Dainty as a Butterfly, Sly like a Wolf

8 Aug
Lee Row, Lupus Warrior

Lee Row, Lupus Warrior

Lupus is as dainty as a butterfly yet sly like a wolf, if you don’t believe it ask us we’ll tell you.

My name is Lee and I am doing way better than when I started out. I had to take a medical leave from school my freshman year of college and that broke me as a person. My whole life I strived to be a good student. I moved back home with my mom and became a shell of a person, only time I came out was for doctors appointments. Back then everybody frightened me and I was so shy and quiet. This made it difficult for my doctor to know how to help me, because I didn’t speak up to tell him what was going on inside my body. I had a stroke in 2010. After that I gave up completely. I sat in my room all alone with the TV and the lights off and cried. That’s when I decided to stop taking my medicines. I felt like they were just making things worse! I didn’t realize that my medications were the only things keeping me alive. My mother was so disappointed in me she’d yell at me, “Girl those doctors didn’t spend their whole lives in school to be telling you wrong.” But I was not hearing it, and I continued to disobey both her and my doctor’s orders. People came to my house to pray over me and my medicines but not even that helped. I lost my faith. I lost my trust in doctors. And I damaged the special relationship I’ve always shared with my mom.

I have a cousin named Felicia and she’s so persuasive and argumentative she could sell a leprechaun back his gold. She suffered from cancer and, like me, had lost all her patience with doctors and their icky medications. She decided to take an alternative route and she began studying holistic treatments. Fed up with all those mangy side effects from my medications, I asked Felicia if she could help me. She was more than happy to help.  We both needed each other’s company after all we both were suffering from a chronic illness and we started to believe in every miracle cure that was out there. Finally she had stumbled upon what we both figured to be a sure fix for both our illnesses – the alkaline diet. We started eating better and in the beginning my mom supported mine and Felicia’s decision to change our diets and take supplements. She didn’t know that I had stopped taking my medications completely. She was just happy I found someone I could relate to and spend time with.

After a while, I started to feel funny and the people I loved would look at me funny too. I couldn’t figure out what was going on.  I was feeling better, but I didn’t look the way I felt. After multiple disputes, my beloved cousin Latasi put me in her car and took me to St. John’s hospital. I was admitted into the behavioral institute and they taught me that what I had done was irresponsible. I learned the routine of taking my medications daily, I learned to question my doctors responsibly, I learned coping skills for my depression, I learned cognitive thinking skills, and I learned to communicate with my family better. Now, I see a Psych doctor and a therapist for my depression. I thought this illness had defeated me but by the grace of god and my mother and my family who never stopped fighting for me, I stand here today victorious and still fighting. I have a passion for nutrition and well being and thanks to my doctor’s encouragement I will be pursuing that line of work.

I am one who can honestly say that the LFA-Heartland Chapter has been my greatest support system. Attending the north county support groups with Gale has been a blessing. They helped me realize even at our darkest hours there is hope. To the Heartland Chapter I am truely humbled…

hugs & spoons

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“I’m a Lupus Warrior”

2 Aug

ImageMy name is Zoe Jones and I live in Easton, KS. I am 16 years old and I was diagnosed with SLE in 2012. 

Autoimmune diseases have always been a part of my life since 3rd grade. I started out with a bruise on my knee from bumping it on the playground; soon the bruise grew so large that it covered most of my leg. My mom took me to my pediatrician to see if it was anything we should be worried about. My doctor told me to go to Children’s Mercy Hospital that night. After a couple blood tests I was diagnosed with Idiopathic Thrombocytopenic Purpura, (ITP), to this day I still don’t know how to pronounce itIt’s a disease in which your autoimmune system destroys platelets which are very necessary for normal blood clotting. Looking back at how sick I was really chokes me up. In 2007, I had a splenectomy which thankfully cured me from ITP. But just my luck, I was a part of the 7%-30% who develop Lupus several years later.

 I don’t let living with lupus get me down. Some days are rougher than others, but I always remember that someone has it worse than me. That said, lupus is definitely tough to deal with sometimes. From medicine treatments, regular hospital visits, and the constant body aches you need someone there to talk to. When SLE gets to me, I talk to my mom. She always knows what to do to make me forget that I have lupus and that life goes on. I can beat lupus. With help from my doctors, family, and the LFA, I know that everything will be okay if I just keep my head up. Without their help, I would be lost.

This summer, I attended the LFA Heartland Chapter’s Youth Retreat. It was great to meet other girls my age fighting to overcome the challenge of living with lupus. It inspired me to tell the world about our fight, support my new friends living with the disease, and find a cure! Lupus may be a battle, but it’s a battle that we can certainly overcome. I know that we are an inspiration to our families because every day we live with lupus… and every day we don’t let it beat us. 

I’ll be at the Walk to End Lupus Now in Kansas City. I hope I’ll see you there.

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

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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30 Things About My Chronic Illness

14 May

A few weeks ago, we came across a great internet meme used for National Invisible Chronic Illness Week (September 10-16) called “30 Things about My Chronic Illness”. We thought it was a really interesting way to raise awareness of lupus.

Often we hear people with lupus lament that “No one understands what I’m going through!”. Lupus is a chronic illness which is not always visible to the outside world. This can make is challenging for those around us to ‘get it’ when we are struggling with debilitating symptoms. The “30 things” meme offers people a chance to tell their story and help those around them understand.

With the hope of expanding public awareness, Nicole decided to share her “30 Things” with the LFA Heartland Blog:

30 Things About My Chronic Illness:

  1. The illness I live with is: Lupus
  2. I  was diagnosed with it in the year: 2002
  3. But I had symptoms since: 2001
  4. The biggest adjustment I’ve had to make is: Dealing with the unexpected pain
  5. Most people assume: That I am healthy and nothing is wrong with me
  6. The hardest part about mornings are: The joint pain/stiffness
  7.  My favorite medical TV show is: I don’t have one
  8. A gadget I couldn’t live without is: My phone
  9. The hardest part about nights are: The leg pain and having to deal with that at 3 a.m.
  10. Each day I take __ pills & vitamins. 1 pill and 1 vitamin
  11. Regarding alternative treatments: I have not participated in any alternative treatments
  12. If I had to choose between an invisible illness or visible I would choose: Invisible
  13. Regarding working and career: Luckily I have been able to work since my diagnosis. Occasionally there are days when I am tired or have joint pain, but it has not been so severe to affect my career, which I am very grateful for.
  14. People would be surprised to know: That I have been to France 22 times
  15. The hardest thing to accept about my new reality has been: Accepting that I am “sick”
  16. Something I never thought I could do with my illness that I did was: Was live a normal life…for the most part.
  17. The commercials about my illness: Are a reminder of what I have but are important to help the ones who are suffering and to raise awareness
  18. Something I really miss doing since I was diagnosed is: Not worry 24/7.
  19.  It was really hard to have to give up: Freely being in the sun
  20. A new hobby I have taken up since my diagnosis is: Biking
  21.  If I could have one day of feeling normal again I would: Just relax and be thankful for a “normal/healthy” day
  22. My illness has taught me: To appreciate life
  23. Want to know a secret? One thing people say that gets under my skin is: But you don’t look sick
  24. But I love it when people say: You look like you’re doing great
  25. My favorite motto, scripture, quote that gets me through tough times is: “The pain you feel today is the strength you feel tomorrow. For every challenge encountered there is opportunity for growth.” – Unknown
  26. When someone is diagnosed I’d like to tell them: To think positive 
  27. Something that has surprised me about living with an illness is: Seeing the world in a different perspective
  28. The nicest thing someone did for me when I wasn’t feeling well was: Just be there for me and listen
  29. I’m involved with The Lupus Foundation of America Heartland Chapter because: I want to contribute in helping end this cruel mystery!!
  30. The fact that you read this list makes me feel: Like I am doing something to help raise awareness and help you understand more about living with a chronic illness

 

May is Lupus Awareness Month and it is a great time to speak up and share your story. It’s an opportunity to help people understand by telling people about your disease and how it affects you. Help us spread awareness of this cruel and mysterious disease by sharing your “30 things” today! Just send it to us at info@lfaheartland.com

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.

Guest Blogger Shawn Powers Thanks the Supreme Court

28 Jun

Today the Supreme Court ruled on the Affordable Care Act. After months of stress and concern over their decision, I can finally say “thank you” to the Supreme Court of the United States for making a decision that will protect the America’s sick from financial dispair. 

In 2010, the United States passed this health reform in an attempt end its status as the only developed nation with large numbers of uninsured people. In doing so, this bill expanded both the private market and Medicaid. The most controversial portion of the bill was the “individual mandate.” Twenty-six states brought a case against the federal government in an attempt to have this portion of the bill overturned.

I have worried about the fate of this bill. My daughter, Samantha was diagnosed with lupus when she was 9 years old. I worry about her health every day. I stress that I cannot give her everything she needs to manage her disease. In 2010, I was finally able to let one of my big concerns go. When the Affordable Care Act passed, it was decided that insurance companies would not be able to deny coverage based on a pre existing condition. As of now, Sam will be protected until she is 19. However, in 2014 the law holds that she will never be able to be discriminated against by insurance companies on the basis of her illness.  

Many speculated that if the individual mandate were to be overturned, much of the rest of the bill would be ineffective. Furthermore, many in Congress vowed to overturn the remainder of the law.

 I avoid politics for the most part. My support of this law is not based on partisanship. My support is based on my daughter’s survival. I give everything I have to give to ensure her health and safety. Today, the Supreme Court of the United States stood with us. The law has been upheld. In a 5 to 4 decision, the Supreme Court found that the individual mandate was constitutional.

What this decision means for America, is still being flushed out. There is still the possibility that it may be repealed in Congress. But today, I celebrate, because justice has prevailed, and no one will ever be able to tell my daughter that she cannot have insurance because she has lupus.

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Samantha Powers

28 Jun

Samantha Powers

Sam is 11 years old and fighting lupus!

Band Together for Lupus Awareness 2012

1 May

May is Lupus Awareness Month. The LFA is urging everyone to Band Together for Lupus Awareness. See how the LFA is honoring this month here. Below Nicole tells us how she is going to get the word out this May:

Wow! 59 percent is such a high and unfortunate statistic. Not a lot of people know about Lupus or the devastating impact it has not only on the patient but also family, friends and significant others.

This May, Lupus Awareness Month, is a significant month for those affected by Lupus.  This is your chance to do your part, step up and help raise awareness. Bringing awareness and attention to this disease can help overcome so many obstacles – research, early diagnosis, raising funds and educating the public.

Doing the little things like wearing purple on May 18th, sharing a post on your social media page or wearing the purple wristbands, goes a long way. Contributing your efforts in any way is a step forward in helping those affected by Lupus.

This May, wear your purple and share the knowledge so that one day there won’t be a statistic to worry about.