This Should NEVER Happen

Well, it's the last day of National Invisible Illness Awareness Week.  I had a totally different post in mind, but something happened to a dear MG friend of mine that I just had to share, so that people are MADE AWARE.

I know about bullying.  I was a "victim" when I was little.  I'm not sure that's what they called it back then, and it sure wasn't handled well.  I've always been the fat kid.  Since kindergarten through high school, college, and into adulthood, I've always been overweight.  And especially in grades 1-9, I was mercilessly teased.  I remember one year I was terrified to leave my house.  I would just cry and cry.  Every day.

But that was school.  And I was a kid.  And it happens.  For the "usual" reasons.  It shouldn't, but it does.  But what I'm going to tell you now...this is THE most disgusting thing I've ever heard.

As I said, this happened to a dear MG friend of mine very recently.  She was at a gas station after picking up her children from school.  She is a single mom, and had been throwing up all that day or the previous one, I can't remember.  Regardless, it took everything she had to get her kids and stop to gas up her vehicle.

After sitting for 15 minutes waiting for an open gas pump, the second it was free a gigantic truck zoomed in and stole her spot.  My friend motioned that she had been there first, and the woman "challenged me to move her truck."  Seriously??  HOW old are we? So she moved on to the next pump.

Now as we all know, stress makes MG worse, and my friend was already near bottom.  She felt herself getting worse on the spot.  As she's pulling up to the next pump, a guy does the same thing! Zooms right up...She pulls her car right up on him, and Big Truck Chick comes over to tell her to move her car!  (The audacity of these people!!)  As Big Truck Chick comes over, my friend goes to get out of her car, and her legs gave out from under her. She fell to the ground.

Her sons were with her, and one of them had to get out to help her.  The other people at the station thought she was drunk, and were LAUGHING at her.  Her son yelled that she was disabled and asked why they were laughing.

This story both breaks my heart and infuriates me.  What kind of world do we live in?  I mean seriously?  The gas station p!ss!ng contest is one thing, but actually laughing at a single woman with children in the car who is in obvious distress?

SHAME ON YOU whoever you are, you heartless, insolent cretin.

Do NOT judge people.  And if you do, may the fleas of a thousand camels infest your nether-regions until you go mad.

Here a Code, There a Code!

And yes, I am ready for the funny farm.

It is National Invisible Illness Awareness Week, so this is perfect timing.  For all of you healthy people who never have to go to the doctor, or who don't ever meet your deductible, or don't even know what a co-pay is, this is for you.

Got a bill from my doctor for my annual exam saying my secondary insurance didn't cover it because it wasn't medically necessary. (The same exam that they harp on you until you get it....send emails, phone calls, rent billboards, whatever...)  So I call Priority to find out why they denied the claim.
Me: Hi, I have a question about a claim that was denied.
Pri:  Date of service? blah blah blah
Me: gave them info.  This was for my (I'll spare the details for the dudes).  Why was this deemed medically unnecessary?
Pri:  It wouldn't be.
Me {Sigh...here we go}: Um, I have a bill for $**.** and a notation saying Priority Health said "exam not covered Not Medical Necessity", yet on my Priority website it says I'm due for said exam.
Pri: Claim number?
Me: blah blah blah
Pri:  Oh, I see.  They didn't bill a procedure code.  We can't approve it without a procedure code.  We don't know what you had done without a procedure code.  Blah blah blah procedure code.
Me: What EXACTLY has to happen for you to approve this claim?
Pri:  They have to resubmit it.
Me:  Is there a specific fax number or something?
Pri: No, they do it electronically.
Me:  Gotcha.
Click.

So I call the local doctor's billing people.
Me:  Hi, I had a claim denied because there was no procedure code on it.
Them:  That's not possible.
Me {SERIOUSLY????}:  Um, I have the bill in front of me and it says, "Routine Phys Exam Not Cover Not Medical Necessity."  And I called Priority and they said they had no procedure code.
Them:  Well they're wrong.  We can't send it without a procedure code.
Me {hitting myself in the head with a hammer hoping to just pass out}:  Well, do you think you could resend it since they claim they don't have it?
Them:  Well, I can resend it, but they should have it.
Me:  Well obviously I can't tell you if that is true or not because I don't have the paperwork in front of me.
Them:  Well, like I said, I'll resend it.
Me {thinking, oh, how mighty kind and generous of you....I owe you my first born...} Thanks.

That was AFTER I was on the phone making SEVEN different appointments.

Ah, yes.  A day in the life.  By the time I make Jacob breakfast and lunch, try to remember to eat something myself (which usually happens in the afternoon when my blood sugar crashes), AND if I have a day like this when I have to straighten out some idiot's mistake, do all my medical crap (shake-alator, breathing treatments, clean trach, etc.) I'm not sure I have time to clean my house, fold laundry, take care of the dogs, get dressed, get Jacob dressed, homeschool, work on jewelry, and cook.

Just sayin'.

Invisible Illness Book Review

Photo courtesy of Amazon.com

 I was offered a chance to review the book "Take Me Home From The Oscars-Arthritis, Television, Fashion and Me" by Christine Schwab, a true Hollywood fashionista.  I jumped at it.  Christine has Rheumatoid Arthritis (RA) and hid it for twenty years. 

I wanted to wait to do the review during Invisible Illness Awarenss Week, because like me, Christine Schwab wrote this book to raise awareness for a mostly invisible illness, RA.

Christine Schwab worked in the television industry, specifically, doing makeovers on shows like Regis and Kathy Lee, then Regis and Kelly, Entertainment Tonight, The Insider, and more.  In the Hollywood limelight, she discovered she had an autoimmune disease called Rheumatoid Arthritis.  And she told no one but her beloved husband, Shelly Schwab, president of television distribution at Universal Studios.

The title of the book comes from a real experience:  She and her husband were on their way to the Academy Awards, and Christine was in terrible pain.  She had managed to jam her feet into her heels, but could barely walk.  Once in their seats, the pain became unbearable, and they actually walked out of the Academy Awards.

Christine knew that she had to hide her disease.  She did fashion makeovers on television!  She had to look perfect.  People with arthritis didn't work on television. So she made excuses, found reasons to wear sneakers, and lied...a lot.  All because she felt ashamed and afraid.

I could relate a lot to this book.  While I didn't hide my illness, I was with Christine emotionally every step as her body betrayed her.  She hid for twenty years her pain, her anguish, her illness.  That is why I'm so thankful for National Invisible Illness Awareness Week.

There seems to be a stigma attached to invisible illnesses that has been difficult to shake.  People who are sick but LOOK okay get judged frequently.  They are marked as lazy, crazy hypochondriacs.  And we are NOT.  We are sick people who may not look sick.  We need acceptance, not judgement.  I find it overwhemingly sad that Christine felt she had to hide an illness that was no fault of her own for 20 years before realizing it was okay to speak out.

Here are some interesting statistics about chronic and invisible illness, thanks to RestMinistries.com

*By 2020, about 157 million Americans will be affected by chronic illness.
*The divorce rate among the chronically ill is 75%.
*Physical illness or uncontrollable pain account for almost 70% of all suicides.
*Nineteen million people who are severely disabled do NOT use a walker, cane or crutches.
*Sixty percent of chronically ill people are between the ages of 18 and 64.
*About 96% of illnesses are invisible.  These include autism, bulemia, depression, mental illness, bipolar disorder, multiple sclerosis (MS), myasthenia gravis (MG), fibromyalgia, asthma, brain tumors, dysautonomia, Lyme disease, Alzheimer's, lupus, cancer, diabetes, migraine, dementia, scleroderma, and many, many more.

Christine Schwab does an amazing job writing her story and sharing her fears and concerns about her invisible illness.  She deserves a lot of credit for using her experience to shine the Hollywood lights on chronic illnesses like RA.  I highly recommend this book to anyone who has a chronic illness or takes care of someone who does.

From the Publisher:   

About the Author
Christine Schwab is a fashion, beauty, and lifestyle television reporter and author.  She has been a recurring guest on Oprah, NBC Nightly News, CBS's The Early Show, The Today Show, Live with Regis and Kelly, Entertainment Tonight, The Insider, Rachael Ray, Inside Edition, and E! Entertainment.  Schwab has also been featured in O, The Oprah Magazine; Newsweek; Vanity Fair; Ladies Home Journal; Women's World; The Chicago Tribune; The Huffington Post; and The Washington Post Magazine. She is the author of Quickstyle and The Grown-Up Girl's Guide to Style.  Schwab lives in Beverly Hills, California.
Photo credit Rich Marchewka

Stress Is Very, Very Bad

The worst thing for my chronic illness is stress.  Stress can be invisible, just like illness, unless you're not so good at hiding it (the stress response) like me.  When I'm stressed, pretty much everyone on the planet knows it.

So.  Here are just a few of the things that cause me stress that, in my humble opinion, could be avoided if other people would just do their jobs.

1.  I had a pulse ox walking test at my doctor's office on August 2nd.  Today is September 13. That's a month and 11 days since the test.  I am STILL waiting for them to fax the information to my pulmonologist and Airway Oxygen. I have called no less than 7 times.  I called the office manager this morning and left a message, and am waiting for a call back.  SEVEN TIMES.  Airway needs it for Medicare billing approval, and my pulmonologist needs it because my O2 sats are way too low.  I cannot think of a reason on this earth that would cause someone to NOT be able to neither fax the information requested NOR return any of my calls. Unless, of course, they have met with a terrible fate and lost all of their fingers, voice, and brain.  If I do not get the information faxed today, heads. will.  roll.

2.  On a totally separate matter, I had to listen to 1 minute and 47 seconds of "if you need this" option that I didn't need, "press one now" before I even got to be put on hold to speak to a human being.  Said human being finally got on the line, and was either drunk, asleep, ill, or all of the above, because I couldn't understand a word she said.  And she wasn't foreign.  In this economy, you'd THINK companies could find qualified people to answer their %$#!* phones.

3.  We went to the fair Sunday.  I hate the fair.  Dirt, rides you can hear falling apart as you walk by, crowds of people from the elite to the dregs of humanity...all I see are germs.  That's my superpower.  I see the germs on everything.  And it's not pretty. It makes me throw up a little in my mouth.  But since my son was in heaven for 8 hours (yes, 8, long, grueling hours) I tried not to hyperventilate.  I did take 2 canisters of foam antibacterial hand stuff, one bottle of gel antibacterial hand stuff, one package of antibacterial wipes, and one package of Clorox bleach on-the-go wipes.  And still, exactly on time, 48 hours later, Jacob is getting a cold.

4.  We have not had Blue Cross Blue Shield insurance since December 1, 2010.  Yes, that's almost a year ago.  Yet I STILL receive EOB's from them because Medicare forwards the claim to them instead of Priority, my new health insurance (since December 1, 2010).  I have called Medicare on several occasions and they swear it's been taken care of.  Obviously not.

5.  I have been trying to get my doc's office and my insurance to cooperate on getting a monthly calcium supplement like Boniva or Actonel.  I took Fosamax but stopped because of the dangerous side effects.  I have osteoporosis from Prednisone, and I haven't been taking anything for months now.  I'm at my wit's end.

6.  Then we have the every-day life stressors that everyone has to deal with:  finances, children, husbands....everything household related falls to me.  If it happens inside the four walls (unless it's a construction project) it's mine to deal with.  Sweet.

Invisible Illness affects every area of my life.  Every. Area.  So if I seem super stressed out or grumpy, or exhausted....I probably am, and with good reason.  I have been feeling SO much better since I've been getting treatments more often, and closer to home.  And I am very thankful for that.  I guess that's why I haven't been in the hospital from all this stress! 

And I'm very thankful for good friends who "get" me, who I don't have to pretend with... Because there's a lot of pretending that goes on with people who have chronic illness.  We get just as tired of it as our caretakers do.  And we can never escape it. 

Invisible Illness...Did You Know?

September 13-19 is National Invisible Illness Awareness Week. Today I wanted to tell you some things you may not know about chronic and/or invisible illness.

Did you know that almost 50% of the population of the United States has a chronic illness?

That by 2020, according to the Department of Health and Human Services 157 million people will be affected by chronic illness?

INVISIBLE ILLNESS makes up 96% of chronic illness. These people do not use a cane or any assistive device and may look perfectly healthy.

Did you know that 60% of the chronically ill are between the ages of 18 and 64?

The divorce rate for couples with chronic illness is over 75%.

I have to stop here for a moment. I just kept saying, WOW. That is HUGE! Seventy five percent!Three-fourths. Only 1 in 4 marriages with chronic illness survive. I can understand why, because it's hideous to live with, and it's horrible to take care of.

It makes me all the more thankful for MY husband, and for the other solid marriages I know of where the couple is dealing with chronic illness. Thank you to our caregivers. God Bless all of you. We know it's hard. It's hard on us too, but you have to watch a loved one suffer. You usually work outside the home as well. If you don't, you have to keep the home and cook, many times special diets. You run the errands, call the doctors, deal with insurance, and for that, we thank you.

So from the bottom on my heart, thank you!

The risk of depression is 15-20% higher in people with chronic illness.

Various studies have reported that physical illness or uncontrollable physical pain are major factors in up to 70% of suicides.

And finally, did you know that those who use their religious faith to cope are significantly less depressed, even when taking into account the severity of their physical illness? In fact, the clinical effects of religious coping showed the strongest benefit among those with severe physical disability. Some 87 patients hospitalized with serious illness who also then suffered depression were followed over time in another study. The patients with a deep, internalized faith recovered faster from the depression, even when their physical condition wasn’t improving.

(Statistics from http://invisibleillnessweek.com/2009/05/06/statistics-chronic-illness/)

There is a reason for my hope in trials, for my peace in chaos, for my joy in sadness. His name is Jesus. I know someday I will be with Him, free from all this external baggage. I will be whole. I will be healthy. I will be perfect. And I will be free.

Finally Got Some Post-It's Out!

Invisibleillness.com is sponsoring the coolest thing. National Invisible Illness Awareness Week is September 13-19. The theme this year is "Each one can reach one." SO...we hit the town with our post-it notes. Here's me in the credit union parking lot checking out how this would work. I had a bunch of different saying on post-it notes, all with the website on the bottom.
This is actually the desk of the salesman we bought our new van from. He sold Doug his truck 15 years ago, and he is a Christian guy. He also has horrible chronic back pain. (So if you think of it, pray for Perky Knoll. Yup, Perky is his "real" name.) He wasn't by his desk, but saw us and came running...thought we were upset about something. So he let me put the note on his calculator anyway!

At Farm and Fleet, I put one on the 50lb bags of animal feed!

At Pamida (my favorite store in Allegan) I put one on the electric cart.

This is what it said:

Then I put one on the big box of a rocking chair.

I'm sure painters experience pain. Or know someone who does!

Many women are moms. If you're a Mommy and you have chronic illness, it can be tough! Invisibleillness.com can help!

It was really cool to put these all over town. I really hope that SOMEONE will go to the website because of a note they found. That would be awesome.

On a totally different note...It rained most of the day for our garage sale, but there are always a few die-hard garage salers. We keep praying tomorrow will be better! So I'm MIA, you'll know why!