In response to The Daily Post’s writing prompt
Creepy is an understatement. This one slinks into the room with her sharp edges and razor eyes ready to do her damage. She stands there hands on her hips, all powerful. Her mission is to destroy as much as possible. “Where shall I start?” she considers. There are so many joints to choose. She will not listen to a single excuse and she doesn’t hesitate.
She carries out her angry, hurtful work. She does not smile and she stays as long as she likes. The evil, Flare Bitch. I am always glad when she leaves.
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gardening notes

Albuquerque will be 95 today. Yesterday it was 98. We missed the set of super hot temperatures for July. So we are just catching up. Blue skies. Nice. This is the Rio Grande. We have plenty of water in it this year. And now we have more.
Torrential downpour came later this afternoon. Reminds me of Miami. I am happy to see the rain. I would dance it it but the lightening forbids it. I have those big office wastebaskets to gather water where it comes down the hardest. This is great for my RA as I just need to scoop the water in a little bucket to water container plants. I feel like I am doing a good thing.
I have passed out of the RA Flare Fog. Don’t know if it is residual from the Medrol Pack or the Orencia starting to work. I am cheering for the Orencia. Feels so good to move. Hope it lasts for awhile.
Back out in the yard. This is Apricot Sunset. Climber. Strong and beautiful. Roses grow easily in New Mexico. Most of mine came from Rowland’s when it was the super nursery in Albuquerque. They sold exceptional plants. This one bounced back after being neglected. All roses need is some water and food.

This is called a rockrose. It is a 2-3 foot evergreen. I fell in love with it. The flowers are so very delicate and yet so vibrant at the same time. Looks oriental. Magical.
My yard has been landscaped by me and is a work in progress. When I can I spend time in the yard, I do and when I can’t, I don’t. But then I still have something to look forward to doing. Watching things grow has always been a great pleasure for me. When I am not well, I can look out my windows and see the beauty and I feel good.
Gardening is a good choice for me. It is a hobby that will take my mind off my concerns and make me focus on something in the here and now. The bonus is that it qualifies as exercise.
RA Web Sites
Like everyone else with a serious diagnosis, I need to know more than the few words my doctor tells me. And like everyone else, I search the internet. The internet is jammed full of information. However, sorting through it can be a challenge. Some of the sites give the same standard information. Some of it is dated information. Some of it includes assumptions. Still, it is possible to find helpful, reliable sources. Here are some I find helpful.
Johns Hopkins Arthritis Center
will give you all the scientific information that you will need. http://www.hopkinsarthritis.org/arthritis-info/rheumatoid-arthritis/
PubMed Health
The link: Rheumatoid Arthritis at the US National Library of Medicine, the world’s largest medical library. Always a valid and helpful resource. 
RA Warrior
A community support site that relates the experiences of those with RA, offers a great deal of helpful information, and current discussions on RA. It is a big site and well worth a visit. Kelly Young is the author. Visit the RA Warrior at http://rawarrior.com/
WebMD
This is an amazingly helpful site. It is full of information that is practical and useful. Visit at http://www.webmd.com/rheumatoid-arthritis/
National Institute of Arthritis and Musculoskeletal and skin diseases-the link: Rheumatoid arthritis
This is a helpful site under the U S Department of Health and Human Services. It is a resource for current news also. Visit at http://www.niams.nih.gov/health_info/rheumatic_disease/
Chat rooms and patient comments
When I want to know what other people are feeling, I visit chat rooms, patient reviews. Real life insights can be illuminating.
My RA 10 minute exercise plan
Repeat after me
Move!
Historically, I have always been a mover: swimming laps, walking a big dog, yoga classes, physically active job, cancer rehab, silver sneakers core, tai chi, gardening, etc. RA changed a lot of that.
I reached a point where I was so sick I could hardly move. I moved only because it hurt more when I didn’t move. I don’t think anyone understands how hard it can be just to get dressed. Running errands is exhausting. Going to the gym, just a dream for the moment.
I cannot walk far as I have bad ankle and foot damage. Going to the gym, for now, feels like planning a trip to the moon. However, I know that muscle strength, flexibility, aerobic conditioning are vital to RA stability.
And it needs to happen every day.
When I feel better, I swim laps. In June it was a quarter mile free style. Felt good. Presently, that seems overwhelming. Not the swimming but the dynamics around it.
I have devised a ten minute exercise set that I do every day! It is a combination of all I have learned. It is doable.
- Complete range of motion
- Stretching all that can stretch
- Using light weights
- Continually moving for the 10 minutes
May not seem like much but I can do this through my worst flares and I do it every day. When I feel better, I will swim. I will ride the stationary bike. Yoga will become a stronger part of my routine.
Right now I am doing something. I have my 10 minute routine. You, too, can do it.
Bibliography
Cooney JK, L. R. (2011). Benefits of Exercise in Rheumatoid Arthritis. Journal of Aging Research. (Excellent article)
Me 2015
Mary’s Arthritis started when I was newly diagnosed with RA and given the added bonus of two cancers in the same year. But it was hard to sustain as my situation worsened. Coping took all my time.
Learning to accept a shift in my reality took time. I had rarely been sick. I raised a family. As an RN I worked surgical cardiac critical care. I had been a nurse in the Air Force. I ran a photography business for 25 years and expected to work another 20. A reality shift took time. I now have this vision of the Hobbit living in the Shire.
the Hobbit Life is compatible with writing and researching.
I see that there is a lot of information out in the www. However, a lot of it is the same old thing and much is dated or faulty. RA is now considered 60% genetic. The rest unknown. The age group is now considered 35-65 with some younger and some older.
I see a void in the information on Rheumatoid Arthritis.
- The facts
- What really is the progression of RA
- Coping strategies
- Interfacing with the medical community
- More than drugs
- Taking out the guess work
- History
I would like to help fill this void.
Helpful Innovative Fun
Renoir and RA
Bal du Moulin de la Galette sold in 1990 at Sotheby’s for $79 million.
Renoir painted this scene of popular Parisian life in 1876. It was a typical Sunday afternoon at Moulin de la Galette in the district of Montmartre in Paris. An impressionistic image. Vivacious and joyful in nature. In fact, he painted not one but two of the same scene. One large and one small. Almost identical with minor differences in style. The larger of the two paintings hangs in Musee d’Orsay, which houses the largest collection of impressionist masterpieces in the world. The smaller of the two, the one sold for $79 million, is in a private collection.
Pierre-Auguste Renoir loved painting.
He started his career at the young age of 13 working in a porcelain factory. He frequently visited the Louvre to study the French masters. He spent his lifetime studying and admiring the paintings of the master painters.
With his factory earnings, he joined Alfred Sisley, Frederic Bazille and Claude Monet for classes at Charles Gleyre’s studio. Renoir along with Pissarro, Monet, Cezanne and Edward Degas were originators of the Impressionist Movement. In 1874, they held their first of many Impressionist exhibitions. It was a flop.
Fortunately for the art world they all were undeterred.
After many years of struggle, Renoir became a popular portrait painter. He was a passionate painter, always learning and evolving his art. His work was well received and he is considered one of the most influential painters of all time. Some say he has 4000 paintings to his credit. He was endlessly productive. He is one of the world’s beloved painters.
He was an optimist. He strove to find the positive qualities of his subjects. He was known to have said about his art “Yes, pretty! Life brings enough unpleasantness; why not approach it from the light side once in a while?”
It was about 1892 when Renoir was dealt a devastating blow.
He developed rheumatoid arthritis.
He was just over 50.
Today’s therapies were unknown. His resources were limited. Renoir searched out the therapies of his time. Then he adapted. He adjusted his lifestyle as his RA progressed. He moved to a warmer climate. He asked for help from his family. He continued to paint his masterpieces.
His passion was his art. It was the focus of his attention.
His passion for painting diverted his attention from his progressing crippling disease. He was fortunately dominated by an optimistic attitude and he adjusted to his increasing disability.
He kept on painting masterpieces as his hands became gnarled and he was no longer able to stand. Still he cherished the beauty in the world. He loved life.
Renoir is an amazing role model for those with rheumatoid arthritis.
He employed both problem and emotional focused strategies. He was able to stay positive and productive.
- Renoir accepted his role limitations. He asked for help from his family.
- He learned to prioritize his time and to pace his activities.
- He traveled less and painted at a decreased speed.
- Painting helped him find meaning. His passion kept him motivated.
He was, in his lifetime, what we can strive to be in ours.
Bibliography
Fernandez, G. (n.d.). The Impressionism seen through 50 Paintings. Retrieved from The Art Wolf: http://www.theartwolf.com/articles/50-impressionist-paintings.htm
Kang, C. (n.d.). Heilbrunn Timeline of Art History Auguste Renoir (1841-1919). Retrieved from The Metropolitan Museum of Art: http://www.metmuseum.org
Kowalski, E., & Chung, E. C. (2012). Impairment and Disability: Renoir’s adaptive coping stategies against rheumatoid arthritis. Hand, 7:357-363.
Pierre August Renoir. (2015). Retrieved from Bio.: Http://www.biography.com/people/pierre-auguste-renoir-20693609
Zyrianova, Y. (2012). Rheumatoid Arthritis: A Historical and Biopsychosocial Perspective.
My excuse
Rheumatoid Arthritis, i.e. Rheumatoid Disease, can really screw up your plans. My plan was to complete Word Press Blogging 101, organize my research methods, improve my writing skills and write daily.
Then the fatigue sets in. Low grade temperature, swelling feet, ankles, hands and wrists, neck. Pain saturated every joint in my body including my jaw. I became a slow-moving zombie, too sick to become depressed. Life came to a grinding halt. Too nauseated to eat, but not losing an ounce. Damn it! I could see myself in that wheelchair and I just didn’t want to go there.
My focus became surviving. I am on a schedule of tramadol and gabapentin. I am on prednisone. I could increase it but hate to. More sleeplessness. I am on methotrexate injections, Plaquenil, and meloxicam plus the sister medications taken for the side effects.
I understand better than I ever had before that I have few options left.
I am heading for the slippery slope. Scary thought. My rheumatologist has given me most of what she had. Next is Orencia and if that doesn’t work, we will try the TNF inhibitors. She said, at this point quality of life trumps increased cancer risk. I agree. So, we will try.
I think she wished she had started the biologics sooner. She had followed protocol and the advice of my oncologist. She had done the right thing. No one would have guessed my RD would have progressed at the rate it did. I am RF negative. I have joint damage in my feet and in my ankles (20% of those with RD have ankle involvement. Lucky me.) I have damaged joints in my hands and in my wrists, especially my right. My right shoulder is not good, my left hip is starting to speak up. My neck has deteriorated.
I realized my health depended on me as well as the meds I was on. I knew this already. I know it better now. I am feeling better. Pain in check. Everything still swollen, but that is me. Intellectually, I am better. Motivated to write. Feels good to do it.
That is my sorry excuse for not writing for the last few months. Hope my next excuse is a lot more fun.
Managing RA and commitments
I made a big accomplishment recently that makes me very happy. I completed my role as planning committee member for Cancer Support Now’s 4th Annual Long-Term Effects of Cancer Survivorship Conference. The event was successful. I could see it being valuable to attendees just like it was for me last year. I had loved it. Felt grateful for it. I had wanted to be involved in it.
Being involved had meant crossing town at 5 pm for planning meetings. Crossing town just at the time when the pain and the fatigue of RA increased for me was a big one. I made the decision to go. It was the first big commitment I had made since my odyssey of two cancers and a diagnosis of progressive RA began. I made the meetings. The conference was coming together.
The Monday of the event I woke to severe pain in all my joints. It was not good. The problem with RA is that it is totally unpredictable. Severe fatigue or severe pain are random occurrences. The pain kept getting worse with passing hours. Pain medicine hardly made it bearable. I thought how in the world will I make it through the week. Saturday’s Conference would be 9 hours.
Tuesday, I had the good fortune of seeing Abby, palliative care at Presbyterian. We had the discussion about treatment for RA being really just symptom relief and perhaps slowing the progression a little. The big symptom is pain and we agreed it had to be managed. I needed to put my pain medicine on a schedule. I did. She also put me on Gabapentin for neuropathy, an RA bonus. Both were scheduled together.
Wednesday, I made the 5 pm trip across town to help assemble registration packets. Friday, I made another trip across town to help set up. I was doing better.
Saturday I was fine. Spent the day at the conference. It was a successful day. I felt grateful to be able to contribute.
RA and cancer support

Click image to visit CSN website.
Cancer and RA seem to go hand in hand. Shortly after I was diagnosed with RA, I was diagnosed with two different cancers, thyroid cancer and then breast cancer. I had the big C hanging over me like a grey cloud, leading me down the cancer road with all the usual experiences. After surgeries and after radiation treatments, I started looking for help, for support.
I found it with the Cancer Support Now Third Annual Long Term Effects of Cancer Survivorship Conference. A long name worth repeating as I became totally impressed with this organization. Dava Gerard, MD, a respected physician in the cancer field, gave the talk ¨The Journey: From Surviving to Thriving¨. It was just what I needed. Arti Prasad, MD presented ¨Holistic Cancer Survivorship¨. Again excellent. There were breakout sessions. Free lunch from Jason’s Deli. The morning had started with a generous breakfast. I felt welcomed and very glad to be there.
Since then, I have joined the board of Cancer Support Now and am on the committee for this year’s conference. Both are big commitments as my RA is unpredictable and continues to worsen. I have been able to keep up. I contribute. My fellow members are generous, thoughtful people. My commitment made me dress and go out the door when I might have stayed in bed in pain. I am the richer for it.
This year’s conference, The Fourth Annual Long-Term Effects of Cancer Survivorship Conference is March 28 at the Central United Methodist Church, 201 University. 8:30-4:30. Dr. Michael N Linver will speak on ‘Life After Breast Cancer’. There will be a Panel on post-treatment rehabilitation. Break out groups. Breakfast. Lunch. Chair massage. Conference is sponsored by New Mexico Department of Health. It is totally free. Also Free parking. More about the conference on www.cancersupportnow.org; For registration call Patricia Torn at 505-307-3414. Please come. Last year it helped change my life. Maybe it is your turn this year.
Rituxan- the final frontier
Rituxan, the final frontier
February marked the second anniversary of my Rheumatoid Arthritis diagnosis. After two years of treatment, my average pain level was reduced from 10+ to an average range of 4 to 7 every single day. The constant presence of pain and a body riddled with inflammation continue to suck every drop of energy from my aging, aching body.
My treatment was complicated by the addition of thyroid cancer and soon after that with the addition of breast cancer. Both required surgery. Both required radiation treatment. Both required medication. Both interfered with my RA treatment.
- The TNF antagonists, like Embril, are contraindicated for those who have recently had cancer. I am not allowed to have them.
- The ongoing treatment for thyroid cancer is to keep my body slightly hypothyroid. It helps prevent the cancer from recurring but it also increases the effects of RA fatigue.
- The ongoing treatment for breast cancer is anastrosole. It eliminates all estrogen in the body. It also puts me at high risk for osteoporosis as does Rheumatoid Arthritis.
My treatment originally started with methotrexate which did take the edge off, but not enough. Plaquenil, an anti-malarial drug was added next. It became a triple therapy with the addition of sulfasalazine, an old drug designed for rheumatoid arthritis. I am also on meloxicam, one of the safest NSAID’s and low dose prednisone. I have Tramadol and Norco in my arsenal and well as a Medrol pill pack.
I could not tolerate the sulfasalazine, which left me nauseous, queasy, feeling generally rotten. I stopped taking it. Next I was started on Leflunomide, a backup drug for rheumatoid arthritis when other drugs are not working. Additionally, I started injecting my methotrexate. It is easy and safe to do. Still this was not enough.
The consistently elevated inflammation markers in my blood, the constant swelling in my joints, my level of pain and x-rays of my feet that reveal damage collectively paint a picture of RA still out of control. My rheumatologist, my endocrinologist, my oncologist and my internist all agree that Rituxan is next.
It is a drug used for rheumatoid arthritis when all the other drugs have failed. It is only approved by insurance companies when TNF inhibitors have been tried and failed. My doctor sought out and got a special exemption from my insurance company for me since the TNF inhibitors were contraindicated in my situation.
Rituxan is the only drug of its class approved for use with RA in the USA. The drug kills B cells which are produced in excess in RA. It is given in two infusions 15 days apart. Six weeks pass before it takes effect.
Wish me luck! Beyond Rituxan, Orencia might be possible. Otherwise, the magic of the medical world is done. The creeping progression of RA continues.







