Tag Archives: nicole

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.