Help Bee With Medical Expenses!

While Bee has held many roles in all our lives, I think the one we all share and feel most strongly is “friend.” Bee has consistently shown up as their full, authentic self, making all of us better along the way. Bee is a person so many of us have turned to - for their candid thoughts, comforting words, and unwavering support. This fundraiser is one small, but vital, way, that we can show Bee the same love, support, and kindness they have consistently shown us.

When I originally approached Bee about this fundraiser, they told me “I don’t want to darken other people’s skies. I wish I could take care of everyone myself.” I would like to remind them that their community cares about them in their most vulnerable and difficult moments. I would love to do that together.

Bee has been diagnosed with a variety of rare and serious conditions (explained more below) that have resulted in prolonged hospital stays and numerous doctor’s visits. They have been treated at a hospital approximately 200 miles from home, and spent many nights (along with family members) in hotel rooms traveling to and from doctor’s appointments. Facing down two new, rare conditions, Bee has been coping with a significant amount of pain and uncertain days on the horizon. Despite this, Bee’s kindness and spunkiness have never wavered.

Bee has been on short term disability since the end of October, and will need to continue this leave from work until at least early 2024. Despite an incredibly supportive workplace that is assisting Bee in every way possible through official channels, Bee’s bills are piling up - they need to pay their rent and cell phone bills, but more importantly, they are paying out of pocket for costs associated with their medical condition that have come up. These include insurance co-pays and supplies/equipment not covered by insurance but also things like gas, food, and hotels for a support person to stay with them during these long hospital stays away from home.

We are starting with a goal of $8,000 to help cover a few months of their rent/bills + outstanding medical supplies costs + upcoming hotel and food needs for a surgery scheduled 12/14 to perform an ileostomy.

More information about Bee’s health:

In things that should surprise no one about Bee, they asked if this fundraiser could also be used to increase awareness and education about some of the chronic and rare conditions they’ve been diagnosed with. Because, even in the midst of their own medical journey, they want to help as many other people as possible.

In addition to existing diagnoses of Postural Orthostatic Tachycardia Syndrome (POTS) & Ehler’s-Danlos Syndrome (EDS) that vastly impacted their day-to-day life, Bee has recently been diagnosed with:

- Nutcracker Syndrome, a rare vein compression disorder. This causes patients to have severe abdominal pain, fatigue, and headaches. For Bee, it will likely require a vascular surgery to correct in the near future.

- Superior Mesenteric Artery Syndrome, a digestive condition causing a part of the small intestine to become compressed, causing a partial or complete blockage. Symptoms for patients can include intense abdominal pain, fullness, nausea, vomiting, and weight loss. This condition has made it nearly impossible for Bee to digest properly and absorb vitamins and nutrients. This condition has required the placement of a nasojejunal tube, followed by a jejunostomy tube in hopes of providing as much nutrition as possible.

- Pharyngoesophageal dysphagia means Bee and others with this condition have pain swallowing and frequent heartburn. This digestive condition has made it much harder for Bee to try to eat and drink.

Bee’s existing conditions of POTS & EDS are two chronic conditions that alone result in a variety of symptoms that require daily maintenance and a variety of accommodations to survive. POTS is a complex nervous system disorder that impacts the body’s ability to control heart rate and blood pressure. Bee has experienced debilitating symptoms as a result of their POTS including rapid heart rate, fainting, dizziness, headaches, fatigue, and weakness. These symptoms are common for many who are diagnosed with POTS, and like Bee, many individuals choose to use accessibility devices like wheelchairs to mitigate the worst of their symptoms. POTS is frequently seen in patients who have been diagnosed with EDS, which affects connective tissue (like your skin, joints, and blood vessels) and frequently results (as in Bee’s case) in hyper mobility of joints and fragile tissues. Put simply, this means that joints dislocate and are sprained frequently, causing frequent and chronic pain.

I look forward to our collective effort being able to help mitigate some of the financial needs that Bee is facing at this time. We genuinely appreciate all your love and support as they go through these remaining procedures and hospital stays.