Natasha’s Autoimmune Story

MEET NATASHA

Hello! My name is Natasha, I’m 27 years old and I live in North Carolina with my husband. I’m a wedding videographer with a passion for crafting, sewing and costuming!

 DIAGNOSIS

I’m definitely no stranger to health issues, as I was born with a congenital heart defect called Tricuspid Atresia, where the heart’s tricuspid valve doesn’t form. As a result, I’ve had five open heart surgeries and countless smaller procedures. It wasn’t until after my most recent pacemaker insertion surgery in 2018 where I began experiencing alarming symptoms that ultimately led to my diagnosis of Rheumatoid Arthritis.

Looking back, my symptoms began before then, around 2017. I started to notice my feet hurt all day every day, no matter what I did. I thought, “hey I’m just wearing bad shoes, it’s fine!” so I ignored it and lived with it. About 2 weeks before my surgery, I had to go to the emergency room for a pinched nerve in my left arm. I had woken up at 2 am with the sharpest, most intense pain I had ever experienced, radiating down my arm and into my hand. It felt paralyzed, and I couldn’t move or even feel it. I attributed it to nothing more than maybe I had overdone it with lifting heavy camera equipment at work. Flash forward to three months post-surgery recovery, my symptoms began manifesting themselves in small, spread-out instances. I would wake up with pain in my index fingers maybe once a month. I would get carpal tunnel constantly. I eventually developed Morton’s Neuroma in my right foot. Everything went away as quickly as it arrived, and I was able to continue my wedding plans, get married, go on my honeymoon, and finish off 2018 as normal.

In early 2019, I kept waking up with shoulder pain that wouldn’t go away no matter what position or bed I slept in. I went to my primary care doctor and a chiropractor, believing it may have been the same pinched nerve acting up again. I kept believing nothing was wrong with me that couldn’t be explained by stress or was work-related, until one morning, when I woke up with a very red, very swollen index finger. When the carpal tunnel came back to stay, along with constant trigger finger on both hands and my pinky finger swelling and unswelling almost every other day, I knew this was more than a pinched nerve. In August of 2019, I was officially diagnosed by my primary care doctor after some blood work. I was referred to a rheumatologist, but would have to wait four months for an appointment. Those were the longest four months of my life.

Because I wasn’t able to get any treatment during that time, my symptoms only escalated. I could feel the pain spreading slowly to every joint, until It would take me 1-2 hours to get out of bed every morning. I dreaded going to sleep because the pain I would wake up to was unbearable. For almost a month, I couldn’t walk more than a few feet to the refrigerator, and I was beginning to lose control of my hands.

I remember when I had first researched my symptoms and realized they all aligned with having RA, I was terrified. The worst thoughts crossed my mind, from “I’m going to end up in a wheelchair,” to “I will never be able to use my hands again.” After my diagnosis, I was at a complete loss, seeing how everything I loved was slowly taken from me. I couldn’t film weddings, because I could barely hold a camera. I couldn’t paint or draw, because my hands were stuck in a straight position. Sewing and making costumes became impossible. I can’t count the number of times I cried and thought my life was over. On top of that, I feared for my heart health. I knew I wasn’t able to take any of the medication usually used to treat RA because of my pre-existing condition, but if it wasn’t treated, it could affect my heart even more in the long run. My mom and I tried every natural remedy we could find in the hopes that I wouldn’t need medication, including completely changing my diet, slowly but surely. Unfortunately I ended up developing an “all food is bad and makes me feel bad” mindset, so I lost a scary amount of weight. I was cutting things out of my diet so abruptly that some days I felt I had nothing to eat.

To make this already long story a bit shorter, I was terrified to meet my rheumatologist that November, because of the horror stories I read on the internet. However, five minutes into my appointment, I never felt like I was in better hands. I’m incredibly thankful that he really listened to me, encouraged me to continue with natural remedies and diet changes, and didn’t scare me but rather made me feel like everything was going to be alright after all. Although I did give in to needing medication, he respected my wishes to refuse methotrexate or anything stronger, and I was instead put on 200mg of Plaquenil. It’s now been almost 7 months since I’ve been taking it, and it’s changed everything for the best!

I’m also incredibly thankful to my family and my husband, who have been so encouraging, helpful, and understanding. My mom is constantly finding me new recipes and foods to try, and has completely changed her own diet along with me!

 LIFE CHANGE

It seems crazy to me how I lived my whole life with just my heart condition, that had never once hindered me or prevented me from living a normal life. But now with RA, my new normal looks like this: watching what I eat and knowing that eating out will never be the same, being careful about what I lift, watching how long I’m working on a keyboard or playing video games so my hands won’t cramp, asking my husband if he could open every type of bottle for me, being careful not to overdo on the days I feel great, and knowing that some days will have to be lazy days no matter how much I needed to do. Oh, and knowing rainy days are my worst enemy!

My hands are currently still the most affected, I haven’t been able to make a fist in who knows how long and I will probably always have some form of trigger finger. I have to be incredibly careful with how I use them, but I’m thankful that the combination of the Plaquenil and a healthy diet has mostly allowed me to return to all the things I love.

 HEALING

Changing my diet has been my saving grace! I follow a mostly Paleo/slightly modified AIP diet, concentrating most on eating dairy free and grain free. Anything fried, processed, or high in sugar was immediately eliminated. If there’s anything I’ve learned through this process, is that there’s a healthier substitution for pretty much everything!

 STRUGGLE

Sometimes I still struggle with the fact that something like this could happen to me, that I have to live the rest of my life having an illness where I’m always in pain, and that will sometimes hinder me from my hobbies and responsibilities.

INSPIRATION

“This too shall pass.”

It may seem cliche, but the phrase has been on my mind ever since my diagnosis. It’s always been the one phrase I would tell myself before a big test or a nerve wracking presentation, and I always took comfort in it, because I knew whatever was worrying me would be forgotten in a day or two and everything would be fine. I know RA is different, because it’s for life. But I feel that the journey can only go up from here. My worst days are already long behind me!

Find Natasha | @watersofglass