- G
My name is Alice Burley, I’m a mother that has been trying to operate my best with the body I was given. I don’t openly speak to most people about my illness as I do feel like I’m a very hidden person when it comes to my struggles. The hardest part about my illness is I’m still unable to find the answers I need to get the proper treatment. Most doctors don’t understand why my body has been attacking itself or why I have no immune system at all. Because of that I’ve been missing out on so much work, parts of my daughters life, and even little things that I enjoy doing for myself. This is truly the hardest thing I’ve had to write because I’m so against asking for help, even when I deeply need it. Looking at my daughter this morning I realized I need to set aside my ego to ensure I can be in her life in the healthiest way possible.
As prideful as I am as an individual I have never asked for handouts but with the way my immune system has been spiraling out of control the last year, even just the last two months, I don’t have many other options. I try my best to continue functioning like everyone else with my daily routine…work, workout, hangout with my daughter and friends, my daughters gymnastics, extra curricular, her camps, playing hockey, and swing dancing. Some weeks the pain is too overpowering to be involved in anything and it seems like now every other week I’m out of work for at least two to three days and inside urgent cares and ER units. One day I could feel like a million dollars and the very next my body be under complete attack. Almost every day now since May I’ve been plagued with sickness, infections, kidney issues, chronic sinusitis, migraines, thrush, and on antibiotics/steroids/pain medications. I’ve missed out on so much work that it’s financially frustrating. It’s exhausting to live this way. I don’t want to treat my symptoms anymore I want to find the root of the problem, which no doctor here has been able to.
The money I raise here will help me get an appointment with a woman, Jill Schofield, in Denver who specializes in multi-stystem diseases. Between moving into a house this last month and paying off other outstanding medical bills it has been a lot to handle financially as a parent, even with the amazing job I do have.
If you know of anyone also struggling with health issues along the same lines as me, I deeply encourage you to take a look at her website and see all about Jill Schofield and her practice. She unfortunately doesn’t accept insurance plans so it is 4500$ to become one of her patients. It would still be amazing to finally find answers so long overdue.
Outside of that I’ve applied for the Mayo Clinic in Scottsdale, Arizona. I’ve also submitted an application for UDN (Undiagnosed Disease Network) to become a patient in hopes of research and answers. I’m also looking into patient programs for the John Hopkins Center.
The worst thing about fighting an illness that no one understands is not having answers and the treatment needed to give me the ability to make the most out of life. I am asking everyone to help share my journey with friends, family, and possible donors to help me understand what’s truly wrong with my body. With so little answers I hope this brings me closer to finding the treatment I need.
Thank you everyone who has taken the time to read, share, and donate to my story.
If you’re unable to donate I ask that you continue to pass my story along for exposure to anyone you may know. I’m open to anyone brainstorming ideas of where I can turn to outside of what I’ve been doing and researching.