Help Bree & Ashton with Bree’s medical journey
Hi everyone, Ashton here.
The first thing someone might notice about my fiancée is her ability to make just about anyone laugh. Her world could literally be falling apart around her and her greatest concern would be the wellbeing of those around her. She is pure love.
On her birthday in April of 2017, Bree was diagnosed with Ehlers-Danlos Syndrome, a connective tissue disorder that impacts nearly every bodily system. A year later, she was diagnosed with POTS (postural orthostatic tachycardia syndrome). Both of these conditions have been with her since birth, but due to lack of knowledge by medical professionals and seemingly “random” symptoms, they went undiagnosed and mistreated for over two decades.
The past three years have been especially difficult. Holding your partner’s hand through countless emergency room visits and doctor’s appointments that didn’t turn up answers or offer relief gets more an more disheartening. They could see she was suffering, but they were at a loss for what to do. (There is an incredible lack of research into these disorders - given how these diseases tend to cooccur, they are generally excluded from research studies and the funding isn’t there. There are some foundations working to combat this and we are hopeful the medical field is headed in the right direction!)
In December of 2017, her boss had called me while I was on my way to take a final exam, so I turned around and met them at the urgent care that was nearest her work. I remember the doctor’s face as he instructed the nurse to call an ambulance, the way he looked at Bree and then at me. The alarm in his eyes as he told me she could die. At this time her eyes were unfocused, body convulsing, and she had lost the ability to speak - something that would continue to happen intermittently and is scary every time. A blizzard had descended upon Grand Rapids and I rode shotgun in the ambulance as the driver, lights and siren blaring, wove through traffic and through slippery intersections as I recited to them answers to her medical history, allergies, and any other pertinent information. We arrived at the hospital to a team of doctors waiting in the trauma bay. They moved so quickly and shouted some questions to me from across the room and whisked her away to CT. A social worker brought me to a room and there, I waited. It was just one of a few hospital stays that would occur over the next few years, each one bringing more questions than answers, each one offering new obstacles for Bree to face.
She gets weekly infusions to help with her POTS and migraines, but due to the pandemic and a month-long chest cold, she was unable to get treatment. Compounded with being deconditioned after surgery in June and being chronically fatigued and home/bed bound, further exacerbated by (so far) unexplained GI issues, her body was reaching a breaking point. After a routine thyroid ultrasound, she collapsed and was taken to the ER. They sent her home and we knew something still wasn’t right. The following morning, I was helping her get back to her wheelchair after using the bathroom and her body had reached that point. I caught her and guiding her safely down. For several minutes she was in an out of consciousness, eyes fluttering and rolling and crossing, jaw trembling violently. I realized within a few minutes that this wasn’t one of her normal POTS episodes (which she usually comes around from on her own). The EMTs arrived and I recited her medical history, allergies, and basic information to them - having become too regular that I sound rehearsed. A few hours later, she was admitted to the hospital from the ER.
As I am writing this on October 7th, she has been in the hospital for nearly eight days. We are currently battling for insurance approval for her to transfer to Mary Free Bed for acute inpatient rehab. It has been a long battle of advocacy, listening, learning, healing. The team of nurses and doctors she has this time have been amazing, and for that we are deeply grateful. She is able to walk a few small steps with a walker and that takes her out for the restof the day. Things are constantly evolving, but what has remained is her desire for laughter and humor. Her first remark to a nurse or environmental services or a doctor or physical therapist upon them entering the room is to ask how they are, and she remembers the details they share (blows me away!) because simply, she cares. So deeply. It has been a long road enough battling the conditions she has physically, but to have to prove how sick you are, how much you need help, is exhausting and has led to dark mental places.
Her recovery is a team effort. Our lives may never be “normal”, and certainly unlike most of our peers. We aren’t the average 20-somethings going about life on top of the world. We know humility. We understand what living with chronic illnesses looks like. We are living it. The stigma introduces a whole new facet to the battle that we shouldn’t have to face.
Bree is a fighter. Trust me - I know how stubborn she is. Asking for help does not come easily to us and we go out of our way to not be an inconvenience to people, but truth is, we do need help. As Bree has been unable to work since that December of 2017, I bring in the sole income. But right now, my place is by her side. And we do need help. Finances are not a new stress for us, but we have reached a point where our resources and cushions have been depleted. It is important we keep our apartment, and we need additional medical devices to make home a safe place again. Any funds raised here will go directly to paying rent, medical bills, and to purchase the necessary medical equipment we will need going forward. I have missed a lot of work due to staying by her side, and by her side is where I am most needed in these moments.
She is my light, my life, my love. Please consider your support for our situation. We are deeply grateful for all who have prayed, sent their well wishes, and positive thoughts and vibes. We are in this together. One day at a time.