Why I Founded RRA

I founded RedRiver Advocacy, LLC because of my own experiences trying to navigate the healthcare system—first as a child, and now as a young adult living with a serious chronic illness.

My story with healthcare began when I was around 12 years old.

I started experiencing symptoms I couldn't explain: pins and needles, numbness in my feet, arms, legs, neck, and back, along with pain and other strange sensations that I knew were not normal. My pediatric nurse practitioner and I were trying to figure out what was happening. She attempted several times to order MRIs, CT scans, and X-rays, but Medicaid would approve the X-rays while repeatedly denying the more advanced imaging.

At one point, I even went to two different chiropractors because we wondered whether my symptoms might be caused by pinched nerves. The second chiropractor accepted my Medicaid plan and was able to take an X-ray. She didn't see anything that explained what I was experiencing, although adjustments sometimes temporarily relieved some of the pain and symptoms.

Eventually, my pediatric provider was able to refer me to a neurologist.

After waiting several months for that appointment, the neurologist was able to obtain approval for the MRIs that my primary care provider had previously tried to order. Because the request was now coming from a neurology specialist, Medicaid considered the imaging medically reasonable enough to approve.

By then, I was already 15 years old.

I still remember going back to the neurologist on February 21. I was sitting on the examination table while he tested different reflexes throughout my body with a reflex hammer. My left side barely responded.

Then he told my grandmother and me that I had Primary Progressive Multiple Sclerosis—PPMS.

My grandmother was there with me. She had adopted me and my two brothers in 2019 and had already been one of the most important people in my life.

I remember the doctor essentially telling us, “You have Primary Progressive Multiple Sclerosis. If you have questions, you can find it on Google.” He handed my grandmother a pamphlet and walked out.

A short time later, he returned with paperwork to have me directly admitted to the hospital.

I was scared. I was confused. And I was angry.

I had spent nearly three years experiencing symptoms without knowing what was happening to my body. By the time I received an answer, I had a progressive neurological disease, and damage had already occurred that could not simply be reversed.

That experience changed the way I viewed healthcare forever.

Over the following years, I was admitted to the hospital numerous times for worsening symptoms and flare-ups. During one episode, I experienced what is sometimes referred to as an “MS hug.” My entire body felt numb. Even my chest and the inside of my body felt numb, and although I was breathing, it felt as though my lungs themselves were numb.

I was terrified.

I sat in a hospital waiting room panicking and trying to understand what was happening to me. At one facility, an on-call physician ordered Haldol. I felt like the seriousness of what I was experiencing was being dismissed as though it were psychological rather than neurological.

We left and went to the only other hospital in the area.

I arrived still completely numb and frightened. Instead of first asking me what had happened or reviewing the history of my MS, some of the first questions directed at me were essentially:

“What drugs are you on?”

“Is it alcohol? Opioids? What did you take?”

I hadn't taken anything.

I was a scared teenager with a neurological disease who felt like my body had stopped communicating with me.

I eventually received an infusion of Solu-Medrol, or methylprednisolone, a corticosteroid commonly used in the treatment of significant MS relapses, and I was discharged without what I felt was a clear long-term plan for what came next.

Access to treatment became another battle.

For a long time, Medicaid would not approve Ocrevus, the FDA-approved disease-modifying treatment for Primary Progressive Multiple Sclerosis. Today, at 19 years old, imaging has shown more than 30 lesions—approaching 40—and I have only recently been able to begin disease-modifying treatment.

The medication I am currently receiving is not specifically approved for PPMS, but it has been the treatment option available to me. Even after Medicaid approval, obtaining it has remained complicated because it must be delivered through a specialty pharmacy. At times, I have depended on samples provided by my current neurologist, who specializes in Multiple Sclerosis.

Then there was pain management.

For a period of time, I was prescribed hydrocodone 10/325 mg to use as needed. I did not take it every day. I used it during the days when pain became severe enough that functioning normally was difficult.

For months, my primary care provider asked me to try Suboxone instead.

After repeatedly declining, I eventually agreed after being told that we could try it and, if it did not work, discuss going back to the previous treatment.

When I returned and explained that it wasn't working for my pain, the conversation changed. I was told that my brain was essentially creating “fake pain,” including newer pain in my neck and shoulder, because it was craving opioids.

At the same time, I was told that Suboxone could be taken for life.

That experience raised questions for me that I still carry today.

I have now spent months tapering from Suboxone. I have also had to advocate for myself regarding other medications that have helped me manage severe anxiety and stress.

And that brings me to something bigger than medication.

Healthcare is not experienced in isolation.

A person's physical health, mental health, trauma history, family situation, environment, insurance coverage, transportation, financial circumstances, and ability to communicate with healthcare professionals can all affect what happens to them inside the healthcare system.

My life has included more than Multiple Sclerosis.

I have experienced sexual assault. I have experienced domestic violence more than once. I have lived through chaotic, stressful, and frightening situations that shaped the way I respond to loud environments, confrontation, uncertainty, and situations where I feel that I have lost control.

Those experiences affect how I interact with healthcare, too.

When someone is already frightened, in pain, overwhelmed, or struggling to understand what is happening to their body, being dismissed, judged, rushed, or misunderstood can make an already difficult situation unbearable.

And everything written here is still only a small part of my story.

It isn't even the first piece of tape removed from the present, so to speak.

Why RedRiver Advocacy Exists

I cannot go back and change what happened to me.

I cannot give 12-year-old me the MRI that was denied.

I cannot give 15-year-old me a different experience when I was diagnosed.

I cannot undo the hospital visits where I felt dismissed, judged, or unheard.

And I cannot reverse the damage already caused by my disease.

But I can take everything those experiences taught me and use it to help someone else feel less alone when they are trying to navigate the same complicated system.

That is why I founded RedRiver Advocacy, LLC.

RedRiver exists to help people organize their healthcare information, prepare questions, understand their options, communicate their concerns, navigate insurance and administrative barriers, coordinate care-related needs, and advocate for themselves when the healthcare system becomes overwhelming.

I know what it feels like to sit in an examination room scared and confused.

I know what it feels like to wait months for an appointment.

I know what it feels like to have insurance determine whether you can access a test or medication.

I know what it feels like when someone makes assumptions about you before hearing your story.

And I know how much difference it can make when just one person is willing to listen, ask questions, document what is happening, and stand beside you while you find your voice.

No patient should feel invisible in their own healthcare.

No one should have to understand every insurance rule, medical record, referral process, appeal, medication issue, or healthcare bureaucracy by themselves while they are already trying to survive an illness.

That is why advocacy matters to me.

And that is why RedRiver Advocacy was created.

Your Health. Your Voice. Our Mission.

RedRiver Advocacy, LLC