Support Jess's Journey with Lipedema and POTS

Over the last five years, I've been diagnosed with four different chronic illnesses.

At the start of the journey, I was feeling soreness and heaviness in my legs, limited mobility, tenderness, and easy bruising. Through a random post on Facebook, I learned about Lipedema, a progressive connective tissue disorder that causes swelling and abnormal fat growth. It turns out I've had lipedema since puberty but was undiagnosed and untreated for decades.

I fainted in 2022 and also experienced fluid shifts whenever I stood up, feeling a kind of woosiness. While learning more about lipedema, I had read about several co-morbidities that often come with it. I talked with my doctors about starting autonomic nervous system testing, which diagnosed me with POTS (Postural Orthostatic Tachycardia Syndrome), hEDS (Hypermobile Ehlers-Danlos Syndrome), and MCAS (Mast Cell Activation Syndrome).

These all mean that my body isn't controlling the automatic functions like blood pressure, heart rate, breathing rate, temperature, and allergy response correctly. In daily life, any change in my body posture throws all those automatic functions off, and I take longer to recover or get back to a steady baseline. I'm limited in how far I can walk and how long I can stand.

I've started several treatments including medications, occupational therapy, physical therapy, mental health therapy, allergy shots, and compression clothing and devices. They're all helping me to gradually feel better and regain mobility, but it is a slow process.

In January of 2024, my doctor agreed I should stop working and I went out on disability. This has been essential for my healing, but it reduced my income to 60% of my previous salary. At some point, I will start working part-time to get more income, but my body isn't ready for that yet.

Because these conditions are considered rare, I sometimes have to go Out of Network to see competent providers. Although that is more expensive, I'm lucky to live in an area with access to knowledgeable providers.

My medical expenses from the last two years total over $18,000, even with good insurance. This year, I met my Out-of-Pocket maximum in May. That will reset in the new year and I'll begin paying coinsurance again.

The consequences of the cost of these tests and treatments and my reduced income are coming to a head as I reach the one-year mark of being on disability. I can't do this on my own anymore.

Your help, no matter how small or big, will help me to continue to get the care I need and alleviate the financial stress that comes with long-term illness and disability. I am so grateful for you even considering helping.

If you would like to avoid fees, I'm also on Venmo (https://account.venmo.com/u/jfisher3663) or can accept Zelle, just message me.