This is the final post to recreate my keynote speech delivered at the 2016 Sjögren’s Syndrome Foundation National Patient Conference April 8th and 9th in Seattle.

One of the most difficult challenges to face when living with an autoimmune disease is knowing that you can’t necessarily perform at the peak of your potential. This thought is not only a major blow just after diagnosis (and part of the initial grieving process), but continues to rear it’s head as your disease level changes over time .

This was the key challenge that inspired me to create the Autoimmune Grief and Life Stages and design a program to help me adjust in a healthy manner. I knew that if I wanted to work (and live) at the highest level of my capabilities, I needed to know the parameters of my capabilities. These parameters can change without much notice (depending on my disease level, emotional stage, or the required commitment level of the opportunity) and paying attention to my Sjogrens history helps me know how to create my future.

As I’ve stated in earlier posts, I try to be very mindful about the emotional and physical stage I’m in, and then utilize tools to help me get to a better stage. I call this being on the Road to Reinvention, and I’m getting pretty good at it!

Happiness is a choice, especially when you have an Autoimmune Disease!

The definition of Reinvention can be big or small, but I use it to remind myself that change is inevitable. Living with Sjögrens will present many changes over time, and being adaptive is one of the best ways I’ve found to avoid feeling sad about that fact. 

Here are some tips and reminders I use to live well every day, and to help me travel the Road to Reinvention.

1.  I Choose Happiness. This sounds easy, but it’s not! Research shows that certain people are born with a greater capacity for happiness than others. The environment contributes a great deal, but for those of us who were not born with an abundance of the happiness gene, we need to nurture our happiness a bit more aggressively. My best friend, Lynn, was born with a healthy serving of happiness….I was not. Not that I’m naturally unhappy, but I sometimes need to sincerely make the choice to be happy! The more I practice this, the better I get. If I need encouragement, I just call Lynn.

2.  FUEL my body, mind, spirit. We should all know what actually fuels us. I know what fuels my body, mind and spirit, but I sometimes slip and simply go for what is filling the space (and not fueling me). I love sugar….it does not love me back. If I don’t fuel my spirit in nature and with loving friends, I am in jeopardy of having the disease take center stage and not ME. When I am feeling unwell, I practice FUELING to the best of my ability to speed up processing through difficult emotional or disease stages.

One of the most important things I can do for myself is get the rest and self-care I need for the disease level I’m experiencing. The diagram below highlights how I break my waking hours into four segments and follow the plan for how I’m feeling. I need to work for a living, so much of my time is dedicated to work, rest and self-care. For me, self-care includes meditation, yoga, walking my dog, and swimming.

Get the Rest and Self-Care You Need

Sjogrenslife.com_Life schedule for Disease level

3.  Be glad to be pretty-good. This is where I have needed to redefine my “peak performance” definition. Before Sjögrens, I performed at a very high level and was proud of that. Now I tell myself that when I’m “pretty-good”, I’m still better than many who might be tackling a job.

4.  Be creative & productive (enough). I tend to want to be very creative and productive. Instead of saying that I will be happy if I’m very productive and creative, I tell myself to be happy that I’m productive and creative enough to feel competent (enough). This is another “peak performance” adjustment.

5.  Be a loving partner and friend. I can’t always be a great friend if a friend needs me to attend a lot of activities with them or train for a marathon together….but I can always tell them I love them.  I also try and let my partner know how much I love him, even though I can’t socialize with our friends as much as I’d like to or go hiking in the high desert together. (I am not a parent, but I can imagine that those of you who are must focus all your energy on your children).

When I am in a relapse or a new phase of my Sjögrens life, I review the Autoimmune Grief and Life Stages, consider my historical physical and emotional patterns and begin the work to reinvent.  For me, the most important steps I can take are:

  • ASSESS the situation and options objectively.
  • Learn new things. 
  • Build MOTIVATION to take steps to REINVENT!

Whenever my Sjögrens life changes on me, I want the opportunity to reinvent myself so I can feel like I’m living as well as I possibly can. The definition of “my peak” may need to be redefined as I alter disease levels and (frankly) as I get older, but I believe I have a healthy approach to make my best choices. I’m not always perfect at this practice, but the more I try, the better I feel!

Sjögrens (or RA or Lupus or MS) has taken away some of the tools in our toolbox to live a full life, so we need to learn new tools! I hope my tips on how to move through your Autoimmune Stages helps you better understand your own journey. Get inspired and create new tools that work for you!

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