Did I have Lupus as a child?

During the Lupus Star Foundation (Lupus Star Website) peer support group meeting, I mentioned that I might have had lupus long before I was diagnosed.  Throughout my childhood I had several issues that were just kind of brushed aside and not paid much attention to.  For example, as a child I used to have chest pains quite often. The doctors always said it was just a pulled muscle, because of my sports and dance and such. Ummm, maybe it was pleurisy people. Also, I was very active, but when I ran it was quite painful for my ankles and feet.  I just thought I was slow and out of shape.  


When I got a bit older, like high school and my first year of college, I would sometimes have to stop dancing because of exhaustion.  I mean I just could not finish performances sometimes.  I would faint or come really close to it.  This even got me kicked off of the marching band pommerette team.  I would run out of practice because I felt so bad and I couldn't keep up.  I thought I just sucked.  Did I have lupus back then?  I probably did, but the doctors did not catch it.  They always put the symptoms off as something else.  


As an adult something finally brought the disease all the way out. Yeah thanks!! Now that I know all the symptoms and different ways to diagnose lupus, I think that I definitely had the lupus all along.  Lying dormant within this little girl, that had no idea what lupus was. 


It is important to take any change in your health seriously.  It may seem like nothing, but it could be very serious.  You have to take control and understand what is going on with your body. If your chest is hurting, it means that something is wrong.  You need to find out what it is.  It is not normal for you to have pain for months at a time.  Get it checked, and make the doctors figure it out.  Don't just believe what they tell you!!  They are "practicing", they do not know everything.  As my fellow lupus survivor told us "you have to be your own advocate"; he is absolutely right.  Get tested and checked out when your feeling "funny", it could save your life. :0)


With Love,

I Didn't Know She Had Lupus!!

Mercedes Yvette Scelba-Shorte of the second season of America's Next Top Model has lupus.  The 29 year old from New Jersey revealed that she had lupus on ANTM. Now working as a model and actress, Mercedes uses her celebrity to spread lupus awareness.  She was featured twice on the cover of the Lupus Foundation of America's Lupus Now Magazine.  She is a avid spokesperson and advocate of lupus.  
I remember watching the ANTM episode where she revealed that she had lupus.  I felt so sorry for her, but I didn't know much about the illness.  And that next year (2005) I was diagnosed.  Well, I am happy to see that she is thriving as a young talent, and is doing what she can for our cause.  She should be an inspiration to us all.  We can still achieve our dreams even with lupus weighing us down!! You are much more powerful than your illness, never forget that.


With Love,

Shining Bright for Lupus!

     Advocating for Lupus has been a pleasure for me.  Talking to lupus survivors, giving advice, lifting spirits and educating the public feels right to me.  I believe that having lupus has pushed me to do what I am supposed to do .  Though it is a terrible illness, I can now see it as a blessing.  It has brought me to find my passion.  I have always wanted to help, volunteer and have a career that assists the community, but I didn't know exactly know what I wanted to do.  Whether it was help children, work for a nonprofit, join the peace corps, etc.  Now I see that I am supposed to be helping my fellow lupies.  I noticed that when it comes to lupus awareness and helping lupus survivors I will push myself to do what needs to be done.
     When my boyfriend mentioned starting a lupus blog, I ran with it. Even though I am not the best writer and it is not my favorite thing to do; I love writing about lupus and sharing information with those whom are interested.  I just felt like I needed to do more.  He saw how fulfilled I was doing the blog and networking with people, so he mentioned starting a nonprofit.  I had thought about it, but i thought it was above my abilities at this point.  But when he said it, I ran with it.  So I have started Lupus Star Foundation.  We will provide support and services for lupus patients and their families, and eventually I would like to have a wellness center.  The wellness center is our future goal.  But for now, I would like to do whatever I can to assist my lupus butterflies.  

     We have already made it through our first event.  It was very successful!  I had a great time and didn't mind sitting in the heat for 9 hours a day.  I must really love you guys lol.  We had a booth at a fair here in Ypsilanti, MI.  We educated the passers by, collected donations, did face painting for donations, and sold handmade jewelry to raise money.  We still have beautiful bracelets and necklaces if your interested.  

  



     Our focus now is to raise funds in order to start doing events and offering services to lupus patients, as well as spreading awareness.  Some of the services we plan to offer are support groups, wellness days (massages, facials, etc.), emergency financial assistance, seminars, webinars, and many more.  I would like all of you to join the Lupus Star Foundation Website and spread the word.  There are forums there that I would like you all to participate in.  We want our website to become the place where lupus survivors and supporters go to share information, get advice and support, and meet each other.  You are the ones that need to start it off.  I need your support, so help me out guys.  You are my Stars!!  
     If you have any advice or resources that can help me and LSF become more successful please let me know, I would really appreciate it.  And if you know someone that would like to donate to our efforts, it can be done on the left side of the blog through paypal, or by mailing a check or money order (address is on the website).  Thanks guys!! 

My Efforts To Spread Awareness

As you know, May is Lupus Awareness Month.  We all have unique ways to support and spread awareness.  I would like to share my advocacy efforts with you.  Everyday of the month I make sure to wear my purple awareness wristband.  I have also passed out over ten wristbands to friends and family.  I also wear my awareness ribbon dog tag as often as possible.  If you do not have any Lupus gear, get some.  At least get a purple or orange wristband.  I have both!!


What I did:
❃ I went to the Tigers baseball game on Monday May 10th, which was World Lupus Day.  I took my cure Lupus sign and waved it during the game.  I don't think that I got any TV airtime, but at least somebody saw it.  

❃ I attended the Lupus Alliance Health Fair and met other Lupus survivors and supporters.  I even got to meet one of my twitter buddies, who also works for the Alliance.  The Health Fair was informative and resourceful.

❃ I am in graduate school at Eastern Michigan University. I did a Lupus Awareness presentation in class.  I passed out information and discussed some of the key issues with Lupus.  It was surprising to me that a number of students knew someone that has Lupus, but still nobody knew exactly what Lupus is.  

I know I did not reach the entire world, but we have to spread awareness one person at a time.  My blog and social networking also serve as advocacy avenues. You are probably spreading awareness and you don't even know it.  Each person that learns about Lupus makes an impact. 

Simple things that you can do to spread awareness :
~ Wear a Lupus wristband or t-shirt
~ Put a Twibbon on your Facebook or Twitter profile picture
~ Mention Lupus on your social networking sites
~ Explain the illness to people whenever you get a chance
~ Become a member of organizations and use their resources
~ Share your story (email me if you would like to share)


You can make an impact!  Spread Awareness with me!!
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