Sjogren's Syndrome is Common?

I sometimes mention Sjogren's syndrome, the main autoimmune syndrome I have. Sjogren's affects the moisture producing glands in the body, the classic symptoms are dry eyes and dry mouth. For some people, that is all they have, others may have a variety of other symptoms, but not have dry eyes or mouth at all. Some people are able to continue on with all their roles in life, others become completely disabled. There have been estimates that between 1-3% of the population of the US is affected by Sjogren's. That means that this disease, which so few people have heard of, and until recently was thought to be rare, is actually pretty common.

That means that there are many, many, MANY people out there who have Sjogren's syndrome, and don't know it. For some, it is because their symptoms are mild, or they blend in with something else they have, or they figure what they feel is just a normal part of aging. Then there are all the others. The ones who know there is something wrong, and are searching for a diagnosis. On average, it takes 5-7 years for people with Sjogren's to get an accurate diagnosis. People are often told they have lupus, or rheumatoid arthritis, both of which have some overlaps with Sjogren's. There is a blood test, but not everyone with Sjogren's tests positive. I could go on and on, but you get the idea. 

Unfortunately, treatment can be haphazard, or even inappropriate if you don't have an accurate diagnosis.Also, having a diagnosis is beneficial psychologically, in that you feel 'vindicated', that you didn't imagine the symptoms, they weren't all in your head. 

On June 1st, our Northeast Ohio Sjogren's Syndrome Support Group is having a Walkabout- a short walk, since many of us, (including me, these days) are limited in how much we can walk.We are collecting money for the Sjogren's Syndrome Foundation, which will go to sponsor research grants for researchers studying Sjogren's syndrome, looking to understand it better, and for better ways to diagnose and treat it. The funding will also go to educating the public as well as the medical community about Sjogren's, so people will be diagnosed more quickly in the future.

Please go to my Firstgiving page and make a donation to help us with our mission. My tear ducts and salivary glands thank you, as does the rest of me, and all the other people affected by Sjogren's.

How Do I Know What to Do?

It seems that sometimes I live with a problem for quite awhile before  it occurs to me to try to deal with it.  It especially happens in regards to health issues.  I think that is because I have so many things going on that I hope some of them will just go away.  I know there are times that the first time I say something to my husband about an issue is two or more weeks after it started.  He is very patient with me, but I don't want to over-burden him with my issues. 
NOTE- The following should be viewed as suggestion, not as medical advice.  Use your best judgment, and follow your doctor's instructions.

So how can you tell if a pain or other issue is worth pursuing?  If it is new and severe, or disrupts your ability to function, seek help right away.  If it is a symptom you have been told to watch out for, follow your doctor's instructions (eg- if he said call me right away, do that).  If you have a change in medication, hold on to the insert that comes with the med., and watch for any of the symptoms listed for allergic reactions, and follow instructions.  If you are unsure what you should do, (stop the med, go to the emergency room, etc), call your doctor right away.  Anything that feels life threatening, of course call '911' or get to the emergency room. 
If you have a new pain or other symptom that is not severe, take note of it, and see what it does over the next week or two.  If it gets worse, go to your doctor.  If it seems to be getting  better, let it run its course.  If it stays the same, use your judgment regarding how much it bothers you, and how important you think it is to your health. If it is a familiar symptom, either something that went away and came back, or showed up in a different body part, you are probably safe in treating it as you have treated it in the past.  If it needed attention from a doctor in the past, it would likely need the same attention now.   
Find a local or online community of people who share your particular malady(ies).  I have found the Sjogren's Syndrome email list (SS-L@LISTSERV.ILLINOIS.EDU) to be invaluable as a resource for information on symptoms and treatments.  Just remember that any online community should not take the place of personal medical care.  It is a place for people to share their own experiences, which may not be the same as your experience, and knowledge, which may not be accurate.
This all boils down to learning what you can about your particular health issues, being attentive to changes, having a community you can consult, and, most important, using good judgment regarding how to care for your health.

Uniquely Me

I have mentioned before the How to Cope With Pain blog and website.  If you have not checked them out, please do so, they are very informative and interesting.  The author of that blog had a contest last month where people submitted posts and he drew 9 winners randomly to win books related to coping with pain.  (I won one of them.)  Now he is reaping the benefits by posting the various writings.  Several days ago, an essay I wrote was published on his blog (See- I told you the blog was interesting!)
Here is a brief excerpt: 
If I had had my choice years ago, I would have preferred not to be ill. But it’s an integral part of who I am, what I do, and how I live my life. My illness has served me in its contribution to the character of this support group. It’s unlikely that this group would even exist if I did not have illness and pain. I would still be able to work full time, and likely would not have thought to start a group for issues I had not experienced.
Go read the rest of my post, and while you are there, explore the site.

Positive Thoughts on Chronic Illness

Yesterday in my Chronic Illness/Chronic Pain Support Group, we talked about Managing Emotions.  Huge topic. One thing that I did was to have everyone take 5 Post-it notes, and on each one, write an emotion they have or have had related to their pain or illness.  I had a poster divided into 4 quadrants, labeled Mad, Sad, Glad and Afraid.  All emotions can fit into one of those emotions, or a combination of them.  I had everyone place their Post-it notes on the board wherever they thought they best fit.
We had no surprise when we saw that the fullest quadrant was Mad, followed closely by Sad and Afraid.  There were only 2 Post-its in the Glad quadrant.  Some people were surprised there were any in that quadrant at all.  Who would be glad to have chronic pain or illness?  What positive feelings could possibly come from being sick and hurting all the time?  One of the Glad words was mine, the other was from someone who I know from our local Sjogren's Syndrome Support Group which I co-lead.  Her word was 'surprised'.  She said she is surprised when she has times when she feels good and can do what she wants to do. I like her use of that word.  She could have used 'pleased', and that would have covered the basic feeling, but 'surprised' has another connotation to it. 'Surprised' includes an aspect of  an unexpected gift. When you are used to not feeling well, having a day when you do feel well is truly a most pleasant unexpected gift.
The Glad word that I contributed was 'grateful'.  That word has several meanings for me here.  I am grateful that at this point, my issues have settled down into manageability, and my pain is not constant.  Various parts hurt when I do various things, but I do have times during the day when I can pretend that nothing is wrong with my body.  The other way I am grateful is for how it has changed my life.  If I did not have pain and illness, I would likely be working full time, and not only would I not have time to write this blog and run my support group, but I likely would not have thought of doing these things.  I have a nice mix of things I do with my time, and my illness has allowed me the opportunity to do them.
As I write this, some other positive thoughts come to mind.  Because of my illness and pain, I have learned patience. I have learned mindfulness. I have had more time to devote to my art and to writing.   I have met many people I would not have met.  I have done some traveling (to the national Sjogren's Syndrome Foundation patient conferences). I have time to nap during the day if I need to, which I just did.  You probably didn't even notice I was missing for awhile between the last paragraph and this one.

Serenity Prayer

I often talk about the Serenity Prayer with my patients.  It originated with Alcoholics Anonymous, and has taken on a life of its own.  It goes like this:  God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.  People seem to spend alot of energy and time in trying to change things that can't be changed, and complaining about things that could be changed.  The most difficult part, it seems, is the wisdom to know the difference.
Yesterday the second session of my new Chronic Illness/Chronic Pain Support Group was scheduled to begin at 4:30 pm.  I had 4 people who had told me they definitely planned to come, and a couple other maybes.  Compared to some places, the local effects of the winter storm that hit the US were relatively mild.  We did not have alot of snow, but we had ice.  Schools were closed for the second day, including universities.  As the day progressed, one by one I got e-mails and phone calls- can't get the ice off of the car; can't drive down the icy driveway; afraid to go out.  3 out of the 4 let me know they were not coming.
I had all my notes and handouts ready, I had the materials and samples of the art project we were going to do. I decided I did not want to use the topic I had prepared if just 1 or 2 people showed up, so I put them in a folder to use for the next session.  We would have a free, open session, I would give them options to play with clay, paint or draw, do a collage, or try an art therapy type experience.  I was looking forward to a chance to have a little fun, to explore ideas with other people. 
There is a Yiddish saying "Man plans and God laughs".  4:30 came and went.  At 5:00 I went home (that is, I walked through the door that separates my gallery from my apartment).  I did not feel disappointed.  I had actually expected that no one would come, but I had been prepared if they did.   I had (wisely) put the Serenity Prayer into action.  I (serenely) accepted that I could not change the weather, and the fact that it affects people's behavior.  I (courageously?) changed my plan for the session as the afternoon progressed and cancellations came in.   I made my plans, but at the end of the day (I hate that expression, but it is literally accurate here), I, too, was able to laugh, because of the Serenity Prayer.
Over the years since I learned it, I have practiced putting the Serenity Prayer into practice (pun intended).  It does take some practice to apply the right part of the prayer.  I think we often know the difference between what we can and cannot change, but don't use our wisdom of that knowledge to direct our actions.  It takes stepping back from the situation and thinking 'What is the best course of action?  What is most likely to bring about the desired outcome?'   Using the Serenity Prayer leads to more efficient use of time and energy, and less frustration.
I do sometimes wish I still lived in El Paso, Texas, where I grew up.  We never had to cancel events because of weather (at least, not as I remember).  

Chronic Illness/Chronic Pain Support Group

The first session of my new Chronic Illness/Chronic pain Support Group was Wednesday.There were four participants, plus me.  Three of the people there already knew me from the Akron area Sjogren's Support Group that I helped found, and that I co-lead.  At the Sjogren's group I am the 'education chairperson', or as I like to call it, the 'science officer' (I guess I watch too much Startrek). I often share little tidbits or longer presentations on topics related to living with Sjogren's.  I take it as a vote of confidence that these people have already seen me in action, and wanted more.  The other person there was one of my husband's patients who has chronic pain.
Each session will have an education/discussion segment and a creative portion (art, craft, writing- no experience necessary). The creative portion will support the education portion in some way.  I get to combine several aspects of my life together doing these groups. I am a psychiatric Occupational Therapist, a big part of my job is teaching coping skills.  I am also an artist in a variety of media.  I think the creative portion will provide a number of benefits. Focusing on a task can take the mind off of the body for a while.  Learning new skills helps build self esteem.  Some of the participants may discover they really enjoy a particular media, or are really good at it, and want to pursue it on their own, giving them a new hobby or outlet.  People can interact and socialize while they work, and maybe make some new friends.  And last, but not least, its FUN!  The other aspect of my life that applies is that I have lived with chronic pain and illness for over 20 years, so I know what it is like.
I think the first session went very well.  First we introduced ourselves to each other, and I introduced the concept of the group.Then I talked about journaling, the benefits, how-to's, and a variety of types of journals.  Then we made our own journals, starting with a packet of bound pages and other materials.  We actually did bookbinding, ending up with journals bound in our choice of covers, including a ribbon to mark the page we are on.
I think this support group is unique in its format. I don't know of any other programs that combine the creative and didactic together as I am doing.  Most support groups focus on coping with a specific illness or issue, and some end up being 'bitchfests, where people complain about their lives or problems.  While having someone who will listen, and who understands what you are going through is important, I want my group to focus on coping and living our lives to the fullest, despite our issues.  I am not a trained art therapist, so what I do is not art therapy, but in some sessions we will talk about our art in similar ways to art therapy.  I believe that the two segments will add to each oher and make a stronger and more interesting program. 
My group is the first and third Wednesdays of each month, 4:30-6:00 pm, at my gallery, SherylsArt Gallery, 3241 Oakwood Drive, Cuyahoga Falls, OH.  The cost is $15 per session, to cover materials and supplies.  If you are in the Cuyahoga Falls/Akron area, come join us.  Otherwise, look for support groups in your area.  People who have been through similar issues can be very supportive.
 

Silk Painting, and a New Support Group

If you are familiar with my blog, you probably noticed that I have recently changed the look of this site.  I decided it was time for something new.  I also have become more comfortable with Blogger, and wanted to experiment with different options with colors, background, etc.  I like the background.  It looks like one of the silk scarves I make.
Here's how it is done:  I wet the silk, and stretch it out on a frame so it is fairly taut, and won't touch the table below it.  Then I swirl on silk paint, my favorite combination is blues, greens, turquoises, and purples, with a little pink for accent.  Getting the silk wet beforehand allows the colors to flow into each other, creating infinite shades.  The bubble effect is created by scattering salt on the silk while it is still wet.  The salt attracts the water, making lighter areas where the salt crystals lay, and leaving paint in the surrounding areas more concentrated and darker.  This is an art that I like to do when I feel adventurous.  Because of the way the water, paint and salt interact, there is limited control in how the finished piece will turn out.  You can get similar effects using water colors on paper, by following the same process.
This is generally not a good art to do on the days when I feel like everything is out of control, and I need something I can control,   An interesting observation- On days when my pain is high, it can be good project, because I feel like I need to just let go and let things be.  The results are always pleasing, and often surprising.  Doing silk painting on a high pain day gives me something that I can be pleased with, despite the pain.
There is another change in my blog site that is relevant only to people living in the Cuyahoga Falls/Akron, Ohio area.  I have added a third page to my site, under the tab 'Support Group', located below the header and above the butterfly panel.  This page has information on the new Chronic Pain/Chronic Illness support group I am starting.  Part of each session will be creative, either art or craft, no experience is necessary.  The other part of the session will be educational/discussion on different topics related to living with and coping well with chronic pain and/or chronic illness.  We will meet at my gallery the 1st and 3rd Wednesdays of the month, the first session will be January 19, 2011.  Go to the Support Group tab above for more info and to sign up.
I will tell you more about this support group on a later date.