Tag Archives: lupus

Mind Games

15 Jul

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Not only does lupus affect you physically it affects you mentally. Now I know there are symptoms including headaches and trouble concentrating but I am talking about that little voice inside you that yells “Is it my lupus?” every time you have a headache, every time you are tired, every time you have chest pain, every time you have an inkling of pain throughout your body.

If you do think of your lupus, that automatically leads to stress and sometimes you start to picture the worst: bed rest, hospitalization, kidney failure. These little or major flares do a lot to mess with your head and I can’t stand it. I will be sitting at my desk and boom, chest pain. What do I do? Do I go to the hospital? Is it just a flare? Will it pass? Do I pop some Ibuprofen? Am I having a heart attack? If I am having a heart attack, what if I collapse and no one is around…can’t wait for that medical bill. Welcome to the mind of a lupus patient. Clinical depression or not, the sadness and stress can take over your mind any second, any day.

Even though that voice can sometimes get carried away, I am an avid believer in keeping a positive mindset. I love, love, love yoga and meditation. The freedom and control you have over your breathing, imagining the lupus is leaving your body, is a mind game I like to play with the evil nemesis lupus. No, this won’t cure you but it’s another tactic to prove lupus wrong.

Amid the pain, the tiredness, the headaches, you have to somehow reach deep inside yourself and appreciate you are alive and think positive. You have to remind yourself that research has come so far. You are the living proof and today you are proving lupus wrong.

~Nicole

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Summer Jam Youth Retreat

26 Jun

From June 7th-9th, six fabulous Physical Therapy students from Saint Louis University – Molly Gries, Mollye Leas, Claire McInerney, Claire McKeone, Lindsay Noesen, and Laura Sloan – spent a weekend volunteering as camp counselors for the Lupus Foundation of America – Heartland Chapter’s Summer Jam Youth Retreat.

Summer Jam Youth Retreat is the only LFA-sponsored camp in the country for young women with Lupus. It is a free weekend long summer camp for girls with lupus serving as an opportunity for them to talk to and get to know others fighting battles similar to their own, while also having a camp experience they might not otherwise have. Most of the campers have lupus, while the rest were there to support their friends who have the disease.

Here is what one of our fabulous volunteers, Laura Sloan, had to say about the experience:

Throughout the spring, we worked with members of the Lupus Foundation to plan activities and make it the best camp experience possible.  At camp, the girls participated in a variety of crazy activities we planned for them including making masks, decorating flip-flops, performing skits, practicing yoga, and many other camp activities.  I, personally, did not know what to expect from the weekend, but it was an absolutely amazing and unforgettable experience. The campers were receptive to new games and ideas as well as each other.  They helped each other make s’mores at the campfire, worked together with their cabin mates on a scavenger hunt, and sang karaoke like rock stars.  With or without lupus, there was a mutual respect among these young women that we were all honored to be a part of for this brief window in time. It was a brilliant demonstration of the strength of the human spirit that I can only hope these young women will take with them on their life journey with Lupus.

We are so thankful for Laura and all her classmates! Their energy, enthusiasm, and careful planning made this weekend a truly memorable experience. We hope we get a chance to work with them again soon!

If you would like to learn more about our Summer Jam Youth Retreat, be sure to check our out our photos and like us on Facebook!

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Lupus Warrior? Lupus Survivor? Lupus Thriver?

17 Apr

Last week at the LFA Heartland Chapter, we had a discussion about lupus and identity. We posed the question, “What do you prefer to be referred to as? Lupus warrior? Lupus survivor? Lupus thriver? ” on Facebook and we were overwhelmed by the volume of responses and how passionately everyone felt. In an effort to continue the conversation, we asked veteran blogger and regular contributor, Nicole to share her thoughts with us:

Nicole's PictureTo be honest, this is the first time I’ve thought about this. I’ve never considered giving myself a title in regards to my battle with lupus. So with that, I’d say I’m a lupus warrior. Although I cringe at the thought of ever letting lupus define me, I’ve been fighting lupus for 11 years now and I am quite proud to say this. 

Of course there have been many ups and down’s along the way, mentally and physically, but I am happy to currently be in remission and that is an accomplishment in and of itself. In a way, I have proven lupus wrong. 

Although I am in remission, I have to live with the fact that I can have an unexpected flare any moment. This daily reminder is a constant battle that I refuse to let ruin my day. Focusing on the positive is a must when having any negative thoughts. 

If you don’t like something change it; if you can’t change it, change the way you think about it.  ~ Mary Engelbreit

If you  would like to contribute, just send us an email at info@lfaheartland.org. We want to hear your stories and opinions whatever your connection to lupus and the Heartland Chapter.

Aside 11 Apr

Hey Blogosphere! Just like the Cardinals and the warm weather, the LFA Heartland blog is back, or at least we are going to try to be. We have a series of new writers and couple of familiar ones so it should make for an interesting read.

The Lupus Foundation of America, Heartland Chapter was lucky enough to have two young men from St. Mary’s High School generously volunteer to spend their spring breaks with us as part of a junior service project. They spent the first week helping us prepare for our Lupus Rally and Advocacy Day in Jefferson City and the second getting a feel for life at a non-profit. Here is what they had to say about the experience:

ImageZach Lauer

My friend, Vince, and I went on the trip down to Jefferson City together for Advocacy Day.  It was actually a really exciting day and I strongly encourage anyone who is even thinking about going to come down with us next year. We had an opportunity to speak to our senators about lupus and Medicaid expansion. We also got to see them participate in a floor meeting. The public rally was really eye opening. It showed me some of the struggles of people have with lupus. Talking to the other participants and listening to the speakers at the rally, impressed upon me just how disabling and cruel the disease really is and how often it is underestimated. It was a very impactful experience.

 ImageVince Meyers

             As a student from Saint Mary’s High School the juniors every year have a junior service project where we spend two weeks at a non-profit organization. I chose the Lupus Foundation of America, Heartland Chapter because my mother suffers from lupus. I want to learn as much about this terrible disease as possible so I can do everything I can to benefit the well being of my mother.

           Over the course of my junior service project, I learned a lot about both the disease and the organization. In addition to preparing for an advocacy day in Jefferson City, I did some data entry and updated the LFA’s contacts. I also reached out to funereal homes and doctors offices to help the Lupus Foundation of America maintain relationships with these organizations. This experience has been a lot of fun and a great learning experience as well.

We would like to give a big thank you to Zach and Vince for agreeing to spend their spring breaks with us. They were a huge help around the office and a lot of fun to get to know. We hope they come back and visit soon.

If you  would like to contribute, just send us an email at info@lfaheartland.org. We want to hear your stories and opinions whatever your connection to lupus and the Heartland Chapter.