May 2015, the Sjögrens Foundation ran an article of mine in the newsletter The Moisture Seekers. Here are some of the tips I presented that may give you some ideas about managing your Sjögrens.

I embrace my disease – not fight it!

Instead of imagining an internal army kicking the sh** out of Sjögrens (as my friends who had successfully killed cancer had suggested), I found the imagery of embracing my Sjogrens to calm it down was what finally did the trick.

Moisture Seekers Article – What helps me live with Sjogrens

I think of my SjS as a small girl who is tired and acting out (and yes, I recognize the “inner child” similarity here). I finally realized that I was already attacking myself, and launching emotional attacks to combat Sjogrens was perhaps adding fuel to the fire. So I tried the tender approach. To me, this was different than the adage “be good to yourself” or “be kind to yourself”. I imagined that the little girl was a separate person that I needed to care for, dwelling inside of me. She is not mean or weak, she is in fact strong and confident, so she requires special attention.

If you are a person who tends to take care of everything and everyone around you, then this imagery might work for you too. It may work for you to care for someone else (even if she is inside of you). After a few years of practicing this imagery, I now can take a short-cut and just “be good to myself”.

Don’t make my world too small

There have been times when I focused mostly on Sjögrens and what I could not do. I found that my world started shrinking and became quite small.   That was not the life I wanted so I had to train myself to think of all the things I CAN do. Along the same lines, I started asking the question “Why Not?” instead of “Why”. Try it – it’s a good practice!

Beauty and Nature Matter

I moved to the most beautiful place (Sonoma, California wine country) in order to have natural beauty surround me. Not everyone can pick up and move, but everyone can take a nature walk. Be still in nature and soak in what you find beautiful. You might find Esther Sternberg’s book Healing Spaces as interesting as I do.

I feel the same about the beauty of music and art and their healing powers! I listen to new music every day and dance while making dinner almost every night.

Work and Productivity

For years, I managed my work time/stress by consulting on a project basis. Two years ago I went back into the Technology Industry and co-founded a software company; but I am not CEO.  I know my experience and wisdom is more valuable to the company than working the crazy hours typical in technology.

Because I am challenged and doing something I believe I’m good at, I am feeling better. I do have to manage stress and discipline myself to not “power through” things, but this is all part of  knowing my limits.

You might find that being your most productive self, doing the thing you do best, and managing your limits, can help you too!

 “N0” is a complete sentence AND it’s OK!

If you are a person who has taken care of many people and many things, it’s time to look at that. Sometimes it’s a good thing and sometimes it crosses over into something else. Try letting go of the “something else”. It’s also time to let go of feeling bad about it!

Be a good friend

My friends have had my back when I was not doing very well. In fact, a couple of friends certainly gave more than they received for a few years. One day I asked myself “Would you want to be your friend?” I didn’t like the answer so I vowed to be a good friend to those I love. In order to do that, I had to relinquish a relationship that took too much negative energy so that I had positive energy for those who lifted me up. I still make new friends, but I manage my energy and time well.

Give back to something

What is important to you? Give some time to it, but make sure you are using positive energy and that you’re not pushing beyond your limits. I have several community things I support, but being on the Board of the Sjögrens Syndrome Foundation brings me great satisfaction. It combines three things for me: my desire to know more about the disease, my desire to speed research for a cure, my desire to help others understand and deal positively with their Sjögrens.

If you’d like to give back to our community, consider writing an article for the  Moisture Seekers that you believe will help other patients.

Sleep, Exercise, Food and Wine

Sleep is my best tool! I always go to sleep when I’m tired and wake up when I’m ready. And exercise always makes my joints feel better.

I love food and wine. I feel my best when I eat an organic diet of fruits, vegetables and proteins, exercise daily and steer clear of carbs and sugar (which includes wine). But I live in wine country for goodness sake so I’m going to drink wine. I do so many things “right” so that I can enjoy a glass of wine when I like. Preferably really good Pinot Noir with really good friends.

Keep up to date on Sjogrens issues by becoming a member of the Sjogrens Foundation. The Moisture Seekers newsletter is included with every membership.