The Rheumatology Lab

My journey

I’ve had JRA (juvenile rheumatoid arthritis) since age 4 and am now an advocate in my community, and I teach adaptable movement to empower all bodies to thrive.

My hobbies

Traveling, running, cooking and hosting my community.

My journey

Hi, my name is Melitta and I’m 30 years old. I am a wife to my amazing husband and a mom to my beautiful daughter (age 5) and recently took in my niece who is 8 years old. We currently live in Richmond, Virginia. I’m a graduate student pursuing a degree in social psychology and an inspiring entrepreneur. I have always dreamt about owning my childcare business and this year I’m stepping out in faith to start. Not only do I have a full plate, I was diagnosed with lupus, and rheumatoid arthritis five years ago. Five years ago I was hospitalized for three weeks because lupus had attacked my liver and RA (rheumatoid arthritis) had attacked my joints. I struggle daily with fatigue, pain, swelling, hair loss, and brain fogs just to list a few. It’s been a struggle to get my RA under control even with my current medications.

One of the hardest parts of my lupus and RA journey would have to be how much medication I had to get used to taking every day. I went from getting up and going through my day without having much to worry about to having to remind myself to take my morning and night pills. Not to mention my monthly infusion that leaves me weak for two days after. But through it all, it has taught me to appreciate the little things in life. I had to learn to grow and change with my condition. Learning to properly grieve for the life I use to have was the first step I had to take in order to move forward with a positive attitude.

The second hardest part is not having the energy to be the mom that I had always dreamt to be. Not being able to take my daughter to the park because of my sensitivity to sunlight or not being able to play outside in winter because my feet and fingers start to turn blue instantly, no matter how many layers I have on. Some days all I can do is lay down and watch my daughter play on her own and it breaks my heart. I have to constantly remind myself that I am enough and I’m loved by my family just the way I am.

I might have RA and lupus, but they do not have me. I had to learn along the way that I am not my illnesses. All I can do is take it one day at a time and try to dwell on the good days. Some words of encouragement I tell myself every day: We are warriors and warriors don’t give up no matter how tough the battle is. Asking for help does not make us weak, it takes strength and courage. Taking longer to accomplish a goal or a dream than most of your peers does not make you a failure. Remember life is a journey, not a race 🏃. Take your time and enjoy every special moment and lesson along the way.

My hobbies

Reading and DIY projects

My journey

In 2003 I fell off a cliff while rock climbing. The trauma from the fall accelerated my rheumatoid arthritis along with my degenerative disk disease, osteoarthritis, and bilateral hip dysplasia. Many many surgeries later, here I am.

My hobbies

Skiing (back before my neck surgeries), hiking, photography, reading, blogging, eating cookies, traveling, road biking

My journey

I was diagnosed with psoriatic arthritis in 2017 after a year of confusing pain and swollen joints. I had assumed it was just from working out as I was working to lose weight, but certain joints became too painful to even lightly touch. It took a long time to find the right medication and diet to help control the pain, and along the way I suffered more problems. Blisters formed on my hands and feet in 2019, which turned to painful cracks, and then I was no longer able to use my hands without gloves on. In 2020, I was finally diagnosed with Palmoplantar pustular psoriasis. A few more medication changes, and my skin finally cleared up. Being able to walk and use my hands again was life-altering for me. In 2022, I was diagnosed with Ankylosis Spondylitis, which explained a lot of issues with my spine. I was grateful for the answers, but I still have a lot to learn.

Throughout my journey, I constantly remind myself that I cannot control what happens, but I can control how I react to it. I use biologics and diet to control the disease and my immune system. I practice yoga daily, and I try to stay as active as I can with my two boys who are 9 and 6. On my darkest pain days, the love for my husband and children is what kept me pushing forward. I felt completely alone while looking for answers. My biggest hope is to be able to speak up and help someone else who may be struggling. If I help one person not feel alone, my pain will have a purpose.

My hobbies

I love to craft and make things. I knit constantly and enjoy making blankets. I love reading, especially with my kids. I go fishing as often as I can, and love spending time at the family ranch. I also volunteer with my sons’ football teams along with my husband.

My journey

My symptoms began back when I was in my early twenties. I am now 55 years old. I was experiencing swollen risks and fingers. I couldn’t dress myself. I couldn’t hold a cup. I had gone to several doctors and they thought I had Leukemia, Sickle Cell, Lupus, or Lime. I was so young that they were looking for a possible other diagnosis. Finally, a colleague referred me to Columbia Presbyterian, where I met Dr. Israeli Jaffe. Dr. Jaffe knew right away that it was RA. He got me on an aggressive treatment using Remicade and Methotrexate. His “motto” was ” an aggressive disease calls for aggressive treatment. Dr. Jaffe gave me my life back. I was able to run, dance and use my hands to even lift weights.

Unfortunately, Dr. Jaffe transitioned in 2014, and I needed to find a new doctor. I was a patient of Dr. Jaffe for more than a decade. I was lost and grieved for years. Symptoms started to reappear so, I settled with the group at NYU Autoimmune Group. Dr. Samuel is also amazing. Since the drugs have evolved from 8-hour drips to now 30 minutes, Dr. Samuel uses Simponi. I do feel like Remicade worked best. Dr. Samuel and I are now working together to minimize my new symptoms. I am hopeful and optimistic that we will find a combination of medications to minimize these new symptoms. I have good days and not-so-good days. On the days, I feel good, I make the best of them. I walk and enjoy those days. Eating healthy for me is a lifestyle and I have witnessed firsthand where food in conjunction with medication made a huge difference in having more good days.

My hobbies

Walking, reading, meeting friends for a nice dinner, dressing up and taking pictures

My journey

I was diagnosed with RA (rheumatoid arthritis) three years ago at the age of 24 and Scleritis in my right eye one year ago. Since being diagnosed, I have been learning the importance of advocating for myself. This year has been a year of self-growth, grace, and learning to love myself again.

My hobbies

Listening to podcasts, reading, yoga, and learning about health and wellness

My journey

From the onset of symptoms that began in early adolescence, I bounced from doctor to doctor. No one could figure out my diagnosis until I found my current rheumatologist of 20+ years. It took a while, but she stayed the course and eventually pieced it together. I’m seronegative, which means it doesn’t always show on tests. There’s no specific blood test for psoriatic arthritis. My case is complex. In addition to psoriatic arthritis and secondary autoimmune diseases, I live with epilepsy and vestibular migraines.

Living with all of it is challenging as an overlap syndrome has occurred. It is extremely frustrating & stressful. High pain levels, inflammation & fatigue interfere with daily tasks, relationships, employment, and the course of life. Managing psoriatic arthritis is essential even during bumps in the road. I work with my specialists to make the best possible treatment decisions. I’ve made lifestyle changes, such as dietary improvements, physical therapy & exercise while utilizing alternative treatments to ease symptoms.

My hobbies

Genealogy, Photography, & Music

My journey

I was diagnosed with rheumatoid arthritis in 2012 after months of severe knee pain followed by my hands, feet, shoulders, and knees. My diagnosis did not come right away. I saw a rheumatologist for a year, received treatments that worked for several similar diseases, and had no relief. After switching doctors, I was able to obtain a diagnosis immediately and start a more effective treatment plan. Over the next few years, I had failed infusions and a severe allergic reaction inducing pustular psoriasis with now a new diagnosis, and now unable to take TNF inhibitors. I do not let these two illnesses stop me from living my life. I strive to stay active, have a positive mindset, and support others in their journey.

My hobbies

Painting, hiking, and traveling are my favorite hobbies.

My journey

My journey with RA (rheumatoid arthritis) began decades before diagnosis. Beginning in my teens, I experienced pain and swelling in various joints, most consistently my knees and wrists. The symptoms would come and go, seemingly at random. An active teen at the time, it was generally assumed I’d overdone it somehow. With rest and ibuprofen, symptoms would ease back and I’d return to normal activities, clueless that there was something bigger happening in my body. By the time I graduated high school, I was beginning to have serious problems with my hands and wrists, predominantly my right hand as that was my dominant hand, with which I wrote, often for hours on end. Partway through college, following the birth of my first son, note-taking and typing became a consistent struggle. By my mid-twenties, I’d been diagnosed and treated for “tendonitis” in five major joints, some several times over. Looking back at what normal was for me then, it is crazy to me that I didn’t see it sooner. Knowing what I know now, I can see RA at play long before diagnosis. All the times it might have been noticed but was mistaken for something else. I can’t help but wonder how that might have changed my prognosis.

Unfortunately, although RA showed itself early and often, it took decades to receive my diagnosis. By the time I finally asked the right doctor for the right referral, I’d been misdiagnosed by seven separate doctors with carpal tunnel syndrome. Had that doctor not diagnosed me with tarsal tunnel (carpal tunnel for ankles) in both my ankles I may have taken his word for it and carried on destroying my joints. Advocating for the rheumatologist appointment to look for underlying inflammatory conditions was a vital turning point in my health battle. Three months, one blood test and a consult later, I finally had the answer, rheumatoid arthritis.

Armed with a diagnosis and a growing awareness that advocacy makes all of the difference, I began to fight for my health. Leaning into my science background, I used my well-honed research skills to learn everything I could about the disease, symptoms, treatments, and prognosis. My heart sank each time I read that getting symptoms under control quickly was essential for positive patient outcomes. Knowing it had already been years, I worried about the damage I had done pushing through the pain in my ignorance. Determined not to continue to contribute to my own destruction, I began trying everything and anything to gain control of increasingly disabling symptoms. Beginning a series of medications under the care of my rheumatologist, diet, exercise, stress management, it would take me years to find my path with RA. Years during which I would leave work, accept a disability diagnosis, spiral into and back out of various cycles of depression and acceptance, and slowly but surely find the answers to managing my disease.

Somewhere in the midst of it all, I discovered a new purpose. Resurrecting my passion for writing, I began to create a website, tenaciousme.org, with which to share my experience, research and most of all hope for others who have found themselves battling their own immune system like I had. Knowing the difference that information can make, I don’t want anyone else to be without it. I want them to understand that you HAVE to advocate for yourself. To always ask questions, to tell their doctor when a treatment isn’t working, to speak up when something doesn’t make sense. I want them to understand that they need to be in control of their own care and never hesitate to ask for what they need. We get exactly one body in this life, it’s up to us to protect it.

My hobbies

Reading, writing, watching fantasy and cheesy rom-coms, hiking, swimming, being in nature, traveling, and creating crafty things.

My journey

Like far too many others, my rheum journey began with a lot more questions than answers. In my early 30s, I began experiencing a variety of symptoms from extreme fatigue to weakness and dizziness to what I called ‘random achy pains’ (with no apparent cause). With all that, I spent four years being dismissed by doctors, suggesting that I was “just depressed” because I looked fine on the outside.

Once I developed visible symptoms including rashes and swollen joints, a rheumatologist said that I had “some kind of arthritis, probably autoimmune,” and started me on steroids. I spent another four years with a new rheumatologist, rotating through diagnoses and treatments without finding one that fit. It was only after I’d insisted on weaning off the steroids that further testing led to the diagnosis of sarcoidosis, a rare inflammatory disease that can affect any part of the body. I’ve since been diagnosed with rheumatoid arthritis and Sjogren’s syndrome, all ingredients in what my current rheumatologist refers to as my own personal flavor of “autoimmune soup.”

With more accurate diagnoses, we’ve been able to find more helpful treatments. Still, it’s a life-long journey with new symptoms, treatments, and side effects as passengers along for the ride. To that end, I’ve made it my mission in life to share my experience through advocacy and raising awareness, to help make the trip a little easier for others.

My hobbies

Writing, traveling, attending sporting events, concerts, & shows, or just staying home to cuddle with my husband

My journey

My journey began in my early 20s when my joints were swelling to the point of immobility. There were days my fingers were so swollen I couldn’t button clothing or hold a pencil (which is awful for an art teacher), could barely walk or even have enough shoulder mobility to dress myself. The hardest part was getting my body in motion, but I found gratitude in what little motion I had and found more mobility after each workout. Eventually, I was diagnosed with Rheumatoid Arthritis. Working out is my preventative medication. Through the pandemic, I found myself setting different goals, including flexibility, core strength, and mental toughness.

My hobbies

Camping, art (specifically painting and photography), walking/hiking, working out

My journey

I have been experiencing symptoms of RA (rheumatoid arthritis) since I was 14 years old and at the age of 24 I was diagnosed with rheumatoid arthritis. It took me ten years of searching for answers and physicians who believed me to get the medical care I need. I have a service dog who has been a lifesaver.

My hobbies

I love going on hikes, journaling, watching shows and movies

My journey

Six years ago, I could barely stand. After taking a step or two, my legs were known to buckle underneath me. I couldn’t even sit for very long because of the severe lower back pain, intense pain that would send sciatica down one leg or the other.

My condition was infuriating and random. Every morning I woke up paralyzed with stiffness. I was only 34, but I would roll out of bed like a feeble 90-year-old woman. I couldn’t lift my legs to put on underwear or jeans. I couldn’t bend over to put on my shoes. I had to swivel my body in and out of the car. I quit pilates, something I really loved and thought I might even become an instructor. There was a short period of time where I was completely immobile.

After an Ankylosing Spondylitis diagnosis, many doctors, medications, holistic advice, and years of trial and error to fix myself (including following a strict diet), I’m joyfully returning to a moderate activity level. I joined a gym, and I’m taking a few yoga and pilates classes a week. I’m swimming again, and doing a few rounds of the weight equipment when it feels right.

But, unlike before, when I had a “no pain, no gain” mentality, I’m going to heed the warnings in my body. If there is pain, I’d better rest and reassess. I’m grateful to say that my pain has never been as bad as it was six years ago, and I’ve been flare-free for 2 months.

My hobbies

I’m an avid pursuer of knowledge. I enjoy writing, taking walks in nature, spending time with my family, and drinking (and posting about) craft beer for my beer blog Lace & Lager.

My journey

I was diagnosed with Juvenile Rheumatoid Arthritis at just 15 months old. “How were you diagnosed so young!?” is usually the first question people ask. Well, at that age I had already learned to walk and my mother recalls that one day, I decided to revert back to crawling. Confused, she picked me up and noticed one of my knees was three times its normal size. She quickly scheduled an appointment with my pediatrician who later admitted me to the hospital. They ran a slew of tests and put me on an antibiotic IV to rule out that the swelling wasn’t due to an infection.

My pediatrician told my mother, “Worst case scenario she has rheumatoid arthritis or lupus.” I was released from the hospital 2 days later, (still with my softball-sized knee!) and the doctor asked to see me once a week to monitor the swelling. Come the second or third week, my mom noticed in the waiting room that my index finger was also triple its normal size. At that point, the pediatrician referred us to a rheumatologist, which lead us to Children’s Hospital of Los Angeles, where I was diagnosed with Juvenile Rheumatoid Arthritis (JRA).

My hobbies

Writing, painting, cooking, baking

My journey

I always had odd illnesses and periods of sickness growing up. I was finally diagnosed with lupus at age 21. For a few years, I was passed doctor to doctor trying to get help in what felt like a snowball of symptoms. I finally found a doctor that was able to get me on the correct medicine and work with me to make lifestyle changes that have increased my quality of life.

My hobbies

Rock climbing, beekeeping, crafting

My journey

Lupus – diagnosed about 9 years ago, revamped my diet and lifestyle and saw great improvement in my symptoms!

My hobbies

Reading, yoga, family and friends, travel, museums

Journey

Geri was diagnosed with lupus in July 2017. During the initial phase of her diagnosis, she turned to the internet and found that social media was a great outlet for connecting with other warriors.   

“It’s amazing to see how the chronic illness community can come together and be there for one another. I’ve gained so many virtual friends and hope to meet them in real life one day.” 

Hobbies

Geri loves to travel with her husband and family. Her most recent trip with her husband was to Japan. She also is a big Disney lover and hopes to visit all the parks around the world. Living in New York City has also grown her love for Broadway. She’s seen over 30 shows, and her favorite is “Spring Awakening.” 

Journey

Janya is a third-year medical student and a future pediatric rheumatologist. She has been a lupus survivor for 12 years. Despite the many challenges of her journey with lupus, her resilience and unwavering support have helped her navigate its complexities. “By sharing my experiences, I hope to inspire others facing similar struggles to embrace lifestyle changes and seek support, knowing that they are not alone in their journey toward better health and well-being.” 

Hobbies

Spending time with family & friends, cooking and trying new foods, playing with her dog and designing dog clothes for her & other pets through her business @HopetasticCreations. 

Journey

Elena is a physician and cardiology fellow. She was diagnosed with rheumatoid arthritis in 2018 while in medical school. Since then, she has also been diagnosed with a new vasculitis syndrome, which has caused various issues including high blood pressure, kidney problems, rashes, and foot drop (inability to move her foot). “It’s been a wild ride, especially while going through my training as first an internal medicine physician and now through a cardiology fellowship.” 

Hobbies

Exercising, cooking with her husband, going out to eat and hanging out with her cat 

Journey

Alice is a retired clinical laboratory hematology technologist. A few years ago, she was diagnosed with rheumatoid arthritis and Sjögren’s based on X-rays and an MRI. Alice has accepted the diagnosis and is now exploring new ways to manage her day-to-day life. “I try to dwell on the things I CAN do, not the things I can’t. As I discover what I can’t do, I just continue to adapt and find new ways to do them.”

Hobbies

Music (listening, singing, playing the instruments she can still play or finding adaptive ways to play), singing in her church choir and going to live concerts when the environment feels safe for COVID concerns. She also loves to read, watch documentaries or good–quality shows on TV and walk out in nature. 

Journey

Jamila was diagnosed with juvenile-onset/adult rheumatoid arthritis at age 17. By the age of 40, she had undergone bilateral hip replacements, and she is now approaching her 50th birthday. Despite a long and challenging journey, Jamila has turned her experiences into motivation. Through social media and personal connections, she has touched countless lives. In 2018, she was honored as the Adult Honoree by The Arthritis Foundation’s Charlotte, North Carolina chapter. Since then, she has received two additional diagnoses: mixed connective tissue disease and discoid lupus.  

“I’m sharing my story to advocate for early detection and treatment and equity in treatment to help shine a light on and disrupt ableism and encourage those living with RA and related conditions.” 

Hobbies

Reading, listening to music and photography 

Journey

Cheryl was diagnosed with rheumatoid arthritis at age 21 and has now lived with the condition for exactly half of her life. Her journey has been marked by ups and downs, from periods of medicated remission to postpartum flare-ups. Cheryl is also an occupational therapist, patient educator, host of the Arthritis Life Podcast, and creator of the Rheum to THRIVE empowerment program. “My goal is to live my life to the fullest *with* arthritis!” 

Hobbies

She loves reading, swing dancing, gluten–free baking, making videos and spending time with her family. 

Journey

Lora was diagnosed with seropositive rheumatoid arthritis shortly before her 34th birthday. Although it has been a difficult journey, she has experienced improvement in joint pain and mobility through a combination of medication, diet, and lifestyle changes. “While I would never wish to have this disease, I am also grateful for it because it has given my life new meaning. It has given me a greater appreciation for all the little things in life I once took for granted. It has forced me to make my health a priority. And it has deepened my faith, causing me to fully rely on God for my strength.” 

Hobbies

Fishing, scuba diving, cooking, and baking  

Journey

In the summer of 2022, Meghan was diagnosed with rheumatoid arthritis. Despite this challenge, she continued exercising and participating in cheer, transforming this adversity into one of the most valuable experiences of her life. 

“I learned that I could conquer anything I set my mind to. I want to help others feel confident in their everyday lives. I want to explore how gut health relates to disease and how many other autoimmune disorders can be improved by having a healthy gut. I discovered that I have a passion for helping others, and I want to share my experiences with the world.” 

Hobbies

Reading, lifting weights, running, cooking, baking 

Journey

When Alena was 13 years old, she underwent spinal fusion surgery for severe scoliosis. During the procedure, her doctors discovered inflamed joints, leading to a diagnosis of ankylosing spondylitis and rheumatoid arthritis. She began undergoing treatments for her rheumatic diseases and was later diagnosed with fibromyalgia. Alena has been bravely fighting her battles ever since.  

“I have had my highs and lows but have grown to embrace that this is a part of me. I’ve met my best friend by discovering we share our battles. I am so excited to possibly meet others as well.”

Hobbies

Traveling, drawing/art, reading, going for walks, hanging out with friends and trying new restaurants

Journey

Jodie was diagnosed with lupus nearly 30 years ago, just a week before her 13th birthday. She has been actively involved in the lupus community at local, provincial, national, and international levels. Jodie even started her own teen support group and has engaged in advocacy, conferences, and newsletters. Her extensive involvement led to co-authoring the book “Fabulupus.” “My life as a patient has helped in my career as a healthcare social worker and I continue to look for ways to advocate, educate and advance equity.” 

Hobbies

Her side business of sewing/embroidery, time with her two children, reading, baking, walks in nature, movement and mindfulness