June Newsletter

Lupus Colorado Annual Report Available

As a small disease-specific organization our vision is to be the best resource for people in Colorado impacted by Lupus with emphasis on the newly diagnosed.

Our mission to improve the quality of life for people living with lupus through community education, client services, support of research and advocacy guides our decisions.

Please take time to review our annual report to see how we work to stay true to our mission, how our finances are managed and how so many people come together to help make our organization successful!

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Food Intervention!

Carie ShermanBy Carie Sherman

This is my self-imposed INTERVENTION.

Over the last few years, my illness has forced me to make changes. Big ones.

Some were for the best—like going freelance, rediscovering yoga, and simplifying (pretty much) everything. Some changes were the worst, like no more running, becoming a social recluse, and needing more naps than my toddler.

Like it or not, these changes have kept me in relatively good health.

A health I’m very much enjoying, thanks—in NO part at all—to my terrible eating habits.

My brain and body know good food leads to good health. Yet I keep making bad choices.
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Paging Dr. Crane: Your Patient is Now Sulking in Room One

Carie ShermanBy Carie Sherman

I admit it. Some days I feel sorry for myself.

My most recent funk started at a family dinner. I went from being engaged and interested to being a spaced out, slightly crabby, vacuous lump.

Thankfully, Dr. Frasier Crane helped me snap out of it.

That evening I was flipping channels, trying to find something inane to capture my unreasonable mind, still mad as heck though not sure why. I had seen this black mood before. By now, my brain knows better than to launch into a state of Why Me.

So why was I again so mentally miserable?

Frasier had it all figured out.

It was really quite simple, he said. You aren’t mourning the fact that you may have lupus. You’re mourning the life you thought you would have.

Frasier paused. I started thinking about when my mood went south.

Perhaps it was during the excited talk of racing in one of those insane mud runs—an event I would have happily signed up for. Maybe it started when I was holding my sweet nephew, born around the time my doc told me It’s Best to Wait to get pregnant again. Or it could have been watching everyone enjoy my favorite ooey-gooey chocolate cake. Cake I couldn’t eat because I took another doc’s advice to try a gluten-free lifestyle.

YES, I told Frasier. That makes sense! Those happy conversations reminded me that my life has changed. And it’s okay to be sad about that.

The acknowledgement alone yanked me out of my pity-party for one. Why? I’m not entirely sure. The conversation with Dr. Crane was pretty one-sided.

Still, it was enough to convince me: It’s okay to mourn the life I had expected. And next time I’m feeling gloomy, I’ll try shifting my focus to the wonderful things the last few years have taught me.

My “new” life awaits. And I’m thrilled to explore it.

Does your illness affect your mental health? How do you cope?

 

 


May Newsletter

LRI launches federal provider program

Singer Toni Braxton Shares Personal Story of Lupus

toni-braxtonThe Lupus Research Institute (LRI) National Patient Coalition participated in today’s launch of the Lupus Initiative®, the culmination of its five-year advocacy campaign resulting in $4.6 million in Federal funding to make the healthcare provider education program possible.

Helping to draw attention to the need addressed by the Initiative to train professionals in lupus diagnosis, six-time Grammy award winning singer Toni Braxton shared her personal story as a lupus patient and Board member of Lupus LA, an LRI Coalition partner. “It took years to be diagnosed with lupus,” said Ms. Braxton. “There were so many signs like joint pain and extreme fatigue, but it wasn’t until my white blood cell count dropped twice that I was finally tested for lupus. Proper treatment can only begin after lupus is diagnosed, so early detection is very important.”
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