About me

For those who do not know me - my name is Kara, and I’ve been living with complex invisible illnesses that have shaped nearly every part of my life.

Writing this is one of the hardest things I’ve ever done. I’ve always been the person who handles things on my own – strong, independent, and never one to ask for help. Admitting that I need help now is humbling; I can’t fight this battle alone anymore.

For years, I’ve coped by pretending that I am fine. If I ignored my illness, maybe it would go away. I convinced myself it was all in my head, hoping denial could keep me safe. Instead, it made me retreat into silence. I didn’t want the world to see how sick I really was.

I regret not sharing my story sooner. My ego only wanted people to see the “everything’s fine” version of me~the smiling, capable version who could fake it until she made it. That mask kept me functioning, but it also kept me from being seen, helped, or healed.

My Story

It all began when I was 14 years old. One tick bite changed everything. Doctors found a Chiari Malformation Type 1 and idiopathic intracranial hypertension. For a while I went into remission, but when the symptoms returned in 2016, I was diagnosed with chronic neurological Lyme disease, as well Chiari Malformation and CSF disorders.

These conditions synergize and feed off one another. They don’t just cause pain, they create a constant neurological storm inside my head. It feels like living with a pressure cooker inside my skull — constant head pressure and headaches that no medicine can touch, ringing in my ears, ear fullness, and blurred vision. Other symptoms include dizziness, nausea, TMJ, body rashes, joint pain and dissociative brain fog.

Most people don’t see these things. They see someone who looks fine, but they can’t see the invisible fight happening inside of me every single day.

For years, I powered through. I built a 12-year career I was proud of and loved. I continued working in the midst of surgery, pain, and constant fatigue. I took multiple medical leaves to try and heal, only to return feeling exactly the same as before. I ran on willpower, even when my body begged for rest.

Eventually, I hit the wall, the point where I simply couldn’t do it anymore.

Leaving my career and selling my home was terrifying, but staying sick scared me more. None of the things I worked so hard for mattered if I didn’t have my health.

I’ve tried countless remedies, ranging from talk therapy, prescription medications, acupuncture, massage, sauna, herbals, supplements, detoxes—you name it. I’ve spent close to a hundred thousand dollars in the past 9 years chasing relief from my symptoms. Even a five percent improvement has felt like a miracle.

It has been a physical, emotional, and deeply isolating journey. I’ve been dismissed, doubted, and overlooked by too many doctors. I’ve had to become my own advocate, my own researcher, and my own hope. Despite all of my relentless efforts I have had doctors and people in my life tell me things like “It is all in your head”, “be positive”, “stop exaggerating” – If I had a dollar for every time someone said this to me I would not be here making a GoFundMe.

Through it all, my family, friends, and dogs have been my anchors. Their love, patience, and support have kept me grounded through the darkest moments. They’ve seen me at my lowest and have never walked away.

About my conditions

Chronic Lyme disease is a complex, multi-system illness caused by a bacterial infection transmitted through a tick bite. When not treated early, it can spread throughout the body, affecting the brain, nervous system, joints, and heart. Many people with chronic Lyme experience constant fatigue, pain, neurological symptoms, and cognitive dysfunction that can become disabling. Despite its severity, chronic Lyme is often misunderstood, underdiagnosed, and not covered by insurance, leaving patients to fight both the disease and the healthcare system on their own.

Chiari malformation is a structural defect in the base of the skull where brain tissue extends down into the spinal canal. This happens when the skull is abnormally small or misshapen, putting pressure on the brain and blocking the normal flow of cerebrospinal fluid.

Cerebrospinal fluid (CSF) is a clear, protective liquid that surrounds the brain and spinal cord. It cushions the brain, removes waste, and helps regulate pressure within the skull. When CSF pressure is too high, it can cause crushing head pressure, vision problems, dizziness, nausea, and even damage to the optic nerves. When CSF pressure is too low, often from a leak, it can cause debilitating headaches that worsen when standing, along with neck stiffness, nausea, and cognitive fog.

Maintaining the right CSF balance is essential for brain function, and when that balance is disrupted, it can affect every part of a person’s life.

My team of doctors believe that the high and low pressure shifts may be caused by a CSF leak, meaning that fluid may be leaking somewhere along my spine or brain, throwing my pressure out of balance. Duke is one of the few places in the country with the expertise and advanced imaging needed to identify and treat this type of leak. One of the most complex and debilitating parts of my condition is how my cerebrospinal fluid (CSF) pressure constantly fluctuates between too high and too low and not knowing why.

Where I Am Now

After years of searching for answers, I have a referral to the CSF Clinic at Duke, one of three clinics in the country equipped to handle complex, rare, neurological conditions like mine. This is a massive step forward, a chance to finally find clarity, specialized care, and hopefully to begin real healing. I am also consulting with Lyme specialists in Germany, Switzerland, and Mexico to determine which treatment center will be the best fit for my needs. My goal is to receive evaluation/treatment at Duke and complement that with treatment at a Lyme clinic, creating a comprehensive plan that addresses all aspects of my condition.

But making it work financially, logistically, and emotionally is a mountain in and of itself.

Why I Need Your Help

$75,000 may sound like a huge number, but no insurance company covers chronic Lyme treatment. My parents and I have exhausted everything we have and can no longer afford to do this alone. Medical bills, out-of-pocket doctor visits, bloodwork, alternative medicine, MRI scans, surgery, and travel have become a massive financial burden over the past 10 years.

This fund will help cover:

• Out-of-pocket medical expenses

• Duke CSF Clinic evaluations and travel/lodging/Hospital stays/treatment

• Specialty lab work and testing

• Going out of the country to some of the best Lyme centers in the world which will include treatments such as Ozone, IV, Stem Cell Therapy, Hyperthermia, and Apheresis

• Supplements, medications, and recovery costs

• Loss of wages and living expenses while I heal

Every dollar helps me take one step closer to stability, clarity, and relief – after years of fighting to survive.

How You Can Help

I’m asking for your help to continue fighting for my health, to afford life-changing treatment, and to rebuild my life. If financial contribution is not an option, please consider spreading the word by sharing my story. Awareness matters. The more people that understand these invisible illnesses, the closer we get to compassion and change.

I have so many big dreams and plans that I had to put on hold. I have given up so many things that I love. I’ve had to cancel so many plans I desperately wanted to keep. I am unable to be that highly independent free spirited girl who loves life to the fullest. I now just dream of a day without a debilitating headache, not having to ask for help for basic things and I find myself fantasizing about what life could be-instead of living it.

This journey has taken everything out of me, physically, financially, and emotionally, but it’s also revealed a resilience I didn’t know I had. I’m still standing, still hoping, and still believing in the possibility of healing.

If you’re reading this, thank you for seeing me, for believing in me, and for helping me keep going. I may be exhausted, but I’m not broken. My story isn’t over. With your help, I can get the care I need and finally begin to heal.

Donate if you can. Share if you can’t. Both change lives.

With peace and gratitude,

Kara