My Journey
The Beginning
At 14 years old, I lost my father to colon cancer. Thanks to my mother's paranoia, she found a doctor that would approve a colonoscopy for my younger siblings and I. We learned that 3 out of us 4 inherited Familial Adenomatous Polyposis (FAP). At 15 years old, I was the first of my siblings to get my entire large intestine removed. I had an ileostomy bag for two months before I had surgery again to create a 'j-pouch,' which allows me to live without the bag. That's where my journey began.
Welcome to adulthood
Following my Total Colectomy, I started to develop low blood pressure, knee stiffness, and fatigue within a year. It progressively got worse but having been diagnosed with anxiety, I was treated as a hypochondriac. It wasn't until I was 18 years old, that I saw my first adult doctor and after implying I was making up my symptoms, I very clearly looked at him like he was crazy and he subtly changed his tone and said he'll order labs though just in case. I was soon diagnosed with Thyroiditis. However, things progressed and I eventually saw an ENT where I was diagnosed with Hashimotos. But despite trying medication (and having a reaction to the fillers), and eventually normalizing my thyroid levels, my joint pain and stiffness continued to get worse.
Autoimmune
At some point, my Primary Care Physician (a new one), ran tests and bloodwork suggested Rheumatoid Arthritis. Eight months later, I got in with my first Rheumatologist, ran labs again, they came back normal. Aside from telling me I was partially hypermobile, likely have Sjogren's, and have very low iron, they basically told me my only option was to try different OTC pain medications until I find something that works...what? Second Rheumatologist I establish with tries to downplay my pain as something normal and likely attributed to having flat feet. It wasn't until I brought up in casual conversation that I've dislocated my knees four different times that his eyes bugged. He took me a little more seriously and performed a test where he diagnosed me with Hypermobile Ehlers Danlos (hEDS). He figured he solved my pain but when I expressed further concern, he said he'll order an ultrasound of my hands and feet 'to rule out arthritis and ease your concerns." Joke was on him; he soon diagnosed me with moderate Rheumatoid Arthritis based off that ultrasound and promptly placed me on medications at 26 years old. In time, Lupus and Fibromyalgia were added to the mix when I transferred to my 3rd and then 4th Rheumatologist (they keep retiring on me). Most recently, my gallbladder developed stones and had to have it removed, causing complications. This has motivated me to reach out and connect with others.