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!”
“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:
How RA is diagnosed
Maneuvering the medical world
Other Diseases related in some way to RA
From a fellow nurse (retired). I wish you well in your illness journey. I like your writing! I’ve chosen to follow you in this zero to hero challenge. Looking forward to learning more about you.
Mary, From one seronegative A/C patient to another. Stay strong and may we journey together. I was diagnosed with Antiphospholipid Syndrome in November (not seronegative) and then in March my Rheumatologist added Lupus/Sle (seronegative) to my diagnosis. I have 7 of the 11 criteria needed for the diagnosis but my labs are still coming back negative, he says its just a matter of time though. Especially since Lupus is on both sides of my family and I have APS. I was already on Plaquenil to as part of my treatment for APS and was still having insane amounts of joint pain and my butterfly rashes and sun-triggered rashes were getting more frequent so he started me on Imuran. I started it last week, and stepped up to my full dose this morning. I managed to stumble across your blog due to Day 11’s assignment to comment on people’s blogs that I had never commented on before, in the 101 challenge. I am so glad I found your blog on the blog roll! I love your writing style, and I look forward to following your story.
It is a pleasure to meet you. These auto immune diseases are a journey with their ups and downs, changing when you think you have a handle on it. I am amazed by the people I have met, sturdy in their hearts even with the uncertainty in their lives. The human spirit is an amazing treasure.
Glad you have a good doc. I love my rheumatologist. She makes a big difference in my life. Sounds like yours will find the right mix for you. Then you will feel better.
Mine suspected that I have cancer too. I do. Two kinds. My RA was a good training ground for what I needed as a cancer patient.
Keep in touch.
I have met some amazing folks so far as well. Their strength continues to amaze me. It is amazing me how strong we can be when we have no other choice! My doctors are pretty awesome. My rheumatologist is the newest member to my team, I’m just forming a relationship with him but he is on top of things! I am hopeful the addition of this new med will help turn things around. I am hopeful your journey as a cancer patient is a successful one and I will keep a watch on that journey. I have watched loved ones go through various journeys with different cancers.I know autoimmune conditions are not the same, but like you said, good training ground. I wish you much luck. I’ll stay in touch, you do the same. I want to know how you are doing from time to time!
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Mary I am so glad I found your blog in zerotohero. One of my dearest friends has RA and is having a bad time of it right now. I feel very helpless and very uninformed. I hope to understand her illness more by following you. Thank you so much for sharing your journey.
I’m thrilled to find your “blog” and to know how much you live life and how much you have to give to others. Love you so! Alice