Category Archives: Lupus

Lupus Awareness Month Day 2

May is Lupus Awareness Month!

Here is our fact for Day 2: Lupus affects nine times more women than men, and more women of color than white women. African-American and Latina women with no family history of lupus have about a one in 250 chance of developing the disease.

May is #LupusAwarenessMonth

In honor of May being Lupus Awareness Month, I am sharing a fact about lupus every day in May. Please share and raise awareness about lupus and its impact on the lives of millions of people like me, and our families.

Lupus Fact 1: There’s no cure for lupus, so current treatments include a focus on improving quality of life through controlling symptoms and minimizing flare-ups.

Please share! Let’s raise awareness so we may find a cure!

Thank You For Featuring My Story H2W Apparel!

I’ve had a lot of ups and downs on my journey living with (and defying!) lupus, but this is definitely an up! Thank you to H2W Apparel  and Maggie O’Brien for featuring me and most importantly, raising awareness for SLE in the process. Maggie did an amazing job conveying just what I wanted to share (and condensed my ramblings, which must have been a task!) Thanks to H2W Apparel for having a heart for women and being open to listen and tell our stories.

Check out H2W Apparel’s blog HERE and be sure to leave a comment!

Lupus & Autoimmune Support Group

Have lupus or another autoimmune issue? Need a listening ear or just to know someone else might understand what you’re going through? I hope you’ll join us!

https://www.facebook.com/groups/defyinglupussupportgroup

Have Lupus? Speak Up!

We have an amazing opportunity through a Lupus Patient-Focused Drug Development (LPFDD) meeting happening on September 25.

The Lupus and Allied Diseases Association, Lupus Foundation of America and the Lupus Research Alliance​ are joining together to host this meeting which will be driven by people like you and me who have lupus, and also caregivers to individuals with lupus. The meeting will help inform the FDA about what it is like to live with lupus daily, and also what kind of treatments we would like to see in the future. 

Even if you don’t live in the area, you can attend the meeting online to participate. BUT even if you can’t attend, there is a survey for you to fill out. There you can tell your story, voice concerns and give your take on new treatments. This survey will help with the planning of the meeting and also to form a report to the FDA. They are trying to get as many people with lupus as they can to fill this survey out, so please fill it out and share this with your friends and family so they can pass it along.

We are being given a great opportunity to have our voices be heard by the FDA and I hope we blow them away with the response from our community! We need to make noise! There is a critical need for more research, new treatments and ultimately, a cure — and this is one way we can work towards this.

Please fill out the survey and if you are able, attend the meeting (whether in person or online). 

Participate here: https://lupuspfdd.org/participate/

6 Simple Ways to Cope with a Chronic Disease

If you’re dealing with a chronic disease (lupus or otherwise) there are so many things that are out of your control and it can be hard to find anything good.  If you’re dealing with an active flare, or just the normal every day aspects of disease, it can be hard to focus on anything else.  I have found that it is the simple things that keep me going… and happier.

  1. badesalz-1620261_1920Taking a hot soak in the tub with some epsom salts and/or essential oils.  The salt can help with body aches along with the hot water. It also will help to relieve muscle tension.  I throw the oils in just because I like it to smell good too. 🙂
  2. Drinking lots of water.  Seriously. I try to drink at least 80 oz of water a day.  I know it is good for my kidneys (which I try to keep as healthy as possible).  My brain feels clearer.  I feel less hungry (I eat when I’m stressed, bored or sad).  My body craves it! Plus, my skin always looks the best when I’m been drinking my water regularly. It is one GOOD thing I can do for my body no matter what else is going on.
  3. Watching funny videos on YouTube.  I know this is all stupidly simple stuff, but it works! As a mom I end up watching a lot of toddler cartoons and the news during the day, and maybe a show or two at night… but The Walking Dead isn’t exactly funny and gets my adrenaline going too much.  Watching some stupid videos on Youtube helps take my mind off things for awhile, and most of the time I find something funny and I can finally laugh a little bit.
  4. Going to bed early.  Sometimes you just have to.  My body tells me when I need it. By 6 or 7 pm I feel it. That exhaustion that only people with chronic disease can understand.  You don’t even want to eat or brush your teeth, you just want rest.  Let yourself go to bed early. Everything will still be there tomorrow, but you yourself will feel better and can face it all then.
  5. Look up an inspirational quote for how you’re feeling.  When I need some oomph because I am feeling physically or psychologically garbage-like I will do some Googling and find a quote that really speaks to me.  I try to share them with you all too, because from your emails I know a lot of you go through the same things.  I try my best to focus on that quote for the rest of the day.reading-1142801_1920
  6. Curl up in a comfy chair with a blanket and read a book with a cup of tea or coffee. Now, I haven’t had much time to do this lately, but this is absolutely one of my favorite things to do. No matter the time of year or what is going on, this is a surefire way to help me feel more at ease and help me cope with whatever is going on.

So. Very simple things. And this isn’t all of them, but just a few that are easy to accomplish in a day when you don’t feel like you can do much else.  Take care of yourself! Try to do at least one simple thing to bring a little joy and peace to your day.

What are some things YOU do to help yourself?  Please share!