Next Meeting:  February 1, 2012
Topic:  The Heart of the Matter - Cardiovasular Health and Lupus
 
 Our meetings are open to all lupus patients and we welcome family members or supportive friends.

  For more information email Nanette at nanettestewart@gmail.com

Summary of Meeting – October 5, 2011

Topic: Social Security and Disability Issues: 

This is really a tough one to summarize because it’s so complex.  Here are some tips:

1.      The law is complex.  You might consider hiring a disability lawyer

2.      There are many deadlines to be aware of.  If you begin to consider disability, applying sooner than later is better.

3.      Get your doctor to work with you, but keep your own records in an order that makes sense, highlighting important events and symptoms.

4.      Include with your application a declaration of your disabilities by someone who knows you well. (When I applied, my husband and employer were asked for statements.)

5.      Make copies of anything you submit.

6.      Most applications are turned down at first, but you can do an automatic appeal.

Bottom Line:  It’s important to keep working as long as you can, not only for financial reasons, but because so much of WHO we are is tied up with WHAT we do.  Your identity as a working person is important.  Identifying yourself as “disabled” comes with a host of issues.  Just remember to do periodic reality checks about your quality of life as a person working with a chronic illness.

Summary of Meeting – September 7, 2011

Discussion Topic – Crossover Diseases

Some of the things we learned through discussion:

Fibromyalgia is characterized by pain and fatigue and is diagnosed by trigger points.

Sjogrens is difficult to diagnose.  It’s not specific to lupus, but many lupus patients suffer from it.  It is characterized by dry eyes, mouth.  Caused by inflammation in the glands that produce moisture, such as tear ducts.

Lupus arthritis and Rheumatoid Arthritis are two different things.  Lupus arthritis mainly affects wrists, ankles, knees and shoulders.  It migrates between those joints and although may cause pain and swelling, it does not permanently damage the joint.

Bottom line:  All of these conditions contribute to the fatigue and pain that is a hallmark of Lupus. Management is key.  We put Pain Management on the topic list for future discussion.

Summary of Meeting – August 3, 2011

Discussion Topic – Open Forum Discussion

We had a new member so we took some time going around the circle introducing ourselves.  It was a great chance to get reacquainted and to hear some stories we might not have heard or appreciated before.  Some people who missed last month’s meeting about Clincial trials wanted to hear more about that, so we spent some time revisiting that topic and hearing more from those who have participated and benefited.  All of that didn’t leave much time for discussion, but there weren’t many pressing issues.  However, finally Lucia raised a very important question that sparked much discussion – “How do you know which doctor to see?”    How do you decide if you need to see the rheumatologist or your primary care physician?  Many of us have other specialists too and it becomes very confusing trying to figure out who is going to help with your current problem, whatever that might be.

Many like to see the rheumatologist first.  Others, rarely see the rheumatologist and depend on the primary care physician.  The point was made that it’s very important to have a good primary care physician because not everything that goes wrong with us is because of lupus.  It’s good to have a doctor who isn’t always looking through that lens.  Sometimes it only requires a simple fix, not another specialist.

Bottom line:  Ideally your primary care physician is an internist who communicates well and regularly with your rheumatologist.

Summary of Meeting – July 6, 2011

Discussion Topic – The Ins and Outs of Clinical Trials

We heard from three people in the group who have benefited from participating in clinical trials.

All of them agreed that the care you get when you’re in a trial makes it worth the effort.  You are closely followed by your doctor and a group of experts.  They had amazing stories about improvements in their conditions as a result of receiving the drug that was being tested.  All three were on a different drug and all three benefited.

  Here is a summary of their advice

1)      Participation takes courage.  It is a leap of faith.  It could help.  What have you got to lose?

2)      Carefully read all the material for the study and highlight your concerns

3)      Ask questions

4)      There are different trials to fit different needs.  Have to evaluate your time and work schedule  

Bottom Line:  For everything you need to know about clinical trials check out the LFA website  http://www.lupus.org/clinicaltrials/

 

 

 

Summary of Meeting – June 1, 2011 

Announcements:

1)  Lupus Foundation of No. Calif 17^th Annual Run/Walk  June 12 –The Butterfly Effect. 

We decided on dark purple T-shirts.  Even if they are not all the same shade, the effect of looking like a group will still be the same.  If you go to our team page http://www.active.com/donate/LFNC2011/NStewar30  You can see we’ve raised 1,615.00!!  Thank you to everyone who has donated.  If you haven’t registered you can do so the day of the WALK.  Any questions, email me at nanettestewart@gmail.com.  See you Sunday in your purple shirt!

2)Topics for future meetings – Next month, July we’ll have a discussion about Clinical Trials.  We’ll do a group activity with some reprints of articles I have, but come prepared to talk about your own experience.  Many of you have participated in trials.  With the advent of Benlysta  it opens the window to many new possibilities but research can only go forward if patients are willing to participate in trials.  This is a chance to find out what questions you should ask if you are considering a clinical trial.  I am in the process of posting the list of topics for the next 12 months, on the website.  www.alamedalupus.org

3) Snacks at our meetings – Jean Rogers coordinates this.  If you would like to sign up, call her at 510-278-3159

4) Tomorrow Saturday June 11 – Teleconference: Central Nervous System and Lupus – To register or to download the powerpoint presesentation, http://www.lupus.org/newsite/pages/learn-from-the-experts.htm

 Discussion Topic – The Importance of Omega 3’s and “good” fats in your diet (THANK YOU LORENE!)

1)      Omega 3’s and other fatty acids are essential for brain and cardiovascular health.

2)      They support skin health, ease dry eyes, and prevent blood “stickiness.”  Also help migraines in some women.

3)      Food sources – Cold water fatty fish like salmon, sardines and mackerel.  Also walnuts, flaxseed (ground) and green leafy vegetables.  Also sunflower seed butter, available at Trade Joes.  Yum!

4)      If you don’t like fish, you can take fish oil supplements.  Make sure that each pill has 1,000 mg of EPH and DHA.  I take Ultimate Omega.  I like it because I’m not burping up a tuna taste after!!  Check with your health food store.   

Bottom Line:  Your Brain is 75% fat.  Feed it with healthy fats!

Summary of Meeting – May 4, 2011 

Announcements:

1)May is Lupus Awareness Month – Did you know that 80% of the general public knows little or nothing about lupus.  Hard to believe for those of us who deal with it everyday!  You can start to increase awareness by talking to the peoples closest to you, family and friends.  Invite them to attend a mini conference or a support group meeting.  Check out the stories of real people with lupus on the Lupus Foundation’s new YouTube channel – http://www.youtube.com/user/LFNCvideo

Donate to your favorite Lupus organization. 

2)Topics for future meetings – This is still a work in progress.  I’m not happy with what we discussed at the meeting.  I need to add an Open Forum and a guest speaker.  I’ll email the final topic list .

4)  Lupus Foundation of No. Calif 17^th Annual Run/Walk  June 12 –The Butterfly Effect. 

We decided on dark purple T-shirts.  Even if they are not all the same shade, the effect of looking like a group will still be the same.  If you go to our team page http://www.active.com/donate/LFNC2011/NStewar30

You can see we’re already almost halfway to our goal of $1,000.  That’s only what Carleen and I have done so far.   Hopefully that will inspire those of you who were so enthusiastic at the last meetings.  It really IS easy to ask people who know you and love you to give any amount.  They’ll do it, gladly, I promise!  Asking is the hard part.  BUT first you also need to sign up for the team, so hop to it!  Just go to the team page (above) and click on register for this event.  Any problems, email me.

5)  The Hat Exchange was not such a good idea after all. 

 

Discussion Topic – Sun Sense – How to Manage Sun Sensitivity in Lupus

1)      Avoid the sun during the hours of 10AM to 4PM

2)      Use a sunscreen of SPF 30 or higher.  Make sure your sunscreen protects from both UVA and UVB rays and apply it 30 minutes before sun exposure.  Reapply as necessary.  Keep sunscreen in your bag or purse.  Use it daily year-round.  How much?  2 Tablespoons to cover your entire body!

3)      Use make-up and body lotions with sunscreens.

4)      No tanning salons.

5)      Don’t forget to protect your eyes, ear and lips.  A hat provides instant shade.

6)      Check out Sun Protective Clothing from Coolibar or Sun Precautions  www.coolibar.com     www.sunprecautions.com     You can also get sun protective clothing from REI and LLBean. 

7)      RIT also makes a sun guard treatment for clothing that you can put in the wash http://www.sundayafternoons.com/store/rit-sun-guard-laundry-treatments.html   

Bottom Line:  With a little planning you can still enjoy the great outdoors and the summer sunshine!

Summary of Meeting – April 6, 2011

 

Announcements: 1) Report on Spring Conference – postponed till May Meeting

2)  Accessible Yoga – Classes will be held at Alameda Hospital Starting on April 27^th, Wednesdays from 5-6pm.  $5 per class.  Instructor:  Amanda Sharpe

3) The April  topic for 15 Questions With… on the LFA website is Strategies for Restful Sleep.  The transcript is available at  www.lupus.org.  Click on Join the Online Community and you’ll find Ask the Experts.

4)  Lupus Foundation of No. Calif 17^th Annual Run/Walk  June 12 – Our Team this year will be called The Butterfly Effect.  We talked about fundraising and I am going to send a separate email with some tips about how to ask people for money!  In the meantime you can set up your fundraising page for the team, by going to this link    http://www.active.com/donate/LFNC2011/NStewar30    Click at the top of the page where it says create a team member fundraising page and follow the directions.

We decided the team would wear purple t shirts.  Bring a shade of purple to next meeting so we can decide what we like.  

Guest Speaker(s) Chiropractic Care for Lupus Patients

For me, this was a huge disappointment. WE had speakers from the Life Chiropractic College in the past who were much more informative. 

Here are a few point from the talk:

There are several causes of inflammation, but basically inflammation may cause immobility.  Need to restore motion in the joints and chiropractic is a way to do that.

They advocated taking Vitamin D, magnesium and Omega 3’s.  Loreen is going to talk in June about Omega 3’s.  In the meantime, the recommendation I got from a Nutritionist is that you need to take 1 gram (1,ooomg) of DHA and EPA daily.  Check the bottle to make sure these omega 3’s add up to that number.

We all know core body strength is essential for any simple movement.  Combining physical therapy and chiropractic can improve core strength.

Handout on the benefits of walking quickly.  An article from Time Magazine suggests that the pace at which you walk is a reflection of the health of many of your body organs. People who walk faster, tend to live longer, according to the article.

Bottom Line:  Movement is important to quality of life.  Those of us with health issues need to find various ways to increase our mobility.

 

Summary of Meeting – Mar 2, 2011

 

Open Forum:  Learning from Each Other

Ok, to be perfectly honest, I was not looking forward to this meeting.  The reason I started this group was to offer something different from this “open” format where one person usually dominates the conversation.  But, we set out ground rules at the beginning, everyone abided by them and we had a very informative, supportive meeting.  I’m actually looking forward to doing this again.

Here are some of the things we discussed in a nutshell:

Relationships – How much medical information should you share with people who love you? How do you figure out what you can talk about and WHO you can talk to?  Different people can handle different information.  How can they support you?  How do you communicate a specific way that they can show support?  How to educate the people who love you about lupus?

Workplace Issues – Do you have to tell your employer you have lupus? How much do you tell?  WHO do you tell?  Does it help or hurt?  Legal issues.

Lactose Intolerance – Is it a lupus side effect?  Perhaps a medication side effect?  Enzymetica is a digestive enzyme product that may help.  Some of us also take a pro-biotic.  I think the best one is Jarro-Dophilus.  You can buy it in health food stores.  As always ask your doctor before you add these to your medication regime.

Joint Care – Does heat or cold help you for joint pain?  Some like it hot and some like it cold.  Heat seemed to be best for most of us.  Irene has a tens machine that she swears by and has offered to demonstrate at one of our meetings.

Vasculitis – Treatments that may be effective include a green light bulb.  You place your hands under the light.  Dr. Browners peppermint (castile) soap available at Whole Foods or Trader Joes.  It doesn’t dry skin and is antibacterial.   Also, check out the gloves at www.mousemitt.com

Unidentified Abdominal Pain – again try probiotics.  These are good bacteria that your digestive system needs.  You just have to be careful if you are taking ANTIbiotics.  You must take them at least 3 hours apart or they cancel each other out.

Bottom Line: The whole is greater than the sum of it’s parts.  Together we are a fount of knowledge! 

 

Summary of Meeting – Feb 2, 2011

Guest Speaker:  Joel Drucker – Love and Laughter on the Fault Line 

Joel presented us with many “pearls” during the course of his talk.  These are my thoughts:

 First, I love the title.  His analogy that living with someone with lupus is like living on a fault line, spoke loudly to me.  It’s a given that when you live on a fault line bad things will happen.   The point is, knowing this, what do you do?  Can you prepare?  How do you deal with it when the inevitable happens?  Joel and Joan’s way was to find the humor in the situation. 

Also, I was able to have the most meaningful conversation I’ve ever had with my husband about my illness as a result of things that Joel shared.  Specifically, it was two things that Joan said to him - “You can’t fix me.”  “Don’t treat me like an invalid.” 

Bottom line:  Individuals responded to Joel on many different levels, depending on personal situations.  I hope we’ll have time to share those responses at the next meeting.

Summary of Meeting – November 3, 2010

 

Announcements: 1) Report on Lupus Walk in SF – Our group was well represented in the walk by several members and their families and friends.  Even though it was wet and windy, it was beautiful in Golden Gate Park and the reward was finding a cozy, DRY, place after for breakfast.  Walkers raised over $155,000 to support the Lupus Foundation of America and the services they provide.

2) New Registry for Clinical Trials:  If you’d like to see if you can qualify for a clinical trial for new medications sign up on the LFA’s new website www.lupus.org/clinicaltrials.;registry.htm      You will be contacted if you are a match for any trials in your area. 

 

3) Sisters Helping Sisters:  Jessie brought to our attention a study being done by the Feinstein Institute for Medical Research that is looking at women with lupus and their unaffected sister.  They hope to enroll at least 400 people.  Here’s the link to the website http://www.feinsteininstitute.org  Click on clinical trials and scroll down to lupus.  When you get the to lupus page, it’s the third one down on the left.  Not easy to, there’s no direct link, but worth it.  You’ll find information you need, who to call, etc. if you’re interested.

 

4) The November topic for 15 Questions With… on the LFA website was Dealing With Stress.  Here’s a link to the transcript http://www.lupus.org/webmodules/webarticlesnet/templates/new_communitywebchats.aspx?articleid=3544&zoneid=93

 

Discussion Topic:  Surviving the Holidays:  Here are some of the strategies that the group had to offer

• Be kind to yourself
• Delegate
• When family gets to be too much, take a break, go for a walk, read a book.
• Make lists
• Shop with people who understand your limitations.
  
• Take naps
• Buy gift cards
  
• Change your expectations – stop expecting holidays to be the way you remember.
• Remember that Saying NO is really saying YES to yourself

 

Bottom line:  Good self-care will lead to happier holidays.

Summary of Meeting – October 6, 2010

 

Announcements: 1) Walk for Lupus now on Sunday, October 24.  You can sign up with a team or walk as an individual, but get out and walk for Exercise, Comraderie, and to support a good cause.      click here for details.     Two members of our group have teams.  Tracy Wilson’s team is the Overcomers.  Lindsay Carr’s team is It’ll All Be O-koi.  You can search for the team by name if you want to join or make a donation.

 

2) Brown Bag Series #3 – Lupus Foundation of No Calif, San Jose. Thursday, Oct. 21  12:00 – 1:30 – “Dealing with Lifestyle Changes due to Health, Career & Family Issues.  Call Maggie to sign up at 408-954-8600 or send an email to executive@lfnc.org

 

Discussion Topic:  Diet and Nutrition : We generated questions and had small group discussions.  Those questions included:  Would a Vegan diet be beneficial?  How much water should you drink in a day?  Does the temperature of drinking water matter?  Is pineapple good for the immune system?  Do you crave sugar shortly after finishing a meal?  How much Vitamin D should you take?  What foods should Lupus patients avoid?  What foods, vitamins, supplements make you feel better?  Worse?   Is Fish Oil good to take if you have Lupus?  What are the “right” foods to eat?  Does drinking a lot of water compensate for bad eating?  What about gluten free diets? 

Click here for more information about the Mediterranean Diet.

Here is a link for a Webchat about Healthy Eating and Diet, moderated by a Dietician, taken from the Archives on the LFA website. http://www.lupus.org/webmodules/webarticlesnet/templates/new_communitywebchats.aspx?articleid=2133&zoneid=93

Bottom Line:  CHECK WITH YOUR DOCTOR before making any major dietary changes or adding vitamins or supplements to your diet.

 

Next meeting:  November 3, 2010

 

Topic:  Surviving the Holidays – coping skills for easing the stress of the season

 

Summary of Meeting – September 1, 2010

 

Announcements: 1) Walk for Lupus now on Sunday, October 24.  You can sign up with a team or walk as an individual, but get out and walk for Exercise, Comraderie, and to support a good cause.    click here for details.

 

3) Sharon has offered to make a banner for our group.  She showed us the fabric and we discussed the size and purpose.  We will add personal things to it as we go along.

 

4)      Supporting Lupus Organizations.  There are three organizations that I think are worthy of your support.  They all do different things and they are each distinct entities.  I support each of them on some level.  They are the Lupus Foundation of Northern California (LFNC) – www.lfnc.org ;  The Lupus Foundation of America (LFA) – www.lupus.org ;  and The Lupus Research Institute (LRI) – www.lupusresearchinstitute.org  Check out their websites to learn more.  The Lupus Foundation of America sponsors our group.

 

Discussion Topic:  Creating Balance in Your Life:  We rated ourselves on different self-care activities such as eating, sleeping, exercise, taking meds, connecting with others, etc.    We talked with partners and then shared in the whole group about how we are doing.  Bottom line:  Most of us are so busy taking care of others (Family, friends) that we don’t take very good care of ourselves.   The next step is to consider one area of self care that we could improve and work on it.

 

Next meeting:  October 6, 2010

 

Topic:  Nutrition – Is there a Lupus Diet?

 

 

Summary of Meeting – August 4, 2010

 

Announcements: 1) Visit www.lupus.org and checkout 15 Questions with an Expert.  This month’s topic is Eyes and Dental Issues in Lupus.  The questions and answers for this month’s topic will be posted on August 23^rd.  You will also find information about upcoming topics and how to submit your questions.

 

2) If you would like to join a team for the Walk for Lupus Now in Golden Gate Park on October 24th, visit Lindsay’s webpage

http://donate.lupus.org/site/TR/Walk/General?px=1920762&pg=personal&fr_id=1370  Click on WALK at the top of the page and you will be able to join Lindsay’s team, start your own team, or walk as an individual.  If you can’t walk on that date, you may choose to donate and help Lindsay reach her goal.

 

3) Sharon has offered to make a banner for our group.  We decided the group’s name would remain Alameda Lupus Group, but we want to add a motto.  Send me any ideas you may have.  So far, I like Barry’s: “Look back but don’t stare.”  Good advice for those of us dealing with the changes Lupus brought to our lives.

 

4) YOGA – Annabelle is still interested in doing a private class for us in her home studio.  We just need to find a date and time that will work for her and at least 4 of us.

 

5)  Stairway Walk in San Francisco – When Sue recovers from her current ankle problem we will map out a walk and then discuss a date at the next meeting.

 

Discussion Topic:  Creativity:  This proved to be a difficult topic, mainly because we didn’t have a working definition of creativity. I did some research (wikipedia) and found to my surprise that what constitutes CREATIVITY has been debated through the ages! Our discussion reflected that dilemma. Is it art, craft, poetry, innovation, all or none of the above? I was wondering why we chose the topic and then looking back at Adrienne’s talk on stress reduction realized that she mentioned engaging in creative activities was a way to reduce stress in our lives.  So, that was my intent.  It’s my opinion that creativity involves imagination, inspiration and a sense of accomplishment. All of these things propel us, at least while we’re engaged in a creative endeavor, outside of ourselves in a positive way.  That means we forget about having lupus for a while and that’s definitely a plus!

Bottom Line:  Whether your idea of being creative is knitting, crocheting, sewing, scrapbooking, karaoke, engaging in conversations with strangers, or exercising with Wii, DO IT WITH ABANDON!

 

Summary of Meeting – July 7, 2010

Discussion Topic:  Exercise and Lupus:  One of my favorite quotes is “If exercise were a pill EVERYONE would take it EVERYDAY.”  It improves your ability to function, controls pain, makes you stronger, smarter and less depressed, has no side effects and doesn’t cost too much. So, why is it so hard to start and stick to an exercise program?  Motivation is key.  Some people are motivated by tangible results:  the good feeling they get, more adrenaline, increased strength they feel.   Others like exercise that has a social aspect.  Some want to exercise with a purpose, such as walking to the store.  How do you find the right place and the right people?  How do you make a lifelong commitment to being active?

Here are a few guidelines:

·        Start small

·        Try different things

·        Keep a journal

·        Get in a routine – exercise the same time everyday

·        Be willing to progress slowly

·        Variety is the spice of exercise

·        Your body is different than before- learn to adapt to the New You – you can still exercise, it’s just different.

 

Some of the things our group members have tried or are currently doing for exercise include: hula class; housework; salsa dancing; belly dancing; pedometer walking; Nordic track; spinning; Curves 30 minute circuit; walking Great Dane puppies; water aerobics; walking while listening to audio books.

Summary of Meeting – June 2, 2010

 

Announcements: 1) Dee Dee’s Dream – We ended up with 11 team members!  It was hot, but we had a great time and we all finished 3.1 miles.  There will be pictures on the website soon, I hope. Our team was awarded second place in fundraising.  We raised over $4,000.00.  Thank you to all who contributed.

 

2) If you missed out on this Walk but would like to join a team for the Walk for Lupus Now in Golden Gate Park in October, visit Lindsay’s webpage.

http://donate.lupus.org/site/TR/Walk/General?px=1920762&pg=personal&fr_id=1370

 

3) Calendar and Discussion Topics – This is a work in progress and still open for ideas, but we did come up with a calendar.    I’m still looking for guest speakers so if you know anyone who might contribute his/her time and expertise, please bring the contact information to the next meeting.

 

Discussion Topic:  Relationships Part 2

We talked a bit about who you should tell that you have lupus and when – in personal and business relationships.  How do you know who to trust in the workplace? 

One of the best resources I have found is the transcript from a webchat about  Lupus and Relationships on the LFA website.  It was moderated by Dr. Robert Phillips who wrote Coping with Lupus.  He covered most of the questions that we asked in the last two meetings.  Here is the link: http://www.lupus.org/webmodules/webarticlesnet/templates/new_communitywebchats.aspx?articleid=1288&zoneid=93

Summary of Meeting – May 2, 2010

 

Announcements: 1) Dee Dee’s Dream – Our team, named for Deanna Carnes who was the leader of the San Leandro Lupus Support group, so far has only TWO team members.  If you can’t participate in the Lupus Foundation’s 5K on June 6^th, you might think about making a donation to the team - active.com/donate/lfnc2010   You can search by team name (Dee Dee’s Dream) or by individual (Nanette Stewart).

 

2) May is Lupus Awareness Month.  Some ideas for promoting awareness: A)Sign up and Walk with our Team to raise money for the Lupus Foundation of No. Calif.  B) Join a team for the Walk for Lupus Now in October in Golden Gate Park.  C) Donate or ask your friends to donate to these walks or give to the LFNC (www.lfnc.org) or the LFA (www.lupus.org) to support educational programs. D) Donate to the Lupus Research Institute www.lupusresearchinstitute.org to support research.

E) Wear a purple wristband

 

3) Calendar Session – May 22^nd 2-3pm.  Meet at Julie’s Tea Garden,1223 Park St. Alameda, to help decide on discussion topics for the remainder of the year.  Hosted by Nanette

 

4) Wednesdays and Thursdays are volunteer days at the Lupus Foundation of No. Calif. office in San Jose.  If you interested in volunteering, contact Annie, at 408-954-8600 

 

Discussion Topic:  Relationships

We had a very intense discussion around this issue. Here are some of the questions and comments.

Regarding your lupus – is it your responsibility to make the family feel comfortable with the situation?  People we love are frightened by the disease and sometimes we’re resentful about that.

“People just need to let me be and understand that I’m sick.”

“Don’t ask me how I’m feeling if you don’t really want to know.”

Dating a healthy person can be difficult.  What do you do when he/she “needs space?”

Communication is Key.

Knowing who you are, figuring out who you are as a person living with lupus, is important so that you can clearly communicate your needs in a relationship.

Bottom Line:  There are no easy answers.   There was more to discuss.  I think maybe we should extend the conversation to next month as well.  Perhaps some members who weren’t there would like to weigh in on the topic.   Comments?

Next Meeting:  June 2, 2010

Topic:  More about Relationships

 

 

 

Summary of Meeting – April 7, 2010

Announcements: 1) Dr. Neuwelt will be the speaker for the LFNC Spring Conference this Saturday, April 17^th at Kaiser Medical Center in Santa Clara.  Call 408-954-8600 to sign up.  For more details and for information about other upcoming events see our website 

If you are interested in car pooling to the conference contact Nanette at nanettestewart@gmail.com

2) The Lupus Run/Walk benefiting the Lupus Foundation of Northern Calif. will be held June 6^th.  I would like to organize a team from our group, but we need to get started.  If you are interested please contact Nanette.

Discussion:There were new faces as well as some familiar ones we hadn’t seen in a while. We started the meeting by telling something about ourselves and why we were attending.  That led to a lively discussion about many aspects of lupus in our lives and some spontaneous testimony about what the Group has meant to us. The discussion was so engaging that we had little time left for the topic of What Support looks like?  But, I think it looks exactly like what we did!

Bottom Line:  Send your ideas for future meeting topics to nanettestewart@gmail.com  Thanks to those of you who have already done so.

Summary of Meeting – Sept  2, 2009

Discussion:  Exercise and Lupus

Exercise can increase muscle strength, improve flexibility and lessen fatigue as your build up cardio endurance.  But exercise also provides mental stimulation and is an important component in achieving that “mind-body” balance.   Getting started is the hard part.   How do you get yourself motivated to begin an exercise program and then maintain it?  One way is to find an activity that you enjoy.  Some activities that some of our members enjoy are:  swimming, tai chi, housework, aqua-aerobics, walking and yoga.

Bottom line:  The best exercise for you is the one you’ll do!

 

Summary of Meeting – July 1, 2009

 

Announcements: 1) The consensus among those who expressed interest in a Yoga class designed especially for our needs was that a 4-week session (once a week) is the preferred schedule.  I’m contacting Annabelle and we’ll try to work something out.  I’m going to suggest we start in September so that vacations don’t interfere.  2) Tina and I participated in the Lupus Walk/Run on June 7^th.  The proceeds benefited the Lupus Foundation of Northern California and local programs that they support.  For more info and pictures of the Run, www.lfnc.org

3) If you are interested in donating to support research, I highly recommend the Lupus Research Institute (LRI).  They fund only innovative programs and give scientists with novel ideas a chance to get started and then continue funding with the NIH. For more information

4) Summer Picnic – You will get an email invitation with details.   Barbara Pereria, a new member has offered to organize and host that event and she will be sending out the information.

 

Discussion:  Boosting Brain Power

Research shows that you actually can grow new dendrites (brain cell branches that send messages) and create new pathways by challenging your brain with simple changes in your routine like driving a new route to work, using your non-dominant hand to brush your teeth or shave or comb your hair, and rearranging the furniture or pictures in a room.  Traveling to new places or doing two things at once like listening to music while you write or draw also give your brain a workout.

You don’t have to sit in front of a computer to give your brain a workout, but if you are so inclined some good websites for brain fitness games are:

http://www.thirdage.com/games

http://games.aarp.org/

http://www.mazes.org.uk/

For more information about the benefits of exercising your brain, google “neurobics.”

Next Meeting:  August 5

Topic:  Open Forum Discussion.  This is your chance to discuss a burning issue about lupus that we haven’t covered or needs to be revisited.

 

 

 

Summary of Meeting – June 3, 2009

 

Announcements:  Lupus Run/Walk, Sunday June 7^th, Saratoga.  Sponsored by the Lupus Foundation of No. California.  Tina and I will be leaving my house at 7:30 AM.    If you are interested in going at the last minute, you can register on the day of the Walk at 8am.  Click here for more information.  If you can’t attend but would like to make an online donation, here is a link to my donation page http://www.active.com/donate/lfnc09/NStewar17

 

Discussion:  Lupus and Yoga

Guest Speaker:  Annabelle Teleki, RYT

Annabelle gave us an introduction to Yoga practice and explained how we might incorporate it into our daily routine to help reduce stress and strength the immune system.  At the end she lead us through a 10 minute breathing exercise and meditation. 

 

Some Benefits of Yoga:

1.       Reduces Stress and Tension

2.       Calming, yet energizing ( I think we all experienced this in just a simple 10 minute exercise!)

3.       Provides increased focus and increased mental clarity

4.       Centering, grounding and strengthening

5.       Creates balance and harmony

6.       Makes people smile more!

 

As I said last month it is all about BALANCE.  Yoga is another tool to help us move towards balancing all the craziness in our lives.

Annabelle offered to do a yoga class at her home in Alameda tailored to the needs of people in our group.  If you are interested, please respond to my email nanettestewart@gmail.com and let me know.  We’ll try to come up with a time. 

 

 

Next Meeting:  July 1

Topic:  Boosting Brain Power

 

 

 

 Summary of Meeting May 6, 2009

Summary of Meeting – April 1, 2009

Discussion:  What are things you’d like your family and loved ones to understand about how having Lupus affects you?

Guest Speaker:  Sharon Haase

Some of the ways our families respond to us

1)        Non-communication – they don’t even acknowledge the disease or talk about it at all

2)        Over solicitous – always worried about us.

3)        “There’s nothing wrong with you!”

4)        They worry if we’ll be ok. 

5)        They overreact to symptoms, especially new symptoms.

6)        They feel helpless

What we want:

1)      We want family members to step up and make decisions

2)      We want to be able to have open discussion, conversations about how our illness impacts the family.

3)      We want to be treated like a normal person, not a patient.

4)      We sometimes long for the way we used to be.

 

Sharon facilitated the discussion.  There were two major responses from family – denial or anxiety and a feeling of helplessness.  One of the conclusions we came to was that family members need a safe place to talk about their fears for us, separate from us.  It doesn’t have to be in a therapy setting.  It could be with trusted friends or other family members who understand.

 

Sharon offered to come back and talk to family members but I think we all decided it would be better to contact her personally on a case by case basis.  Her contact information is Sharon Haase, MFT 510-420-1258, sharonh289@hotmail.com

 

Next Meeting:  May 6, 2009

Topic:  Exercise and Lupus 

 

 

Summary of Meeting – March 4, 2009

 

Discussion:  Medical Resource Binder:  Why do you need it?  What goes in it?  How to use it.

            A medical resource binder is an invaluable tool for taking charge of your health and becoming a proactive member of your healthcare team.  I take mine to every doctor appointment.  If you change doctors having this binders facilitates that transition.    What you put in it depends on how you are going to use it. 

Here are some things you might want to consider

1)      a calendar page for each month; you can write in appointments before you leave the office and you’ll have a record of docotor’s appointments that comes in handy for insurance or disability forms.

2)      doctor’s notes from your appointments

3)      blank paper to write down questions you have for the doctor

4)      copies of lab reports

5)      insurance information

6)      beautiful pictures/artwork

7)      articles of interest to you

8)    list of useful websites

            .

Next Meeting:  April 1, 2009

Guest Speaker:  Sharon Haase, MFT. 

Topic: Talking with your loved ones about chronic illness

 

Summary of Meeting – February 4, 2009

Announcements:

Patient Education at Kaiser Hospital, Santa Clara, Saturday Feb 21^st.  See our website for more details www.alamedalupus.org

Spring Conference sponsored by Lupus Foundation of Northern California, Sat., March 21.  Topic:  Bone Diseases in Lupus. www.lfnc.org  Click on events.

 

Discussion:  Issues surrounding sex and sexuality when you have a chronic illness

      It’s taken me awhile to digest what happened at the meeting and write an essay about it.  It’s not something that can be summarized in bullet points.  I was expecting a repeat of the lighthearted discussion we had the last time this topic came up spontaneously at a meeting.  But, it quickly became clear that we, in the group, are in different situations and have diverse needs regarding the topic of sex.  For some, it was mainly about issues regarding the physical act.  Those things can be dealt with if you have the right products and open communication with your partner.   But on a deeper level, for many of us, it’s about relationships.  (I feel like I’m writing a sex and the city column!) If you are dating, do you tell the person you have lupus?  If so, when?  What about flings?  Is that the way to go because you don’t want to get too involved and then spring it on someone that you have a chronic illness?  Do medications affect sex drive?  How do you know that’s the problem?  Could it be depression causing your libido to take a nose dive?  There are no easy answers, only more questions.  The one thing that we agreed on though is for long term relationships,  honest communication with your partner is key.

Guest speaker:

        In April we will have a guest speaker, a therapist who specializes in group therapy for people who grew up with an ill or disabled family member.  This will be an opportunity for you to try to put yourself in the shoes of the people who love you and care about you, though they may not always demonstrate caring in the way you’d like.  This is not how to talk to your loved ones so they will listen.  This is about listening to them and trying to understand what it’s like living with YOU and your illness.