It’s going to be a great year! We have some nice suprises, give aways, we’re working on seminars now and we hope you will join us!

Click here to update your email subscription to II Week Updates directly

Click here to go to the web site

So if you tweet, and tweet anything about Invisible Illness Week, include #invisibleillnesswk09 in your post and we will build the number of people who are able to locate information about it online. We like the fact that is spells out “Invisible Illness” but if you find it is cutting into your 140 character limit too often you can also use #iiwk09.
Here is a great explanation from Social Fishing:

A  hashtag (the pound sign # placed in front of a keyword) enables all tweets about that keyword to be found in Twitter search and creates a hyperlink within a single tweet to that search.

Why is that “required”? So you can find all the stuff people are talking about around that subject, regardless of whether you follow those people talking about it or not. For any time-specific event, a hashtag for that event allows you to round up all the tweets around it – which leads to lots of other cool things like being able to find all the other Twitter users who were part of that event (or just interested in it) and, then you can follow them. Newbie twitterers who try it out during a conference can immediately find a bunch of people to connect to. Advanced Tweeps can expand their network. Organizations can find out all the people who were participating in their conferences.

You might ask, well how do people know what the hashtag is for a particular conference? What if people use several? I would say it’s in the organizers’ interest to publicize early and often what the hashtag will be. Just pick one, make it as short as possible (easier for people to use and won’t cut too much into the 140 character limit), make it unique so there’s less chance of it being used with something unrelated, and tell people about it.

If this makes no sense to you you are not alone. Just ignore it. It’s okay!

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

http://www.restministries.org

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

You aren’t alone!

Writing from firsthand experience, Allison
Bottke identifies the lies that kept her, and ultimately her adult son in bondage-and how she overcame them. Allison has been a friend of mine
for years and she truly opens her hear t and will share her story with you tomorrow, Tuesday April 6th at 10 a.m. pacific at www.blogtalkradio.com/hopeendures.

Please share this with your friends, family, friends on Facebook, etc. I know that many moms and dads out there will be blessed.

VIDEOS: Watch these GREAT videos about the steps to ‘SANITY’ – they may seem awfully familiar! Real life stories from other parents are woven through the text of the book.

Most important… six concrete steps to hope and healing are the key elements
of this landmark book, Setting Boundaries with Your Adult Children.

Addressing a worldwide epidemic, this important and compassionate new book from the creator
of the successful God Allows U-Turns series will help parents and grandparents of the countless adult children who continue to make life painful for their loved ones.

A frequent guest on radio and TV programs around the country, the 700 Club featured her life story in what has become one of their highest rated programs ever (link below). She was recently on Dr. James Dobson’s Focus on the Family program. You can listen to it here.

With 23 non-fiction and fiction books published since 2001, Allison speaks and teaches at conferences around the country. Her column for baby boomer women, Boomer Babes Rock! appears monthly in Christian Women Online (CWO).

Watch Allison’s amazing testimony here as featured on the 700 Club. (Scroll down when you get to the page)

I hope you will join us!

Lisa

The truth of the situation is that I have been off of my main medication for rheumatoid arthritis since August 2008. I’ve never been off of this classification of medication since I began it about eight years ago. I had to go off of it due to an infection last fall, and between my high risk for infection and need to have hand surgery I’ve not been able to take it (And I haven’t been able to have surgery due to edema, etc.)

The result is that every day gets worse. Literally. That’s not being pessimistic, it is just my reality right now. My rheumatologist has put me on a medication that people took for RA 60 years ago so I could feel like I was “doing something.” But it’s one of those medications that takes months to kick in, and it’s also raising my danger zone for my liver, so I don’t know how long I can keep taking it. Monthly lab tests will tell.

So I am on about 20 different medications from anti-inflammatories to pain killers, steroids to medications to try to help me sleep, control blood pressure, etc.

If that is the situation, what is my reaction?

Last week was a bad week physically–the worst it had been up until that point. I moaned about it a bit. I’m sick of it!

My Twitters and Facebook postings had people writing me back saying, “Praying for you.” “Hope you feel better soon.” I appreciated it. I explained to my husband one night I didn’t think he realized just how bad each day had been and he listened patiently with sympathy.

But this week he has had to work 15-hour-days every day on a project that is due. We are so blessed that he has a job (and hence, my health insurance) that I can’t and won’t complain for a moment about that. But has it been harder being on my own each day, all day and evening with just me and Josh? Sure. I’ve gotten Josh to bed an hour earlier each night by 8:15 or so and I’ve quickly followed, asleep by 9 p.m.

I haven’t even wanted to post “updates” this week, because I’m even sick of hearing myself whine. But my knees haven’t been able to unbend for days. I walk hunched over and hold onto walls, furniture and cars. I’ve tried to not give into it and still make it a fun week for Josh. We’ve made cookies, played Play Doh, watched a movie, gone to McDonald’s, karate, and hav had 3 play dates. Tonight is the Variety Show at his school and we’re attending. I’ve pushed through and have made it.

So why do I feel a sting when people write kind comments to me that say, “I see you’re posting on the list so you must be feeling all better! I’m so glad!” or “Are you feeling better this week?”

I want to say “No! I am NOT feeling better! I won’t feel better! Every week is going to get worse until I am healed up from a surgery that isn’t even scheduled yet.”

Yes, I am posting to some lists. I am trying to work to keep my mind off of things and then other times I am too exhausted to think straight and I just walk away from the computer. But I feel awful.

I feel badly I’ve not answered people who have kindly asked if I am better? I don’t want to say, “No, and I won’t, thanks, for awhile.” I don’t feel like being cheerful and saying, “I am hanging in there.” I don’t know how to be honest.

When my friend called and asked how I was I said, “Uh… I’m doing okay.” She said, “Just okay?” and I said, “Well, I know I’m sick of saying I’m not doing great and you’re probably sick of hearing it, so I don’t know… Lately I’ve been stealing my friend Pam Farrell’s saying… ‘I’m choosing joy!’”

Something as simple as “how are you?” shouldn’t caused such mixed emotions, right? After 15 years of chronic illness, I should be past it causing any emotions at all. But even as I write emails to people who I know are chronically ill I hesitate as to what to say. Do I say, “I hope you are feeling better”? Or do I say, “Unless you let me know otherwise, I’ll assume you are still having a lot of pain”?

We have a 50% chance of getting it right. When we are right, the person in pain gets a moment of “ahhh” –like getting into a hot tub. The sting of pain is taken away for just a few minutes. When we get it wrong, it’s a sting that is more like wading into the cold ocean waters.

What are your feelings? Experiences? While I am waiting I guess I will go update my Twitter. I’m still deciding to be honest (and boring) or “joyful” and upbeat.

Tuesday, March 17^th Oprah’s show will feature an interview with Montel Williams about living with chronic illness and they will be joined by the well-known physician Dr. Oz. This is not an endorsement of any kind for Oprah or her television show, but I am eager to see what this episode reveals regarding living with illness, and am glad to see an illness that is invisible being represented too. The preview also shows it will feature Scott Hamilton and Fran Drescher.

You can comment on the program now, or after it shows at her forum at Oprah.com (you must first register). If you feel comfortable doing so I encourage you to express what it’s like to live with a chronic illness. It’s no secret I would love for her to be aware of National Invisible Chronic Illness Awareness Week, and for her to see that nearly 1 in 2 live with illness—quietly–not just the celebrities that are willing to speak out.

Here is what I submitted to the forum. It is waiting approval (and I’m not sure it will make it through or not.)

Everyone copes with a chronic illness in the best way he or she knows how at the time. I have lived with rheumatoid arthritis since the age of 24 (16 years now) and like many people who are posting here, I just take one day at a time. Right now I have been in a new “season” of my disease, off Humera since Aug 2008 because I ended up with the flesh-eating bacteria in a wound. Extra prednisone and other meds are keeping me going–but just barely.

As founder of National Invisible Chronic Illness Awareness Week, I am eager to see what this show entails. As a long-time viewer of Oprah through the years, I applaud her efforts to finally talk about the emotional impact of invisible illnesses. (MS can be invisible for years and then can become “more visible” as the disease progresses, liike my RA and many other illnesses.)

Many of us may be frustrated if Montel shares experiences that are different than are own. I see posts that express that Montel is a bit whiny about his experience of “fighting for his life” while living with this disease.

But a couple points: One, he isn’t alone in his experience and will be encouraging many people who feel alone and isolated in their feelings of suicide. According to various studies, depression is 15-20% higher for the chronically ill than for the average person and physical illness or uncontrollable physical pain are major factors in up to 70% of suicides—over 50 % of the people being under 35.

Secondly, I think the honesty and vulnerability he expresses (as seen in the brief preview clip) are vital so that more people can be aware of “the face” of invisible illness. Let’s face it: when people like Montel Williams or Michael J. Fox (who is on the cover of Good Housekeeping this month) speak out, it gives illness a face — and a young one at that! Something those of us under 60 should appreciate.

It’s a nice reminder to healthy people that there are many of us who “look fine” but who are not, and who can legally park in the handicapped parking spot when necessary (even when we emotionally don’t want to!) Over 133 million people live with chronic illness, about 1 in 2 in the USA and about 96% of these diseases are invisible.

I have always liked Dr. Oz and am glad that we can hear from him on the topic of illness, perhaps even some of the emotions behind it. Rather than just sensationalize Montel’s experience, I think it’s vital that the audience hear from a well-respected physician on what you can do after the diagnosis when the illness begins to affect all areas of your life, as well as that of your family.

Thank you for taking the time to let people know about Invisible Illness Week. This year it will be September 14-20, 2009 and we are planning for it right now! We are eager to see how we can spread the word even more effectively this year and you make a huge difference!

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 15^th 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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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

 

Book Review
Everything Changes: The Insider’s Guide to Cancer in Your 20′s and 30′s

Clearly I am passionate about the needs of younger adults who juggle typical age-related challenges like dating, marriage, building a career and starting a family—all with the added complication of illness. So when I heard about Kairol Rosenthal’s new book, Everything Changes: The Insider’s Guide to Cancer in Your 20′s and 30′s, I was excited to see someone else focusing in on the younger adult population…And interested to see where the similarities and differences in emotions and experiences between patients in her book and those in Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties emerged. “But you’re too young for this!” How many times have you heard this? Whether it’s a physician, another (older) patient, or even a well-intentioned friend or relative who says it, the effect is usually the same: it dismisses the reality that patient is experiencing. When it comes to diagnosis, that kind of attitude can be dangerous. When it comes to diagnosing cancer in young adults, it can be lethal.

One of the things I appreciate most about Rosenthal’s book is her blend of personal and patient insight—she traveled around the country taping interviews with many young adult cancer patients—with factual urgency. Young adult cancer patients are typically diagnosed later and at more advanced stages because they are “too young” for cancer, and some 70,000 young adult cancer patients are diagnosed each year.

Rosenthal lets these patients tell their stories in their own words, and steps in to include her own observations and experiences in each chapter. From navigating the dismal world of health insurance to employment challenges to the need to advocate for your own health, Everything Changes covers the topics most salient to cancer patients at this stage in life.

>read more at Laurie’s blog here!