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Well, after much anticipation, planning, sending out 6795 emails (or thereabouts), and acutally sitting here at 3 a.m. eating cold leftover pizza (oh, my low carb diet is screaming now)... it's National Invisible Chronic Illness Awareness Week in a matter of hours, depending on when you receive this email. Monday, Sept 10th at 9 a.m. I will be kicking off our first workshop with another special guest, Christine Miserandino, founder of www.butyoudontlooksick.com. My son should be out the door to preschool at 8, but Christine is a brand new mommy, so be sure to cut us a bit of slack if we don't get a full cup of coffee down before sitting down at the computer. ====================================================== But you can also go to the Invisible Illness Web Site at www.invisibleillness.com and look for the big CHAT HERE button and the SCHEDULE buttons and you'll find what you need quickly. To be honest, I've had a blast connecting with so many people out there in internet land who have been writing articles about invisible illness. Who knew it would become such a growing subject and movement? I love, love all those health organization that tell us how to best cope with our illness (and occasionally show despressing slide shows, but hey, no one is perfect.) It's really great to see, however, all of us with different illnesses coming together and learning from each other that illness is just plain old illness! It doesn't really matter who is on more milligrams of sterioids, or how many surgeries you've had in comparsion to others. We're all in this together and whatever is happening under YOUR roof impacts YOUR life. So let's stick by each other through thick and thin - thick and thin waistlines, wallets, and even blood! So, in my researching, here are a few articles I wanted to share with you:
You can download it here or open up the pdf file of it here. I am biased but I think it's the hottest little book for ideas for anyone who is hurting. We all need to have a few fresh things up our sleeve for when someone we love is hurting. Usually we can only think of our favorite mac and cheese dish crushed with potatoe chips and we know if we make it for her, we'll just have to double it and have some ourselves. But we also know full well that our friend will eat the entire dish herself with a spoon and then call and blame us for ruining her diet. So instead of tempting those fat cells to double in size, use this handy little book to gain some creative ideas (like how you can get McDonald's gift certificates and pass it off as a real gift. That falls under the "don't forget the kids" category.) On a personal note, I'd really love to see this book get into thousands (okay, millions--why not?) of hands... and stores I've taken it into, like those cute little teacup/gifty shops where our men say "I'll just wait at Starbucks for you... well, they love it. If you know of a store who may carry it, I can send you a copy to take into them. If you know of a editor of your local Arthritis Foundation chapter who would write a review, I'll send her one. Don't you think women's ministries at church should just pass these out at the beginning of the year to all the women? Okay, enough of my plug. But just so you know, I donate all my book sales (100%) back to the ministry, so I'm not mentioning this for selfish reasons, I just don't want to hear anymore excuses from people saying, "I wanted to help but just... (didn't have time) (couldn't afford a nice gift) (didn't know what to do) (didn't want to bug her). We've got the answers! So! On to more Invisible Illness Week stuff!
Lisa Copen |
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Most of them have an illness. All of them have experience with a loved one or those they serve in their profession with an illness. All of them are passionate about their topic. What more can I say? This week will be packed full of tons of information. Don't forget to go to the schedule area and below the guest's name, if they've created a handout, you can print it off. They are all in pdf format. Here's what you need to know about the workshops:
Look at a sampling of the cool and helpful workshop topics!
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SPONSORS - THEY MADE THIS WEEK POSSIBLE. PLEASE VISIT THEM! |
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Can Illness Be Chic? It can now!
Well, now I know! There are chronic babes like me! And we don't want to use our grandmother's pill box. But where can you find hip, fun, cool accessories to store your pills, needles, and walker baggies (hey, you'll be the only one at the hospital storing your googies in a baggie with a poodle on it!)? Well wonder no more! (I wonder... guys? What do you need? Let us know if you want pill boxes with golf clubs or fly fishing on them. We know you're out there too!) The Chronique Couture website itself is fun to browse, and the artwork is that chic, sassy look that will make you think you're shopping for shoes or even candy. (They do have spa goodies, sleepwear and neck pillows... couldn't find the chocolate though) If you deserve
a treat or you need a gift for someone who struggles with a
chronic illness, this is a great place to shop.
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We can still get them to you before II Week, but the good news is that they DON'T have the date so they are timeless! Plus, the sales of these items help us cover the costs of Invisible Illness week, so we appreciate any help you can offer! Silicone bracelets, sterling silver bracelets, T-shirts, caps, silver awareness pins, stickers, magnets, car static clings and more.
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The American Pain Foundation will formally recognize a volunteer patient advocate with the First Annual Patient Advocate Award at our 10th Anniversary Gala Celebration on October 25, 2007. APF's Pain Community Advisory Council (PCAC) is guiding this selection process. Nominations must be submitted electronically (by email only). Act now as nominations must be received no later than September 20, 2007. |
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WHAT IS WITH THE FAITH ISSUE? |
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See, since most of my relationships with editors and news media has come from doing a Christian ministry for the chronically ill for the past 10 years, it's natural that they are also going to support our efforts with NICIAW. These are the connections I've made. Anyone who wants to help in future years by helping us reach out to the average women's magazine, T.V. programs, radio shows, etc.--we'd love to have you. People often volunteer but rarely follow through and so I am left to do what I can do best and most quickly. So... yes, NICIAW is a secular event, but yes... it's sponsored by a Christian ministry. We do our best to help you be a good advocate for your health, and part of that is steering you clear of New Age faiths and crazy treatments that people want to sell you. And part of that is us educating churches so they will reach out to those with chronic illness and not send them Get Well cards that make them more depressed. We're doing our best to meet the needs we see that we can meet with our resources. I hope some day we'll have a huge grant and you'll see our PSA commercials on television. Until then... I hope you'll stick around! ~Lisa
PS: This is my shameless plug... if you are a Christian...or aren't but are feeling annoyed with God about this whole "illness thing"-- I encourage you to read my book, "Why Can't I Make People Understand? Discovering the Validation Those with Chronic Illness Seek and Why." It just may help!... and 100% of the profits go back to Rest Ministries. I donate my book sales to keep the ministry going, so you'll help us out too! |
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* Invisible Illness week is being promoted by a lot of bloggers and MySpace owners, but unfortunately we aren't able to thank them all - some because of our space limits, some because the sites have some 'rough' languate... but please know how much we appreciate your support for our cause! |
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Sure, the week has started, but we've still got days left to
promote our Below are our press releases, pick 1 or 2 or go for it-- choose 6... and post them. Blog on them, post them on your MySpace bulletins, in forums you think people would be interested, send them to people on your email lists, your illness online "groups..." ANYWHERE! Of course, we never recommend spamming anyone... but please let those who would be interested in knowing the week exists or attending the workshops, be aware of them! Most of the press releases below are with a service "888" and it's easy to "digg" it, delicious it, technorati it... and "rawsugar" it (don't ask.. I don't know.) If you're a computer wiz and this makes any sense to you, just click on the press release and you'll know what to do. Otherwise, just send them around with good old-fashioned email. And when
you click on the press release and see all those little symbols,
look for PRESS RELEASES:
WHAT DO I DO WITH THESE?
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RESOURCES TO HELP |
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Lisa has been blessed to have some interviews on the radio. We'll keep you posted if you want to hear them online.
... and
more are in the works. Lisa typically does Christian radio programs.
If you know someone who has a great show Lisa could contact
please
let her know!
This Opinion Editorial caused quite a stir of nearly 300 comments (some nice, some not so nice) over at Free Republic's web site. Interesting comments, but be careful. You may have to click away like we did before some people's comments get under your skin. But... at least people are talking! >>>Read it! |
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ARTICLE: Invisible Until Yesterday |
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Unfortunately (or fortunately) I read a book by the Christian authors Cloud and Townsend entitled “It’s not my fault”. The premise being that if I would just look my own personal reality square in the face, God would show me choices I had within that reality. As usual I struggled to read the message written for well folks, but it got me to thinking about my two years of home bound lifestyle. So I asked God to show me my choices. How about a scooter I thought? Heck, a scooter would really open up my world again.
So after 3 weeks of research I had learned more than I ever wanted to know about scooters!! Yesterday the day came. They put the lift on the hitch and the scooter on the whole shebang. On the back of my car. My sleek, sexy, wonderful black sporty car that I have cranked rock n’ roll up in, impressing the neighboring cars with real music! I stepped back and looked at this huge hunk of metal and wobbly chair and burst into tears. Why don’t I just hire a plane to travel behind me with a banner proclaiming…. DISABLED!!!
I didn’t know what it would feel like to have a scooter on the back of my car increasing it’s length to the size of a cruise ship. It was all concept until I stood there in tears. Invisible no more.
Would my grandkids still think I was cool and funky? Would they be bored that I now have to take corners at a very sedate speed? Would they be embarrassed at the 300 pounds of medical supplies on the end of my car? Would I be mortified?
Yes. And no. Yes at first. No, as long as I view it as a gift from God that we could even afford such a luxury. No, as long as I add humor, smile and possibly wear purple and red. I know that I may have a very limited time of mobility in my life and deep inside I know this ‘choice’ is from God’s Spirit. My granddaughter wants to help me perk up my new ride. With streamers, bells and horns. I may wait to do that until I can accept this new reality just as it is. Invisible no more. Giving
fulltime attention to her family. The past two years have marked
an aggressive increase in the osteoarthritis affecting her spine,
hips, knee, wrist and elbow. After back surgery it became apparent
that this was the real lifestyle and reality of her life. So
she has taken up Internet sharing on boards and emails and writing. |
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Hi,
friends!
First,
Lastly,
we've been having a few email challenges retrieving all your
form content off our server. It's sitting there and my software
is not collecting it! And I'm trying to decide if I can figure
it out, or it I am going to have to cough up some cash to
hire someone to do it for me... So, in the meantime,. you
may have not received that free excerpt of 
As
my son would say, these guests we have are AWESOME! We are so
excited about the quality of "experts" we have who
have put in a lot of time to prepare these 1-hour workshops
for you. By expert I mean a few "experts" (they have
those extra initials behind their names) AND people who have
just lived the same path you are on! 
think
you can) from a life coach who has learned to live
When
I was diagnosed at 24 with rheumatoid arthritis, I remember
it feeling like no one under 50 had a chronic illness but me.
A woman with gray hair bounded in and sat beside me at a Arthritis
Foundation meeting because "she'd probably have arthritis
someday and just thought it'd be a fun meeting to go to that
night to be prepared." I drove home bawling.
Now
is your chance to recognize
Some
people have said they are frustrated that we have a lot of Christian
content and links. Well, we apologize if it makes you uncomfortable,
but please know you are more than welcome and we're glad you
are! 
click
it and a screen will pop up where you can email the press release
really easily to anyone you want!
I
have proudly worn the white bracelet with the inscription, “Invisible
Illness; Visible Hope” from www.invisibleillness.com for
about two months now. When I had to use my disabled placard,
I parked in fear of the nasty comments folks make to people
who don’t have a leg missing or an oxygen tank. So I would
wave my cane out the open door like a white truce flag…..and
even add a grunt or two as I maneuvered out of the car. Then
I would quickly hobble into the store knowing people were impressed
with my perky entrance ‘in spite of her poor body’.
Are
you part of Facebook? Thanks to a volunteer, we have our
event listed there. 
That's it for
now, folks!
I will write again later this week!
See you in the chatroom!
DID YOU KNOW…
Nearly 1 in 2 Americans live with a chronic condition?
96% of illness is invisible?
75% of marriages end in divorce when illness is present?
79% of suicides have uncontrollable physical pain as a factor?
My illness is invisible. But the pain is real.
Join me in supporting National Invisible Chronic Illness Awareness Week, Sept 10-16. 2007.
Care enough to be Informed. Little things DO make a difference.
http://www.invisibleillness.com====================================
* The above makes a great email signature file.
You are being sent this because you have subscribed to mailings from National Invisible Chronic Illness Awareness Week or its sponsor, Rest Ministries. To unsubscribe from all future Invisible Illness Week mailings send a blank email to lisa@invisibleillness.com with the subject line "unsubscribe-iiweek"
NICIAW, PO Box 502928, San Diego, CA 92150, 858-486-4685, www.invisibleillness.com