Next Meeting:  August 4, 2010 
Topic:  Creativity as a Tool for Managing Lupus
Are you a knitter, painter, jewelry-maker, pastry cook, banner-maker?
Please bring an example of any creative pursuit that you may have and be ready to share why you do it and how it helps you.

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 – 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

 

Discussion:  Chiropractic, Nutrition and Neurology of the Immune System

Guest Speakers:  Glenn Caley and Torey Griswold

Glenn and Torey are chiropractic interns at Life Chiropractic College West in Hayward.  They are young, dynamic, knowledgeable and passionate about what they do and their belief that it can help anyone who suffers from chronic illness to better manage their life. This is not your mother’s chiropractor!  There is much more to it than solving lower back pain and the techniques now used are much different.  The message was that we have limitations because of illness. What can we change?  How can we minimize and manage flares through diet and movement.   They are treating a lupus patient.  She came with them and spoke briefly about how she has been helped by their methods.  She is under the care of Stanford doctors also.

Some Pearls:

1.       Movement = Life

2.       Stress = inflammation=Decrease in motion

3.       A balanced body is a healthy body

4.       Chiropractic restores communication between body and brain, get neurons firing better, movement improves

5.       Diet is also important.  Aspartame breaks down into a neuro-toxin.  Nobody should use it! (no diet cokes!)  Use honey or even regular sugar if you have to. 

6.       Leaky gut theory.  You can google it, but the basic theory is that inflammation increases pore size in your gut, so that things get through into the bloodstream before they are fully digested and cause an allergic reaction which increases inflammation.  I once heard a doctor say that the gut makes up 2/3 of your immune system.  It that’s a true statement you can see why this would be a problem. 

Bottom line is, it is all about BALANCE.  There are multiple ways that I have tried to restore balance in my life including tai chi and acupuncture.  Chiropractic is another way. 

You can contact Torey at 509-260-0604.  You can email Glenn at glenn.caley@gmail.com

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.