Living Well with Rheumatoid Arthritis: a Wellness Journey

| Rheumatoid Arthritis

My rheumatoid arthritis wellness journey began four years ago when I was diagnosed with a severe form of the disease.

It came on with frightening speed: I went to bed one day feeling just fine and woke up the next with such intense foot pain that I was barely able to walk. At first, I thought it was cute, but impractical shoes I loved wearing, so I invested in a few new pairs of comfortable flats. But when the pain kept moving to different parts of my body and I noticed that my toes were literally shifting, I made an appointment.

My doctor ordered many blood tests and based on his initial examination told me it could be as simple as a vitamin B deficiency or as complicated as rheumatoid arthritis. As I waited for my results, despite his insistence that I stay off the internet (he knew me pretty well),  I Googled rheumatoid arthritis. After reading all day and well into the evening about autoimmunity and looking at pictures of deformities caused by this disease I prayed for a vitamin B deficiency, but deep down I knew I had rheumatoid arthritis.

My blood work came back with all of the hallmark markers for rheumatoid arthritis: positive rheumatoid factor, super high anti-ccp antibodies, and an elevated sed rate.  The diagnosis was swift, for which I was grateful, and I was on my way to a rheumatology appointment within a week. As relieved as I was to have a diagnosis though, I was overwhelmed.

This diagnosis was terrifying, devastating, and life changing for our family.

Within a matter of weeks, I went from taking weekly Zumba classes and competing in daily Just Dance dance-offs with my then 5-year-old to barely being able to walk from my bed to the bathroom each morning. Sometimes I even needed help getting dressed.

My rheumatologist took one look at my hands and feet and said he wouldn’t even need to see my blood work to diagnose RA. He said the damage had already begun, so we needed to act aggressively. He elected to skip the usual starting point drug, methotrexate, and went straight to the biologics and Prednisone.

Finding the right medication took some time.

While I went through the agony of finding a biologic medicine I could tolerate (I tried Humira and Enbrel first, discovering that I was allergic to both), it took all the energy I had to make it through my workday. I had nothing left for my family at the end of the day, and my weekends were spent in bed recovering. Feeling like a neglectful mother and wife was exceedingly difficult and this, paired with the emotional side effects of Prednisone affected my emotional well-being to the extent that I needed anti depressant, anti anxiety medication to pull through.

Once I found an RA medication that I was not allergic to and also alleviated my symptoms (Actemra), and identified several flare inducing foods, my physical and emotional state improved to the extent that I would bet those around me had no idea that I was still struggling. But I was still allowing this diagnosis to define me.

 

rheumatoid arthritis wellness

Photo by David Cohen on Unsplash

I felt fragile, powerless and often hopeless. I went through my days on autopilot and put on a happy face.

I probably would have continued on that path if an opportunity for change had not presented itself.  After much discussion, my husband accepted a job in Indiana in 2014. This meant a new job for me and moving to a town where we did not know a soul. He moved in November with the plan that we would finish out the school year in New York and join him in July. I tried not to think about it much during those first few months because change is frightening.

But somehow I very reluctantly researched schools and filled out applications and was more than pleasantly surprised when I was hired after a phone interview at one of the top high schools in the state. It was what I needed to shift my mindset and ready myself for change. Instead of letting fear paralyze me I took the advice I give my students at the start of each new school year:

“If you aren’t happy with the outcome of last year, look at this new year as a fresh start and as a chance to reinvent yourself.” Aren’t we all students of life? It was time to reinvent myself.

I decided, new job, a new town- new life! Let the reinvention begin! I wish I could say it was a smooth transition, but when I got to Indiana my rheumatologist in New York refused to refill my prescription because I was no longer in his care. I had just seen him two weeks prior, so I had no idea this would happen. STRESS!

Stress should be avoided at all costs when managing inflammatory conditions.

This brought on a nasty flare that left me pain stricken and horribly depressed. I moved to a new state from a four bedroom house to a two bedroom apartment (we were trying to figure out where we wanted to live), tried to keep my then 7 year- old entertained and happy, attempted to be a decent wife, and started my new job (full-time English teacher) medication free.

I went without meds for two months while I waited for an appointment with a new doctor here, waited for the blood test and x-ray results, and by this time, approval from my new insurance company.

Thankfully, I finally found a new doctor, started back on my medication and had another added to the mix for muscle pain: Plaquenil, the Prednisone did its job, and I started feeling like myself again.

But the stress and time without meds had taken its toll. I needed an overhaul. I was bloated, exhausted, crabby, highly emotional, and just unwell overall. I decided I was ready to get serious about my nutrition and needed to start exercising again. I knew I couldn’t do it alone though so I recruited several friends from all over the country to join me in a private Facebook accountability group. The impact was phenomenal. I achieved the results I could never have alone and I realized in the process that I really enjoy leading accountability groups.

rheumatoid arthritis wellnessThis led me to the diet and exercise programs I currently follow, and an overall better quality of life. I feel great most of the time now.

My rheumatologist is shocked at my dramatic turnaround and how well I am doing now. She even cried happy tears once. Recently she said, “just keep doing whatever it is you’re doing. It is working and you look great.”

You can read about my autoimmune diet here.

From the start of my journey to now, I have made progress with my rheumatoid arthritis I am proud of, although I am still hoping to do more.

you can read more about me here

Here is my medication progress to date:

  •  60 mg of Prednisone to none (this took almost three years to do though as one must taper slowly)
  • 162mg of Actemra injected once per week to once every two weeks
  • 400 mg of Plaquenil to 200mg per day
  • 300mg of Wellbutrin to 150mg per day

This is a journey. I am a work in progress. I still struggle with my rheumatoid arthritis symptoms at times but I am making great strides and am taking my life back. I am the hero of my life story, so I’m going to make sure I’m the one writing it!

I’d love to help you do the same.

I hope to connect with you soon!

 

 

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2 Comments

  1. Daphnee Williams

    I have R/A in my left knee, I could barely walk. Am trying my best to deal with it. It’s great to know your making strides with your RA. It’s the worse pain I have ever experience. Thank you for taking the time out to share your journey. Do well,take care.

    • Asa

      Thank you for your kind words. I wish you well in making your own strides. It certainly is a difficult journey.

HI, I’M ASA!

I believe one should never underestimate the power of a good cup of coffee or the perfect glass of wine and that we should love ourselves at every age!

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