One Way You Can Encourage a Chronically Ill Friend #iiwk2011

Most healthy people don't realize how many normal, everyday things a person living with chronic illness has had to give up. Most healthy people don't understand how much loss a chronically ill person endures when they are robbed of the pleasant things in their lives due to pain, fatigue and other symptoms.

Being the healthy friend is also difficult.  In the face of illnesses that just don't get better or end, perhaps you've gotten discouraged.  Maybe the time and energy spent on your friend has diminished over time too. After all, you have your life to live too and there are many things competing for your time and attention.   

But you still want to help, right?

This is a gentle reminder about how much it means to your sick friend when you take just a few minutes out of your busy and hectic life to do something nice for them.  

So take this moment to take a deep breath.  Then commitment to renew your efforts to help.  Just wipe the slate clean and start fresh.  Forget about the past and start again, today, helping your sick friend.

This is where the video below will come in handy. 

One of the many things you can do to help your sick friend is to help them discover a new hobby or interest when their old ones aren't possible anymore.

For example, I can certainly relate to having to switch from backyard gardening to container gardening (which I write about over at The Seated Gardener.)  This new pursuit started when an occupational therapist challenged me to find a way to keep gardening despite my chronic pain. 

Another example is how my friend Cyndi turned me on to blogging by challenging me to a friendly blog-a-day competition back in May 2009.  Now blogging is one of my new passions.

This video has some great ideas and suggestions.  As a friend to someone who is chronically ill, it might get you thinking about fun new ways you can encourage your sick friend to connect and enjoy life.  What greater gift could there be than helping a friend in such a thoughtful and meaningful way.

Enjoy!

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Question of the Week: Are You Ready to Start Fresh?

Wow, I am so lost in my own little world right now.  I've been distracted, irritable and completely disorganized---and I know it!

I've been really struggling to get back on track for months now, and then feeling bad when I can't quite seem to get there...

The latest example of my waywardness was my worry today that I had missed Invisible Illness Week 2011.  I hoped and prayed that I hadn't, since it is really THE week that helps spread awareness that just because you don't look sick doesn't mean you aren't sick.  Since I can pass for healthy, i.e. I don't have a visible disability, lots of people can't tell I deal with multiple chronic illnesses just by looking at me.

Thankfully I haven't miss my favorite awareness week, which starts today.  And I both love and can relate to the theme:  Deep Breath, Start Fresh.  Because, well, I could really use a new beginning!

Check out this video that explains this year's theme:





So what do you say? Have you been knocked off course and need an opportunity to get back on track like me? Want to take a deep breath and start fresh with me? Then let's do this together...

If you are up for the challenge, leave me a comment to let me know you'd like to join me. And let me know how you plan to celebrate Invisible Illness Week 2011 too.  As always, I love reading your comments here or over at the OMA&P! Facebook page.

By the way, have you noticed my fresh start here at Oh My Aches and Pains?  I'm loving my new blog design courtesy of DreamUp Studios.  You'll want to take a few moments to watch my *new* blog header animation.  It features a virtual representation loosely based on me that I like to call Dot (as in the . between ohmyachesandpains and info in my blog URL.)

Wordless Wednesday: My Mask Unmasks Fibromyalgia for Invisible Illness Week

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• Invisible Illness Week: Weekend Projects (ohmyachesandpains.info)

Invisible Illness Week: Weekend Projects

Image via Wikipedia
I don't know about you, but I have been really enjoying the Invisible Illness Week Conference sessions over at Blog Talk Radio. Plus the great thing is that the sessions are archived so you can listen to them any time you want. In fact, listening to the ones you missed this past week might be a great weekend project:

• Living with Chronic Illness: Why It Hurts, How to Cope
• Relationships When You Live with a Chronic Illness
• 2 Mini Sessions: Getting Organized and Time Management When You Have Chronic Illness & Parenting with Chronic Illness
• 2 Mini Sessions: Living with Invisible Illness & Girl Talk: How Connecting with Others Helps Us All
• Illness and Work, Career, and Starting Your Own Business

Another idea for a weekend project comes from Leslie over at Getting Closer to Myself and all you need is a paper bag and some crayons or markers. Inspired by the work of Saul Steinberg, Leslie and her friend Maria of My Life Works Today are encouraging us to create a mask that unmasks our invisible illnesses. Once completed, they want us to post pictures of our masks on our blogs and/or submit a picture to them for their project.

You can read more about this project and see pictures of Leslie's masterpiece by reading her post Invisible Illness Awareness Week 2010.

This has been a busy and rough week for me, so despite my best intentions I'm still working on my paper bag creation. I hope to have it completed by Monday and I will post pictures of it then.

So those are my suggestions for some projects for the weekend that will help nourish your soul and support you in your quest to learn how to live your best life despite chronic illness. Have a great weekend!

Wordless Wednesday: Invisible Illness Week Edition #iiwk10

Invisible Illness Week 2010: Each One Can Reach One #iiwk10

Invisible Illness Week: Is Chronic Pain Making You Blue? #iiwk10

Invisible Illness Week: Living With Chronic Illness? #iiwk10

Invisible Illness Week: I Live With Invisible Chronic Illness #iiwk10

Invisible Illness Week: Got Pain? #iiwk10

Invisible Illness Week: You Are Not Alone #iiwk10

Gearing Up for Invisible Illness Awareness Week 2010

It's almost September and time for National Invisible Chronic Illness Awareness Week. I wanted to share with you information about several aspects of this year's celebration and encourage you all to get involved.

Press Release

National Invisible Chronic Illness Awareness Week is September 13-19, 2010 and so far thousands of participants are showing their support through the social network, Facebook, the second largest site on the internet according to Alexa.com.

Lisa Copen, founder of National Invisible Chronic Illness Awareness Week, which she established in 2002, says, “In 2009 our nonprofit organization included Facebook for the first time in our awareness campaign and the results had a significant impact we could not have imagined.”

Copen explains that when people who live with chronic invisible illness join an Invisible Illness Week group, a “Cause” or “Like” a page, it is a non-intrusive way of saying, “This is something that personally affects my life and that I care about.”

According to Copen, before social media, many people expressed that it was uncomfortable to email their friends or family illness-awareness related materials without creating feelings of being pushy or critical of their responses to illness. Now, by joining a cause on Facebook and inviting friends to join, it is much simpler to create awareness about daily life with invisible chronic pain.

It is particularly enlightening when someone with an illness invites friends to join the Invisible Illness Week Cause, and discovers how many friends are also suffering silently from conditions such as chronic migraines or fibromyalgia. “Sometimes those of us with illness forget that we may have loved ones who are also silently coping with invisible chronic conditions,” says Copen.

Approximately 7000 thousand people are a part of Invisible Illness Week’s presence on Facebook and Copen says she would love to see this number continue to grow. “We have some amazing articles, guest bloggers, and seminars that will help people know they are not alone in their pain and how to deal with the daily part of it even better.”

With nearly 1 in 2 Americans coping with a chronic condition, they are not alone, but the invisibility factor can make it feel that way.

To join one of Invisible Illness Week’s Facebook groups, causes or more see http://InvisibleIllnessOnFacebook.com.

Media Relations Contact
Lisa Copen
Coordinator
National Invisible Chronic Illness Awareness Week
888-751-7378
http://www.invisibleillness.com

YOUR ASSIGNMENT

Did you see the post-it note at the top of this post? Guess what? Leaving little notes of encouragement in places were other people with chronic illness can find them is our assignment from Lisa this year. Watch her video here:




CALLING ALL BLOGGERS

Please head over to Bloggers Unite and sign up to blog for Invisible Illness Week. Lisa has posted some great ideas for blog posts and encourages us all to set Goggle on fire September 13 with the keywords "invisible illness week."

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Oh My Aches and Pains! mentioned at Multi-Tasking Momma's blog

I am always honored when someone reads my blog and doubly so when my musings go on to inspire others. During Invisible Illness Week, Melissa aka the Multi-Tasking Momma came by for a visit and read my post 30 Things About My Invisible Illness You May Not Know Today, But Will Remember Tomorrow.  She commented in her post Invisible Illness Linky Love:

Selena She talked about something in a way I had never considered before, but found to be so true.  In addressing question #14, Selena opened my eyes to the reason behind a phenomenon I couldn’t explain before.  People would be surprised to know that: “socializing with family and friends is more difficult for me now”.  It is for me too and I didn’t understand why.  Selena goes into more depth about it so visit her blog for the answer.

Please visit the Multi-Tasking Momma for some great reading.  My thanks to Melissa for visiting my blog.  You've given me the idea to undertake my own blog travels and pass along the "Linky Love."

How Roche Made Hepatitis C More Visible #iiwk09

Back in June of 2005, Roche Pharmaceuticals started a new campaign to raise awareness about Hepatitis CHCV) and encourage those with HCV to seek treatment. This campaign consisted of several posters like the one featured at the top of this post. As you can see, the poster raised the question, "If Hep C was attacking your face instead of your liver, you'd do something about it." Right?


Well I guess, in theory, if Hepatitis C disfigured my face I'd be trying to figure out how to make my face look better. But the assumption that it would lead me to choose HCV treatment might be a faulty one. After all, an easier option would be to just invest in some really good makeup or receive some kind of dermatolgical treatment to cover up the symptoms.

You see, I have genotype 1b and treating genotypes 1a and 1b is especially difficult. The treatment success rate for genotype 1 is about 50% --- a coin toss. Current treatment is a combination of interferon and ribaviran, which I did try back in 2007 when directed by two different rheumatologist to seek treatment as they felt my chronic HCV infection was fueling my fibromyalgia. After three weeks, I wound up in the hospital September 11, 2007. I stopped the treatment because of side-effects; side effects made severe due to impairment of my immune system and my dysautonomia which are late effects from my leukemia treatment in 1988.


I hope and pray every day that the next generation of Hepatitis C treatments, protease inhibitors, hurry up and get here. Similar to the drugs used to combat HIV, protease inhibitors hold the promise of a more tolerable and less debilitating HCV treatment. Early results from several clinical trials look very promising, but according to the hepatology team at Cedars-Sinai Medical Center, the FDA has asked that these new medications be tried in combination before final approval. That means that pharmaceutical companies like Schering, Vertex, Pharmasett and Intermune need to work together to make antiviral HCV treatment a reality.


I am encouraged by the news at the HCV Advocate website that the very first STAT-C multi-drug targeted antiviral combination clinical trial began in April 2009. Click here to read more.


Do I want to treat my chronic HCV infection? Yes! But until the treatment outcomes and options improve, I wait anxiously for HCV antivirals that might be more leukemia survivor friendly.

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Updated: The Best of the Invisible Illness Week 5 Day Virtual Conference #iiwk09

The Invisible Illness Week 5 Day Virtual Conference came to an end today. But don't worry! If you didn't get to tune into BlogTalkRadio live between Monday, September 14th and Friday, September 18th, you can still listen to all the conference seminars when ever you want and when ever it works for you. And you have three ways to access the seminars: at iTunes, at BlogTalkRadio and at the Invisible Illness Week website.

Here are my picks for the best sessions from Invisible Illness Week 2009:

Finding a Heart of Gratitude and Joy Despite Illness with Maureen Pratt

Coping with Chronic Illness in Your Marriage with Bill and Pam Farrel

Super Foods for Super-Natural Health with Joanna Faillace

Understanding How We Uniquely Deal with Difficulties in Life with Georgia Shaffer

It's OK to say NO: Building Healthy Boundaries with Jenni Prokopy

Coping with Crises on Top of Chronic - Chat with Two Gals Who Understand with Lisa Copen and Jenni Saake

Simplifying Your Home and Housework with Marcia Ramsland

Find the Job You Desire and Can Do with Rosalind Joffe

Helping Others Understand Your Pain with Karen Lee Richards

Applying and Winning Disability Assistance When You Are Chronically Ill with Scott Davis, ESQ

Highlights from the Invisible Illness Week 5 Day Virtual Conference - #iiwk09

Image via CrunchBase

Here are my picks for the best seminars so far from the Invisible Illness Week 5 Day Virtual Conference. Click on each link to be taken to the Blog Talk Radio website and begin your own personalized conference experience!


Finding a Heart of Gratitude and Joy Despite Illness with Maureen Pratt

Coping with Chronic Illness in Your Marriage with Bill and Pam Farrel

Super Foods for Super-Natural Health with Joanna Faillace

Understanding How We Uniquely Deal with Difficulties in Life with Georgia Shaffer

It's OK to say NO: Building Healthy Boundaries with Jenni Prokopy

Coping with Crises on Top of Chronic - Chat with Two Gals Who Understand with Lisa Copen and Jenni Saake

Invisible Illness ... What Does It Look Like? #iiwk09

My Life With Invisible Illness: Taking a Closer Look #iiwk09

Image via Wikipedia

I live with (or have lived with, in the case of my cancer) six different invisible illnesses: acute promyelocytic leukemia, hepatitis C, Type 2 diabetes, dysautonomia, fibromyalgia and chronic fatigue syndrome. Sure, when you look at me, you really can't see any of these illnesses: I look pretty much like any other human being alive on planet Earth. But looks can be deceiving, even misleading, when you struggle every day to live your best life despite chronic illness.

Sure, having an invisile illness makes it easy to pass for "normal." Other people won't know you have an illness unless you tell them. Sometimes it's better not to say anything to avoid other people's questions, quizzical or judgemental looks, prejudice, avoidance or rejection. But it's not so easy to hide your invisible illnesses from everyone; the more someone spends time with me, the more they are bound to notice that something is amiss. Which got me thinking that maybe my invisible illnesses really aren't so invisible after all. You just have to pay a little closer attention to see the signs that are visible.

I bet if you take a closer look, you will notice:

1. I catch frequent colds and flus, which often make me very ill for several weeks at a time. You'll see me in line at Costco for a flu shot every year.
   
2. I make frequent trips to a variety of doctors. You can see me regularly driving to the UCLA and Santa Monica-UCLA Medical Centers.
   
3. I frequently use medications and can often been seen pulling a pill box out of my purse or pocket. At the pharmacy, I visit so often that the pharmacist and staff greet me by my first name.
   
4. I pull a glucometer out of my purse and use it to test my blood sugar before and after meals. I also give myself a quick injection of Byetta before I eat ... I've even been so brazen as to inject right at the table in a restaurant! Hungry? I also have a snack or two in my purse for low blood sugar moments.
   
5. I keep a folding cane+seat combination in my car and use it for quick errands and doctors' appointments. Where ever I go, you'll notice that I am always looking for a place to sit down.
   
6. I can been seen almost every night walking my dog down my street using a mobility scooter. I also use my scooter at Costco, the supermarket and on my infrequent outings to places like the museum or events like concerts.
7. After years of owning and prefering a manual transmission, I no longer drive a stick shift car.
8. After years of building a career, I now can be found at home during the day, every day.
9. I wear a Medic Alert bracelet or watch every single day.
10. When I can find a space, you'll observe that I make frequent use of available handicapped parking. Watch for me to pull my handicapped placard out of my purse.
    

I guess you could call this list "The 10 Visible Signs of My Invisible Illnesses."

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The Amazing Internet: What Works for Those With Invisible Illness

Image by Valerie Reneé via Flickr

I can't wait for the beginning of the Invisible Illness Week 5 Day Virtual Conference. Anticipating it today, I thought about how integral the Internet is to my ability to reach out to other people living with chronic illnesses. From a self-help weekly group via a listserv, to several message boards, forums and chat rooms to basic email contact with friends and family, I find myself connecting to people each and every day. In contrast, if I had to rely solely on getting out of the house to make contact with other people, I'd be lucky to connect with other people once a week. More likely, based on my experience with the alumni group at the Cedars Sinai Chronic Pain and Fibromyalgia Program, interacting with other people would happen about once a month.

As Lisa Copen explains in her post Chronically Ill Are Perfect Audience for Virtual Conference:

Hard beds, traveling expenses, long walks to conference rooms, peers going overboard on the perfume, and extreme fatigue are predictably part of your average conference. For the chronically ill, however, these inconveniences oftentimes make attending an actual conference impossible. National Invisible Chronic Illness Awareness Week celebrates its seventh year, and with the power of social networking, 2009’s “virtual” conference September 14-18, 2009 is sure to be a success.

I totally agree with her! Beyond eliminating the problems of getting there, surviving the trip and making through each day, a virtual conference offers the ultimate in convenience. There are so many different ways to participate. You can experience each session live by listening online at Blog Talk Radio. During the live seminar, you can call in to ask speakers your questions or submit questions via the chat function. Not able to log on and tune in for the live session? No problem. Listen to the seminar on your schedule through the Invisible Illness website or at iTunes.

What to try it out in advance? You can listen to last year's sessions at Blog Talk Radio right now.

To see the entire schedule of speakers for Invisible Illness Week 2009, click here.

Like every good conference, there is even a place to go and meet the speakers and network with other participants. It's called the Invisible Illness Week Group at the Sunroom social network of Rest Ministries. This is also where you will find any handouts that the speakers have provided. Make sure you go and join this group before the virtual conference starts on Monday so you are ready to participate from the start of the event.

So what so you think? Is a virtual conference for you? Give it a try and let me know what you think by leaving a comment below.

Now it's time for some fun. This YouTube video features an early Canadian news report from the late 1980's or early 1990's about the Internet and how it was "catching on." It is a hilariously and nostalgic look back at the recent past, when we dialed up to connect and interacting online with people around the world was still a novelty.

What Not to Say & What to Say to a Chronically Ill Person #iiwk09

Image by Desirée Delgado via Flickr

These lists are compliments of National Invisible Chronic Illness Awareness Week at www.invisbleillness.com. Get involved in Invisible Illness Week this year during the week of September 14-20, 2009, including the 5-day virtual conference online.

Things NOT TO SAY to a Chronically Ill Person

#1 – You look so good today!

#2 – You just need to get out of the house more.

#3 – If you stop thinking about it, the pain will go away.

#4 – You should just pray harder.

#5 – You must not want to get better if you won’t try this...

#6 – When I was your age I didn’t have the luxury of being sick.

#7 – You’re sick again?

#8 – I wish I could just sit around all day.

#9 – No pain, no gain!

#10 – I’d be sick too if I saw doctors as much as you do.

#11 – I have this juice that is working wonders…

#12 – You must still have sin in your life.

#13 – If you got a job you’d have something else to think about.

#14 – Your illness is caused by stress.

#15 – You can’t be in that much pain. Maybe you just want attention...

#16 – What have you done to make God so mad at you?

#17 – There are easier ways to get attention.

#18 – It’s not good for your kids to always hear you whining.

#19 – When are you going to get rid of that cane?

#20 – I’m so glad to see you out and about feeling all better.

Want to tweet these tips in support of Invisible Illness Week? Click here for the complete list of all the tips, formatted especially to promote Invisible Illness Week (#iiwk09) on Twitter.

Image by Desirée Delgado via Flickr

Things TO SAY to a Chronically Ill Person

#1 - I don’t know what to say, but I care about you.

#2 - I’m going to the grocery, what can I get you?

#3 - Do you just need to vent? I’m all ears!

#4 - If you need a good cry, I’ve got plenty of tissues and a shoulder.

#5 - I really admire how you are handling this. I know its difficult.

#6 - I’m bringing dinner Thursday. Do you want lasagna or chicken?

#7 - Can I get your kids for a play date? My kids are bored.

#8 - I can't sit still. Got any laundry I can fold?

#9 - What can I pray for you about that no one else is praying for?

#10 - Can I bring a few friends over to clean your house fast?

#11 - I don’t have any idea what you are feeling, but I will always listen.

#12 - I saw these flowers and thought they’d cheer you today.

#13 - How can our church encourage those with chronic illness?

#14 - Tell me what it is really like to be you for a day.

#15 - I made too much dinner for our family. Can I bring you some?

#16 - You are amazing. How has your illness given you appreciation for life?

#17 - Do you want me to come over while you wait for test results?

#18 - You listen to me better than any other friend. Thanks!

#19 - I have Monday free if you need me to run some errands or take you somewhere.

#20 – Tell me about this God who gets you through one more day?

Want to tweet these tips in support of Invisible Illness Week? Click here for the complete list of all the tips, formatted especially to promote Invisible Illness Week (#iiwk09) on Twitter.

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