My Eyes, My Purpose
State: North Carolina
Congressional District: NC04
Chronic Pain, Eye Disease, Immune Disease, Rare Disease
Issues and Challenges
Montana has encountered: Access to Medicine, Copay Issues, Insurance Issues, Invisible Illness, Step-Therapy / Fail First
My Eyes, My Purpose
My world stopped on December 17th, 2018. In the months leading up to December, I experienced eye pain, eye redness, blurred vision, pupil deformity, and yellow discoloration tears. After many doctor and urgent care visits, I was positive it was not pink eye, especially in both of my eyes, after taking the antibiotic given. However, after getting diagnosed with pink eye again for the third time and my vision and pain worsening, I knew something was off, and I needed to see an eye doctor.
I was optimistic about the eye appointment, and I assumed it was a scratch in the eye and thought the treatment would be an easy fix. But I never would have thought it would be a rare eye disease that would alter my life from that moment on. There is never a right time to get diagnosed with something life-changing. However, getting diagnosed young puts a halt to your life and your vision of your life. When I turned 18, I was diagnosed with Uveitis and a high risk of Glaucoma, with my eye pressure above average. I was sent to a specialist to confirm the eye doctor's diagnosis and to begin the correct treatment.
During my diagnosis, I was in the mix of finals. I had two left, and one was a chemistry lab which was becoming difficult with my eyes in the same condition as before, but now more sensitive with the number of drops I was on to reduce inflammation and correct my vision. I was given a goody bag of medicine, such as steroids and dilation drops, and glasses for when my eyes were dilated. I will never forget my anxiety going to class and lab due to my classmates' looks and judgments. Fellow peers told me multiple times I should not be at school because I can be contagious or look contagious with how my eyes are. Even though they did not know what was happening, they gave their opinion and diagnosis. The truth is I wished it was pink eye, not a rare disease that other specialists and I were unsure if my vision would be affected, after all around 30,000 people in the US go blind every year with Uveitis, and it counts for 10-15% of all the US blindness. It is also the fourth leading cause of blindness for younger patients under forty in the Western World. So there was a chance the damage I had in my eye would be irreparable and cause vision damage. But it was too soon to tell.
Fast forward to four years later, I still encounter some of the same symptoms and see an eye specialist regularly every three months to confirm no changes in vision and damage. This is my fourth eye specialist. I switched to this eye specialist when my last specialist wanted to put me in surgery to reduce the damage I had with my pupils and uvea. However, I was skeptical due to still having 20/20 vision. I was anxious that if I went through surgery, there was a chance my vision would alter, and I could go blind. So I went for a second opinion, and the specialist agreed that I should not go into surgery until I started losing my vision. He also said the amount of medicine I am on is too much and is causing more damage. That was an exhausting transition, from taking me off loads of medication to almost none, then eyes not reacting well, then having to be on meloxicam, then months later, it stopped working and started the transition of methotrexate to now Humira. I've been told it's not if I'll have eye surgery; it's a matter of when. We hope with medicine and maintenance, I will not need it till much later in life.
My Uveitis is chronic; it's an autoimmune disorder, and having one autoimmune disease can lead to others. So I see an eye specialist, a rheumatologist, and a gastrologist. I was diagnosed with seronegative spondyloarthropathy at age 20. I have had chronic back, and joint pain since age fifteen, and every physician I visited said it was due to my being a competitive dancer. I stopped dancing when I went to college, and my chronic pain still was present in my large joints, back, hips, ankles, heels, wrists, fingers, shoulders, etc. So I have two autoimmune diseases but am getting tested for a few others.
Since being diagnosed, I have had a new normal. I changed my diet and lifestyle to put my health a priority. I did this to try and avoid injections. Although I could not avoid injections to ensure my health would not worsen, I do not only rely on injections to feel better. I am on vitamins, avoid alcohol, exercise regularly, eat healthily and try many outlets to reduce stress because stress causes inflammation. With injections such as Humira, I will deal with insurance companies not wanting to pay for medications that allow patients to have a functioning and normal life. They usually want patients to go on step therapy, which causes unnecessary pain and trauma. Being a patient is a full-time job, from going to doctor visits, calling insurance companies, advocating for yourself, and then paying ridiculous amounts of bills just to feel a sense of relief from a chronic illness. Life has uncertainties; look at me, diagnosed at 18 in college and still dealing with it today. With these uncertainties, we need insurance that represents the uncertainties that will not make us patients go into medical debt; after all, most college students have student debt.
My Motivation and Inspiration
I have been a patient for four years, and with my struggles, I believe in patient education, support, and empowerment to ensure patients are seen and heard. I want the healthcare and insurance industry to realize that being a patient is a full-time job on top of everyday pressing issues, and it's not fair to pick finances over receiving your medication.