in the room. (I came to the conclusion that they made my mom leave because what mother would not freak out if their daughter passed out while strapped down to a table right in front of their eyes.) That’s just my theory, though.
It took 5 long months of testing, many trips to U of M, weekly trips to my doctor, and many mornings struggling trying to go to school before I finally got a diagnosis. After being diagnosed by my doctor May 13th, 2011 my parents and I went out to the Mayo Clinic in Minnesota in October 2011 to confirm the diagnosis. After a week of testing from sun up to sun down, they once again confirmed my diagnosis and I heard it again “Jenna, you have POTS.”
POTS stands for Postural Orthostatic Tachycardia Syndrome. It is a dysfunction in my autonomic nervous system (ANS). My ANS has a hard time functioning properly. My blood doesn’t flow to my heart and brain as fast as it is supposed to, which makes my blood pressure drop, and my heart rate rise when I stand up which causes me to be dizzy and pass out often. My other main symptoms are nausea, fatigue, headaches, cold hands and feet, brain fog, back pain and so many more depending on the day. Every day is different and I never know how I am going to feel. There is no cure for POTS which makes it frustrating. Studies show that about 80% of people with POTS outgrow it in their early 20’s.
As the days continued to pass, each of them consisting of either doctor appointments, or me laying on the couch the whole day we came to a decision that I was missing too much school. (You can only have 7 absences per trimester.) I would go to school in the afternoon for a few hours, a couple days a week if I could. I just needed something to change because that was not working at all. I was so overwhelmed because I had so much work to do and I was missing all of the class lectures. My sister would bring me piles of work home every week. I just couldn’t keep up. Freshman year had ended and it was summer. My math teacher, (out of the goodness of his heart) spent the summer tutoring me. He helped me pass my freshman year classes. Then sophomore year came around, and that was the worst year of it all. I did not do any schooling that year because I was too sick. I tried to, but I physically couldn’t make it to school. When junior year finally came around, my counselor suggested that I be homebound. Homebound means that I am still enrolled through my high school I just do all of my work from home. (Why we didn’t do this sooner is still a mystery to me). I started my online classes and they seemed to be going okay. Doing all of my schoolwork at home with no teacher whatsoever is extremely difficult, though. I only completed about 4 classes that year, due to the program I was using. At the end of the year, I knew I was not going to continue doing that, because it was setting me even more behind.
Finally, senior year had come. I was homebound and doing a simple online program through my school and that seemed to be the best thing for me. It was extremely difficult to motivate myself to do my work, because most days I just wanted to lay on the couch, because I was so sick. I knew I had to do it, though and I was extremely blessed by the opportunity to be able to learn that way and still be completing my classwork. Due to missing my whole 10th grade year and part of 11th grade I graduated last year with the class of 2015. After all I had been through, I would say being homebound was one of the biggest decisions my parents and I had to make, but I knew it was the best decision for me. I truly did miss being at school all day every day with my friends, but everything worked out for the best after switching to Alternative Ed and having the most amazing teacher ever to help me with my online classes and come out to my house for me to take my exams. Aside from schooling, my social life also became a struggle. It was so hard for me to go to sporting events and not be questioned. Many times when I felt good enough to leave the house to go to a sporting event I would be swarmed with people and questions. I loved being able to see people, but often it was overwhelming. Sometimes I heard remarks like “If she can be at a sporting event, why can’t she come to school” and “she looks totally fine, I wonder if she is faking”. The thing with POTS is that it is an invisible chronic illness. That means that although I look perfectly normal on the outside most of the time, I feel so sick on the inside. I learned to just smile and pretend everything was okay while I was out in public, because it was easier than explaining everything to people that just wanted to get the next bit of information from me. Often, I would have to cancel plans which was also very hard on some of my friendships. It looked like I was always making excuses when I just truly couldn’t come to grips with getting off the couch that day, let alone getting ready and leaving my house. I never ever know how I am going to feel from one minute to the next. I can be feeling perfectly fine one minute and then be down for the count the next. So, that aspect is very challenging on me and my friends. I definitely figured out very quickly who my true friends were and I am very thankful that they stuck by my side throughout the tough times.
I am now 20 years old. I have a photography business and currently work for a local photographer who I have been so blessed by. I recently became an Arbonne Consultant & I also babysit a lot to stay busy! I decided to take this past year off of school because I really just needed a break after working on finishing high school every school year and summer since my sophomore year. I will be starting at KVCC and taking my general classes to get started this upcoming school year! I am so thankful for the determination that I had to continue to fight for the answers I needed when none of the doctors could find anything. I am grateful for my amazing family, especially my parents that fought for me through everything. My mom being a nurse handled the medical world and my dad being a teacher helped me tremendously to get through school. Many times people have complimented me on never giving up when most people, if put in my situation would have. I truly give the glory to God. Without him, I honestly don’t know how I could have continued to fight these battles and overcome and persevere through all I did. Although I have not fully outgrown it, I am hoping symptom free days are in my future.
Through all that has happened, I am still thanking Jesus for this life I live because I know he is working through me to glorify Him. A special thank you to my amazing family and the friends that have stuck by my side through this tough journey. You are appreciated more than words can express.
*Photos taken by Katie Farris.