LAURA

Hello there! My name is Laura Miller, and I am a dancer in Orlando, Florida. I dance full-time in the Marilyn Monroe show at Universal Studios and have done various dance and stilt walking jobs at Disney, SeaWorld, Busch Garden, and other shows. As a dancer who comes from a sports background, my body has always done what I needed it to do. However, that has not been the case recently.

At the beginning of this year, I started getting some strange symptoms. I was experiencing tingling in my hands, feet, and face, itchy bottoms of my feet (that was an odd one), and the feeling that there was concrete in my limbs. In February, I learned that I would embark on a lifelong journey with rheumatoid arthritis.

A month after getting diagnosed, I ended up herniating a disc in my back. Surprisingly, this was the best thing that could have happened to me, because it forced me to go on short-term disability for three months. This time allowed me to not only heal my disc but to find my footing while navigating a new life with an autoimmune disease.

In those months, I spent every day caring for my body and testing things that might alleviate some of my pain to allow me to continue dancing. I found some success in things such as daily movement, meditation, infrared saunas, cryotherapy, physical therapy, icing after activity, and compression sleeves.

Though I was only diagnosed eight months ago, what I’m learning about both myself and life is something I am incredibly grateful for. I have gained a great deal of perspective on the people and parts of life that I value the most. The silver lining of joining the spoonie community has been connecting with other chronic illness warriors.

Through my Instagram Reels and TikToks, I try and bring a sense of light-heartedness to chronic illness. My hope is to give people even just a minute a day to take their minds off of the negative aspects that come with the spoonie life.

As I have always had a passion for helping people, I love sharing the tips and tricks I’ve learned along the way as well. I would love to connect with you all, so feel free to join me @sickandthriving on both platforms. Lots of love to everyone!

JAMES

My name is James and I’ve had axial spondyloarthritis (AS) since I was 17. The first few years of living with chronic pain felt like a war. Every day was a fight to keep up with everyone else, to achieve everything I had planned despite the pain, to not let the AS stop me or interfere with my life. I eventually learned a better way to live with AS.

After years of ups and downs, flare-ups, successes, failures, tears, self-discovery, and self-reflection, and with the help of mindfulness meditation, I stopped wanting the AS to be gone and finally accepted that it was there. I found that once I came to terms with the fact that my life wasn’t going to be how I planned it, that I didn’t have the energy that my friends had, and that the pain might never be gone, my life actually improved.

I realized that the key was not to think about my AS as something I had to fight, but as a companion on the journey of my life. Sure, it’s not the companion I would have chosen, and we really don’t get along sometimes. We still do fight occasionally, and I get angry and upset. And some days it does feel good to say “screw AS!” But most days I do feel much more at peace with AS because I’ve learned to accept it into my life.

This is the one thing that I would pass on to other people on the same journey – don’t always look at your chronic illness as something that you have to fight against, but rather as something to accept into your life, so that you can look past it and begin to enjoy the journey that you’re on.

AMY

Hi everyone, my name is Amy Rohrer. I am a yoga teacher, Ayurvedic wellness counselor, wellness & RA warrior, and first-time mama to becoming this December 2021!

My RA story started 7 years ago at the age of 27, although there were years of chronic back pain and injuries before that I believe all played a part in the disease progression.

So when I woke up one morning barely able to move my neck and feeling the stiffness move to my hands and feet, it forced me to start asking new questions, to learn how to be with the uncomfortable, and to switch gears from my outward achieving to inwards inquiring.  I vividly remember asking myself these kinds of questions… 

Why did this happen? Who am I if I can’t do my job, my usual activities, and things that defined me as me? What is this new chapter trying to teach me? 

One thing I should also mention is that I had grown up seeing my mom live with RA my whole life. Just a few months after she gave birth to me, she went into a big flare, and unfortunately with this being almost 35 years ago, there were not a lot of medication options, and her disease continued to progress severely over the years.

There are many memories I have of my mom being in bed, struggling to get dressed, needing help to get off the toilet, seeing the pain on her face but never really understanding what she was going through. Over the years she has had a lot of joint deformity in her hands and feet, had 6 inches of her bowel removed due to a medication complication, followed by a hip and two knee replacements.

She is the ultimate RA Warrior for so many reasons, and I could write a whole post just on her story…but I’m sticking with my experience, I won’t lie and say I wasn’t terrified in the beginning learning that I now had this same disease I had watched my mom struggle with my whole life. Upon diagnosis, I cried, I was shocked, I was angry…but eventually started to realize that I couldn’t let her journey define mine.

I knew I needed to take some time to honor my healing, to process, to push pause on what life looked like then so I could implement some positive new ways of managing this disease in my life. And at that point in time yoga had been my saving grace and was the one solid thing that brought me a sense of peace, connection, more ease on the hard days, community, and feeling safer in my body.  I had this feeling, that if yoga was helping me feel better in just 1 hour x day, what would be the effect of diving deeper into the philosophy behind the practice? Becoming a yoga teacher seemed like a bucket list dream for many years, but my sudden illness with RA lit a fire inside of me that pushed me to take the leap of faith. At this point, I had nothing to lose!

So, I quit my job and left for a 3-month trip to an ashram in the Bahamas to devote time and space for my healing through a 200 hr. Hatha Yoga Teacher Training. There are many synchronicities that led up to this opportunity seamlessly manifesting… long story short…when I put this intention out there, the universe was there to provide in surprising ways and the money I didn’t have, seemed to all line up to pay for the course. 

Looking back, this experience at my yoga training was one of the hardest things, yet best decisions of my life. Going through this process, it was as though my lens of life flipped without the distractions of being back home in my normal routine and environment.

I realized that I had burned myself out with my ‘do do do’ mentality and the stress of university, had a lot of unprocessed trauma from the past, and also had a lot of fear with letting love into my life from past relationships, which was actually a reflection of the love I was giving myself and the ways I would cope before my diagnosis. So, I began the process of unlearning these patterns, these ways of thinking, the limiting beliefs, and started to let love back in, starting most importantly with loving myself.

Now 7 years later, life looks very different than it did upon that scary diagnosis at the time. But I never forget the journey from there to here and I am thankful in many ways for it. While there have still been many challenges on the path since then, including changes in medication, flares, a car accident, quitting my corporate job to start my own yoga studio- my ability to ride the wave of the ebbs and flows is what supports me through life’s challenges.

Yoga is not a work-out, it is a work-in, and this is the point of spiritual practice- to open our hearts and focus our awareness so that we can come back to the truth of who we really are, to remember what we already know and be our unique self! Being our authentic selves is the biggest competitive advantage we have in this life. And now as I write this… I am happy to report I have conquered another fear, which was coming off of methotrexate so that my husband and I could start our family.

This was a big fear for me to face, even with all the self-growth I had done, I know many of you can relate to the fear of regressing back into a flare after you finally start to feel better. I was scared to come off MTX, to switch to a medication that would be safe during pregnancy, and the unknown of that journey. And while I did flare coming off MTX, I’m happy to report that it was ALL worth it. I was able to get back on track and successfully become pregnant naturally! My other fears were how my body would handle pregnancy, and of course the potential to flare and physically manage the stress of caring for a newborn post-partum.

I am now 7 months pregnant so I can’t share yet what my delivery or post-partum is like – but I’m SO in awe and amazed at how my body has been able to handle this pregnancy… 1st trimester was the toughest, but 2nd trimester I felt amazing… and hoping that continues now that I am in the 3rd trimester and have a few months left to go until we meet our baby BOY 🙂 All the work to get here was worth it, and I know that the major lessons that RA has taught me of resilience, compassion for myself and others, courage, and grit will be the absolute best gifts I can give my son.

While I wouldn’t wish this disease upon my worst enemy, I am proud of the person it has shaped me to come. I’m also so grateful for the community of other warriors that inspire me to get out of bed on the hard days and give myself grace along the way. To chat, learn more about adaptive yoga & Ayurveda, or just connect and cheer each other on please feel free to reach out to me to connect over at:

IG: https://www.instagram.com/yoga_with_amy/

FB: https://www.facebook.com/yoga.w.amy

 

PETE

Hi! I’m Pete. I live with severe rheumatoid arthritis. 

Thanks to a pretty potent “cocktail” of drugs and other treatments, I had my symptoms relatively under control for a number of years — until we decided to start a family. That meant being off my medications for quite some time — which resulted in multiple joint replacement surgeries and significant changes to my body.

I have openly shared my journey on television, social media, and at numerous Arthritis Foundation events. Working in media, I’ve always felt that I have an obligation to educate people about arthritis — and to create awareness for those of us who are living with some form of chronic illness.

I recently created the #PSNeverGiveUp website and podcast and am establishing The PSNeverGiveUp Foundation to provide grants and resources for people who are dealing with infertility issues while managing chronic illness.

Living with chronic pain can be difficult. One of the most important things for someone who’s living with chronic illness to realize — is that you are not alone.

I’m very active on social media and am always available to chat. I also invite you to check out my website, PSNeverGiveUp.com

Thanks for taking the time to read this — and P.S. — never give up.

 

BERINA

Hi, my name is Berina and I’m living with rheumatoid arthritis for almost 10 years. This disease changed my life, from being very active to an almost disabled person (have already serious hand and foot deviations). All my joints are already hit by osteoporosis also.

From the very beginning, I struggle with everyday joint pain. Unfortunately, standard medicines don’t help me much because in addition I have anemia and cannot take heavy doses.

I try to practice whatever I find could be useful for my health improvement, from food, natural remedies, exercise, and especially work on my mental health because I am convinced that it is strongly connected with my condition.

Anyway, decided to join all arthritis-affected patients on the Instagram community to support each other with advice on how to fight this very serious and painful illness and spread positivity in our everyday struggle.

Sending hugs and positive energy to all of you!

PRITI

Hey all! I’m Priti but you might know me as @mrs_ra_hunter, I’m 41 years old, an accountant, and live in London with my husband and 2 children.

I was diagnosed with Rheumatoid arthritis about 3 and a half years ago. It took almost 2 years to diagnose, and I was in a lot of pain, and pregnant when they realized.

After I had my little boy, there was a massive blur of pain. Looking after a toddler and newborn and I was convinced I had to be dying to feel so so awful.

With my meds and a lot of help and support from my mum, I am in a better place now and have accepted that I need to slow down, the last 18 months have been hard, but I have preferred working from home instead of the office and feel like I have more energy for the children.

When I was initially told I had RA I was so relieved that they had found the cause of my knee pain and could fix it. It was a long while before I realized that this was my life. I only found this amazing community recently and have learned so much about myself as well as this illness. I want to help others in any way I can… we all need a friend hey.

And me? I like reading, coloring, patchwork, and picnics when the weather holds up. Lots of tea while doing all this too!

Thanks so much for reading. xx

AMY 

I was diagnosed with JIA / hypermobility / uveitis at a young age. Roughly 7 years old but my symptoms presented from about 4/5 years old with swollen painful knee joints.

Now that I’m 26 I have learned so much along the way and my acceptance of my arthritis has even caused me to be thankful in a weird way. It has made me who I am today. I am strong, I am empathetic, I know the real importance of not judging a book by its cover and I am grateful for how understanding a person I am.

It took a long time for me to fully admit to myself about what I was dealing with daily, I used to be in such denial at times but ignoring it did not make it go away.

Since my diagnosis, I now live a relatively normal life with some daily struggles, but my arthritis is well controlled with my biologics, tocilizumab. Unfortunately, I have some damaged joints and have since developed osteochondritis dissecans as a teenager but none of them need replacing yet.

It took time for me to understand what was going on with my body and what it needs. My stubbornness and determination usually stop me from asking for help but I’m still working on this!! Every day I am learning. Arthritis is a big part of my life and I have accepted that, but it does not define me as a person.

LINDSEY

Hi, I’m Lindsey and I’m 34 years old. I’m a wife to James and a mother of 2 to Emiah and Teddy.

My journey with RA started at around 16 years old. I experienced pain in my legs and knees with occasional swelling. I visited my GP to be told it was growing pains. Something I just accepted and never questioned until the pain and swelling got worse. My knees would literally be the size of footballs. I wouldn’t be able to get out of bed in the mornings, I wouldn’t be able to walk properly or drive my car.

So, by age 17 I’d had enough of being fobbed off. I changed GP’s and suddenly I was taken seriously. I went to the new GP with my symptoms and straight away I was referred to a specialist. BUT, because nothing was showing my blood, apparently it couldn’t be Arthritis?!! How many times have we experienced this?!

I went back and forth loads of different specialists and hospitals over an 18-month period. I was told that I’d need an operation on my knees (a cartilage replacement I think

it was), but that I’d have to have it done again in my 40’s and so on. So, I refused that (thank God). They also threw the awful ‘C’ word around at one point. You can imagine what was going through my head leading up to a diagnosis.

But arthritis is in my family.

My mother and my grandmother had Arthritis so I kind of knew that I’d have this diagnosis eventually! And then 18 months later, it finally came!

I don’t even know what I felt at the time. It was quite a numbing experience. Even though I knew it was coming, I was just relieved it wasn’t anything worse. Isn’t that a crazy thing to say! I think at that young age I didn’t really take it in properly. I didn’t do any research into it, I didn’t question anything, I had no real idea how it would affect me long term.

I just accepted it. I accepted medication and that was that.

But there was no help given to me other than being told medication was my only option. No one gave me direction on how to deal with it or what to expect! It was a very surreal process.

I’ve tried so many different medications over the years. Nothing seemed to work and then I was introduced to Methotrexate at age 23. It was genuinely my little miracle. It worked wonders. I started on Tablet form and had zero side effects. I was so lucky!

Then fast forward a couple of years. I met my husband and we decided to start trying for children. So, I came off Methotrexate to start this process. It was during this time that I properly suffered and I experienced RA at its very worst. Being on Methotrexate had almost masque my real RA. And coming off unleashed the beast!! I found that my RA had spread to every joint in my body. And that is not an exaggeration. I now have it in my knees, feet, hands, arms, shoulders, etc.

Before we had our oldest, we suffered losses. The worst time of my life. I thought I was breaking and once again my body hated me! Not only was my body and my mind going through strain with failed pregnancies, but I was at the height of my pain throughout my whole body and that was my darkest time of all. I was stuck! Stuck between desperately wanting a family and desperately wanting to be pain-free and back on medication.

I had the unconditional support of my husband! But it was my body! Only I could decide what I could deal with physically and mentally. It was only me who could decide what I could handle most. Thankfully, I decided to persevere by trying for a family. And I had to find a way of dealing with my RA. I’m now so lucky to have 2 healthy beautiful babies! And now it’s time to concentrate on me. On my physical and mental health.

I ended up coming off all medication until only last year because of all our losses I didn’t want to be on anything that could make the situation worse. So, I was on no treatment for a period of 5 years altogether. I don’t know how I did it. It was tough. I had some low days/weeks/months, and the pain was like nothing else I’ve ever experienced. Even worse than childbirth. We all know that when pain strikes it affects our overall mood.

To have that level of pain day in day out, with no sleep added into the mix, took away a little piece of me bit by bit. But my husband is my rock! And he got it, he understood me! And he helped me every step of the way. And now I’m getting stronger. I’m getting so much better at managing my health and putting myself first with things. But it’s not easy.

I have suffered for so many years. And there were certainly so many times where I felt alone and isolated. I would never want anyone to feel that! And that’s why I started Arthritis_andMe,  to try and help others to not feel alone.

But what came as a surprise, was that in turn, it helped me more than I ever thought was possible. I’ve truly learned about everything that comes with RA and I will be forever grateful to everyone I have connected with along the way.

 

LENE

I have had rheumatoid arthritis for over 50 years and was diagnosed in what I call the Dark Ages of Rheumatology.

Back then, this meant there were no treatments beyond gold injections and aspirin, neither of which did much for me. I spent a lot of time in hospitals, but by age 16 I was finally discharged with two shiny new hip replacements and an equally shiny power wheelchair. I never looked back.

Since then, I have moved from Denmark to Canada, went to university for a master’s degree in social work, found work in the human rights field, and built a life. It wasn’t easy — my RA was still uncontrolled, but thankfully relatively quiet for a few decades. That is, until 2004 when I had a horrendous flare, months of intense inflammation that ate of my life. It was so difficult that I could only cope by making a promise to myself that it was okay to exist if we couldn’t find a solution. I don’t think we talk enough about the severe depression, even suicidal thoughts, that can accompany uncontrolled RA.

I finally got funding for a biologic medication, and it was my miracle drug. It allowed me to slowly build back energy and ability, although never quite back to where I was before. I saw it as getting a second chance at life and decided to use this gift to pursue my lifelong dream of being a writer. It’s now 17 years after that first injection of a biologic and I am literally living my dream. I am a blogger, freelance writer, and author of several books (as well as an RA and disability advocate). That’s the short version.

The longer version is this: following your dreams when you have a chronic illness and disability requires a complete re-think of how to get there. This all while managing the deep frustration that your process isn’t linear but slowed by your energy and ability levels and regularly interrupted when your RA needs throws a fit. It’s helped me to remember that even the healthiest person will not have a linear journey — life happens to us all. For me, the trick is to see obstacles and delays as an interruption, rather than an end. Sometimes I need to pay more attention to my health, but my dream is still there, waiting for me to pick it up again.

I spent a lot of my life struggling with everything I couldn’t do. Finding a medication that worked was the first step to better physical health, but also better mental health. Learning to focus on what I can do (instead of what I can’t) was the start and then I began to actively look for small moments of joy and beauty every day. It is work — sometimes more than most — but it has changed my life for the better. I still have chronic pain, take medication, deal with fatigue, and have weird symptoms. But coping is a lot easier when I find a way to love my life, RA, and all.

Follow along on Lene’s blog at, The Seated View.  

MATT

Every morning before I start work, I take my German Shepherd-hound mix, Captain, on a short walk through my neighborhood. On those walks a few years back, I noticed an intensifying, bone-crunching pain radiating in both my hands and feet. The pain became so intense that I hobbled and forced my way through those early morning walks, and it never really let up throughout the day.

Regular Advil consumption knocked the pain back somewhat, but my hands and feet still felt excruciatingly bad. My job as a freelance marketing copywriter felt physically restrictive some days. I knew this isn’t what 38 was supposed to feel like. After a trip to the general practitioner and a referral to the rheumatologist, I received a rheumatoid arthritis diagnosis and prescriptions for regular prednisone and methotrexate.

I began taking my prescriptions immediately, and the pain subsided. But having looked through the side effects, I knew I wanted to explore another way. I looked at medical studies, poured through articles, and read books. I found online groups of people who were taking on this disease using natural means. After about bronchitis during my first winter on immunosuppressant drugs, I decided I would give diet, and some natural methods a try.

I cut out gluten and sugar and drastically limited my processed food intake. I found some CBD at my local dispensary. I began practicing Wim Hof breathwork in the mornings, and doing some yoga stretches in the evenings. Nearly immediately my energy levels returned. I lost somewhere around 40 pounds. I thought I was in remission from the medications, but my hands and feet began feeling even better with these lifestyle changes.

My rheumatologist allowed me to start weaning off my medications. Prednisone first, then methotrexate. I’m pain-free today and haven’t taken either of these drugs in almost a year and a half. The best part is, I’m 41 now, and I can still largely keep up with my 8-year-old son. We can play catch, go hiking, and ride our bikes together – all things a father and son should be able to do.

I’m helping run a Facebook group that is 20K members strong and dedicated to fighting RA naturally, called Healing Rheumatoid Arthritis Naturally Support Group. It’s a close-knit community of people who are bogged down in the same fight. More of my writing is available at theautoimmuneproject.com. I’m also on Instagram @theautoimmuneproject, and you can connect with me there.

BECKY

I wasn’t officially diagnosed with rheumatoid arthritis until a few years after I first started getting symptoms.

I tried everything in the meantime…physio, acupuncture, yoga, medications, and more.

I just couldn’t understand why I couldn’t find anything that would help the pain? After a little while, I saw a new doctor who looked through old scans of mine and immediately sent me to be seen by a different specialist who then ordered more scans and tests which all came back showing one thing…Rheumatoid!

Turns out it was very present, especially in my back and hips/pelvis. Since then, I have been on low dose chemo, DMARD’s, and a few other options which all didn’t seem to work, so am currently trying biologics in the form of Humira and have been for most of the year. 

My life with rheumatoid arthritis is a very unpredictable one. Regardless of the medication, I take or the diets I try, etc., I am never guaranteed remission yet. I have random flares which can last anywhere between 10 days to 10 weeks. 

When I’m good, I’m good! I can go to the gym, go fishing, enjoy the outdoors, and on the go lifestyle which is great! But when I’m bad, I am far from doing these sorts of things. I spend the majority of the time at home either on the couch or in bed. I’m not able to work properly as I am an early childhood teacher, so not being able to bend or move and being in pain does not mix well with young children!

Because my arthritis is so unpredictable and I never know what is around the corner, I’m trying to live in the now. Doing what I can to make the most of life while I’m able to. 

The specialist has warned me that the progression is rapid, and the future looks a little bleak. Because I don’t know when that will be, I try not to think about it! That to me is a future problem…one that I will cross when I must. 

Rheumatoid arthritis has been a big life change for me, in some ways a negative change, but in a lot of ways, it has been positive. It has encouraged me to be more grateful for the good days I have and to make the most of them while I can!  

ANDY

I’m Andy, 46, and live in Auckland, New Zealand. I was officially diagnosed with Psoriatic Arthritis at 43.

Looking back, the first symptoms would have begun to appear around seven years earlier. It initially started as the occasional thing that I didn’t link together – a swollen painful toe, ridges and pits in my fingernails, and toenails and pains in my wrists and knees that would come and go.

I’ve always been physically active, so I put a lot of these pains down to earlier BMX and skateboarding injuries.

Then one morning I had a flare in my foot that came on suddenly. I was fine when I started work at 7 am but by midday, I couldn’t put any weight on my right foot.

I went to the doctor who sent me to a rheumatologist, who finally diagnosed me.

Initially, the physical and mental adjustment was tough. Autoimmune diseases are life-changing and future plans can suddenly be thrown into disarray. I became apprehensive to start new challenges, plan ahead and even accept invitations – what would happen if I had another flare-up?

However, life does carry on. Through this, I’ve learned a lot about myself and how to live a much healthier lifestyle – both mentally and physically.

I consulted an amazing dietician (who also has arthritis) and started an autoimmune ‘elimination diet’. It’s tough at the start but the results have been amazing. Initially, as the name would suggest I had to eliminate a few foods from my diet and then gradually reintroduce them to see which ones would induce a flare-up. Foods that you’d assume would be healthy for you, could in fact be causing a negative response in your body. And everyone is a bit different.

With this new diet, I have a lot less fatigue (autoimmune symptom) and what was initially constant pain and regular massive flare-ups have become much more manageable, with flare-ups only really coming on when I’m under stress or try to reintroduce a food that doesn’t agree with me.

I’ve also engaged with several holistic therapies including kinesiology, acupuncture, and traditional Eastern Medicine (herbal tonics). I’ve found these “alternative” therapies incredibly beneficial.

After the diagnosis, I pretty much stopped heavy physical exercise but have returned to the gym and it’s been fantastic both physically and mentally.

Throughout this whole process, I have continued to run my engineering business in a hands-on position which keeps me motivated and engaged and I am a dad to three amazing, energetic kids.

While I’m comfortable with where I’m at, I know there will be more challenges along the way. I’ll continue to work with my squad of docs, specialists, and dieticians. And with the support from my partner, friends, and family, I know I will push through and continue to lead a full, rewarding life.

If I could go back and give a message to myself when first diagnosed it’d be, “Hang in there. It’s not all doom and gloom. You’ll learn how to manage this. Keep an open mind and stay positive.”

 

Want to be featured in the Keeping It Real with Arthritis stories series? Send a message to, risingabovera@gmail.com