June Newsletter

November 26, 2018

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!

Q&A on progress with lupus research

The digital edition of the Autoimmune Awareness Supplement to the Washington Post includes this Q&A session with LRI’s President Margaret Dowd on what lupus research is achieving.  Strides in predicting lupus flares and heart risk; discovering how lupus attacks the brain and the heart;   and improving diagnosis of kidney damage are among the many discoveries Ms. Dowd shares.   She also answers questions about better treatments on the horizon and why a cure for lupus may be within reach.

Time of transition for Anita

Anita Fricklas

Dear Gentle Readers,

A lot has happened since I last wrote. It’s been life changing both good and bad. It’s been interesting, yet somewhat devastating. It’s been, above all, an attack on my usually mellow demeanor and on my lupus.

What happens when a situation arises that attacks the very core of your being, that beats you up and spits you out like last year’s clothes? Your lupus flares up. No matter how you try to stay calm and how much you try to de-stress, it’s a losing battle. Your joints begin to ache, your head hurts, you get this overwhelming fatigue that makes getting to the bathroom a major chore. In other words, you fall apart. I know. I’ve been there.

I think I told you that my husband was diagnosed with a non-treatable cancer. He is feeling fine right now, but we don’t know what the future will hold and how we can deal with it. The tables have turned. He has been my caregiver for all the years of our long marriage. Now I have to be the caregiver. But I am still needy myself. I feel guilty thinking about myself, but it’s a fact that I have health issues that require some help.

There are so many decisions to make both about the health of my husband as well as the care that he will need. Doing all the investigative work is exhausting and mentally stressful, not to mention that, no matter what we do, the outcome will not be positive.

You are probably wondering how I could say that this life changing condition could be both good and bad. I’ve just described the bad part in a little bit of detail. The good part is that my husband and I have reached a new phase in our relationship. Little things are left by the wayside as we decided that they were too unimportant to deal with. Harsh words were left unspoken because they are useless and hurtful. We have concentrated on spending time with friends and family members who make us feel good and we eliminated the toxic people in our lives.

Our doctor advised us to work on our bucket list, so we have planned one trip a month to visit with our children, our friends, and our cousins. We might even take a longer trip if we are able. In other words, we are living our lives as we always did – one sunny day as a time. There is no use sitting around waiting to be sick or to have a flare or to have some other bad thing happen. It probably will given enough time.

The best thing you can do for yourself and for those you love and who love you is to be positive, to be active, and to do all you can do to enjoy your life. It is a gift and only you get to unwrap it.

Until next time,

Anita Fricklas

Calling all men with lupus!

Sandra Kanowitz, MSN

Where are the hundreds of you in CO who have been diagnosed with lupus hiding out? And the bigger question is why? We females with lupus need and want you to be active, visible, and participating in our community! It feels as if our right hand is missing the left, and we are less effective and efficient without your voice, creative ideas, and strength. Who will be brave enough to answer this call? Why do we need you and you need us? Let me expound on this, one of my favorite topics.

Men have a different perspective than women on many issues. You often see illness in a different light, and have a different outlook on work, career, family, physical capabilities and appearance. Role modeling, accepting limitations and help, and identifying and sharing feelings are approached differently between men and women. We can identify these differences in general, as they apply to living with lupus, and benefit from learning from one another. Perhaps we can learn how to move toward the middle when our perspective is too extreme, how to understand our spouses better and benefit our entire family, how to model for our children effectively, how to withstand our stresses in the workplace, and set priorities in the face of chronic illness.

Men have different goals, demands, stresses and stress releases than women. We can support one another better when we understand these situations, cooperate to bridge the gaps, and help each other attain goals and overcome hurdles.

We have the same illness, common problems to solve, common feelings, fears and issues with which to grapple in everyday life. Being segregated by gender leaves both groups isolated and fractionated. We can accomplish more together than apart!

We have a lot of work to do to help ourselves, others with lupus, and future lupus sufferers (which could be in our family). The community at large and the medical community need to learn about us, our illness, our struggles and strengths, and become part of the solution. We need to present a united front in that effort to raise awareness, create legislature that is helpful, raise funds for research, and aid in the diagnostic process. Your presence is a reminder to all physicians that men do get lupus; to think of it and look for it in men who present a myriad of seemingly unrelated symptoms or complaints.

In our society, men are viewed as leaders, strong in commitment, effort and action. When 10% of our lupus community is invisible, a silent minority, we are lacking your strength, your deeper, louder voices that may be heard over our softer feminine ones. You can pound your fists harder, you stand taller and can be seen more easily, you can better command attention from predominately male politicians. In our situation, the minority can loom larger, shout louder and be a reckoning force in our fight against lupus.

Lastly, we want you to benefit from the camaraderie that our community offers. We don’t want you suffering alone, in silence, with little or no support. We want you to join our support group meetings, events, and share your experiences, knowledge, ideas, and strength with us. We all need each other to cope with a difficult, life-long card we have been dealt. We can’t play the game with 10% missing. You are a critical part of our team. Please, come out of hiding and step up to the plate, get in the game, bat your best, celebrate the homeruns, and help us win!

Carie: The buddy in ‘lupus limbo’ you didn’t know you had

If you’re not keeping up with Carie Sherman’s blogs, you should be. Imagine having a college roommate, daughter-in-law or best friend with lupus — that’s Carie! The way she lightheartedly writes about her serious health challenges can’t help but make you smile. Read her posts and be sure to comment too! That’s the beauty of a blog, you can talk back!

Mustang On Sale For LC

A kind family who lost their daughter to lupus has a mustang to sell and when someone buys it, all of the proceeds will be generously donated to Lupus Colorado.

The man who has donated it is the original owner and restorer. He lost a daughter to lupus about six years ago (and another child in a car accident). He and his wife are generous people and want this donation to help others.

Please pass along information about the car to anyone you know who may be interested!

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