A while back I was contacted to see if I would consider trying out a couple of Tempur-Pedic™ pillows and writing a review on them. Of course, I said yes. I’ve always been curious if the Tempur-Pedic™ pillows would be comfortable, as I have rheumatoid arthritis and fibromyalgia, but the risk of buying them and then not having them work had deterred me. Plus, I love pillows. To find a place to sit on my couch you have to move pillows. To sleep, I have a pillow for my head, another special kind to prop my arm up and two Squish pillows to rest my (naturally fused) wrist on.

I’ll admit that I am also a bit of a princess who can feel a pea in her bed, so I knew it would be an interesting experiment. I typically use a large, stiff pillow that hold the weight of my shoulder off of my shoulder, which need joint replacements sooner rather than late. I flip my pillow over a few times a night, so as soon as it is squished down a bit, I flip it for maximum support.

Most of us have heard about Tempur-pedic, but I didn’t realizejust how many credentials they had. For example:

• Tempur-Pedic® has the only mattresses and pillows recognized by NASA and certified by the Space Foundation as well as more than 75,000 Professional Medical Customers worldwide.

• Their mattresses have earned the Good Housekeeping Seal.
• Their mattresses were awarded a Consumers Digest “best buy”

And important to us with a chronic illness?

• They have earned the prestigious Ease-of-Use Commendation from the Arthritis Foundation

I was sent two pillows.  The first one I pulled out was the Comfort Pillow. It felt like something I wanted to immediately collapse into. And I did. I was sitting on the couch as I unpacked it and told my husband, “I want all our couch cushions made out of this!” It’s heavy yet very soft, made out of viscoelastic material. (Don’t wack anyone with this pillow in a pillow fight!) You sink into it a bit, but it doesn’t collapse under you like a feather pillow (which I don’t prefer.) You don’t become submerged in it. It holds it’s own. This pillow would have been the perfect home comfort to have had when I spent a week in the hospital last fall.

Like anyone with an illness, it took me a few days before I even decided to try out the pillows because I knew that they may not work and I wasn’t willing to give up the possibility of any sleep that I might have. And then when I started to use the first one, the Comfort Pillow, I thought something smelled funny. Was it the cat having a litter box issue again? Nope, it was the pillows that had a chemical smell. A sticker that accompanied them said that they may have a “slight odor remaining for our manufacturing process. It is completely harmless and will dissipate over a short time with regular use.” The smell did go away closer to two weeks of them sitting in the corner of my room, and now it’s fine. That said, if you have any chemical sensitivity issues, the smell may likely not be “harmless” for you and should be a consideration when buying the pillow.

The Comfort Pillow (price range $79 – $159) pillow wasn’t stiff enough for me to be able to use as my regular pillow to hold up my neck, but I absolutely love it. Every night I go to bed early and will read 1-3 hours and this is the pillow I put on top of my regular pillow so I am propped up a bit and yet every sore muscle feels completely cushioned.

The second pillow is what most people think of I think when they hear Tempur-Pedic™ (at least I do), the Neck Pillow (price range $79 – $159)  that has the memory foam. The first few nights I slept on it a few hours (waking up frequently) and eventually it ended up on the floor and I grabbed my older pillow.) But each time I use it, it becomes a bit more comfortable. In the end, this may become my regular pillow. I think it depends on how my body is flaring on a particular night or how much my shoulders are throbbing. I frequently use Voltarin gel on my shoulders to try to relieve the pain, so it would be difficult for any one pillow to meet my variety of needs that change from day to day. I found that it wasn’t quite thick enough to hold the weight off of my shoulder, but if I put a very thin pillow underneath it, it was more comfortable.

Both pillows are a welcome addition to my arsenal of trying to find comfort when flaring with a rheumatoid arthritis flare. Some nights I have slept on the couch because I couldn’t roll over in bed or pull myself up. When I’ve had a bad cough, my chest has flared so badly I’ve had to sleep sitting up on the couch all night. These very cozy pillows will be a welcome part of those nights to find the most comfortable positions as possible.

I suggest visiting the Tempur-pedic website to find out more about their pillows. They also sell beds, and office and travel products. See something you may want to try? Find out where a store near you carries it, and go find a bed and lay down for awhile. Although finding a pillow can be difficult (who wants to pay $100 for something that may not work?) you can discover rather quickly if this is one of those pillows you will sleep on, read with, or hold for arm support.

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• Sleep Positions, Stretching May Reduce Pain (blisstree.com)

Our July 15th edition of HopeNotes is now available to read! And don’t miss the supplemental posts that our editor makes throughout the week at her blog under “Hope Notes News.”

October is National Sensory Awareness Month with the theme “Come to Your Senses.” Volunteer packets will be distributed starting this month, July.

This is the fifth year that SIFocus.com will lead and sponsor this national campaign to raise awareness regarding sensory integration/sensory processing disorders. I am posting this because I am VERY familiar with SID or SPD as a mom of a child with sensory issues.

Read more about sensory processing disorder at SIFocus.com – In fact, if you know a child who cannot sit still, you may start reading about it for the child, only to discover that you have it and that is why you may do some of the things you do.

SI Focus encouragers people that October is the month for working within your own community raising awareness in your schools, among neighbors and within your family.

You can join their volunteers throughout the US and in Canada and England. Contact them at awareness@SIfocus.com and request one of their free Volunteer Packets. They will send you an electronic packet filled with ideas to raise awareness in your community, press release ideas, a fact sheet and more information.

It’s always fun to get something in our mailbox other than bills (especially those medical ones) but if you are starting to feel like you could wallpaper a room with the amount of material you are receiving it may be time to cut back.

In my effort to get my own house organized and decluttered (I think it’s like a diet — it’s more of a “lifestyle change” not an event) I thought I’d share some household tips I am finding online.

I’ve discovered an easy way of getting rid of some catalogs I don’t really want!  Catalog Choice at www.catalogchoice.org is a free service that lets you refuse catalogs you wish to no longer receive. (But allows the ones you do want to keep on coming!)

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• How To Opt-Out From Unwanted Advertisers Online & Offline (makeuseof.com)
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Oftentimes we only see the negative side of living with an illness that invisible to most people. But as time progresses, so does my own illness, rheumatoid arthritis. I can now see that there are advantages to having an illness that can be hidden or revealed, based on one’s own desires or certain circumstances.

I rarely see the changes in my own body, such as my hands or feet deformities, unless I see a reflection in the mirror, for example when I am trying to clothes in a dressing room at a store.

I’ve heard children ask their mom, “What is wrong with her feet?” as they’ve looked under the divider from a nearby dressing room. I can’t help but wonder how people don’t realize I have some sort of illness when they see my hands and fingers.

In the documentary about Farrah Fawcett’s journey with cancer, her son made a comment like, “I know she will be okay. She just looks so good.”

Those of us with invisible illnesses were likely yelling at the television because we too have heard, “But you don’t look sick.” But it was true. There were days when she did look like the blond bombshell we all remember from the posters. But there were many other days when she looked like someone fighting for her life.

There is no doubt it can be frustrating to look healthy when you are feeling like you have the flu times ten. And yet, if we were to really be honest, do we want to look as bad as we actually feel?

There truly are some benefits to having a disease that isn’t immediately noticed by everyone you come into contact with. Lets take a second look at a few of those perks.

[1] You get to choose who to reveal your illness to and who not to. Some people you may immediately confide in; others you may wait and see if they feel “safe.” Some people you may never tell about your illness.

[2] You can avoid unwanted advice. When your illness is visible, even the person in line at the grocery store feels the burden to share the latest cure for your condition or tell you what you should be eating. With an invisible illness, no one knows and offers comments unless you choose to mention it. And then you chose to open up that whole can of worms.

[3] You can do you job without preconceived ideas about what you can and cannot do. At some point you decide who to reveal your disease to, but if you are doing your job successful, you may be able to keep it personal for years.

[4] You aren’t on the receiving end of pity or sympathy stares. People who use assistive devices like a cane or wheelchair, or who have a visible illness, must learn to not care what other people (both friends and strangers) may think when they see them shaking, or struggling to walk.

[5] You can fake it! If you want to just forget your illness and go out for a night with friends, no one has to know how much medication you took just to be able to go out. You don’t have to explain why you aren’t dancing. It can seem like your life is constantly controlled by your illness, but ultimately, you still can choose to put on some fun clothes pretend to be healthy and carefree for a few hours.

Living with an invisible illness, or what some call a hidden or invisible disability, can have plenty of negative aspects and this article does not attempt to belittle them. However, to truly live life to the fullest, we must count our blessings.

Some days the simple miracle of being able to look healthy despite feeling terrible is worth acknowledging and accepting it for what it is.

I saw this posted on a blog I read by a mom with a special needs child and thought I’d pass it along to share.

Written by Ellen S. Ellen, can be found at To The Max.

A Bill of Rights For Parents of Kids With Special Needs

We, the parents, in order to form a more perfect union, establish justice, insure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.

* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.

* We have a right to trust our instincts about our kids and realize that experts don’t always know best.

* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.

* We have a right to choose alternative therapies for our kids.

* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.

* We have a right to wonder “What if…” every so often.

* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.

* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that’s what it takes to avoid burnout.

* We have a right to react to people’s ignorance in whatever way we feel necessary.

* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.

* We have a right to go through the grieving process and realize we may never quite be “over it.”

* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.

* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.

* We have a right to have yet more Pinot Grigio * We have a right to fire any doctor or therapist who’s negative, unsupportive or who generally says suck-y things.

* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.

* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”

* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.

* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.

* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our child’s disabilities.

* We have a right to talk about how great our kids are when people don’t get it.

* We have the right to not alw

ays behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.

* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.

* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.

* We have a right to get tired of people saying, as they give that sympathy stare, “I don’t know how you do it.”

* We have a right to wish that sometimes things could be easier.

* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.

* We have a right to push, push and push some more to make sure our children are treated fairly by the world.

For a printable copy, e-mail LoveThatMax@gmail.com.

Guess what? Lisa is doing a blog tour to help spread the word about Invisible Illness Week and we are opening up our calendar so book your blog today! The tour is July 27 – September 13th and Lisa hopes to help spread the word about Invisible Illness Week! How does it work?

You sign up for the day that you would like to post an interview with Lisa on your blog. Lisa has answered a variety of questions about NICIAW and you will receive a unique “article” to post—meaning each post may say something similar but the article in itself is unique.

(We are pointing that out because many blog tours provide all blogs with the same exact article, which can cause Google to see it as duplicate content. The wording of the article for your blog site will be completely unique, so Google will actually like it!)

We provide the article with hyperlinks already embedded into the code and graphics that you can upload.

When you sign up you can also submit 2 questions of your own to Lisa that she will answer and email back to you to post with the interview. You can write the intro paragraph, change the wording of the questions, make it sound “like you.”

We are excited to reach many blogs that represent a wide variety of medical professions, as well as illnesses. If you have to wonder if an illness “applies” – it does. And invisible illness can be anything from cancer to migraines, bipolar disorder to lupus, or fibromyalgia to autism.

Every blog host will receive a free copy of Lisa’s book, “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend.” It’s a paperback book but we will be giving away a free pdf digital version.

Thank you for your influence in the illness community by sharing your own experiences as well as bringing people together. Once your date is confirmed we will:

• Post your participation on our Twitter accounts, Facebook, My Space, etc.
• The day your blog posts we will post it on our Twitter as well. We will do a Twitter post of any blog hosts who have a Twitter account
• It will be added to our mass calendar for II Week
• The schedule will be announced via a press release at SBWire.com where it will also hit Google News. The schedule will also be posted on all of our social networks, Invisible Illness Week web site, illnesstwitters.ning.com and more.

We are excited to let people discover how many spectacular health, illness and medical bloggers are out there. If you are interested in hosting, please click here to sign up ASAP to grab your preferred slot!

As Christians it’s easy to get caught up in all of the marketing and social networking of the rest of the world. We can say that we need to get back to basics, but let’s face it–Facebook and Twitter, cell phones and iphones are the way people connect now days.

It would have been odd for the church to never take anyone’s phone number years ago when the telephone was invested, because the church didn’t want to  get caught up in that technology.

That said, we need to remember that all of these social networking devices are TOOLS that we should use to carry out scripture. We should use them to reach more people — rather than letting them use us. I say that with a bit of guilty because I’ve told my son as he hovers over my shoulder, just a minute and mommy will get off the computer.  And I’m actually reading an article on how to be a better parent. Ironic, huh?

Occasionally I read a blog about church marketing and how “the church” can improve how it reaches out to people. When does it work right? When do we go overboard?

For example, one church in my town sent out postcards to the entire neighborhood, assuring them the church service would end early to accommodate the Chargers (football) game, plus, if they stayed and watched the game at the church on the TV provided, they might win some Charger’s gear. Is that cross the line into “tackiness” or is that just me?

Anyway, they recently posted this and it got my attention:

I asked my friend how he has continued to be a part of growing a healthy church community for so many years. Two words, he said, “come and care.”

Instead of spending his time trying to get people to come to church, he invests his time getting the people that do come to actually care. When people care, there is no longer an issue of getting people to come, he said. The people who care will get people to come which gets more people to care… and the cycle continues.

Don’t you love that? It sums up how I feel about churches but also about Rest Ministries. I’m going to repeat it…”The people who care will get people to come which gets more people to care.” (I wish I’d said it!)

Check out the Pain is Not Invisible Project of Australia! It’s sponsored by the Chronic Pain Australia Association which incorporated in 2006.

It’s estimated about 1 in 5 Australians live with chronic pain.

If you are one of them, you can register if you deal with chronic pain.

Very cool! Wish we had this in the USA.

With the rising costs of medical care, loss of jobs and more I was glad to see how doctors are personally trying to help out this stress.   Sandra Bodman of The Washington Post, writes about this in an article, “Doctors trying to ease their patients’ financial pain”

Doctors are encountering more patients struggling to pay for care. Some doctors have responded by selectively cutting their fees or devising novel payment arrangements; others have taken a harder line on billing and are sending more overdue accounts to bill collectors.

Although groups such as the American College of Physicians do not specify how much charity care members should provide, many doctors say they feel a responsibility to help strapped patients, particularly those with whom they have long-standing relationships. Some say assisting patients pays dividends in the form of loyalty, which will benefit them once the economy recovers. For others, such efforts may stem an exodus of consumers at a time when elective procedures and visits to doctors’ offices are down.

So far, none of my doctors have volunteered to lower their prices, but I have not expressed the need or expectation that they would. Most of my doctors, I believe, are struggling financially themselves.

Regarding those with chronic illness, the articles goes on to address this, explaining one doctor’s solution for now:

Family physician H. Lee Adkins of Fort Myers, Fla., recently launched a novel plan to counter the growing no-show rate among patients with chronic illnesses: a $75-per-month fee that entitles patients to a basic package of services including more than a dozen office visits per year, simple lab tests and many vaccinations. Patients are required to sign a one-year contract. Why $75? “That’s the same amount people spend on a monthly cable bill,” Adkins says.

What has been your experience?