Dealing With an Invisible Chronic Illness - But, you don’t even look sick!

For those of us with an invisible chronic illness such as Lupus, Rheumatoid Arthritis or Fibromyalgia, hearing the words “but, you even look sick” can be quite frustrating. That frustration comes from the fact that you are in fact sick and people do not understand how sick you really are. This is a big misconception that lies in the lack of understanding of an invisible chronic condition.

National Invisible Chronic Illness Week runs September 14 -20, 2009. In anticipation of this week’s awareness event, the committee asked 1200 people suffering with an invisible chronic illness to take a survey relative to how they looked compared to how they felt.

For more information on this year’s awareness week, visit Bloggers Unite or the Invisible Chronic Illness group site.

When I talk about having Rheumatoid Arthritis and Fibromyalgia, and I then “you don’t look sick” response, I am not sure how to respond. Sometimes I find it frustrating and sometimes, I am just relieved that I do not look sick. Other times, such a statement can be difficult depending on the individual saying it. Our friends and families “should” try to understand what we are dealing with on a daily basis, but quite often they do not. My mother has had osteoarthritis for several years now and until my own recent diagnoses within the last two years, I couldn’t even begin to understand. Perhaps, I am not one to judge others feelings, but when you hurt so much, that is a task in itself. I have learned that the world’s problems seem so small now that I am just trying to make it through the day, and focus on my health, resting and just feeling better.
I believe is awareness will lead to cures for these otherwise invisible illnesses. So, I ask each of you who read my blog to pass this information along. Please tell everyone you know about National Invisible Chronic Illness Week which runs September 14 -20, 2009. The goal of the yearly event is to increase awareness of invisible illnesses.

Did you know that half the American population has some kind of chronic condition and 96% percent of those people suffer from an invisible condition? If you or someone you love suffers from an invisible illness, you can understand that awareness is vital. Please spread the word. Bloggers can participate by uniting efforts to increase awareness online and share experiences. There is a badge available at Bloggers Unite so please pick that up and place it on your blog. For more information on when and how to blog, visit Bloggers Unite.

Last, I just wanted to remind you of RA Guy’s Awareness Campaign called The Power of Ten. Take ten minutes over the next ten days and talk to at least ten people about rheumatoid arthritis. Real awareness comes from real people!

The list below comes from the responses to that survey by the National Invisible Chronic Illness Awareness Week committee.

1. I am hangin’ in there…
2. I am so blessed. God is so good.
3. Drugs are a wonderful thing
4. I have my good days and I have my bad days.
5. I clean up well.
6. I have my ‘good’ days….but this isn’t one of them!
7. Thanks, I wish I felt better.
8. That’s a perfect example of how you can never judge a book by it’s cover.
9. Thanks, but there are many aspects of MS which you don’t see … would you like to know more about it?
10. That’s what most people think since pain can’t be seen most of the time. Have you heard about Invisible Illness Week? It’s really helpful to let people now that most illness is invisible.
11. I’m trying to appreciate that fact. I know the day may come when I have to use a wheelchair or a cane, and my illness will be more visible.
12. You should be on the inside.
13. Thanks. I have more to be grateful for than I have to complain about - which means I have a LOT to be grateful for!
14. Well I guess I did good job on my makeup, because I am having a hard time to tell the truth.
15. …And that’s all that really matters, isn’t it?
16. Powder and paint, make you what you ain’t!
17. It took a lot of work to look like this.
18. It’s God shinning through me
19. It’s nice of you to think so, but you’re missing the pain and agony that I really am in.
20. And you look so wise. Looks can be deceiving though, huh?
21. I’m having a “good face” day.
22. Yeah. My kid thinks it’s cool I’m an ill person working under-cover!
23. I do a great job hiding how I really feel.My life is still very challenging and probably will always be, but I am hanging in there, keeping a positive faith, and gratitude as THE attitude. Thanks for their concern.
24. I’m trying my best to do well OVER my circumstances instead of being under them!
25. It’s up and down.
26. I’m still struggling, but it IS nice to have a day when I am able to pull myself together and make it out of the house!
27. I’m not complaining about my looks.
28. I’m very good at pretending.
29. Good, because if I looked like I feel it would scare you to death.
30. Actually, I still am really hurting…
31. I am 36 years old outside but 85 inside
32. Thank you. I’m on my way to the Oscars.
33. Thanks, I’m grateful for this good day.
34. Things aren’t always what they seem.
35. Praise God, I’m glad that he enables me to look so much better than I feel.
36. Thanks, that’s God’s joy shining through!
37. Have you ever heard of the spoon theory?
38. I am upright which is better the alternative
39. Thanks, want to swap bodies for a few days?
40. Thanks, I guess I am fortunate that I have an illness that can’t be seen.
41. Thanks. I like good days.
42. Want to step inside my skin?
43. It’s amazing what a shower can do. I guess I am all cried out for now
44. Thanks…I wish I felt it!
45. I’m not complaining about my looks.
46. I’m very good at pretending.
47. Looks can be deceiving (and smile)
48. Thank God for makeup!
49. Thank you for caring. I try to act like I feel better than I really do.
50. Thanks, I am trying to even though it will never go away. i just try to remember things could be worse.
51. I’d be great if it wasn’t for the pain.
52. I’d complain but who wants to listen.
53. If I can’t feel good, at least I am determined to look good!
54. I’m in good shape for the shape I am in!

What do you say? Or what would you say if you could say anything (keep it clean!)

* This list can be reprinted. Please add the following at the end: This list is compliments of National Invisible Chronic Illness Awareness Week at www.invisbleillness.com, based on a survey of over 1200 respondents. Get involved in Invisible Illness Week each year during September, including our 5-day virtual conference online.

Getting It Done Friday: Cash for Clunkers

The Car Allowance Rebate System (CARS) also called “Cash for Clunkers” was passed to help Americans purchase new more fuel efficient cars when trading in less fuel efficient ones. The program started on July 1 officially, but the processing part did not begin until July 24. The billion-dollar project was exhausted by July 30 due to high demand. Congress is currently seeking another $2 billion to extend the program through the end of this week.

In order for a vehicle to qualify, it must meet the following criteria.

· Vehicle must be less than 25 years old on the trade-in date.
· Only the purchase or 5 year minimum lease of new vehicles qualify.
· Generally, trade-in vehicles must get a weighted combined average rating of 18 or fewer MPG (some very large pickup trucks and cargo vans have different requirements).
· Trade-in vehicles must be registered and insured continuously for the full year preceding the trade-in.
· Trade-in vehicles must be in driveable condition.
· The program runs from July 1, 2009 until Nov 1, 2009 or when the funds are exhausted, whichever comes first.
· The program requires the scrapping of the eligible trade-in vehicle and that the dealer disclose to the customer an estimate of the scrap value of the trade-in. The scrap value, however minimal, will be in addition to the rebate, and not in place of the rebate.

Depending on the new vehicle purchased, the credit amount could be between $3,500 and $4,500. New car dealers are also able to reduce the purchase cost of a new vehicle that the customer is eligible for.

For more information or to see if your vehicle qualifies, visit the Cash for Clunkers website.

Here is some information about the program.


Here is humorous video.

Getting it Done Friday #3: Stop Trying to Be Super Mom

As moms, we constantly have to keep a game face on. We do everything just because we have too. After all, is there anyone else willing to do it? Moreover, each and everyone Super Mom wears that super cape and feels that she must be super all the time and every where. Super Moms are constantly trying to carry the world’s (well, almost) on their shoulders. The truth is no one can carry the world on their shoulders on a daily basis, even God, when he created the heavens and the earth rested on the 7^th day. It can really take a toll on a person and there will be plenty of tears when it does.

I, as a Super Mom, worry so much that it results in nightmare on an almost nightly basis. I wear my Super Mom cape and forget how vulnerable that makes me. Every Super Mom thinks she is invisible. We are not our mothers, nor are the mothers portrayed in Ozzie and Harriet, Leave It to Beaver, Donna Reed and many more. Nowadays, Super Moms have twice as much responsibility. We need to take care of our families and hold down full or part-time jobs.

I work full-time, do freelance document preparation work, attend school part-time working on master’s degree, and I take care of my family while my husband’s job takes him all over the country and involves 60 hour work weeks. (I lost count, how many jobs do I have?) Every evening, I start the second shift. Arlie Hochschild first introduced us to the concept “the second shift” in the late 1980s to define the domestic work that working women perform when they arrive home after their workday is complete.

Nobody can manage home and work life without having it take some kind of toll on them. Unfortunately trying to be a Super Mom can result in physical and emotional suffering and stress related conditions. Many moms try and sometimes they succeed and sometimes they do not.

Here are some Super Mom survival ideas that I have come across in my quest to be the greatest Super Mom ever! (I think, however, that title belongs to Michelle over at The Adventures of Super Mom.)

1. Find balance: Prioritize what is important, - your kids. One day they will be all grown up and you will be wishing they were children again. And who cares if your housekeeping suffers?

2. Think about your health and ask for help when you need. Remember to rest and take time for yourself. I have learned about having to ask for help the hard way, when it finally took a toll on me.

3. Live in the moment. Spend time with friends and family and stop worrying about what tomorrow brings. Enjoy your life and the time you have with your children before they are all grown up.

I am as guilty as each and every one of you when it comes to trying to be a Super Mom. I have read countless books on how to manage it all. Below are some recommendations that are my favorites.

Even June Cleaver Would Forget the Juice Box: Cut Yourself Some Slack (and Still Raise Great Kids) in the Age of Extreme Parenting by Anne Dunnewold.

Dunnewold’s book is about creating a balance between family, self and work, also ridding oneself of negative thinking, perfectionism and control issues and anxiety.

You’re a Good Mom (and your kids aren’t so bad either) by Jen Singer.
Jen’s book is about the balance between Super Mom” and “Slacker Mom” and how to fall just somewhere in between. Secret One is the best - “Super Mom is Faking It”, and as Super Moms, we know that manage life as it comes.

The Secret Life of Super Mom by Kathy Buckworth is one of my favorite books, and I am constantly recommending it to mothers every where. If you are Super Mom, you will enjoy this Kathy’s book about how Super Moms manage their lives, and not necessary always in a graceful manner. Super Mom’s home is not the cleanest, nor are her kids the most well behaved. My favorite piece of advice is taking the kids out to eat. Let them make a mess, and sit back and relax. Let someone prepare the meal, clean and mess, and just remember to leave a good tip.

Well happy reading Super Moms! Remember, you are super!

Is your man gay?

Lately, one of my Google ads is a quiz about whether your man is gay. Apparently, mine is leaning between gay and not gay. Yes, I got sick of seeing the ad and decided to take the quiz. Go try it for yourself and find out whether your man is gay. (Paul at Adoption and My Two Daddies, don’t bother taking this quiz. Ed is gay so you are safe. :)) Before I start discussing the results of my quiz, I would like to say to those who wrote the quiz, you are so off! If my man was gay or close to it, he and I would actually be on the same page, and so if he was gay (or close to it), there would be harmony in my home.

So I made my way into the quiz and I see the following header “Nobody wants to think their significant other is playing for the other team, but anything is possible. Some men are in a committed relationship and living on the down low. Is there a chance your man might prefer the company of men? Take our telling quiz and find out if you're at risk for losing your man to the handsome guy next door.” So the question was asked and I disagreed.

Some of the questions asked include:

How often do you and your man have sex? This was the very first question. Now, what does sex have to do with it?

Has your husband ever dressed up in women’s clothing? Now what a stupid question. Just because a male is gay does not mean he would dress up in women’s clothing. A straight male wrote this quiz if you ask me.

How many gay friends does your husband have? What does having gay friends have to do with sexual preference? These people need to get real.

Has your man kissed another man? Now, how would I know that? What kind of kiss are they referring to?

How does your man feel about porn? Okay, ladies any man who says he is disgusted by porn is lying. He may be too busy or not that interested, but when that porn is right in his face, he will sit down to watch.

Which best describes your man's Internet habits? Look at these choices.

He gets online late at night after I've gone to bed.
He only gets online at work and for work-related projects.
He rushes home and gets online to check his personal e-mail after work.
I've seen some questionable sites in his browsing history.
He surfs straight porn but leaves the gay stuff alone.
What woman is willing to admit some of these? And I swear to you, a straight man wrote this quiz.

Next, on our list of corny questions. How many male strangers does your man have on his social networking sites? And the results were:
7% Too many to count
18% A couple randoms who "friended" him
45% None
30% My man doesn't spend time on Facebook, MySpace or any other social networking sites that I know of.

I offer no response to this one, but my man doesn’t know Facebook, MySpace, etc. Yeah, lucky me!

And my favorite question in the entire quiz.
What best describes your husband's bathroom routine when he's preparing to go somewhere?
4% He primps and preens for hours
9% He spends an average amount of time in the bathroom, but spends hundreds on products
72% He's in and out
15% When it comes to getting ready, he's like a woman.

My husband is part of that 15% and that may explain why he is leaning to both directions. I believe the words were:” Your man is really in touch with his feminine side.” Again, I disagree. If my husband was that much touch with his feminine side, we would be on the same page, now wouldn’t we?

Now, you try the darn quiz. If for some reason you are not seeing the banner on my page, go directly to the quiz. Let me know where your man ranks.

My Pal Scout Recall

This is Scout and my 11th month loves Scout. He sleeps with Scout, he plays and sings with Scout, and Scout goes everywhere. My Pal Scout is an adorable green dog with plastic decals on its paws. When the decals are pushed, the dog plays songs, speaks, barks, and even can be programmed to say the child’s name.

The Scout recall is a voluntary of about 3,700 units that were sold. The hazard is that the paws of the plush toy can be removed and apparently ingested by a child. Thus, they pose a choking hazard. There have been two reports of children removing the decals, including a report of a child ingesting a decal. Apparently, Leap Frog has asked that the toy be taken away from young children and that we contact them for a return and replacement.

So we took Scout away from the baby on Monday night and he was not thrilled. He spent the entire evening barking to let us know that he wanted Scout. He got up in the middle of the night and called out “Mama” and then barked to let me know he wanted Scout.

All I have got to say to is that Leap Frog better get their act together and send me a new Scout very fast, and they better pray that my little guy doesn’t notice that it is not “his” Scout. I am so tempted to hand Scout back to him, especially if he continues to bark. I will let you know how that plays out. Leap Frog - get your act together on this one.

For more information on the recall, go to the U.S. Consumer Product and Safety Commission website. You can also contact Leap Frog at (800) 701-5327 between 9 a.m. and 6 p.m. ET Monday through Thursday and 9 a.m. to 5 p.m. Friday or visit their website.

Follow Friday #3 – Three Blogs I Have Stalked So Much, I Should Be Arrested

Here is another installment of Follow Friday. I stalked these blogs so much I should probably be arrested. I hope you enjoy these three as much as do.

Rheumatoid Arthritis Guy Rheumatoid Arthritis Guy takes superheroing to another level blogging about RA every opportunity he gets and offering support along the way. RA Guy’s story is about the “Adventures of a superhero on his journey through chronic pain and debilitating inflammation.” Like most of us with RA, RA Guy was diagnosed in his 30s (RA is most commonly diagnosed in the 20, 30 and 40 age groups) and since this diagnosis, RA Guy has picked up a great deal of information about rheumatoid arthritis. RA Guy has dealt with the useless meds, the major aches and pains associated with the condition, and that all-the-time sick feeling, the depression, and finally learned how to manage his RA.

Part of that management included therapy and thus, the Adventures of RA Guy was born. Humor is a great medicine, isn’t it? Make sure you check out RA Guy’s 60 Second Guide to RA which gives the short version of what RA is all about and is something even SpongeBob would totally understand.

Here is video made by RA Guy about the RA rollcoaster and what an RA flareup is like.

I am Living Proof God Has a Sense of Humor Helene is a great example of “be careful what you ask for.” After struggling to have children, Helene and her husband were blessed with not one, but two sets of twins. Being a stay-at-home mom to two sets of twins has its challenges, but it is to the advantage of the rest of us, Helene blogs to keep herself sane. Helene’s recent memo to the bosses is one for the blog books, as I am not quite sure the bosses are old enough to read quite yet, but they will in time. Here is an excerpt from part 1 of that memo:

“I am proposing a change in my hours (don't you love how I make it sound as if it's your decision but we all know it's really not). I would appreciate not being expected to clock in any earlier than 7:00 am and I'd like to complete my work day by at least 8:00 pm, if not earlier. I'd also like to only be on-call at night for emergencies only, like when you have a nightmare in the middle of the night or if you wet your bed.....emergencies that do not constitute paging me: you have a booger in your nose that's not quite within your reach or because you're scared that your eyelashes are going to disappear if you close your eyes for too long. I haven't decided if "my butt itches" is considered an emergency....I suppose it depends on WHY your butt itches but, chances are, it's something that can wait until the next morning.”

For this and more great parenting advice, especially when it comes to time-outs at Helene’s, be sure to check out her blog.



Adoption and My Two Daddies Ever wished you had two daddies? I did, especially since my mother never let us get away with anything. Think about it, two daddies means getting away with twice as much. Well, Adoption and My Two Daddies is Paul’s blog all about his precious little Andrew. After 14 years together, Paul and Ed welcomed their son into the world on Christmas Eve 2007. Andrew is an adorable little character and if you did not know that he was adopted, you wouldn’t believe it. He is so much like Paul. I am sure he shares some of Ed’s qualities, but Paul is the one who blogs, the readers don’t know Ed all that well. Take a look at this video where Andrew is trying to eat all by himself. I could have watched this adorable little guy for hours. Andrew particularly melted by heart in another video where Paul tries to make a comparison between gay dads and straight dads. Andrew stole the show, and well, Paul, not so convincing. Paul and Ed plan on adopting another child, a baby girl, so stay tuned.



Well, here my three Follow Friday blogs that “I Have Stalked So Much, I Should Be Arrested” for the month of July. Make sure you check them out. What are your favorites?

Murphy’s Laws - Have you been a victim?

I am going to be AWOL for a few days. I am finishing my final project for my Constitutional Law course, but don’t fret, I will be back with my nonsense before you know it.

I am blogging about Murphy’s Laws today. You know: “If something can go wrong, it will.” “If anything simply cannot go wrong, it will anyway.” I have complained about Murphy’s Law before and I write again, because well, I am an expert on how things can go wrong at precisely the moment you need them to go right. Lately, Murphy’s Law refuses to leave me alone. It seems like if anything can go wrong, it will.

All I know is that Murphy’s Law should be renamed Mom’s Law and this is coming from an expert. How come five minutes after you change the baby’s diaper, the baby pulls a number two, and the odor is so bad that you have no choice but to turn around and change the baby because waiting for the daycare to do it is out of the question? How come your sick child always manages to throw up on the carpet in front of the bathroom? Or when you clean your home and it looks just perfect for company, but there are no shows, but the minute your kids tear it apart, the doorbell rings. A great one is when you are all dressed up to go out and a sticky or dirty hand makes it on your clothing. Children are attracted to your best clothes like a magnet. How come when you go to the bathroom everyone needs your full attention? How about the minute you set down to have a moment to yourself? The other ironic twist is that even though Dad is around, the kids need Mom.

Previous examples of Murphy’s Law That Have Forced Me to Be a Victim
• Your child gets sick and you have a presentation to give at work, and dear daddy is nowhere to be found.
· You are running late and you forget the children’s lunches
· The baby spits up on your shirt and you don’t notice it until after that important presentation that you were already late for and had to run out of because you have to drop that sick child off at your mother’s.
· The only time you find a close parking spot when you get to the grocery store is when you have none of the children with you.
· Your noisy neighbor (That stay at home mom that makes everything from scratch and has that spotless home – you know her. Yes, the mom with the polite children that look and act nothing like yours!) only comes over when your kids have turned your living room into Fort Knox.
· One of the kids gets sick before Christmas - right about the time you have run out of sick days and you end up having to borrow a vacation day, or two or three or in my case, four, from the upcoming year.
· How about when you send your child to school, knowing all too well, that they are sick, and praying the school nurse does not call, but sure enough, she calls the minute you arrive at your desk.

For more on Murphy’s Laws, check out Murphy’s Laws of Parenting HERE.

What about you? Have you been a victim?