There will be a free Public Education Seminar offered next Thursday, April 29th and the guest speaker is a well-known rheumatologist in our area, Dr. Elizabeth Tindall.  I will be attending, even though I do not have rheumatoid arthritis (RA).  I know that they are different diseases, but I also know that both lupus and RA share some similar treatments and it will give me a chance to hear some of those updates.  Please note that the date for the R.S.V.P was April 23rd.  If you are interested in attending, contact Janet Lamb at 503-245-5695 Ext. 101, 1-888-845-5695 or  jlamb@arthritis.org as early as possible. 

“Advances and Treatment of Rheumatoid Arthritis” with Guest Speaker Elizabeth Tindall, M.D.

Rheumatologist,  Orenco Station Medical Group

 Thursday, April 29, 2010    Doubletree Hotel Portland – Lloyd Center Broadway Room

 1000 NE Multnomah Street Portland, OR 97232 (Complimentary Parking Available)

 6:30 PM – 7:00 PM    Registration & Dessert Buffet

 7:00 PM – 8:30 PM   Presentation, Questions and Answers

This seminar will provide you with valuable information on rheumatoid arthritis.  Common signs, symptoms and scientific basis of new treatments for arthritis. At the conclusion of the program an Arthritis Foundation Exercise Instructor will discuss self management tips and the importance of exercise. 

The mission of the Arthritis Foundation is to improve lives through leadership in the prevention, control and cure of arthritis and related diseases.

The Arthritis Foundation would like to thank their sponsor Centocor Ortho Biotech Inc. for their grant for this education program. 

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A Camp JAM (Juvenile Arthritis Matters) benefit concert is will held on May 1st in Portland.

This is a wonderful summer camp for children of all ages and it’s important for those of us who live with illness as adults to recognize how difficult it is for all these kids.  Help the Arthritis Foundation to continue this opportunity that so many kids (and their families) look forward to:

 An Evening of Music with Susannah Mars and Friends

 A concert to benefit the Arthritis Foundation’s Camp JAM (Juvenile Arthritis Matters!)

Please join us on Saturday, May 1, 2010 at Wilf’s Restaurant & Bar at Union Station 800 NW 6th Ave., Portland, OR 97209

 Show: 8:00 PM        Advanced Reserve Seats $35.00 donation      General Seating $20.00 donation

For more information or to reserve your seats 503-245-5695, 1- 888-845-5695 or jlamb@arthritis.org

Camp JAM (Juvenile Arthritis Matters)

August 13-15, 2010 ~ Canby, Oregon

Camp JAM is a free weekend camp for children of all ages with juvenile arthritis and their families.  Children with juvenile arthritis face the daily challenges of their disease where one day they feel good and then achy the next day. This can be an isolating experience for children at school when they have to sit out of physical activities because of their arthritis. 

Our camp allows kids and teens the unique opportunity to learn about arthritis and how to manage their disease and have fun in a supportive setting where arthritis is not a limiting factor. Kids and teens with arthritis will be able to interact with others who have arthritis and form friendships that will last a life time. At camp they will be given the gift of spending a weekend in a place where they can just be kids, not “the kid with arthritis”.

I’m sneaking in a greeting to all of you this Spring celebration of faith and renewal~ 

I want to share this precious card I received from my friend, Linda. of her sweet companion, Dagny.  If you are worried about this poor little pup being put through this photo, don’t be.  Dagny is pretty certain that she is human—to the point of spending little time on all fours and most of the time standing next to you at eye level.  She owns anyone she comes into contact with and that is apparently true for most Golden Retrievers.  Thank you for the smile, Linda!

The card, if you’re wondering, was created through Shutterfly.com ~ a great website and company that gives you so many options to personalize some fun projects.

We hope you are enjoying your day free or with minimal discomfort and surrounded by loved ones.  If you are spending some time alone, know that we are sending our love from here, as always.

Maria

Peace~

Keep it in your heart always.

This week is National Handwashing Week .

I fall somewhere between “Extra precautions are a good idea” and “What’s all the hysteria really about?! ” when it comes to exposing my already-accelerated immune system to all that’s out there these days.  This middle ground applies to many things in my life, however, and not just health management, respecting the personal welfare of those around me or how to deal with the falling sky.

I’m taking this hand washing week more figuratively, rather than in the intended common-sense approach.  Granted, as basic as it sounds and as silly as it may seem to have to celebrate a week of reminding us about something we’ve heard since we can remember, there are many people who don’t fully realize how important it is to do it.  So, here’s my shout out –reflect on the many things you touch during your day  and consider managing how much nasty stuff you pick up and spread to yourself  (and others.) 

This need to reflect on the picking up and spreading of unwanted ‘residue’ has me thinking about issues, challenges, inconveniences and misunderstandings that I know I’m harboring within my self and it is affecting my overall health.  First off, there is a pending doom lurking to strike in January, when all the yakking about New Year’s Resolutions begin.  There is the usual laughable budget to work with this year ~ the worst so far.  There is the holiday avoidance dance…sidestepping the real issue, problem or hurt that is politely kept silent, yet remains deadly to the relationships it infects for yet another year.  There is the reflection on the past year and reviewing of the “to do” or “wish” lists that were written last January.  Or, the revised business plans that suggest promise and opportunity…that are still getting the kinks worked out, due to a rougher road than originally anticipated.  Then, there is the realization, at least for me, that my oldest turns 18 years old in January, is finalizing her plans for college and is still five years old in my mind, no matter how much she proves to me otherwise. 

As I head into what December represents for me this year, I can’t help but just want to wash my hands of all of it.  I feel like I have dug myself into a hole so deep and full of foam squares that, with even the slightest movement I make to get out, sends me right back in with a few more projects added to my list of things to dread.  I can’t seem to quiet my mind in coming up with more ideas long enough to see some progress on the many others half-baked.  I see the promise and opportunity of where I want to be, but it’s the road and energy required of me in getting there that gets lost in an immobilizing fog.  

This year, it will be primarily a homemade gift-giving season and I’ m excited about it, despite all the time and energy it will be taking from me tackling my ugly to-do list.  However, just as this week’s message about hand washing accentuates “empowering individuals to educate and help protect”, I recognize that I am going to have to do a little of the empowering with myself in order to make this an emotionally and professionally healthier season, because that is really what I want most for Christmas.

I’m offering up a list of things that I am going to do to wash my hands of unwanted debris in order to accomplish as many of those goals I set for 2009 as I can, before 2010 arrives.  I will follow these guidelines in order to cleanse the potentially toxic or virally- threatening obstacles that seem to be in my way of making it to January 1^st, 2010 in a much better place than I am today.

This December, …

I will cleanse the need for perfection.

I will blow any unhelpful or demeaning internal comments about myself into a tissue and toss it away, followed by a cleansing “Gesundheit!”

I will recognize how many things, people and efforts I touch upon throughout my day and treat each one with more honor and respect (rather than fear or ambivalence.)

I will remember to make a strong dose of creative thinking or expression every day, preferably with chocolate.

I will keep on hand a smile, a sense of gratitude and a few laughs to share…just in case I need it.

 I will rest my “shoulds” and worries frequently, so I don’t wear myself down. 

And, most importantly, I will remind myself that, as the dramatist Tom Stoppard once wrote: 

“A healthy attitude is contagious, but don’t wait to catch it from others.  Be a carrier.”

Well, better late than never, but November has been National Pomegranate Month.  I meant to mention that earlier…

Over the past few months, I’ve been testing out different products that have added pomegranate, so that I could start taking advantage of this seemingly powerful source of antioxidants.

Pomegranates are seasonal fruit that reach their peak in availability beginning in the Fall and run through early March.  Both the seeds and the juice from these fruits are power sources rich in antioxidants and potassium (more on that in a minute).  Results from research suggest benefits in decreasing damage resulting  from such diseases as cancer, diabetes and heart disease.  Although more longitudinal (long term) research is still needed to fully endorse this fruit of  its health benefits, putting a little more antioxidants into our daily diet is generally a good idea and this fruit  is a good source for that.  Besides, they are one of the better tasting options and are now being added to a variety of products including juices, honeys, breads and so on, making adding them to your diet extremely easy to try out.

Earlier this year, I received a generous gift from POM to try out their product and I offered to mention them in a blog post about pomegranates.  I will say that their samples gave me a ‘boost’ in trying this fruit and I added their juice  to my homemade baking, teas, honey and jellies, salads and marinades I made this summer.  I wasn’t able to drink it straight, simply because the acidity is too much on my medication-laden tummy.  Adding it to everyday foods and beverages, though, worked really well.  Another reason to add a little at a time is because it is expensive to buy it through stores.  Nonetheless, I liked their product and invite you to visit and explore their website, learn about what others are saying about their product and try some of their tasty recipes.  There is a current contest going on right now and we tried a version of last year’s recipe winner for our Thanksgiving dinner this year.  It was wonderful and you can check out this recipe on their website.  They also have an online “community” that you can participate in to learn more from others in using this product - and pomegranates in general.

Now, the clincher about these fruits.  As I mentioned earlier, they are great for boosting the antioxidants in your diet, but they are also high in potassium.  Those of us with kidney involvement with our lupus and other illnesses need to watch how much potassium we take in.  When I introduced the pomegranates into my diet this summer, I was doing very well with my lupus symptoms.  However, in the last few months, I have noticed some changes in my health that is causing me to take a closer look at nutrition and exercise as a means of gaining back some personal control over my lupus. 

According to the National Kidney Foundation (NFA), this mineral can be found in nearly anything we eat and builds up within our systems.  Their webpage offers some guidelines on what are safe levels of potassium that you can determine through your dietician or medical provider.  On their website, they list pomegranates (one whole fruit and juice) as a high potassium source, among some others that we should manage also.  The NFA doesn’t necessarily recommend dropping these sources, as many of them (including pomegranates) are extremely beneficial to our daily health in moderated quantities.  Moderating is especially true for all high potassium foods if you are currently undergoing dialysis.  Their website also offers a way to reduce some of the potassium levels in vegetables through a process called “leaching”, which I found to be really helpful right now, with my recent health/kidney changes. 

I’m not a medical practitioner, so take my discussion here as how pomegranates are being used in my personal health management.  Overall, I really like pomegranates and have enjoyed experimenting with their flavor and health benefits.  As always, check with your medical team (dietician, doctor, pharmacist, naturopath) before introducing anything new into your treatment and/or daily diet.  Remain on the cautious side if your lupus is in a flare and remember that kidney trouble rarely shows any outward symptoms until things are severe. 

Above all, enjoy what food can offer and experience the abundance we have available in our local farmers markets or grocery stores.  We are fortunate to have so much variety available to us.  Introducing a little adventure into our lives, with the support of our medical team, is probably what we need when we are feeling our worst.  I have a daughter who loves to cook and she helps me when my energy levels are low.  Find someone you can have as a food adventure buddy to cover those days when cooking is just too much work.  The laughter and companionship during the preparation is good for helping us manage our emotions as well as our bodies.

Food is necessary for us~ why not make it count for both our health and our hearts?!  If you have introduced pomegranates into your diet, please feel free to let us know through recipes, health-related information or other websites that would be great resources for our community to check out.

I would like to put up the information offered through the Lupus Foundation of America (LFA) and a few others about men living with lupus that might be of interest. 

LFA links:

Men and Lupus

How Lupus Differs in Men

Men and Lupus Webchat

Mens Support Links (alternative to the LFA):

Could I Have Lupus? Forum

LupieBin Forum (UK)

Misc links:

Lupus and Gender 

Fertility and Lupus Treatments 

As I’m sure you are all aware of by now, today is also World Lupus Day.  Keep in mind that lupus affects many people – women, men, children of all ages (estimated at 1.5+ Americans and an estimated “more than five million people worldwide have a form…”(Source:  LFA Blog)

For those of you who have mothers still in your life, know of mothers or have had the gift of a woman who has acted in that role for you, consider the gift of learning more about her lupus.  See this learning not as encouraging her ‘excuses’ or ‘attention-getting’, but rather to better appreciate the challenges she is facing (ones you will never fully understand) and more about the opportunities that you have available to you to give back to her a little knowing that you can.

Sometimes, just letting her talk about what she is thinking or feeling without concern for your judgment can make her world so much brighter.

I’ve listed below a few action-oriented links to explore today to learn more about what you can do.  As always, check the links on our resources page  that offer more information for medical, service and personal support. 

World Lupus Day and May 10th World Lupus Events

eHow.com: How to Help Someone With Lupus

Don’t forget to continue to read the “Our Voices” series of guest posts going on here this month in recognition of May as Lupus Awareness Month.  Catch up on the ones you may have already missed, too!

Sending you all a smile, a hug and lots of hope for the days ahead~

My name is Kim Nault, I am 40 years old and have SLE and MCTD.  I am a Massachusetts transplant residing in northern California and a mother to a thriving nine year old daughter.  I spent several years undiagnosed and untreated.  A “chance” conversation with another Lupus patient in the summer of 2005 helped lead me to the diagnosis from a rheumatologist in October of 2005.  Like many, I was relieved when the diagnosis came, as it was a confirmation for years of bizarre and baffling health problems.  Upon my diagnosis, I remember telling my frightened mother, “Do not worry, that something good will come from all of this.”

After two years of feeling isolated with my buffet of health problems, medications and specialists I began to search the Internet and found a web site serving Lupus and MCTD patients, and I felt immediately at home in this community.  Within a short period of time I was befriended by the founder of that site and began doing a lot of volunteer work at that site.

I soon discovered that my experience of frustrating years living a life undiagnosed could help others.  As a direct result of my experiences I dedicated myself to spreading Lupus awareness and supporting other patients.  I volunteer at  LupusMCTD.com , where I serve as the administrative assistant to founder/owner Kathy A. Walters.  I am the editor of “Howling Knights“ newsletter, and now a radio blog host at Blogtalkradio .

Each of these endeavors expand the mission statement of Lupus MCTD Foundation of America, of spreading awareness, support and information to other patients and their loved ones.  Kathy is one of my heroes with a vast vision of Lupus altruism, and I feel blessed to have by “chance” found her.  Her presence in my life is a blessing and her site’s vision allows me to help others.

The greatest personal challenge that I have had with living with Lupus still remains to be the one of acceptance. 

I’m still learning that the journey of acceptance is a process and not an event ~ and subject to change on any given day!  I am not super woman; I cannot clean the entire house in one day anymore; that I cannot over tax myself on good days; I have to have rest periods throughout the day; I am not measured by my ability to accomplish “to-do” lists; I have to make accommodations for myself; cannot over schedule. I can be my worse critic and I have become more willing to request help doing something. One Lupus patient told me a while back that it is okay to say “no.”  What a liberating word!  Simple, but sometimes not easy.

Holidays hosted at my house include enlisting other’s for side dishes and deserts as well as the clean-up crew. I make large meals where leftovers can be recycled into freezer bags for those low energy days. I use one pharmacy for all my medications. All of my doctors have on record my pharmacy and other doctors.  I always have an updated paper in my pocketbook of my medical information, in the event of an emergency.  I always make a list of concerns or questions prior to visiting my doctors.  I have had to fire doctors who were not advocating for me.  I have learned not to freak out on having to take immunosuppressive agents, that their benefits far outweigh the risks.

Don’t over do it on a good day, for you may end up suffering a series of bad days or weeks.  Be willing to say, ” No. “  Nurture your relationships with family and friends.  Your unique presence in your loved ones lives is instrumental, and your contributions in their lives has an infinite ripple effect. Our bodies can be wounded, but our spirits not broken.  Together we are stronger, and having friendships with other patients is a source of love, hope and encouragement for many. These friendships are morsels that nourish our spirits and heal our hearts.  Connect with other patients, for they understand what you are going through!  Remember you are not alone, you are among the many fighters, learning endurance through acts of enduring.

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Kim is an SLE patient with MCTD and a patient advocate who networks with other other Lupus patient advocates with the commonality of raising public awareness and most importantly, to inspire, educate and empower other patients.  She is a published poet and essayist with over two decades of experience in community service work for various non-profit groups.  A small business owner since 1992.  Kim is also a HELLP Syndrome and Preeclampsia survivor.  Follow her and Lupus MCTD Foundation of America on Twitter under @LupusMCTD  and many other places listed on their website.

 “Paying it forward to other patients” ~ utilizing our experiences  to help others!

The celebrations are lasting throughout this weekend and I encourage you to simply Google the words to learn more about what is going on -not only here in the PNW, but around the world.  There are some amazing stories to read and be inspired by.  You may even see yourself in some of them~

One of my favorite local event blogs is Around the Sun and offers free events to enjoy this weekend as well.  If you aren’t able to attend the Women’s Celebration at Portland State University this weekend, there are many other local ways of celebrating yourselves and the women in your lives. 

No matter whether you leave your house or can’t this weekend, give yourself a hug and some credit for all the strength you have expressed in your lives.   Rejoice in all that you offer and know that those of us you share your days with are sincerely grateful to you.

Have a wonderful weekend, ladies!

Why do I have such a block when it comes to applying all the things I know to my own life?  

I had to go into my attic to put away some Christmas stuff I still had sitting around (yeah, it’s pretty bad) and I instantly knew the answer to that question.  It’s always nice when common sense gets through this thick skull of mine. 

Sometimes when it comes to our own lives, we are so deep into the situation that we don’t feel the necessary space to maneuver or the directions we need to take. A big reason why I can go into a client’s office and restructure the space to create an improved work flow is because I am coming into someone else’s life with no real investment other than getting the job done for them.  The principles of organizing and planning are always the same, but the emotional attachments we place on our own stuff create some pretty substantial barriers to getting us motivated.

No matter how much we want to change something, will power won’t get us going until we unload the heavy weight we’ve attached to the clutter and start seeing what we have to work with.  

So, I emptied my entire attic.  I brought out everything I had shoved in there and have it all over the house.  I knew that I was using my attic to keep things out of sight – memories, items I don’t get rid of because I might want it later or need it some day, stuff I don’t know what to do with or feel compelled to keep hold of so I don’t hurt anyone’s feelings.  I have half-finished paintings, books yet to read and my antique tea set I never use because I never entertain.

My attic was as cluttered as my brain feels these days and the only way I will be able to begin making any progress is to get it all out in the open.  Just as my house right now is a complete disaster and quite the obstacle course, I feel a sense of relief in seeing what I am dealing with upfront.  I am going through the bits and pieces of what I my life has become.  The piles are evolving from being my negative baggage into neatly labeled, packed and more positive ‘valuables’.  Both make up what and who I am – they just need put where they belong.

Taking stock of who I am and what I am carrying around in my head these days will be just as messy and equally as hazardous.  Yet, the relief I will feel as I see things put into their place will give me more room to explore and open up a clearer path to where I want to go.  To ensure that I’ll stay on track, I’m going to pay myself so that I can walk into this ‘job’ as I would a client’s: by not investing so much into the clutter and being more personally committed to getting the job done well.  Even though it will be more emotionally involved, my goal remains in following through. 

January is known for resolutions.  This month, I’m focusing on my heart.  I will be exercising it through lifting, stair climbing and skipping down memory lane.  I’ll also be paying more attention to rediscovering some of those passions that have kept hidden for too long.  Clearing out the attic, figuratively and literally, will keep the heart of my home free of unwanted clutter.  What a great way to head into this new year.