All posts filed under: Resources

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/ PubMedHealth 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. …

Wrapping your head around RA

When I was diagnosed with RA, I was too sick to understand the long term implications. I was grateful at the time to put a label on the devastating attack on my body. I love books and have always looked to books for solutions as well as for pleasure. Soon after my diagnosis, I purchased the book, The First Year Rheumatoid Arthritis by M.E.A. McNeil. With RA there is a major shift in your life. What to do? How to cope? What to think? It is overwhelming. This book set me on the right course. It helped me organize.

Maneuvering the medical system

  Treat Me, Not My Age is written by geriatrician, Mark Lachs, MD*.   The book discusses Why you should be an informed patient  How to become  informed The pitfalls of being an aging patient in our current medical system How to take charge and  maneuver the medical system maze There are doctors who do nothing for  aging patients even though appropriate, aggressive treatment may improve the life and well-being in the elderly the same as someone younger. over treat aging patients, not understanding the patient’s health situation. talk down to an elderly patient and blow off patient’s concerns attributing them to aging problems instead of symptoms of disease. Over 98,000 Americans die each year due to medical errors. Many more are injured. The average primary doctor has about 2000 patients.  Dr. Lachs makes clear the perils we face as patients. He then offers  a guide to managing medical issues that we encounter as we age. He believes “…the most important primary care provider is you.”  It is your life. You are the one who needs to keep track of what …

what website has the best RA info

  Maneuvering the tangled jungle of internet information can be extremely frustrating. There is a lot of misleading information by reputable sites.  A lot of information is summarized and then vaguely  jumps to  faulty assumptions.  All this adds to our confusion.   Reputable resources may vaguely summarize information for patient information sheets. The American College of Rheumatology is a good  resource for general information about  RA.  However, patient information sheets are generalized and vague.  I wonder if the science writers think we are too dumb to get the real stuff.  A lot of our confusion about RA stems from getting peace meal information that is vague.  Rheumatologists actually do use the 2010 Rheumatoid Arthritis Classification Criteria to assist diagnosis.  Why don’t they tell us about it?  It sounds pretty black and white to me.  PubMed comments on the criteria show how the new criteria is the game changer tool to diagnose RA. The classification tree of the 2010 Rheumatoid Arthritis Classification Criteria is worth checking out. Johns Hopkins Arthritis Center is a respected source of Rheumatoid …

An excuse to color

Have you seen The Anatomy Coloring Book ? It is authored by Kapit and Elson and is in its 4th printing. It has just about anything you wanted to know about human anatomy. I bought one and a box of colored pencils. It has some good information about the joints, muscles and all that other stuff inside you. Benefits: you can learn just where the mischief is taking place in your body you can exercise your fingers and hands(use a pencil gripper, not the one at Walmart, the lovely ones on Amazon.) you can also check out the location of your spleen and a few of the other mysterious organs that you have wondered about. you can have fun and improve your brain cells all at the same time. It can be a long term project. Most importantly, you can indulge your creative soul and have fun with the childhood pastime of coloring.  

Symptom Management

Lene Andersen wrote a book in 2013. It is called Your Life with Rheumatoid Arthritis.     She is amazing. Her RA started when she was 4 years old. She is now in her 40’s. RA was treated differently back then. By the time she was 17, she was wheelchair bound after having both hips replaced.  She struggled with her RA and she still has very big obstacles.  Her life isn’t an easy one. However. She has a Master’s Degree in Social Work. Then she adapted to work from home. She works with Health Central. She helps others with RA. Now she is an author. Her book is full of practical information on dealing with RA. It helped me. The cover reads ” Tools for Managing Treatment, side effects and pain”.  Pain management tool box, fatigue, fuzzy brain, osteoporosis, medication side effects, managing infection risk, nausea. This is a practical book with practical solutions. A good read. “I call it ‘Having a Swish.’  It means doing your best not to wallow in the self-pity pool. Every now and then …