Wednesday, May 9, 2012

May is Lupus Awareness Month! Band Together For Lupus!

Welcome! This week I am going a little off track and sharing something with you my readers, that I have never written about. I have a chronic illness called, Lupus (SLE). I was diagnosed when I was 45 and have been living with its wrath for over 13 years. Yes, it has been really hard dealing with this chronic illness, like a roller coaster ride, pain, lots of pills, doctors, side effects, other medical issues that add to my Lupus, fatigue, tears, and too many more to mention. But even with those issues I look at it as a blessing in some sort of a crazy way. The blessing is that I have learned so much from having this illness such as, life lessons about having patience, being a strong person mentally, have discovered the importance of being optimistic, understanding how people feel with disabilities, knowing and appreciate how important it is to have faith, family and friends, plus being proud of the woman I am despite having Lupus. It isn’t that I didn’t know all this before, but it just seemed different to me now, as I am a person fighting everyday with this illness.

There are two reasons why I am sharing this information and the first is that it is “Lupus Awareness Month, which is observed in May. The other is that I hope sharing my experiences will help others who have Lupus know that they are not alone. May 10th is World Lupus Day, and May 18th is POP day, which stands for “Put On Purple”. The colors of Lupus are Orange and Purple. So, please show solidarity and support by wearing purple or orange in the month of May.

“Lupus Awareness Month,” is observed to increase public understanding of the unpredictable and potentially life-threatening disease that affects an estimated 1.5 million Americans and at least five million people worldwide. Someone in the US is being diagnosed with Lupus every 30 minutes. Lupus is a complex autoimmune disease that causes inflammation and can damage any organ in the body. Many symptoms of Lupus mimic those of other illnesses, which makes it very difficult to diagnose. Everyone who has Lupus can have different symptoms and different problems. No Lupus patient is the same. Researchers do not know the exact cause of Lupus, but it is NOT infectious, NOT cancerous and you CANNOT catch Lupus by coming in contact with someone who has the disease. It is important to emphasize that a complete medical evaluation by your doctor is essential to ensure a proper diagnosis and treatment. I hope that this gives you, my readers some understanding of the illness. We all have illnesses in our families, and try to give to so many different charities, I indeed understand. A new drug that will help Lupus patients just became available after 50 years. So we need more funding and support for awareness. Please, Band Together, so we all can Change Lives and join or give generously to the Lupus Foundation of America.

I remember when I was living in upstate New York, (which is where I was diagnosed), my parents came up to visit me in the summer. My dad had found an article on a website that he thought I may want to check out. The article was about the founder of this new web site called Christine Miserandino has Lupus and is an advocate for people with all kinds of invisible illness. I couldn’t believe it when I visited her site. There were others who had Lupus plus other invisible illness and everyone was finding out information, expressing their feelings, and supporting each other. What a great title to call this website, as that is what everyone was always telling me, “but you don’t look sick” to have Lupus. Christine has hit it on the head, with this web site, where others can find a collection of stories, articles, book information, health resources and it is a very positive place for those who are living with chronic pain. So, needless to say I found a goldmine, I have to say a BIG thank you to my dad who found this article. 

Christine Miserandino you are my hero! Thank you for all you do. She gives inspiration to everyone that comes in contact with her. But when it comes to her “Spoonies” she is like a mother hen. Yes, I did say “spoonie”. I am a “spoonie” and so are over 11,000 other people that have joined Christine and the ButYouDontLookSick family. Christine is the author of "The Spoon Theory"which is a story to explain what life was like living with Lupus, a chronic illness to her friend. She used a “spoon” a normal every day item, so people would understand and be reminded of the small struggles and choices “we” make every day. When you are healthy you do not have to think about every thing you do within a day, such as working, cooking, the walk from your car to the store, or cleaning your house. It is a story about using your energy, choices and consequences, of every day life. The Spoon Theory is like our mantra or the secret society of the invisible illnesses. So that is why I have a spoon on my profile picture on Facebook and on Twitter. It is called a Twibbon to show that I can identify and support “The Spoon Theory”. Christine and the ButYouDontLookSick website has been my go to place where I can network with friends, have a positive attitude, and accomplish my goals.

Thanks for reading my story and I hope this has given you a better understanding of what it is like to have Lupus. “Spoonies” unite and please support our cause.

Come back next week for another recipe and more stories of my Italian family.

Till next Time……..

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