ButYouDontLookSick.com magazine is about living life to the fullest with any disability, invisible disease, or chronic pain and features a collection of articles, personal stories, book and product reviews, health resources and an active message board for the disabled, or those living with chronic pain or illness.
In 1990 the Federal Government passed a law called the Americans with Disabilities Act. The Act essentially “forced” any business that dealt with the public, to provide that public access to be able to purchase their product. The understanding of the law is that once you start sell something to the public is means all the public. Common interpretation calls this as being wheel chair accessible, and that’s the most obvious. But the law also provides for people who have challenges walking, talking, and seeing and so on. In short, if the business expects to make money off the public, than it must provide access to all of that public. In general that’s the tone, anything else is an exception and it could be open to future debate and fines.
For special occasions it's nice to open a bottle of wine, sit back with friends, relax and celebrate. The only problem is when you can't open the wine or spill the wine when you pour it, and then can't seem to balance the wine glasses and your plate. Sounds like a mess! Well our friends at Prodyne.com have found us some party solutions once again.
At the time of this writing, it is a few weeks before Thanksgiving in the US. Each day, I must fight an overwhelming array of symptoms caused by Sjogren's syndrome, fibromyalgia, chronic myofascial pain, hypothyroidism, diabetes, celiac disease, gastroparesis and periodic limb movement disorder. I am learning to cope with new medication that is fraught with unpleasant side effects. I am in the midst of the disability application process and have no income. And yet, I know that I am blessed, without question. How can this be?
The Fortune 52 weekly column in The Long Island Press written by Associate Publisher, Beverly Fortune, honors local women who lead multiple lives, making significant and unique contributions in their community or workplace: women from all walks of life. The lives and work of these women who inspire by their example are honored in print and online at www.fortune52.com. Every calendar quarter Beverly hosts an extraordinary, invitation-only networking gathering to celebrate the women of Fortune 52.This newspaper is a very popular regional newspaper and website for Long Island, NY.
I often receive requests to reprint The Spoon Theory in educational material, support group hand-outs, and health related newsletters. Recently, one request really grabbed my attention. A group of friends decided to honor a co-worker, recently diagnosed with cancer, by presenting him with a printed copy of The Spoon Theory, along with an engraved spoon.
Today, I was honored to receive a video of the presentation, and would like to share it with all of you.
We love being connected with our readers! Since we have added those "handy dandy" features at the bottom of every article, we have noticed our readers have shared our articles, posted them on their personal profiles and more. We can not thank you enough for sharing this site with your friends and family. Even though we hope you come to ButYouDontLookSick.com every day for our new articles and tips.. we know there are other places on the web where you guys like to hang out. Social Networking is more and more popular and we like to stay connected! We can use technology as a tool to help each other and build a community.
Every month usually has an "awareness" campaign associated with it. A time of year, when during that month or week that organization combines their efforts to get information out to the public. For example October is Lupus Awareness Month and also Breast Cancer Awareness. You might notice more public service advertisments, or local fundraising walks in your area during these months. I thought it was interesting and important to have 1 list with all the national health awareness months. I have listed what I could find below. It is so important for all patients to support each other.
Long Island Business News Honors Christine Miserandino Donato as a "Heathcare Hero"
Long Island Business News and Hofstra University have recognized Christine Miserandino Donato for her work on ButYouDontLookSick.com and with the Lupus Alliance of America - Long Island/ Queens affiliate.
Unfortunately when you have a child with a chronic illness, you come to think of yourself as some sort of expert on the subject. It's not exactly a specialty that you dreamt of having, but one nonetheless that you take ownership of with some sense of pride.
I am so happy to announce that TEAM CHRISTINE raised $10,145 for the Lupus Walk!!!! Thank you everyone for your donations and support! As, of now we are the top fundraising team for this walk as we have been for many years. What a great legacy and tradition. We still have some checks comin in-- so hopefully we can reach for that $10,000 goal. If not, we are SO proud of how much we raised and our continued positive spirit as a team. We couldn't do it without all of your support and donations!!
Sometimes when it rains, you need to make rainbows!
Unfortunatly, yesterday was a downpour in NY! We worried all week what we were going to do, and hoped the storm would shift. It didn't stop raining. I was just getting over a cold... and as we all know I have lupus. I didn't want to chance getting sick. It was hard to make the "smart and safe" call to not walk since my family has been walking in this event for 15 years. It is hard to be an adult sometimes. So last minute, right before the walk we quickly made phone calls and decided to have an impromptu "Happy Lupus Walk Day" party. We had over 30 people on our team, so we had to make calls, ask other people to make calls, we texted and emailed everyone. Frank I quickly cleaned the house, pulled together some brunch ideas, and the party began at 10am. That is the same time the walk would have started for us. The walk actually did still go on, rain or shine in the park.
This Sunday October 18th is the annual Lupus Walk fundraiser for the Lupus Alliance in my local area. I am a person living with Lupus. My family and I pride ourselves on being one of the top fundraising teams every year. We make phone calls or send email messages to family, friends and co-workers. We even try to “beat” our previous fundraising goals each year.
Don't you wish that you had something witty to say when someone says the inevitable.. But you don't look sick?!
Well now you do, Thanks to our message board members we have a WHOLE list !! Even if you feel you can't really use these answers when people ask, you can most certanly think of them and giggle.
The Miserandino Family has been walking for 14 years in the walk along for Lupus on Long Island. 4 years ago we were happy to add my husband's family (The Donato's) to our efforts. Last year my team raised over $11,000... we want to beat that this year and make this our best year yet! Last year we were honored at the Lupus Gala for our volunteer work with this wonderful organization.
*Christine's friends and family are walking in the annual Lupus Walk again! If you can donate, wonderful. If you can't donate, please pass this email on to others. Word of mouth is worth so much.
Please click this link for more information about Christine and the Lupus Walk.
Many people have asked me why I choose to participate in the Walk Along for Lupus. Of course there are many other things I can be doing with my time on an early Sunday morning. Asking a women who has lupus and arthritis to wake up early and walk is certainly asking for a miracle. This year will be especially hard to get out of the house with my 2 year old daughter. Hasn't anyone ever thought of a sleep athon??
