30 Things About My Invisible Illness You May Not Know

I’m posting this Meme in support of  National Invisible Chronic Illness Awareness Week.

1.  The illness I live with is: Systemic Lupus.  I also have Sjogren’s Syndrome, autoimmune hypothyroidism, and fibromyalgia.

2.  The year I was diagnosed was: 1992.

3.  I had symptoms since: I was 9 years old.  Nobody knew what was wrong with me at that time, except I was anemic and tired.  In 1989 I began experiencing additional symptoms that went undiagnosed for several years.

4.  The biggest adjustment I’ve had to make is: Accepting my limitations, avoiding sunlight and knowing that my health is tenuous, at best.

5.  Most people assume: That aside from gaining weight (from years of chronic steroids) I look relatively healthy.

6.  The hardest part about mornings are: Not knowing if I will be able to move without pain.

7.  My favorite TV medical show is: House … mainly because it’s smart and funny.  But also because according to Dr. House “It’s never lupus.”

8.  A gadget I couldn’t live without is: Well, it’s not really  a gadget, but I couldn’t live without my sunglasses.  I even have tinted glasses to wear inside when my eyes are really bothered by certain lighting.

9.  The hardest part about nights are: Being in pain and having difficulty falling to sleep.  Feeling alone and isolated.

10.  Each day I take: 14 pills in the morning and 6 pills at night.  And every three weeks I go to the hospital for infusions that take all day.

11.  Regarding alternative treatments, I: would like to try acupuncture if I could afford it.  Therapeutic massage is beneficial when my skin isn’t combating vasculitis.

12.  If I had to choose between an invisible illness and a visible illness, I: have had both and would like to have neither.

13.  Regarding working and career: I’m just trying to hold on to the job I have now.  I used to think I had a career when I was in my 20’s and 30’s.  That was a while ago.

14.  People would be surprised to know: the amount of time and energy it takes to do what used to be routine things in life, like grocery shopping and cleaning.

15.  The hardest thing to accept about my new reality is: there is no cure for my disease.

16.  Something that I never thought I could do with my illness that I did: was be able to travel.

17.  The commercials about my illness: do not exist.

18.  Something I really miss doing before I was diagnosed is: Spending time outdoors in the sun and swimming!

19.  It was really hard to give up: my independence.  There are certain things I just can’t do and have to ask for help.

20.  A new hobby I have taken up since my diagnosis is: Blogging about having lupus!  Also knitting AND painting.  I’m a beginner at both but thoroughly enjoy the creativity and challenge.

21.  If I could have one day of feeling normal again, I would: spend the day at the beach, walking along the shoreline and searching for sea glass.

22.  My illness has taught me: patience and humility.

23.  Want to know a secret?  One thing that people say that gets under my skin is: “You look so good today!  You must be feeling better!”

24.  But I love it when people: ask if they can help, make me laugh, and let me help them when I can.

25.  My favorite motto, scripture, or quote that gets me through tough times is: “When you get to the end of your rope, tie a knot and hang on!”

26.  When someone is diagnosed I like to tell them: You are not alone.

27.  Something that has surprised me about living with an illness is: how many people expect you to carry on as if you had no limitations.

28.  The nicest thing someone has done for me when I wasn’t feeling well was: More things than I can list!  I am blessed with kind, thoughtful and caring family and friends.

29.  I’m involved with Invisible Chronic Illness Awareness Week because: I have systemic lupus and want to raise awareness about not only my disease, but about all invisible and chronic illness.

30.  The fact that you read this list makes me feel: very grateful!  Thank you!

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers September 14-18,2009 at www.invisibleillness.com

Freudian Interview

Here’s my Freudian Interview, courtesy of  Allison.  She gave me a list of questions and none of them were easy to answer!!  I tried my best however, and it was fun to have a diversion at work.  Here’s what Dr. Freud might have asked.

"So ... What's Cesar Milan REALLY like?"

1.  You are Queen Of The World for one day.  As Queen, you have to order the beheading of one individual and the knighting of another.  Who will they be and why?

Hmmmm.  So many heads, so little time.  This was a tough choice because the beheading option has sooooo many contenders, such as Bin Laden and North Korea President Kim Jong IL.  After much consideration, I decided that First Class A$$hole terrrorist Osama Bin Laden is the big winner.  I was going to post his photo, but he’s too despicable and a waste of time to look at.

Knighthood?  My dad, of course.  But being the practical girl that I am, I elevate President Barack Obama to knighthood.  He needs our prayers.

Damn it’s good to be Queen of the World.  Even if just for one day.  🙂

2.  A genie appears and grants you a super power ability.  Just one.  Which will you choose and why?

What I would really want to have is the super power ability to have many super powers.   Being able to fly, or be invisible, or even technopathic (the electrical/telekinetic ability to mentally interface with computer data).  I think there’s a big demand for technopathic skills right now.  No bailout for those crooked Wall Street moguls!   But if I had to limit it to one (dammit you crackpot genie), it would be Telepathy.   At least with telepathy, I will be able to know who’s trying to bullshit me.  And if I can read minds I won’t have waste my time dealing with idiots and liars.  But flying came in a close second.  Can you imagine that???

But I won’t be going to those psychic conferences or The Celebrity Psychic Network.

3.  You are able to resurect one individual from history who will remain at your side to guide you along life’s journey.  Who will you resurrect and why?

Easy.  Mother Teresa of Calcutta (1910-1997).  She lived her life with unshakable faith, invincible hope and extraordinary charity.  I could only aspire to follow in her footsteps, but living with her at my side would be an honor.  What a woman!  What an inspiration to us all.

4.  You are traveling back in time to the Middle Ages.  You can only take one thing with you.  What would you take for your month-long stay?
Call me crazy, but I’d just HAVE to take a camera! 

It was also called Medieval, encompassing the 5th to 15th centuries in Western Europe.  No doubt for most those times were often harsh, uncertain and dangerous.  I would be wealthy and live on a profitable estate. 

Of course, I would be the Annie Liebowitz of the 15th Century.

I would hear childhood stories about William the Conqueror, Richard the Lionheart and Edward III.  I would have met and photographed William Wallace and Thomas Aquinos, Dante and Joan of Arc.

And after a month’s time I would return home to a long-awaited hot shower and watch American Idol that I recorded while away.  I would order pizza delivery, click my heels together and chant “There’s no place like home.”

Then I’d get a book deal, a movie deal, and a manager.  Those pictures will be worth millions.

5.  The world is becoming overly crowded.  It is your turn to decide which country gets sent to a different planet.  Which one will you choose?
This required a little research.  So the decision I made was based strictly on numbers.  Currently, the two largest populated countries on earth are China (1,330,044,605) and India (1,147,995, 898).

Numbers don’t lie.  At least that’s what my high school geometry teacher told me.  If China and India blast off somewhere else, the rest of the world will have more time to get their collective acts together on a humanitarian, political, economic and ecological level.  This would definitely reduce our carbon footprints.  Just ask Al Gore.  Like I said, it’s strictly about the numbers.  And by the way, the United States of America comes in with the third largest world-wide population.  Just missed the shuttle, folks.

"These people will never learn."

There should also be room on the shuttle to also include:  Michael Jackson, Paris Hilton,  greedy over-paid bonus-bloated Wall Street millionaires, Axel Rose, Wayne Newton, Dr. Phil, Kim Jong (since I didn’t wack his head off when I was Queen), All of the Orange County Real Housewives, Rowan Atkinson, Carrot Top, Gary Busey and/or Jeff Conaway, Ann Coulter and Sarah Palin (they can sit together). And if you have any suggestions, add them to the list.

Remember this is STRICTLY VOLUNTARY for the good people listed above.  And I’m not saying anybody should die.  I’m assuming the planet they’re headed for is safe and you can breathe without a mask, and the cost of living there and transportation, etc is NOT TAKEN OUT OF MY TAX DOLLARS.  The Wall Street dudes will pay for the elective rocket ship out of their slush funds before they drank the Kool-Aide.

Here are the rules for anyone else who wants to be interviewed:

1.    Leave me a comment saying, “Interview Me.”

2.    I will respond by emailing you five questions.  (I get to pick the questions.)

3.    You will update your blog with the answers to the questions.

4.    You will include this explanation and an offer to interview someone else in the same post.

5.   When others comment asking to be interviewed, you will ask them five questions.

HAVE FUN  🙂

Four Things Meme

I picked this up from the Vaguetarian Tea Room (thanks Teeni) and am writing about four things.  Not tagging anybody here, but if you’d like to comment or take it on yourself, be my guest!  Since it’s January 4th, writing about four things seems like a good idea.  Here goes …

4 Places I go over and over:

1.  Work

2.  Home

3.  Kirkwood Nails (manicures = sanity)

4.  Drugstore

4 People who e-mail me regularly:

1.  My sister

2.  Peggy

3.  Chip

4.  Lisa

4 Favorite places to eat:

1.  Peggy’s house because EVERYTHING she cooks is terrific

2.  King Doh (it’s not Italian)

3.  Maggiano’s

4.  My place  🙂

4 Places I’d rather be:

1.  My sister’s living room or deck

2.  Waverly Beach, Lake Superior

3.  Kohler Andre Beach, Lake Michigan

4. Home, preferably not cleaning or doing laundry

4 TV shows I could watch over and over:

1.  The X-Files (quite the fan I am)

2.  Weeds

3.  The Dog Whisperer

4.  How Clean Is Your House?

4 Movies I could watch over and over:

1.  Dave

2. Out of Africa

3. Back To The Future

4. The Blues Brothers

4 People I hope will respond:

I only get 4?  Hell, I’ll settle for just one  🙂

A “B” Meme

B is for .....

Joan is one of my favorite people in the entire blogosphere.  Sweet, honest, and a good sport about all things meme, she tagged me  (probably because I jumped up and down and waved my arms and shouted “Pick me! I want a letter!)  So here are the rules if you want to play along.

You leave a comment on this post and I’ll assign you a letter.  You write about ten things you love that begin with your assigned letter, and post it at your place.  When people comment on your list, you give them a letter, and the chain continues on and on.

You can leave a comment and not be assigned a letter if you want.   Just let me know if you want a letter to keep this going.

Joan assigned me the letter B.

At the tender age of 8 or 9, I became a Beatlemaniac. I still am.  They were (and still are) the best band ever in the history of the universe.  Am I going a little bit off the deep end with this declaration?  I don’t care. Their songs are timeless, and their talent for writing music and lyrics has never been duplicated.

Paul is cute. George is cool. Ringo is funny. John is my favorite.

#1 B = The Beatles.

#2 B= Beads. Specifically, beads to make jewelry with.  I’m not a pro at it, but thoroughly enjoy making bracelets and earrings.  Lately, it’s been a challenge doing this because of my 2 cats.  They think the jewelry stuff is their personal toy … like everything else in the house.  How dare I disrupt them chewing on wires and batting around expensive crystal beads!

#3 B= Babies. Need I say more? When I retire I want to volunteer rocking babies in the hospital nursery.  It doesn’t get any better.

a girl's best friend

#4 B= Bling. Diamonds are my birthstone.  The more I have, the better I feel. It’s a wardrobe essential, even if they’re on loan from Harry Winston for the red carpet event.

#5 B= Bitch. It’s a noun, a verb and an adjective.  How versatile!  You can say it as a 2-syllable word, as in “Bi-atch”

#6= Butterfly. No, I’m not getting all sentimental and girlie girl here.  For those of us with systemic lupus, the butterfly symbolizes the fight against lupus and hope for a cure.

#7= Broadway. As in New York’s theater district.  It’s always a thrill for me to go there.  Great upbeat energy and entertainment.

#8= Bacon. Bacon pizza.  Bacon and eggs.  BLT sandwiches. Bringing home the bacon.  Yum 🙂

#9= Best Friend. You know who you are.  😉

#10= Bed. I love my bed.  It’s soft and cozy, with lots of pillows and soft sheets.  It’s the perfect place to relax and read.  Charlie and Tig also love my bed.  Actually, they think it’s THEIR bed and they’re allowing me to use it.