INTRO

Hi! I'm Rachel, though some people know me as Allie (I go by both, Allison is my middle name). I'm a 29 year old woman recovering from severe chronic illness and working every day to get my life back. I have Hypermobile Elhers Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Disorder (MCAD). I have been sick with these since the age of 15, though some symptoms I've had since I was an infant. Now on the road to recovery, I'm working every day to grow stronger and enjoy every aspect of life. Unfortunately, medical bills and needs continue to pile up and being a one-income household is a feat in this economy. But first, let me fill you in on my story a little bit more:

MY STORY

Despite getting sick in 2010, it was not until 2023 that I finally received a full diagnosis. In the time that I went undiagnosed my health continued to decline significantly, especially beginning in 2018 when I lost the ability to sit up or stand without passing out. From 2018-2024 I lived a hellish existence, secluded in a dark room, my eyes too sensitive to light, my nose too sensitive to the slightest scent, my body too weak to function. The combination of my illnesses and sensitivities had brought my food intake down to three foods (chicken, rice, and quinoa) that I could eat without reaction. I communicated mostly through short, quiet answers or hand squeezes and taps (once for yes, twice for no), as my energy was too depleted for anything more. My weight dropped drastically (I lost 45lbs), my body was covered in abscesses, and I became too weak to feed myself. During this time my husband, my mother, and my mother-in-law took care of me round-the-clock and everyone in my life seemed to hold their breath as they waited to see if I would pull through. In October of 2023 my husband carefully loaded my limp body into the back seat of our car and drove the two hours to the Cleveland Clinic where they were waiting to admit me. In so many ways even they didn't know what to do with me and the nine days I spent there were horrific and agonizing. But I left with a NJ Tube that would, in time, finally allow me to access the nutrition my body so desperately needed. The process was slow. My body was far too reactive and fragile to handle anything more than a few milliliters over a lengthy period of time, but I kept fighting because I knew my life depended on it. Little by little I was able to increase these feeds until I gained 15lbs back. Now that I had proved I could tolerate the tube feeding and was responding to it, I was finally strong enough to have a G-Tube placed in March of 2024. With this the volume of my feeds were able to be increased and I put on 30 more lbs over the next year. But it wasn't just the weight/nutrition. Throughout 2023-2024 I was finally on the proper medications to treat my conditions, having finally gotten a full diagnosis. In the spring of 2024 I began physical therapy to start building my body back up. Slowly I could sit up again, first for 10 seconds, then for 30, now for hours at a time.

Which brings us to the present day! I continue to grow stronger and less reactive with each passing month. The combination of treatments, nutrition, and PT have worked miracles. There's still a long way to go, we're just starting to work on standing again, but I'm living life again in the beauty of the daylight, and after six years of hardly being able to say a word, I'm sharing conversations with the people I love most and re-discovering the beauty in the world around me. I've experienced so many firsts again that I truly thought I would never see. I've cried happy tears as I've looked out of my window at the changing seasons, seeing snow again for the first time, and stars; I'm thriving in the joy of spring right now, feeling very much in line with the way that everything seems to be coming back to life. I can still hardly believe that I am too, but at the same time I do believe it. Because I faught like hell. I faught with everything I had and didn't have. And I know I've earned every triumph.

My body still reacts, yes. I still tire out easily and need plenty of rest. Every day is a balance of progress and maintenance and just enjoying my existence again.

WHAT I NEED

Because my body is still very sensitive, much of my treatment has to be specialized which is a fun way of saying insurance doesn't like to cover it.

Because my body still reacts strongly to medications/ingredients, all of my medications are made at a compounding pharmacy with a specific blend that works for my body. Since they're all compounded, insurance doesn't want to cover them, which means we're paying about $400 out of pocket each month.

My physical therapist specializes in my specific conditions (EDS/POTS/MCAD) and is able to provide therapies that work with my body. Unfortunately, she is not covered by insurance either and we pay about $300/month for that.

We currently have an appeal in to the insurance company to cover the formula for my tube feeds, but again, because it is a specialized formula and the only one we've found that I don't react to, they have declined us thus far. We are currently paying about $120/month.

Total Monthly Medical Costs: $820 (3 Months Covered: $2,460)