Next Meeting:  November 4, 2009.   We meet at the Alameda Free Library, 6:30 - 8:00PM

Topic: Rituals and Routines for Creating Balance in Your Life:
 Do you have some special routine that you do daily or weekly that helps you cope?
Yoga? Afternoon tea?  Please come and share your ideas with others.  I will give a brief talk about how having routines can help you find some balance in your life.


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 – 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.

 

Summary of Meeting – Feb 6, 2008

Lupus and Heart Health was the topic of discussion.   Four of us presented information on heart-related issues. 

5 Things you need to know about Lupus and the Heart – Nanette

Young women with lupus can have heart attacks because the inflammatory process contributes to atherosclerosis or hardening of arteries.  Here are some things you can do. 

1. Exercise:  Cardio vascular exercise for 30 minutes 4X a week.  Physical exercise reduces pain as well as increases heart health.
2. Diet:  Control sugar intake.  Be aware of glycemic index.
3. Stop smoking
4. Take meds to control lupus
5. Follow up regularly with your doctor and report any new symptoms. Remember that women sometimes experience heart problems as shoulder pain or indigestion.

Heart Health and Nutrition – Lorene

1. Eat when you feel hungry and take time to enjoy it.
2. Mediterranean Diet is the best
3. Foods can affect your moods.  There are several books on the subject.  Here is a link to some of them   

https://www.amazon.com/s/ref=nb_ss_/002-9651060-3089663?url=search-alias=stripbooks&field-keywords=foods+and+moods&x=0&y=0

Stress Reduction Tips – Adrienne

1. Take on less work/fewer responsibilities- Learn to say NO
2. Address relationship conflicts – invest time in improving those that you think are important and fixable
3. Take more time for yourself, breaks, vacation.
4. Add pleasurable activities to your life: crafts, dancing, music
5. Do volunteer work
6. Take a media break from newspapers or television news
7. Stay connected to people by going out with friends or inviting friends over, joining a club or a group.  Those with strong human connections experience less depression. 
8. BREATHE – Adrienne led us in a breathing exercise for relaxation.

 

The Importance of Exercise and How to Start when you feel unfit – Tina

The 10-minute exercise workout you can do while watching TV

1. Marching in place 2-5 min.
2. Leg extensions 10 – 12 times forward, side, back
3. Lunges for strength and flexibility
4. Seated leg lifts
5. Calf raises
6. Sit on an exercise ball while watching TV for better balance and killer abs!

 

Summary of Meeting – Jan 2, 2008

New Meeting Time.  Due to changes in the Library's hours of operation starting January 1, we have decided to move our meeting time up to 6:30pm.   Our group will still meet on the first Wednesday of the month but the time period will be 6:30 8:00pm.  The library will be closing at 8pm.  Everyone present agreed that they liked meeting at the library so we will try this new schedule and see how it works. 

Volunteering at the Lupus Foundation. 
If you'd like to help organize the first Lupus Walk in the Bay Area sponsored by the Lupus Foundation of America, there will be a kick off  meeting on Saturday, January 19 at the San Mateo Public Library from 10am – noon.  For more information contact the LFA   office at 650-692-2091 or visit the website, www.saclupus.org

Also, during the month of January some of us are going to try to make a weekly visit to help out at the office in Burlingame.  For more details contact Nanette at nanettestewart@gmail.com

Getting Organized
Lorene and Nanette shared Medical Resource binders that they have found to be useful.  If you want to make your own you'll need:

1. A three ring binder with front and back pockets
2. A calendar with binder size pages so that it can be inserted into the binder.
3. Dividers with tabs.

I use the front pockets for appointment cards, prescriptions that I haven't had filled yet, and miscellaneous stuff that I need to put into to binder but haven't yet.

I use the back pockets for prescription stubs so that I have the refill information handy.  The calendar is the very first thing in the binder and I write all my doctor appointments on it.  Lorene also write down symptoms on her calendar so that she can record and track patterns.

We have tabs for dr. notes; lab results; exercise;  meditation pictures;  interesting articles about lupus and related things;  and insurance information.  When applying for disability or dealing with insurance problems, having all this information at my fingertips has been invaluable.

 

Next meeting will be Wednesday February 6, 2008.  The discussion will be Lupus and Heart Health.