"Systemic lupus is eight times more common in women than men."
Getting Ready For Put On Purple Friday!
Research shows that most Americans know little or nothing about lupus and its devastating impact on millions of people.
I look forward to joining thousands nationwide for Put On Purple Day on Friday, May 18, 2012.
Thank you to my future father-in-law for helping me get my sticks purpled out! It was an opportunity to bond and spread awareness!
Thank you GingerPixel.com ! That is where I found this great storyboard template.
Here, are a few facts via Lupus.org:
The causes of lupus are unknown; however, scientists believe hormones, genetics (heredity), and environmental factors are involved — more research is needed to better understand the role of these factors in people with lupus.
No two cases of lupus are alike. Symptoms can range from mild to life-threatening including everything from skin rash to severe organ damage.
Early diagnosis is crucial to preventing long-term consequences of the disease. If you notice signs or symptoms of lupus, be sure to engage your doctor and ask questions.
*If you can join in, please don’t hesitate to share with me your POP pics!
Much love,
Marissa
Raise5: Screw Business As Usual. Follow Up
I reached out last month asking you to consider voting for the creative, fundraising, platform known as Raise5. Raise5 was invited to compete in the Virgin Unite’s contest- ‘Screw Business As Usual’.
Guess what? Raise5 won!
Did you take the time to vote for Raise5? I am sending you a virtual High5(deep down I think I have always wanted to say that)!
Be sure to check out the awesome #SBAU Raise5 entry video!
*Heads up vestibular community, video contains rotational movement.
And don’t forget to turn your talents into donations!
Much love,
Marissa
Need a stylish way to carry your medication?
I want you to stop reading this post and go grab your pillbox, pill bag, prescription bottles, ziplock bag, trash bag; you get my drift ! This months May 12-12-12 project member Sara Gorman has come up with a beautiful alternative to clunky, plastic, pill boxes, and bottles.
Many of you, just like I used to be, are beholden to a clunky, plastic pill box to carry your pills. And if you’re not (yet!), you know someone who is. But couldn’t there be a better way to organize and tote pills? At least, a more fashionable way that doesn’t include plastic? Most importantly, couldn’t there be an organizer that doesn’t scream “I’m sick” when you pull it out to use it?
I want you to toss those dingy, boring, pill boxes and containers aside and start rocking a beautiful Pillfold! What’s a Pillfold?
The Pillfold is a fun, fashionable new way to carry your vitamins and medication.
I understand those prescription bottles have pertinent information on them and you are not ready to throw them away. No worries, Sarah offers a Pillpouch.
The Pillpouch makes toting and storing your medicine bottles simple and easy. Featuring six elastic bands and a special-drawstring design, this cute little number is just the thing to keep your prescription bottles organized, stowed, and at the ready.
Did I mention:
5% of every Pillbag sold goes to a Lupus charity. Join our quest to raise $1,000,000!
Let’s support Sara by heading over to her website and support her project: Bringing a dose of style™
Much love,
Marissa
Love Getting Packages In The Mail
Excited to rock my lupus awareness t-shirt and support bracelet!
Lupus fact via Lupus.org :
Lupus can be an expensive disease. The average annual cost to provide healthcare for a person with lupus is $12,643, and rises to nearly $21,000 when lost work productivity is included.
Much love,
Marissa
Did You Know May 10 is World Lupus Day?
Would you have known today is World Lupus Day? I personally admit I had no idea there was a World Lupus Day before the 12-12-12 project. My introduction to lupus presented itself in my teenage years. My mom and I were sorting through old photos and a picture of her best friend sparked a memory. It was then she shared that one of her best friends died from lupus. I immediately connected the word lupus to death.
The word lupus once again entered consciousness when my doctor suggested having me tested for the disease. I immediately was reminded of my moms best friend and I became scared. The initial test came back false-positive.
While most people with lupus test positive for ANA, medical conditions such as infections, other autoimmune diseases and false positives can also produce a positive test result. For this reason, your doctor may order some other blood tests to correctly diagnose SLE.
I was tested again and cleared. Lupus became a subject I did not think about again until the 12-12-12 project. When I went through a list of conditions I knew I had to explore lupus. I wanted to make sure I educated myself on a condition that had taken one of my mom’s best friends and became a personal concern.
With that said, I believe it’s important for me to alert everyone I encounter that Today Is World Lupus Day! I encourage you to click the image below and sign the awareness pledge.
Please check out this beautiful video narrated by Julian Lennon as he talks about the legacy of his friend Lucy.
Much love,
Marissa
Vestibular Health Tip: Ice Pack
Dizziness, nausea, head fog, headache, are just some of the symptoms I battle daily. For many vestibular disorder sufferers, these symptoms are accepted as part of our normal daily experience. My vestibular rehabilitation therapist (VRT) has introduced me to cold packs. When my symptoms become unbearable during therapy exercises, we break and apply an ice pack to the back of my neck. We wait for the symptoms to subside and then we resume the exercise. The ice pack has a calming effect. It gives me a sense of control. It is an opportunity to regroup and a reminder to not continue to push myself beyond limits. It allows me to take the time I need and then resume activity.
My VRT therapist has encouraged me to use the ice pack as part of my daily regimen. I picked up this Bed Buddy hot/cold pack at the local drug store.
Advantages:
It works!
It’s reusable.
The material is soft and not irritating on the skin.
Disadvantages:
Doesn’t stay cold very long.
It’s a bit heavy.
Please share the cold pack that is getting you through! I would love to check out your suggestions.
p.s. If you have any hair conditioner recommendations, please add them to the comments below!:) My hair is crazy these days.
* Note: I am not advocating ice pack use for every vestibular patient. Please consult with your doctor or VRT specialist and see if an ice pack would help with your current treatment and symptom reduction plan.
Much love,
Marissa
Finally Turning On Life’s Joyful Flashlight
These last 7 years of vestibular(balance) chaos has led me into deep, dark, corners. I don’t often get opportunities to relish in joy.
Yesterday seeing the article that Blake Watson and myself coauthored for Disability Horizons, left me cloaked in joy! I was beaming yesterday.
I want to experience more days like this! I need to experience more days like this. This condition has no problem leading me down a dark path. I realize I will have no problem finding my way out of darkness with the help of life’s joyful flashlight.
Much love,
Marissa
6 Important Facts About Lupus
It is estimated that 1.5 million American’s are living with Lupus. According to the Mayo Clinic:
Lupus is a chronic inflammatory disease that occurs when your body’s immune system attacks your own tissues and organs.
This month’s 12-12-12 project features an awesome woman, Sara Gorman, living with Systemic Lupus. I have been following Lupus.org like a hawk, educating myself on the condition. I appreciate the daily important facts about lupus. Here are the facts shared the last 6 days!
May 1: Lupus is an unpredictable and complex autoimmune disease that causes inflammation and can damage any organ in the body with life-threatening consequences.
May 2: Ninety percent of the people who develop lupus are female. Males also can develop lupus and their disease can be more severe in some organs.
May 3: Lupus develops most often between ages 15 and 44. However, between 10 and 20 percent of cases develop during childhood and these cases can evolve more rapidly into serious health complications.
May 4: In lupus, something goes wrong with the immune system, which is the part of the body that fights off viruses, bacteria, and germs. The result is the production of autoantibodies that causes inflammation.
May 5: Some people have genes that allow them to develop lupus. Factors that may trigger lupus in these people include infections, ultraviolet light, extreme stress, certain prescription drugs, and certain hormones.
May 6: Many symptoms of lupus mimic those of other illnesses, and symptoms can come and go over time, which makes diagnosis more difficult. Consequently, lupus can take three to five years or more to diagnose.
Much love,
Marissa
I Will Email You For The Next 30 Days An Inspirational Quote
What motivates you to get through your day? Desiring a bit of inspirational motivation? I am offering a service donation for $5.oo through Raise5.com. I will email you for the next 30 days an inspirational quote from varied sources. (click image below)
The service donation will go to a wonderful organization: AboutFace
Get Involved:
Support causes with your skills and talents
Check out Raise5 and see how your talents can turn into donations for a charity or non-profit!
Much love,
Marissa
April 12-12-12 Project: The Lesson
Can you image living with an undiagnosed condition for 24 years. Believing that you may be going mad and that the symptoms you have been carrying have been dismissed time and again. April’s 12-12-12 project member Rhiann Johns has been living that exact health story.
I was blessed to have an opportunity to interview Rhiann and her wonderful mother Hilary. Important lessons have been revealed along this interesting journey.
Mother does know best. I suppose I picked out things early on, nagging at the back of my mind, when she was born. I should have listened more. As I said, mother does know best.
Trust in your instincts and our own bodies. I think we all know when there’s something going on with our bodies. Be more assertive with doctors. Push more for being referred to testing and for getting a diagnosis.
Thank you Rhiann and Hilary for opening up and giving us lessons that will plant seeds and help us all continue to grow.
Much love,
Marissa