Thursday, August 27, 2009

Lisa Copen, part 3

It has been a delight to share this ongoing conversation with Lisa Copen, founder of Invisible Illness Week, over these past three days. If you have missed the previous two parts of our conversation, please visit Tuesday's and Wednesday's post before coming back to join us here. :)

Lisa, we both know that there are thousands of people with illness who feel desperately alone and think no one possibly understands what they are going through. What would you tell these people?
LC: Honestly, if I could just sit beside them and give them a long gentle hug I would do that first. I struggle with just listening myself; I always want to start solving the problem! But I know someone to listen to them is what most people really need.

Secondly, I would also validate that they are right--no one really can understand what they are going through. Illness is a unique and lonely experience. That said, there are a lot of ways to connect with people who understand more than they may expect; they just have to find them. There are lots of ways online to connect when you can't drive to a support group. Our social network is Rest Ministries Sunroom and I recently began Illness Twitters to connect people who Twitter about illness or health issues.

Lastly, my faith in the Lord is the foundation of how I cope with my illness, and so I couldn't walk away without at least encouraging them to give God a try. They may have had some negative experiences in the past with a church or Christians, but people are not perfect, and God really does have a plan for their life. And it's God's "Plan A." The illness hasn't bumped their life down to "Plan B." I can admit that this sounds cliche. But each day I hear from people who tell me about how their faith in God is the one thing that gets them up the morning and keeps them looking forward to the next day, rather than dreading it.

As you have been working to get out your message about National Invisible Chronic Illness Awarness, how have you seen blogs and twitter and other forms of social media make a difference, Lisa? Has social media increased how you've been able to reach more people this year to inform them about Invisible Illness Week?
LC: Absolutely. Exponentially! For example we've done a series of tweets on 20 things not to say to a chronically ill person and 20 things to say. Our twitter hashtag is #iiwk09 to find Invisible Illness Week tweets easily. A lot of interesting conversations have been spurred by these tweets. Be sure to follow us @invisibleillwk on Twitter!

We have over 1600 people who have joined our cause on Facebook. And we are giving away prizes to people involved in these different areas of outreach.

How can people get involved with Invisible Illness Week and find out more information?
LC: Thanks for asking! Just helping us spread the word, for example, reading and sharing about this blog post, is the perfect start to be a part of our grassroots cause. I don't have to tell you that we don't have a marketing budget! I hope people know that they are making a difference just by introducing other people to our virtual conference. And not just those who are ill, but spouses, parents, caregivers. Everyone knows someone who is ill. You can find everything about the week at our web site National Invisible Chronic Illness Awareness Week, and we also have some fun items like buttons, tote bags, bumper stickers, silicone bracelets that say, "Invisible Illness, Visible Hope" and awareness pins.

Our theme this year is "A Little Help Gives a Lot of Hope."

We also are looking for bloggers who would like to be a guest blogger on our web site. Or you can just sign up to commit to blogging about invisible illness and Invisible Illness Week on your own blog through Bloggers Unite. We have a Facebook Cause page of course, so it's easy to share with friends and family. Share the video, the twitter "illness facts" we are sending out, things like that. Be sure to mention Invisible Illness Week to your counselor, doctor, pastor, peers, colleagues; we have brochures too.

Some people use this week as an opportunity to call their local paper and share about the week, their support group and their illness, and get featured in a story. Since it's listed in Chase's Annual Events journalists can tie it together.

Lisa, as always, it has been a delight chatting with you. I'm praying for you and for all the men and women in need of support like the kind they will find at the virtual conference next month! I'm looking forward to sharing with you voice-to-voice at noon on Sept. 15 as we talk about Coping with Crisis on top of Chronic and I'm so excited by the descriptions of all the different conference sessions and great speakers lined up this year!

Wednesday, August 26, 2009

Lisa Copen, part 2

Yesterday I had the joy of introducing you to my friend Lisa and her work as the founder of National Invisible Chronic Illness Awareness Week (NICIAW). If you haven't yet had a chance to read part one of our conversation, please take a moment to revisit yesterday's post before picking up with us here. :)

Lisa, what was it that made you see Invisible Illness Week as necessary? Why did you start this?
LC: Well, a few reasons. I began Rest Ministries in 1997. It's a Christian organization that serves those who live with chronic illness and the sponsor of Invisible Illness Week. I kept seeing many people who felt very alone, misunderstood, and frustrated, feeling that their illness, pain, and suffering were completely invalidated. Some people have a spouse who even doubts the existence of an illness.

I also saw lots of family members, caregivers, doctors, churches, etc. who wanted to reach out to people with illness, but they said all the wrong things. Eventually they distanced themselves from their loved ones because they just didn't understand illness or how to respond to it.

The fact that illness and pain is invisible to see can make it hard for healthy people to understand. And those with illness can easily become bitter when their loved ones believe it is being exaggerated. It makes for a sad situation all the way around and I thought communication could be a helpful first step.

This sounds familiar. I've heard many people say this.
LC: It does, doesn't it? Even those of us who cope rather well with our illness on a day-to-day basis can still have moments of frustration. We may park legally in a disabled parking spot and we get the look from someone walking by. A friend may ask, "So are you all better now?" People don't always comprehend the difference between being sick and being chronically ill.

So you decided to start Invisible Illness Week and address some of these issues?
LC: Yes, I saw such amazing people who survive against all odds and still had hope and faith. I wanted to give them an opportunity to encourage others who were going through depression or hopelessness.

It doesn't really matter what our illness is, where we may live, our age, or how long ago we receIved a diagnosis, etc. The truth is, most of our illnesses are invisible and the fact that a healthy person is unable to see the symptoms we experience or the physical pain provides us with a lot more in common with one another in the similarities of our illness ever could. Once we get start talking about the emotions behind our illness we find out we are not nearly as different as we may have originally assumed.

What illness is it that you have, Lisa?
LC: Rheumatoid arthritis is my main chronic illness that I cope with on a daily basis. I received my diagnosis in 1993 when I was 24 years old. At a few years after that I started having symptoms of fibromyalgia and later receIved a diagnosis. Unfortunately, I have not ever experienced remission which is what all the doctors hoped for. So the last eight years has been a challenge as disease has progressed. I realize in many ways I am blessed and could be worse off than I am now and yet in the last couple of years my illness is becoming more and more visible rather than invisible.

I don't just cope with daily pain now, but I struggle to do everyday tasks such as unloading the dishwasher or driving because my hands and feet are becoming more significantly deformed. I am on all of the medications that you can imagine to try to slow the progression of the disease down but the last year has brought me into a new season and I have many surgeries that will need to be scheduled in the near future to keep any mobility I have.

Beyond the grace of God, what personally fuels your "grace tank", the driving force that enables you to keep giving of yourself even when exhausted beyond description and living in pain?
My husband is a gem and I couldn’t do any ministry without his support. And not just emotional support, but doing the dishes, the laundry, meals sometimes, taking care of our son, and more. My son is 6 and he makes me laugh. When you are trying to explain the Lord to a 6-year-old you learn a lot of lessons yourself all over again. I also go to bed early and read a lot. I will read my Bible on my Kindle and then I love to end the evening reading some good fiction. It takes me away for awhile. A lot of times I may end up back out of bed by 12:30 a.m., but I try to at least get to bed by 9 or 10 and have some quiet time.

I heard that you type with just a few fingers.
LC: Yes. I use about 3 fingers and my 2 thumbs. I have a voice program but I usually want to talk too fast and it can't keep up.

Even with your limited typing abilities, you have written several books including one that gives 505 ideas on how people can reach out to someone who is ill, right?
LC: Yes! It's called Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend; It's actually a very helpful book because even though I wrote it, I still refer to it frequently for fresh ideas on how to encourage someone who is hurting. Too often I get stuck in the rut of not being able to think of anything other than another meal. Food is a nice gesture, but there are so many more creatIve and memorable ways to show someone you care. We also have cute little JOY gift certificate cards that you can give a friend when you are offering to do something for them. JOY stand for "Just Offering You" and one can fill out what they are able to offer (errands, laundry, taking your child for a play date, etc.) and when the best time is for them to volunteer to help.

That's a great idea. I would think that it would be a lot easier to accept help from someone if it came in the form of a gift certificate.
LC: I think so. The cards are great for a support group, a womens ministry, or really anyone who wants a light-hearted way of saying, "I'd love to help. Here is what I am able to do."

Well, Lisa, thank you again for joining us here today. And also for starting National Invisible Chronic Illness Awareness Week. I understand that in addition to your health challenges you are also a wife and mom. I know it can't be easy to try to do all that you do.
LC: Honestly, it's not, but it has always kept me going too and I couldn't do it without my husband's support. Thank you for hosting me at your blog this week. I hope all of your readers will visit us at National Invisible Chronic Illness Awareness Week and let your friends know about our free 5-day virtual conference! We're going to have a great time!

Please join Lisa and I for the conclusion of this conversation tomorrow, where you will learn specific information about how to participate in the encouragement of NICIAW and the 20-session free virtual conference!

Tuesday, August 25, 2009

My dear friend Lisa Copen

I'm happy to once again introduce you to my dear friend Lisa Copen, a great personal encourager to me for many years. She is also the founder of National Invisible Chronic Illness Awareness Week. This year NICIAW is September 14-20, 2009. Lisa is on a blog tour to help increase awareness of the week and its 5-day free virtual conference (where I'll be on of 20 radio guest talking with her throughout that week). There are lots of ways to get involved and since Lisa has so much great information to share with us, we will be spreading out these Q&As over the next few days.

Hi, Lisa. Thanks for connecting with us here today at Hope Harvesters™.
LC: Thank you for the honor of being here. I read a lot of blogs, but recently I've visited more than ever before and I'm amazed at how the quality and quantity of blogs on health and illness matters have grown over the last couple of years. Both the readers and writers of blogs have changed how people perceive different illnesses, because they reveal not just the symptoms of illness, but the daily lives of the people who live with them.

It is wonderful to see the growth in both volume and quality of awareness and support! :) Speaking of awareness, tell us about National Invisible Chronic Illness Awareness Week. That's quite a description.
LC: Yes. Often I refer to it as just Invisible Illness Week or NICIAW. Our mission is to have a designated time, worldwide, in which people who live with chronic illness, those who love them, and organizations are encouraged to educate the general public, churches, health care professionals and government officials about the affects of living with a disease that is not visually apparent. Through programs and resources, we seek to recognize the daily challenges of more than 100 million adults and children who live with invisible illness.

It's also a great chance for people with any illness to be involved in a national event to increase the understanding of their own particular disease. They can use our event to blog about the emotions of living with their illness, for example, how they often may look perfectly fine but are in deep pain.

Why do you feel God has given you such a passion to advocate for the chronically ill, especially those of us with invisible illnesses?
LC: Honestly, I wish I knew. I never would have “chosen” chronic illness ministry—it chose me! And no matter how tired I get or overwhelmed with the business side of the ministry, I know this will be a passion of mine until the day I die. I just see so many people hurting who just want one person to talk to who understands. They just want one pastor to say, “I’m worried about you. How can we help? REALLY?” I see so many who are left by their spouse, abandoned by their children, misunderstood by their dearest friends. It’s so disheartening. The Christian community has a huge opportunity to minister to these people and include chronic illness ministry and outreach into their church alongside divorce recovery or widow ministries, etc. I don’t understand why it’s so hard to break down the resistance except for the fact that no one wants to acknowledge that illness isn’t always healed here on earth.

Explain the idea of a "virtual conference" to us. What's that?
LC: A wonderful opportunity to "attend a conference" without every having to get dressed! The main part of the Invisible Illness Week is our 5-day virtual conference--which is completely free--September 14-18. There are 20 speakers who are experts in their area and with chronic illness they will be giving a 40-minute presentation and then taking live calls. The seminars are M-F, 4 times a day on a variety of topics: going to college, marriage, applying for disability assistance, cleaning, finding the right job, faith, preparing for surgery and many more. All are free, listened to live or later, and even downloaded from itunes to your ipod or purchased on a CD.

That's a great idea! So are last years programs available too?
LC: They are. We used a chat room originally so we had written transcripts, but one can hear 2008's programs can be heard from a computer, itunes, or even purchased on a CD.

I know a lot of us would love to attend a 5-day conference on how to better cope with chronic illness, but because of our illness, traveling, finances, sitting for so long, and other factors, it just isn't possible, so this is perfect.
LC: Isn't it? It's kind of ironic that we began virtual conferences years ago, but now many organizations and companies are making this a trend because of the economy and costs of a real conference.

I'm looking forward to talking with you more tomorrow about exactly what is involved in a "virtual conference" and learning more about your personal story and your heart for all of us facing the daily struggle of invisible and chronic illnesses!

Friday, August 21, 2009

Coping With Crisis on Top of Chronic, part 1

This is "part 1" of a 2-part series of notes for a radio program on Coping with Crises on Top of Chronic; Chat with 2 Gals Who Understand where Lisa Copen and I chatted for National Invisible Chronic Illness Awareness Week. For "part 2" of these notes, follow the link at the end of this message.

A couple of weeks ago I was fighting the first day of a migraine (it ultimately lasted 13 days in spite of medical efforts to subdue it) when I got a phone call from my lab. There had been an issue with my recent blood work and it needed to be redrawn as quickly as possible. I figured I could wait until the headache and accompanying spotty vision abated enough to allow me to safely drive, then I could manage to get myself to the lab that was 10 minutes from home, sometime later in the week. Unfortunately, as the lab tech continued to apprise me of the situation, I realized that the vial that needed to be redrawn was one I had done nearly three weeks earlier at the specialty lab over a windy mountain pass nearly an hour away.

My phone rang at about 11 on a Tuesday morning and I had to have the redraw prior to an IV I would receive that next Sunday. Because of Post-Infectious Chronic Fatigue Syndrome (ME/CFS), my driving ability is limited to about half an hour from home and only on relatively straight roads, even on my best of days. The location of the lab already meant I would have to call in outside help to get it done. Not only would I need help, but I would need to be rather demanding about how and when I received that help because the specialty lab only does these specific draws on Mondays, Tuesdays or Wednesdays before 1 PM. I had to somehow either get myself to the lab within the next two hours that very day, or hit a specific five-hour window the next. If I could not arrange childcare, someone to drive me, and cope with the effects of motion sickness on top of my migraine misery before 1 the following afternoon, I would have to try to reschedule my IVIG therapy for a second time, the treatment we had fought for the past 18 months for insurance approval to be able to begin!

My mom, who was herself dealing with pre-op workups for a knee replacement surgery, helped me figure out a plan for my dad to drive me and three kids up the mountain the following morning and still get back down to town in time for my x-rays at the orthopedic surgeon’s office the next afternoon. I certainly didn't want to miss that appointment and delay my hopes of getting my broken foot out of a cast after 10 weeks of slow healing! Before the week was over, Mom would also end up driving me to my primary care doctor’s office for migraine shots two days in a row. As I tried to juggle all those different medical demands, I joked with my mom that I never knew that being sick could be such hard work!

Do you ever feel like living with a chronic illness is a full-time job? And as if managing your “regular” health challenges isn’t complicated enough, what do you do when a crisis situation comes along on top of the daily juggle of pain, unpredictable symptoms, medical care and the financial strain that can accompany it all? Life doesn't just stop because of illness. Accidents, sorrows, trials and tragedies (as well as joys, victories, accomplishments and achievements) of all proportions still happen around and to us. When just coping with chronic already overwhelms us beyond our limitations, how do we keep from being done in by crisis, the surprise "extras" that come along?

I certainly haven’t figured out all the answers, but after living my entire adult life under the shadow of Chronic Fatigue Immune Dysfunction Syndrome (ME/CFS) and taking some crisis journeys through unemployment, infertility, a few outside medical emergencies such as this broken foot, and several encounters with death, grief and loss, I have learned a handful of coping skills along the way. When crisis hits on top of chronic, here are a few simple survival tips I can fall back on:

1. Quiet Time.
This is a non-optional survival skill for me in daily living with chronic illness. While I might be able to scrape by for a few days without making scheduled downtime a priority, I can’t function on a continual basis without it. In a crisis situation I might be tempted to try to push through on adrenaline for a while, but if don’t make a conscious effort to slow down sooner rather than later, I will pay for it with a significant physical and emotional crash that will be hard to recover from. So while it may feel like there is no time to even catch my breath, in times of crisis I must be aware of my need for regular “time outs”.

There are two ways that I implement this concept in my life. The first is through daily “quiet time” every afternoon in our home. My kids are 9, 6 and 3 and know that every afternoon we will pile into my bed together for story time (sometimes I can barely get through a short, simple picture book that I ask them to read to me while on better days I might be able to read two or three chapters of a novel with them) then everyone will go to their own rooms and sleep or read or play quietly for at least 90 minutes. We have done this since the oldest was a baby. (I encourage moms who are newly trying to implement this technique with older kids who might be resistant to the idea, to start with even just 15 or 20 minutes and work your way up.) On days when I can barely function and wonder how I will ever make it through the day, I know that if I can hang on until quiet time, I will have a chance to recharge at least a bit; on these days quiet time sometimes becomes 2 or 2½ hours rather than just our regular 1½.

On a spiritual level I need daily quiet time as well. God calls me to “Be still, and know that I am God…” (Psalm 46:10). In my weakest moments it might be all I can give to simply lay still and try reflect on who God is, being thankful that He loves me, broken as I am. Other times I can make a more active pursuit of knowing God by spending time reading and meditating upon His Word (my Bible), by praying (simply talking to God) or journaling my thoughts to and about Him. It is only in stilling this most inward part of my soul where I find the greatest refreshment and benefit of quietness and intentional rest. The words of Isaiah 30:15 are so very true; in quietness is where I find my strength.

2. Laughter is the Best Medicine.
Cliché, but true none the less. I can always tell when my husband is feeling stressed, especially over my medical needs, because it is in these times that he most frequently turns to humor to help us through. I cannot even begin to count the times he’s had me giggling with his tongue depressor puppets, or exam glove balloons, or silly comments only the chronically ill could love, as we’ve sat in cold exam rooms waiting for doctors to show up.

Going through fertility treatments I had to get really creative about finding ways to laugh at hormone injections and very invasive testing and treatments. I remember driving across town one day with a sperm sample in my bra (to keep it the correct temperature) and bursting into semi-hysterical laughter at the thought on how on earth I would explain that to an EMT if we were to get in a car accident on the way to the clinic and they would have to cut me out of the wreckage with the Jaws of Life! Sometime laughter is the only way to avoid tears.

Tears and laughter can co-exist as well! Funerals are typically solemn times of amplified grief. But have you ever found those in that inner circle of family and closest friends gathered around together and laughing at funny memories of their loved one’s life? Sometimes laughter comes through tears, but can be just as healing.

3. Support Network.
Did you cringe a little when I was talking about my husband’s playful support at my doctor’s appointments, my dad’s willingness to be both chauffeur and babysitter for my distance blood draw, or what it’s like to be in an “inner circle” of family and friends at a funeral? While I’ve been more blessed than most in this area, I know that support doesn’t typically come easily. We’ve had seasons when we didn’t live near extended family, had few friends, were not involved in a church, and my husband worked 80-90 hours a week. I felt incredibly alone and afraid without anyone to lean on. It was then that I learned just how important it was for me to make the effort to find/create a support network for myself (even when I felt like I have no energy to make that effort)!

Surrounding yourself with support is ideally accomplished before you are faced with a time of crisis, but often seems hard to find. I think this is true because others may not see or truly understand our need for help through the daily grind of chronic. It can be humiliating to ask for help too, even when we are crying out on the inside, “I’m so alone!” When we are faced with crisis, sometimes (not always) support more readily presents itself. When it does, it’s important to take that help offered, though we would all rather be self-reliant enough to not need it.

OK, so you are ready and willing to accept any support you can find, but can’t find any. Now what? Your doctor, hospital, local social services or place or worship are all possible starting places when looking for a support network. I’ve said over and over that I don’t know how people survive without the support of a local church family. Even though I have great family support now, including my parents who moved from out of state just to be near enough to help, I am still thankful for the additional help and encouragement from church friends and local support group members. Being involved in a supportive network also lets me feel like I have something to give back to others, maybe not in helping meet physical needs, but there is hope and purpose simply in sharing my story and showing someone else that she is not alone either.

Another huge advantage we have in the age of the internet is that there are support websites and message boards for just about any issue you can imagine, even those “one-in-a-million” type illnesses. If you can’t find an existing one to meet your needs, there are many free places to create your own online community. When you become a part of an online support network, you may not find someone in your own backyard who will be there to drive you to your next doctor’s appointment (but then again, you may make just such a connection!) but you probably will find many others who personally understand the fears and frustrations of your challenge, be it chronic or the crisis variety. I participate in several online support networks such as Rest Ministries (support for any form of chronic pain/illness), Hannah's Prayer (infertility and pregnancy/infant death support), and many disease-specific forums.

I realize these are only three small places to start the coping process, but this post is already getting quite long, so I’ll save my next three tips for another day. If you want a few more ideas right now, check out Finding Courage in Crisis, an interesting article I ran across earlier this month. I'm always looking for new coping concepts to tuck away for times of need. So how do you cope with chronic, with crisis, or with crisis on top of chronic? I really would love to hear what you have to share!!!

For more on this topic, join Lisa Copen and I as we talk (yes, in our real voices) during the National Invisible Chronic Illness Awareness Week Virtual Conference on September 15. Between the two of us, Lisa and I have survived 45 years of multiple chronic illnesses including Fibromyalgia, Chronic Fatigue Immune Dysfunction Syndrome (ME/CFS), Rheumatoid Arthritis (RA), Diabetes, Endometriosis, Polycystic Ovarian Syndrome (PCOS/PCOD), infertility, chemical sensitivities and more. We know that life doesn't stop just because we are in pain. Hear our radio chat as we share our hearts and experiences through surgeries, infections, IV therapies, broken bones, unemployment, adoption journeys, and grief ranging from miscarriages to the deaths of grandparents. We will talk about survival skills for coping the stress of everyday life when crisis hits and we'll look forward to chatting with you as you call in your own crisis on top of chronic stories too.

Go to for "part two" of these notes or listen to the radio program at

Thursday, August 20, 2009

Will You Help Me Dance? (Chronic Fatigue Syndrome)

I've lived with a serious, disabling and chronic neuro immune illness called Chronic Fatigue Syndrome (CFS) for the past 19 years. This illness goes by many names including Post-Infectious Chronic Fatigue Syndrome, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and in the past was known as chronic Epstein-Barr virus (CEBV). You can find out more and learn the answers to questions such as, "What is ME/CFS?" or "Is it contagious?" by visiting the FAQs at the Whittemore Peterson Institute's website.

The Whittemore Peterson Institute is working hard to find both the root cause, as well as a potential cure, for CFS. They are a wonderful, compassionate group of researchers who have given me more hope in the fight against this illness than I have ever had. To help them keep moving forward, I would love to be able to purchase two tickets to their fundraising event, I Hope You Dance, on Sept. 12, 2009. I cannot afford these tickets on my own, but am asking my friends to consider chipping in to help me out.

Fundraiser tickets are $250 each. I would love to be able to purchase two, one for myself and one for my husband, so that we can attend this event and learn more about the ongoing strides at WPI. I'm asking you to consider helping me earn my way this benefit with your donation of even a dollar or two. For each person who helps me out with $5 or more, I will enter your name/email into a drawing for $30 in free products from Affordable Mineral Makeup™. If you can send me $10 or more, I will enter your name/email in a drawing for a Flower Bead Set necklace and bracelet from Gurrlie Girl ($68 value; or you may specify that you would prefer 2 entries into the makeup give-away if you would prefer). Any gift of $20 or more will get you entered into both drawings!

Whatever I can collect from this little drive will be donated to the Whittemore Peterson Institute even if I don't reach my ticket purchase goal, so ever little bit helps!!! Today it's a struggle even to walk, sometimes I'm in a wheelchair or simply in bed. Riding a bike just to the end of my block is no longer an option. Swimming is too much for me. Climbing a flight of stairs is overwhelming and leaves me breathless, wobbly and in pain. But I have hope that someday I will have a body that functions as it should again, and then I will be able to dance! Will you help me?

Wednesday, August 19, 2009

September Highlights

I'm very excited about the posts coming to Hope Harvesters™ over the next month! Soon I'll be sharing an article on Coping with Crisis on top of Chronic, offering ideas on dealing with the highs and lows of life while living with illness. This will be a little preview of the radio conversation I'll be having as a guest of Lisa Copen on Sept. 15 as part of the 20-speaker Virtual Conference for National Invisible Chronic Illness Awareness Week. You will also get to know a little more about Lisa and NICIAW here when I interview Lisa next Tuesday and can get a feel for what this conference will be all about by reading this short poem, You Don't Look Sick.
Edited to add Sept. 15 radio interview link :)

National Invisible Chronic Illness Awareness Week, Sept. 14-20, 2009

In addition to our focus on surviving and thriving through illness, I am thrilled to be able to be a part of a special new movement called (In)Courage. (In)Courage is described as being "a bit like a beach house where you can put your sandy, dirty feet on the coffee table, help yourself to whatever's in the fridge, laugh late into the night with friends, and hear God's voice more clearly than perhaps anywhere else." It's a group of women coming together to share our messy, broken, imperfect lives as we strive together to offer all we are to the glory of God.

(In)Courage launched earlier this month and had about 20,000 visitors in their very first week of posts on the topic of "courage". Next month's theme of "hope" is near and dear to my heart and I look forward not only to sharing my own reflections about Hope in the Shadows on Sept. 19, but am eager to soak in all the wisdom from other real and godly women who will be guest blogging on the topic all month long.

Monday, August 17, 2009

Dawn won Rain on Me

Because I never heard back from original winner of the Rain on Me book give-away, Dawn (entry number 10) has been selected as our new winner. Dawn, I have mailed you an email and ask that you please reply back to me at jsaake AT yahoo DOT com with your physical mailing address by this Thursday so that I can get you book in the mail to you. :)

Thursday, August 6, 2009

How protective are you of your medical information?

I struggle with how much of my story to share. With infertility I was ultra-transparent. With other chronic illness, I don't feel quite so inclined to spill "the good, the bad and the ugly," at least not all the time. I'm a huge believer in peer support, that it is critically important to the mental and emotional well-being of someone living with chronic pain/illness to know we are not alone. And how will we connect if we aren't open about the issues?
And yet there's just something daunting about having my medical history plastered all over the internet. Some days I feel very open and "tell all" while other days I worry about the reality that once something is posted on the internet, there's really no "taking it back," or realing in the potential long-term impact of revealing the reality of my struggles.
I know I post more than most, and usually I'm OK with that, but other days I stop and wonder if being so transparent is really the wisest of ideas? I certainly hold back more than I share because of that nagging sence of the unknown impact of the internet. Today's a day I feel overwhelmed and want to just spill it all out, but do I really want my great=grandchildren (or yours?) being able to access today's struggles generations from now? I just don't know! *sigh* Maybe I'll create a password protected blog where I can share all, yet not allow universal access to my thoughts???
How about you? Are you a tell-all kind of guy/gal when it comes to your health, or do you guard your information as private? I really can see both sides of the fence!

P.S. I'm on day 4 of a migraine I thought was resolving yesterday but was back with a vengance at 4am. I'm fighting for everything I'm worth to keep from throwing up because I'm afraid that once that part starts, it won't stop easily! (I've been continually nausious for about 5 weeks now with ongoing digestive issues, but this is a new migraine-related layer of nausia on top of the pre-existant virus or whatever it is I already had going on.) I had a 45 minute drive up curvy mountain roads (well ride actually, as I can't drive myself that far) for blood draws yesterday morning, followed by an hour back down the mountain and stopping at another doctor's office for follow-up x-rays on my foot. Today I see my primary care doctor to talk about the new medication that was called into my pharmacy yesterday that I'm not even sure what it's for, and Sunday I start IVIG treatments with my first IV anticipated to take 4-5 hours to administer and weekly infusions for the next 12 weeks. So there it is, today is a "spill it" day afterall.

P.P.S. I have not forgotten about the book give-away for Rain on Me, just haven't had a chance to select a winner yet. There were so many heartbreaking stories represented by your posts and I am praying for you each!