I live in New Mexico.

In 2013 I was diagnosed with a severe Rheumatoid Arthritis.

I live in New Mexico, home of green chile, Roswell, the Santa Fe Opera, and blue skies. I was born and raised up on New York’s border with Canada of Irish and French-Canadian parents. I inherited the spice of both, so I have spunk.

I lived many places before I settled in Albuquerque. It is a good place to be. I spend my time gardening, swimming, and writing.

• I am a retired RN whose work experience included critical care, both Surgical Intensive Coronary care and ICU, orthopedics, med/surg and OBS.
• I served in the Air Force at the Air Force Academy during the Viet Nam Conflict.
• I owned a photography business for 25 years specializing in the photography of children and in black and white photography.

M y Story

In November 2012 I started having severe joint pain in my feet, ankles, wrists, knuckles, elbows, and shoulders. Over the next two months, my left hand was swollen to more than double its size. My feet were swollen. My middle three toes on each foot were in pain. My left ankle was especially painful making walking difficult. My hands hurt and I had lost strength. I had a hard time opening jars and pill bottles. My elbows hurt. My shoulders were in such pain I could not find a comfortable position for sleep. I started having sleepless nights.

The pain and swelling originally had started in my feet. Probably months ago. But it was the last place a primary doctor would look for a diagnosis of RA. At the time, most RA doctors did not look at the feet. My primary had checked the pulses in my feet and declared my feet to be fine.

As my situation worsened and as many more joints became inflamed, my body became consumed with pain. My joints felt like they were filled with small, sharp chunks of glass. Movement was excruciating. It seemed like it took 10 minutes to hook my bra. A real challenge.

My bed reminded me of the rack. Turning over in bed was an excruciating exercise. Pulling up my covers was impossible. They felt ever so heavy. I hated going to bed. I had no sleep. Life became unbearable.

I was not afraid. I was totally consumed by my pain and the desperate need to find relief. I went to urgent care where I was given a prescription of Diclofenac (Voltarin) and told to see my primary. I believe the urgent care Doc thought I might have polymyalgia rheumatica, an autoimmune inflammatory polyarthritis. I called my primary who refused to see me for another two weeks. I could not last another two weeks. I needed help now.

When I could no longer stand it, my son drove me to the ER in the middle of the night.  In the ER, I was given an IV steroid medicine. Total relief.  I felt so much better. After a series of labs and x-rays, I was instructed to call a rheumatologist as soon as possible and I was given a name. The doctor sent me home on a two-week supply of prednisone plus pain medicine. I feel eternally grateful to this perceptive doctor.

Within two weeks I met my rheumatologist, Kim Reiter. She is an amazing woman. She listens. She is thorough. She knows her stuff. Plus, she is likeable. I trust her. After a series of tests to rule out other conditions, she sat me down and explained that I had rheumatoid arthritis.

I did not think

“OMG, I have this terrible disease!”

I thought,

“Finally, a name to a devastating problem and a solution to match it.”

In the beginning, I did not have a plan. My pain was improving. I was immediately put on methotrexate (MTX). I was dealing with the side effects that included diarrhea.  I was on prednisone. I was also started on meloxicam (Much safer than Voltarin, she said.)  I wish I could say my world became mellow. My world did not. I lived in various ranges of pain. I worked full time as a photographer. My camera became heavier each week.

Shortly after my RA diagnosis, I was diagnosed with stage three thyroid cancer. Bummer!  I am inclined to think that when you have RA there is much more that you will be dealing with. Shell shocked, I worked. Prepared for surgery.

My RA doc kept working on solutions for me. I did not have adjustment problems with the thyroid medication that I would need for the rest of my life. Some do.

I was diagnosed with breast cancer two weeks after I had the thyroid cancer surgery. What gives?  More surgery. And we are still in the same year. I was still working at the time. It would be in the next year where I would have radiation treatments for both cancers. Separate times and different styles, of course. Will I be permanently damaged?

For several years I was not allowed to try the newer biologics because of my cancer history. Finally, I was given infusions of Rituxan. It was no help. Next was Orencia which seemed to help for about ten months. Remicade, a TNF inhibitor, was finally tried. It made me sick. The last one I tried was Actemra. It helped, but then treatment was stopped because I needed to have my left hip replaced.

Six months into hip replacement recovery, because of a spot on an MRI I went back to surgery for a biopsy that was positive for a rare form of uterine cancer. It was listed as a possible complication from the tamoxifen I was on for breast cancer.  I had robotic surgery, followed by chemotherapy, and finished up with a series of radiation treatments. Very invasive.

After all that, my RA seemed to moderate somewhere near the end of the chemo. My flares decreased in intensity and frequency. Severe malaise disappeared. No swelling.

That lasted until about the time my hair grew back in. It took forever to grow in as my hair follicles were inflamed and painful due to the chemo. The first inklings of another flare made me feel deeply disappointed. I was not cured.  I had wished.

So back to regular flare-ups. Pain. Malaise. My feet were deteriorating. Fortunately, my orthopedic shoes and inserts make walking possible.  I have a certain kind of numbness in my feet that makes walking a little uncertain and driving impossible. My cane with the Hawaiian print and the little feet keeps me steady when I walk. My RA doc will strongly encourage me to start Actemra. I will agree because the biologic will slow down the destructive force of my RA and I should be able to manage longer.

I was on methotrexate, and I was starting Actemra again. Then my right breast sprung a leak. It was the breast that had cancer. Yes, it was weird. My breast cancer surgeon immediately identified the problem as necrotic breast tissue due to methotrexate and radiation for breast cancer. The wound required surgery and then post op I developed a severe infection. It took ten months and many trips to the wound clinic to heal.

This is my RA journey. Along the way, I learned what kind of disease I had to manage. Rheumatoid arthritis, also referred to as RA and as rheumatoid disease by some, is in the autoimmune family of diseases. Treatment is symptomatic and the symptomatic treatment that is offered will slow the progression of the disease.

My front page includes the following:

RA body

How RA is diagnosed

RA Solutions

Treatment

Maneuvering the medical world

My Journal

Other Diseases related in some way to RA