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The Reality of Living with RA

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Diagnosis of rheumatoid arthritis

Someone recently told me that, in living with RA, she mourned the loss of her former self – before she was diagnosed with rheumatoid arthritis (RA).  I thought about that for a bit and finally realized that probably most of us RA patients feel the same way.

Before RA entered my life, I spent each day raising children.  With 3 little boys and a baby girl, my days were busy and full of activity.  My husband stayed busy building his business. We lived an active social life, as well.  I played tennis weekly with friends. With a baseball field of sorts in our large backyard, we often played with our boys. My life was as physically active as any mother of 4.

The Diagnosis that Changed My Life

One day I awoke with a swollen big toe, flaming red with a rash and so very sore!  It appeared infected and I called the doctor for an appointment.  He ruled out several possibilities with lab work, finally settling on a possible psoriatic arthritis (PsA) diagnosis and referred me to a rheumatologist.  In previous years, I worked in the medical field but knew nothing about rheumatology or PsA.

My diagnosis came as a shock.  But since I’d never heard of it, I had no reason to fear it.  Six months later, I was told that I have seronegative rheumatoid arthritis, not PsA.  The rheumatologist told me the only treatments were nonsteroidal, anti-inflammatory pills (NSAID’s).  If the first one didn’t work, there were plenty more to try.

The Roller Coaster of Finding a Rheumatologist

Finding a good rheumatologist proved difficult! In a previous post, I wrote about the importance of finding a doctor who will work with you to obtain solutions. For me, a couple of years and several NSAID prescriptions passed. Nothing helped, and I changed doctors.

The second rheumatologist, who I randomly chose from the yellow pages, was a jerk!  On my first and only visit, he did not examine me.  Instead, I sat in his office while he read through my history.  He looked up and asked me what I expected him to do.  I responded that I hoped he would have a treatment to suggest that would alleviate some of my pain and swelling. 

He asked if I knew what was ahead for me and said that all the pills in the world won’t stop the progression of the disease. There wasn’t anything to take that I hadn’t tried, and I should prepare to spend the second half of my life in a wheelchair. Frustrated and beyond angry, I stood up and walked out.  At that point, reality hit me smack dab in the face!

Facing My Future

With tears streaming down my face, my first stop was at the library.  I read everything I could find on rheumatoid arthritis and began the search for yet another specialist.

The next one drained my swollen knee and prescribed Vioxx, the first NSAID that worked to relieve the pain and swelling in my aching joints.  Unfortunately, months later, the Food & Drug Administration removed Vioxx from the market, citing heart issues and moving me back to square one.  Like the first doctor, this rheumatologist said there was nothing more he could do for me..

The Struggle and Invisibility of Living with RA

Before RA, as a young wife and mother I stayed busy from morning to night.  But I learned as the disease progressed that performing all the tasks I once did, along with tennis and shopping and an active social life with my husband became impossible.

After Vioxx became unavailable, I lived without any RA treatment for several years.  Of course, the disease progressed.  But I made up my mind that regardless of the pain, swelling and increasing fatigue, I would continue to do everything necessary to raise my 4 – and later 6 – children the way I wanted and continue to live my life.  Although my husband was aware of my diagnosis, I never shared the seriousness of the disease.

In a sense, my mind rejected the reality of RA, and I “pretended” to live life as I did before RA.

The Invisible Disease

I played in a tennis four-some until the pain made it impossible for me to compete.  Walking became painful and simple grocery shopping took every ounce of persistence for me to complete.  My days consisted of chasing after a toddler, hauling older kids to baseball, football and basketball practice and games, and driving my daughter to dance classes twice a week.

By the time I climbed out of the car at the end of the day, my joints screamed at me, and all I wanted was a non-existent bed!  Once I cooked dinner, helped with homework and settled the children for the night, there wasn’t much left of me. The fatigue of RA was often worse than the pain.

After turning down many invitations by friends to go to the Mall or even out to lunch, the invitations ceased.  Others couldn’t understand the fatigue that followed me.  No one could see signs of an injury. I looked the same, because RA is often invisible. Reality set in, and I just couldn’t keep up with life as it once was.

Not really understanding the disease and lacking the internet to find information about it, I struggled to keep my life going and to be the wife my husband deserved. 

A Rheumatologist Gave Me Hope

Fortunately, in the mid-1990’s Dr. Grace Teal entered my life.  Dr. Teal, a Vanderbilt rheumatologist, prescribed several medications over a couple of years – Methotrexate, Plaquenil and Arava.  I failed all of them.  By the time she suggested a drug that had recently been approved by the FDA, my disease had progressed to the point that I was desperate.

Dr. Teal placed me on Enbrel, and it changed my life.  The drug also made me realize how much I had lost in the years without it.  I so longed to return to the me I was before RA!

Enbrel Made Living with RA Better

I was lucky! This new drug worked for me, had zero side effects and changed my life! For 24 years, Enbrel made it possible for me to live a normal life. Sure, I had pain. No medication is perfect. But for the most part, Enbrel gave me back my life. Most of all, it made me realize how much I lost during those years without help.

How the Internet Can Help Those Living with RA

If you can connect with others who live with rheumatoid arthritis, you will feel less isolated.  Social media sites are full of support groups and have helped me in recent years.  I belong to several Facebook groups that support people living with RA.  You might even find help from some online groups like Creaky Joints or Bezzy.

In-person support groups near you may provide a valuable resource.  You are not alone.  While you may feel isolated and rejected at times, know that help is out there.  Educate your loved ones and find a compromise that allows you to live happy and as comfortable as possible.

The Emotional Impact of RA

RA not only affects a person’s physical health.  It also attacks their emotional well-being.  Living with a chronic, autoimmune disease challenges every aspect of your life and causes feelings of anger, frustration and isolation.

Take care of your emotions as you manage your RA!  Don’t allow yourself to become isolated from friends and family.  Do your best to educate them about your disease.  Seek therapy from a licensed counselor experienced in treating patients with rheumatoid arthritis and force yourself to stay active and involved.

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