30-Second Click Could Make a Difference for Invisible Illness Awareness
Greetings! I rarely send out messages like this but thought you may want to have some influence in helping me gain exposure for National Invisible Chronic Illness Awareness Week. I have been nominated as a “Woman’s Health Hero” sponsored by Our Bodies, Ourselves. Could you take 30 seconds to “vote” for me?
The deadline is this week! Click here
http://ow.ly/54yt
and the scroll down after the kind nomination Kara wrote for me and then just click on the “stars.” I feel SILLY asking this favor… but the exposure for Rest Ministries and Invisible Illness Awareness Week through this venue would be wonderful! Comments aren’t required. Thank you in advance and thanks to those of you who have already graciously voted!
Lisa Copen
Read Full Post | Make a Comment ( None so far )New Logo and Twitter for II Week
We have our new 2009 logo up and I will be updating the web site soon. I have also set up a Twitter accout for all things related to Invisible Illness Week at http://www.twitter.com/invisibleillwk – be sure to sign up there to “follow” us and give your input, ideas, etc.
If you don’t receive these blog updates by email, now is the time to sign up for those too at the top of the page.
We have lots of exciting things coming and don’t want you to miss out on any of them!
Lisa
Read Full Post | Make a Comment ( 4 so far )Christians with Illness Blog Carnival Seeking Submissions
Please pass this announcement on to anyone who would be interested!
Christians with Illness Blog Carnival Seeking Submissions
MARCH 2009– Surprise! That is the theme for the first Christians with Chronic Illness Blog Carnival starting in April 2009. The carnival, hosted by Rest Ministries, the largest Christian organization in the USA, hopes to reach the thousands of people who live with chronic illness or pain, and who also rely on their faith to get them through the difficult moments.
Rest Ministries, Inc. began in 1997 when founder Lisa Copen, then 29, was unable to find Christian support for her illness, rheumatoid arthritis. Her ministry now reaches over 80,000 visitors per month through daily devotionals, a social network, HopeKeepers Magazine, and HopeKeepers groups in churches around the USA and beyond.
Copen explains, “There are some amazingly gifted writers on the internet who share about the ups and downs of living with chronic or invisible illness and also their faith. As the number of bloggers increases exponentially each month, we want to provide a place where those who are blogging about their faith and their illness can share their message with more people.”
Submit your blog posting at www.christianswithillnessblogcarnivalsubmit.com by April 5, 2009. The carnival will be posted the 15th of each month. Upcoming theme include coping with loss and creative ideas for keeping kids busy during summer months when you have limited energy.
This is a great opportunity for Christian authors who have an illness and blog to share their posts too. Rest Ministries encourages anyone to submit. Preference will be given to those who submit blog posts on the theme, and to those with an illness or who is a caregiver.
“Oftentimes we are most encouraged by others who have walked a similar path,” says Copen. “We want to discover how they are still able to celebrate their lives and find a purpose in their pain.”
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Read Full Post | Make a Comment ( 1 so far )Got Illness? Got Music? Listen Up!
We recently discovered Christian artist Natalie Grant has a new single out called “Our Hope Endures.” And it’s about someone with an illness! Well, Hope Endures happens to be the name of our new radio podcast – and I named it over two years ago. Ironic, huh? Or a God-thing.
You can even write to Natalie personally on her blog and let her know what the song means to you.
So I put together a playlist with this song and 20 others that will encourage you and give you something to listen to when you are browsing around the internet. Click here for the playlist on our Hope Endures web site.
Last year we asked you what songs you liked to listen to that perked you up when your illness was getting you down. Thanks for your suggestions! We searched for many of them and some did in fact end up in our playlist.
If you think of more, leave your comments below and we’ll put together another playlist in honor of Invisible Illness Week 2009.
Lisa
Read Full Post | Make a Comment ( 4 so far )New book by II Week Speaker
Jacqueline L. Jones was one of our special guests during National Invisible Chronic Illness Awareness Week. She has a new book out that we are happy to share with you.
Stricken with disabling pain and fatigue, which interrupted a promising career as a journalist, Jacqueline L. Jones spent more than 20 years searching for the answers she needed to survive. This determination led her to more than 15 years of extensive research and to improved health.
To learn more or to purchase the book, visit
http://jacquelineljones.com
. You can also listen to her seminar, titled “Secrets of Paying for Medical Care,” at
http://www.blogtalkradio.com/invisibleillnessconf/2008/09/09/Secrets-of-Paying-for-Medical-Care
.
Thanks for the Prayers While I was in the Hospital
Hi, friends,
Thank you so much for the many prayers that have been offered up on my behalf.
As many of you know I have rheumatoid arthritis and fibromyalgia and was due to have hand surgery before a tendon ruptured in September. Instead, in late September, I ended up with a bad case of cellulites on my ankle that abscessed to a staph infection, surgery was postponed. And due to all of this, I’ve been off my main arthritis drug, Humera, since August (it’s one of those where the commercials say, “fatalities have occurred.”)
I’d been going to wound care weekly and any further infection was ruled out with MRIs and x-rays, but the hole in my ankle still wouldn’t heal. They basically said it would be VERY slow since I was on steroids. But then last week, a day after my regular appointment at wound care, it started itching and getting red. I knew by that night it was infected again, spent most of the night up and then called wound care first thing in the morning. By the time I got to my 1 pm appointment, the redness had swelled almost to my knee and around my whole ankle. It was completely infected again and they put me in the hospital Wednesday.
I had another MRI, another x-ray, etc. and by Friday my night they got the culture back just before my third antibiotic was started and the wound was diagnosed as being Strep A. – a.k.a. the “flesh-eating-virus.” SCARY!
I have to say I am grateful now I did not have internet access because what I’ve read about this toxic infection and how easy it is to lose a limb over it, I’m glad I didn’t know that at the time.
After 7 days, I came home Tuesday, Nov. 11th and have 3 weeks of IV antibiotics. I carry my pack around which is kind of a pain since the arthritis is flaring so badly and now I have 3 more pounds to lug around and sleep with at night, but whatever it takes to get better! The “PICC” line isn’t really fun (as many of you know!) and my “computer” unit that runs the IV has had multiple errors each day. We’ve spent 2-3 hours per day with Home Health helping us try to figure out what it wrong with it. My husband has been a lifesaver doing it all for me, but he’s feeling a bit stressed.
I’ve basically been fielding calls from doctors, home health, pharmacies, and a few friends since I got home. “Wound care” at home fell through the cracks so it took a lot of calls to remind them I needed a basic lesson in treating it correctly. Don’t you love all that red tape? We just hold the phone and it rings…
If you have emailed me and I’ve not responded, know that I’ve read just about all the emails and how much I appreciate the encouragement. If you emailed about a more pertinent matter, I am answering them ASAP.
I knew God was going to work on me and the issue of control/surrender this autumn when my much-needed surgery was put off, but I am beginning to realize He had a bigger project in mind than I knew!
My mom is here now, dad drives down from Oregon next week to join her and “stay until I am well.” and through the holidays. My son, Josh, 5, is handling it all pretty well, but made his 2nd trip to the principle’s office last week for “hitting.” It was the 2nd time, and both times were directly following my infections and all the ER visits/hospital trips, so please keep my family in your prayers too. As a mom it’s an area I don’t have control over and it makes me sad I can’t completely assure him. Frankly, we have all felt like hitting something or kicking the last few days, so who can blame a 5-year-old who decided to follow up on his instincts?
This was my first visit overnight in a hospital (we adopted our son, so I didn’t even have maternity ward experience), so I guess in a weird way I made the most of it. I’ve learned a lot from all of you. I got to wear my own jimmies, I had my own pillows! And I tried to spread a bit of cheer into the lives of all the nurses and doctors who came to my room.
I shared some copies of my book “Beyond Casseroles,” magazines, etc. and told everyone my strength came from the prayers that were being offered up on my behalf. I ask that you pray that those who do not know Christ will somehow remember the gal in room 414 who tried to keep a smile on her face despite wherever they stuck her or the news they gave her. We never know what is going on in someone’s life and I hope I encouraged someone. I say that not to brag about myself, but because I only recognized how important that was based on all the stories you have shared with me over the years about how you have done that very thing. I tried to live up to the standards you have set to gracefully say, “Thy will be done.”
I don’t know what the coming weeks hold. Orders placed at Rest Ministries are still being shipped. My whole family is either taking care of me (or my arm with the medication) or my ministry. I have my first visit back at wound care Monday. I pray 3 weeks of medications will clear this up, but I anticipate the wound likely won’t heal for 2-3 months based on what they told me.
I’m a bit scared and having no clue about when I will really be “out of the woods” but I know God is in control and for some reason, this is the current journey he’s taken me on.
I know this was a lot of personal information, when I typically send out the ezine HopeNotes. I will try to get it back next week. Thanks for being with me on this journey!
Much love and thanksgiving,
Lisa Copen
Founder and Director, Rest Ministries
www.restministries.org
Invisible Illness Week Seminars on Itunes
Visit ITunes and download the seminars for free at this web site http://www.apple.com/search/ipoditunes/?q=invisible+illness .
Now you can listen to them on your MP3 player, ipod, etc. Great while going for a walk or when you are stuck in bed. We do realize it’s missing the opening show and we’re trying to get that fixed.
Read Full Post | Make a Comment ( None so far )Fireproof Movie is a Must-See Film for the Chronically Ill
Here is a scary statistic: approximately 75% of marriages, where at least one persona has a chronic illness, end in divorce. With only one in four couples being able to have both partners keep the sacred covenant of “in sickness and in health” what can you do to increase your chances of not just having a marriage that survives, but one that is also a joyful union?
I recently had the opportunity to preview the movie, “Fireproof,” in theaters September 26, 2008.
Actor Kirk Cameron plays a fire chief and a man who is well-respected by those in his community. But his marriage is nearing the end. It’s not because of an affair with another person, or some dramatic event that takes place; but rather because, day by day, both spouses take one another a little more for granted and move away from each other than toward each other. Both are searching for validation of their emotions and even simple appreciation.
Here are 8 reasons I believe every married couple who copes with chronic illness should see this movie:
- The dialogue is real, as if the writers were hiding behind the furniture of living rooms around the world and eves-dropping on actual conversations, arguments and threats. Let’s face it… real fights are most often about who has done the dishes. You won’t find the typical Hollywood lingo in this film like, “You had me at hello.”
- The burden of care-giving is addressed. The “wife” in the relationship has a mother who has recently had a stroke. The expense of the medical equipment she needs, like a wheelchair and a bed, is shown in this film, something nearly always overlooked in your typical movie. Though this situation may be dissimilar to yours, it’s helpful to see illness and its impact on a marriage acknowledged as a stressor in a marriage relationship.
- It will make you laugh. Just because the emotions run deep enough to bring on many tears in this movie, doesn’t mean you won’t find yourself laughing through those tears at times. Even if your marriage is “perfect” and you think you don’t need a boost, it’s a move night to share with your spouse just for fun. The firehouse crew is and the little things the actors do, where you see yourself, will bring smiles to your face.
- It tells both sides of the story. Whether you are the spouse who is trying to make your marriage work, or the one who just wants out, you’ll find many of your emotions and fears represented. Though the husband in this film is made out in some cases to have been the one with some “problems” the wife isn’t without room for improvement in how she treats her husband either. A surprise twist at the end will leave you with a reminder that no one is perfect, regardless of how they may appear to be.
- It’s packed with real life scenarios, including those of a fireman. This isn’t a cheap flick with a strong message, but a strong film that happens to have a solid message. If you love those “edge of your seat” movie scenes when you are eating popcorn as fast as you can get your hand to your mouth, you won’t be disappointed. If you’re a woman, you can rest easy that there is plenty of “guy stuff” in this movie that won’t make your man feel like he’s at a chick flick.
- Kirk Cameron yells. Okay, maybe not one of the top reasons to see this film, but watching him lose his temper and kick a trash can may just leave the men (or women) in the audience feeling like they aren’t being judged of silly behavior or lost tempers. Most of us have had a situation where we’ve wanted to please our spouse and their response made us want to go kick something, right?
It provides a tool to take along. The book “The Love Dare,” which the actor works through to win his wife’s heart back, may seem more like a way for the movie makers to make an extra buck. It’s not. In fact, all actors worked for free. The book is rather a way that you can take something tangible away from the film and literally start applying it to your own marriage. As my mom and I left the theater the guys beside us exchanged words. “I guess I have to go order my wife some flowers now… but it’s going to cost me a fortune!” “Hey, weren’t you listening. It doesn’t matter how much they cost.” The great thing is, if you’re on a budget, expensive flowers aren’t required; it’s the actions.
If I was a Christian counselor I would hand couples the DVD (when available) and tell them to go watch it together before our first appointment.
A nice plus is the “behind the scenes” honor that actor Kirk Cameron gives his wife by keeping his own promises: he vowed to her (despite being an actor) to never kiss another woman. So his wife was flown in for the kiss at the end of the film, where she stood in for the actress. He’s been married seventeen years, is the father of six children, and a strong believer in Christ who is not ashamed to proclaim it. That makes me want to listen up to what he has to say. He’s made the rounds this week as the film is about to release, on the Today Show, Dr Phil (9/25/08) and many more and he has done well. Despite some over-eager or even rude (names not mentioned) interviewers, he has represented Christ well. He’s come a long way from the posters on my little sister’s wall!
And on a side note, you may be interested to know he founded a camp over twenty years ago, Camp Firefly, for chronically ill children and their families. (Go, Kirk!)
As the founder of Rest Ministries which serves those who live with chronic illness, I firmly stand behind this movie as being one of the best to impact a marriage. It may be the two best hours you give your marriage since the day of your vows.
Update from Lisa
Instead of having surgery in 2 hours on my right hand I am sitting up on the computer, working on getting HopeNotes, our weekly ezine out.Surgery had been postponed. And I am bummed.
The edema I suffered with in my right foot the week of II week turned into cellulitis on Sunday, with a trip to the emergency room, and then another one to the doctor today since it’s absessed.
Isn’t life unpredictable?
So… for the moment I am glad my right arm is not in a cast, but I have been a “patient in pain” for the last few days, barely able to walk, etc. and surgery hasn’t even occurred yet.
Why do I want to have surgery? Well, for one, I was all mentally prepared. I had the next 3 weeks crossed off on my computer.
Plus, the surgeon also expressed his concern that my hand did need taken care of soon before a major tendon ruptured (My right wrist bone is pretty big and sawing down the few tendons I have left in that hand). I can’t pick up a mug of coffee, put on shoes, turn the steering wheel, nothing, without it clicking and being in pain.
But, being a patient on auto-immune suppressant medications… and now an infection… there is no way surgery can happen right now.
Most healthy people may think, “Oh, no big deal; so you have to reschedule.” But it you are like me, you know the recovery period is much longer than typical for any surgery when you deal with illness. I also will have a cast that goes about my (bent) elbow on a shoulder that needs joint replacements. So my mom had flown down from Oregon for 2 1/2 weeks to help pick my son up from school, entertain him, take care of me, etc. It just throws everything off, ya know?
Who wants to do rehab during the Christmas season?
I know God has re-arranged all of this for some reason, but He didn’t consult me on the convenience factor. I had a good plan! And am a bit whiny about it (can you tell?)
Anyway, for those of you who had been praying for me, etc. thank you! Keep them up, because I still need them. I’m wiped out and the infection and not being able to walk much is just draining. I’m up working because I am trying to distract myself from the feeling of needles poking my ankle and foot.
I will be doing some postings soon here, but in the mean time, if you want to know what’s going on over at Rest Ministries (and we have lots of interesting little news bits, even if you aren’t a believer, so don’t let that scare ya away) you can sign up by clicking here hopenotes@getresponse.com . I should have the next HopeNotes out in a few hours… or sometime Wednesday, depending on when the body gives out.
Love ya,
Lis~
Read Full Post | Make a Comment ( 5 so far )Invisible Illness Week Updates
Well… how are you? I’m still a bit wiped out after last week! Or maybe it’s the fact that I am turning 40 this week. Or maybe because of my chronic illness? Who knows! Can you relate?
It was an amazing week… because of you! Thanks to each of you who posted a blog, told people you know, handed cards to clerks at the grocery store, left them in waiting rooms, wore your tshirts or carried your tote bags, clipped on an awareness pin, told your pastor about the week, told a friend, emailed a friend or loved on the link to a program you thought s/he would enjoy; thanks to the people who called in during our shows, who got someone to help them figure out how to listen to the shows, who wrote and encouraged us and told us we were making a difference.
WOW! That list could go on and on… and it will soon as I want to share what some of you have told me you did! Stay tuned!
But first I wanted to update you on a few things.
1) I am just about 1/2 done with awarding prizes. Some have shipped today, some tomorrow and the rest throughout next week. Thanks again to all our donors. You can scan the page to see if you’ve won something “so far” here. We are posting first names, initial of last name and city/state to maintain your privacy.
2) Our seminars have had an average of about 500 listeners each so thank you for spreading the word. Remember that you can still share these, forward them on to a friend, and even put the coding up on your own web site. (We’ll have instructions on exactly how to do that soon.) The web site for all the programs is
http://www.blogtalkradio.com/invisibleillnessconf
As soon as we get the email from itunes we will post here to let you know it’s available in the Apple (R) itunes store as a free podcast download. You can get the WHOLE week on your ipod! What a great way to be inspired while you are bedridden or walking around the block to get some exercise!
3) We had some wonderful guest blogs and they are still coming in. Our hope is that we can continue to post about 1 per week and also keep you in touch with different invisible illness issues in the press, etc. If you read something (like a disturbing Dear Abbey letter) or see a show about handicapped parking, etc. bring it to our attention and we’ll consider writing about it or sharing it with others!
4) It’s been so fun to read the blogs you all have been posting THIS week about Invsible Illness week impacted you. The stories are amazing. Keep sending them or posting your comments here. They all encouarage other people too! I’ll try to get another blog roll up in the next few days if I can. Speaking of which the How To Cope with Pain blog asked what you learned during II Week and I’m the only comment she has received! I know you have emailed me but scoot on over to this blog and post a comment and be sure to read her other stuff too! Wonderful–you’ll want to bookmark it!
5) I am having hand surgery the 24th of Sept. I have x-rays the 18th to decide if I really should do the left hand or if the right hand, which has been bothering me more lately, should be done. My heart says, “The left will be so much easier…” My head says, “Be practical and realistic and do the right.” We’ll see what the surgeon says but I’m sorta freaking out about losing the abilities in my right hand to type easily and work the mouse for a month. Please send up a prayer for easy recovering, less pain and maybe…. perhaps… no joint replacements. So know that though I may be “quiet” the next month, my heart is still here and I may just be telling other people what to type for me!
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