All posts tagged: RA

RA Web Sites

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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 …

My RA 10 minute exercise plan

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  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 …

Me 2015

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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 …

Renoir and RA

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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, …

Managing RA and commitments

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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 …

RA and cancer support

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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 …

Rituxan- the final frontier

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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 …

Exploring and moving

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Do you really want to spend any time walking on a treadmill or  riding a stationary bike?  Indoors? Sure, it’s great if you live in Watertown, NY and you get socked in with snow. It’s also good if you live in a bad neighborhood.  But if you live in Albuquerque( ABQ to us), there is more to be had.  Walking with your camera in the great open spaces. I am a professional photographer. I have all the big expensive cameras with the impressive lens. I also have a seriously progressing Rheumatoid Arthritis. I have been lying low with pain and inflammation. Finally, I am ready to move again.  Baby steps.  Out walking trying to get my legs again, I take an old digital Canon. Fast. Satisfying. Easy. I would never have seen these Sand hill Cranes when walking on a treadmill. I love these guys. Makes my heart happy to see these 4 foot visitors from the North. One of the oldest surviving birds, they mate for life and care for their young for a year. …

The challenge of Feet

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My rheumatologist sent me to a podiatrist, a foot doctor.                 Charming man. Once a client of mine.        X-rays were ordered, the podiatrist way. Standing. Weight bearing. Three views each.  For the third view I climbed steps  and was x-rayed  at foot level.   A  much better test than the standard foot  x-rays. Results: persistent degenerative changes with in the feet bilaterally. I admit that this was expected. What happens next?  My doc said surgery is not the answer.  As my feet get worse he feels steroid injections would be helpful. Now it is important that I wear shoes that fit  well and offer good support.  I should also wear special inserts (Motion Control performance insoles by Prothotics). I got the inserts first.  They are so much better than anything you will find at Target or Walmart. They have support for feet in areas that are thinning in RA. He suggested our New Balance store or REI.  New Balance was closer. They fitted the inserts and fitted …