Greetings Friends! I’ve received several questions about Lupus and figured I’d tackle them here with a little Annie spunk. Like I said in our video, I was diagnosed at the age of 17 after years of chronic illness. Throughout high school I dealt with a serious head injury, vasovagal syncope and what I like to call a “lazy immune system.” Finally, after dealing with an unbearable amount of fatigue and pain, a doctor suggested I visit a rheumatologist, who determined I had Systemic Lupus Erythematosus. Yeah, that’s a mouthful, so just stick to saying Lupus or SLE. Eight years later, I’ve learned to deal with the fatigue, pain, infections that won’t quit and overall annoyance of dealing with chronic illness. I still have bad days (and REALLY bad days), but luckily, with the support of Mas (Tom) and my family, I’ve had the opportunity to create a life where I feel like I hold the reigns over my disease and even managed to backpack around the world. Sure, I took a whole lotta naps and spent quite a few days curled up in a bed at a random European hostel, but still, Lupus won’t stop me from exploring life! I look forward to competing on Today Throws a Wedding and showing what a chick with SLE can do!
More information on Lupus > http://en.wikipedia.org/wiki/Systemic_lupus_erythematosus
Hola me gustó mucho el artículo de éste Blog así que puse, para darlo a conocer, un enlace en mi blog. Yo tengo Lupus desde los 17 años, me atacó las articulaciones (artritis) pero lo peor de todo es que mi hija también lo tiene. El tema principal de mi blog es acerca de Lupus, por medio de él deseo conocer y conectarme con personas que padezcan lo mismo para poder ayudarnos y lograr una mejor calidad de vida para todos.
Posted by: Selva Marina | 02/12/2009 at 11:43 AM
This is to Jane with the son who was diagnosed at 6 years old My name is Gus Notario, I like your son was diagnosed with lupus at a young age (13). I am now 43 years old, have been married for 14 years and have 2 beautiful little girls. I now exactly how your son feels and went through the same exact feelings as your son. I went through treatment for nephritis 10 years ago and now have normal kidney function. I read your comment from the Today Show Race To The Alter site and felt I should reply to your post. Tell your son he is not different, he is special and will be a more compationate and stronger person because of his illness. He may not believe it now, but he will find someone who loves him for who he is not what he has. God Bless Gus Notario P.S. if he ever wants to talk about what he is going through with another guy who understands please tell him to e-mail me any time. anotario@comcast.net
Posted by: Gus Notario | 01/04/2009 at 10:39 PM
ANNIE AND TOM Let me first say Congratulations to both of you TOM AND ANNIE!!!!! I can only wish you the best that life has to offer both of you. God is with you just believe, Annie you can do anything, just enjoy all that you have every day. My daughter has Lupus she has had it since she was 19, she does ok at times but does have alot of surgery due to Lupus. My daughter Christine asked me to read about this special couple,becaus of this brave women, with Lupus is trying to win a wedding!! Annie and Tom I have voted for you if I could vote a million times I would but I can not.. DARN!!! With all my heart, I wish you Annie and Tom the best that life has for both of you. Never give up, enjoy LIFE, most important JUST BELIEVE in GOD, HE will always help you with your illness. I also applaud you for stepping forward to bring forward this disease which not to many people know about, YOU Annie have the strength, and now you have TOM to help you for the rest of YOUR lives! My prayers, and with both of YOU..NOT just today but always. I pray with all my heart that you Annie and Tom win this wedding, but most of all LOVE one another no matter what LOVES overcomes all! I myself have been married for 39years, so keep the faith, you have the strength, just be happy and enjoy LIFE and ONE another. Wishing you the best, take care and God Bless both of you!!!! Smile, Doris
Posted by: Doris | 01/04/2009 at 10:38 PM
I also received an email from LFA about you. You two make a wonderful couple! My husband has been so supportive of me - I don't know what I would do without him! I voted for you on the website and by text. It is so wonderful that you are not allowing lupus to stop you from living your dreams. Having Lupus can make it more challenging to realize your dreams, but as long as you are persistant and don't give up, you can succeed at any dream you have! It has been a challenge in my life - I have good days and bad days, but I NEVER give up on my dreams! I wish you both the best! Juliet
Posted by: Juliet Easton | 01/04/2009 at 10:19 PM
Congratulations Annie & Tom!!!!! I have watched my mom with her Lupus and know what a challenge life can be on a daily basis and I applaud you two! We are all voting and know that you both deserve to win. Thank you for bringing awareness to this disease. Blessings to you both with a BIG TEXAS- "YOU GO GIRL" TAKE CARE!! KATIE
Posted by: Katie-Huntsville Tx. | 01/04/2009 at 10:17 PM
Praise God Annie & Tom that you are a winner already! I was diagnosed in 1998 after 8 yrs of no diagnosis,I have Lupus and Fibromyalgia, so you can imagine the pain and craziness. I am 50 years old now and helping coach a 10yr old girls softball team. It's all about the support as you say, family, friends, church group, an awesome Rheumatologist that I would travel to the ends of the Earth to see, but most of all it takes a wonderful couple like the two of you to bring awareness! Good Luck to you both now and always.Praise God we can go to sites like this to say Thank You too. God Bless you Both! di
Posted by: Diana | 01/04/2009 at 10:13 PM
Annie, I am 27 and have lupus as well. My boyfriend....soon to be fiance any day now....and I have been together 5 years as well and have a similar love story. I so happy for you that you have this blessing in your life as well. Thank you SO much for shedding light and national attention to lupus.....we need it so much! I have all of my lupus group, family, and friends voting for you guys! Good luck. congrats on the engagement.
Posted by: Kelli | 01/04/2009 at 10:13 PM
Hi Annie. Thank you so much for sharing your story. We have a son who was diagnosed with SLE with nephritis at the age of 10. He has struggled to deal with this awful disease for 6 years. He still will not share any information with friends or teachers. Everyone knows that he's been living with lupus for years and realize when he's had to be out of school for long periods that it's the lupus. Yet he refuses to talk about it and has not been able to discuss it even with his best friend. He is so ashamed of being "different" even though at present he looks and feels perfectly healthy. We are hoping that one day he can be open about lupus and fight it aggressively and publicly. It gives me hope from reading your story that one day our son will not let lupus hold him captive in secret and that he will find the perfect girl who will love him and support him just as Tom loves you. Bless you for sharing and I hope that you and Tom win!
Posted by: jane | 01/04/2009 at 10:12 PM
I was just diagnosed with SLE a few days ago, and the first thing I thought was," wow! I am never going to find someone now." I have no idea why I thought that first! lol. I read your story in the SunTimes today and your story was so nice to here I almost cried. I know this sounds cheesy but thank you for the hope and inspiration. I voted for you to win the wedding thing, and got my friends and family to do the same. Us hot, Chicago Lupus girls gotta stick together ;-) GOOD LUCK!
Posted by: Laura | 01/04/2009 at 09:51 PM