On A Mission

These are my friends BB and Rosebud-- They are cousins, best friends and two determined nine year olds on a mission.

Despite a very serious kidney disease of her own, Rosebud (pictured on the right) fund-raises all year long for lupus because her mom has the nasty disease. With BB by her side every step of the way, you'd be blown away by the amount of support and money these two dynamos raise... All of this while Rosie is fighting to keep her kidneys functioning.

This week the girls are having a huge bake sale and then on Sunday they are running in the 5K Lupus International Race For Life. Here's what Rosie says about it in their own words...

Why I run …


I run the Lupus Race for Life to help people who are sick, like me. I have HSP IgA Nephropathy. It’s not fair to have people feel the same way I do. People with lupus go through some of the same problems as me.


Running this race makes people feel good inside—those who are sick and those to can run. It’s because we all come together to make a difference. Even if you are sick like me, you can still make a difference. Like George Lopez does for kids with kidney problems at the Painted Turtle Camp. I got to meet him this year—he was really nice and funny too!


So here I am. Trying to make a difference.


I don’t feel good when my mommy is sick. It makes me sad. I am the only one with kidney problems in my family.


I help people who I don’t know, but I am helping the most important person—my mommy who has lupus. What’s better than a daughter and mommy relationship?


My favorite hobbies are running, surfing, pitching and relaxing. I run every year. That means I am helping myself and people with lupus feel good.


I won first place when I was four years old for the 1 mile. It was hard, but fun. Even if you just take a step at least you try. I just really want you to try. Last year I came in last, but I finished. I didn’t give up.


All you have to do is participate—run, walk and/or give. So why not? Plus, after the race, you can get breakfast. They serve pancakes, sausage, eggs, tortillas and fruit.


Will you run the race with me and help people with lupus?


You will feel good about yourself!


xo Rosebud

I adore these girls and I myself have lupus so I especially appreciate their efforts. Please help me cheer them on this Sunday October 2nd. Make a pledge, say a little prayer or read more to understand lupus.

Thanks a million.

www.LupusInternational.com

Until next time...

Joanna J.  aka Lemon-Aid

Former Sun Worshiper

I used to be a sun worshiper floating around on a raft in the swimming pool for hours at a time perfecting my tan.  Oh yes I did!  That was back in my teens and well into my 20s *ahem*the*1970s*and*80s*.  I sort of knew better but a tan was a tan and I wanted one.

In my early 30s, each year, I spent the week between Christmas and New Years relaxing on the beach in Maui-- soaking up the rays and sleeping 20 out of 24 hours, waking only long enough to eat meals and rollover when my then boyfriend, now husband, would nudge me.  I wasn't sure why I was so exhausted all the time but I assumed vacations were for resting and didn't give it a second thought.

Then I was diagnosed with lupus and the you know what hit the fan.  No more sun and no more suntan for this girl-- Well almost.  First I spent a few years in denial and continued to tempt fate by spending way to much time in the sun-- my skin unprotected.

The sun's UVA and UVB rays can kick-start auto-immune responses in people with lupus causing a butterfly-shaped rash across the nose and cheeks or trigger lupus flairs including joint pain and fatigue.  Of course, being the smarty pants that I was, I ignored the importance of good sun sense and continued to tan.... until I got that nasty rash.  Then, I learned my lesson big time and have the remaining facial discoloration to prove it.

The first time I got slammed with the rash was after a week-long gardening project in the glorious California sun.  The red rash across my face was definitely lupus related and there was little I could do at the time but ride it out and reverse the err of my ways in the future.  The remaining results of my foolishness are half inch wide, half moon shaped, brown patches on my cheeks that some 15 years later are still present.

I see a cosmetic dermatologist on a regular basis to try to diminish the brown spots but typical "laser peels" aren't an option because of my lupus.  Bleaching creams have helped somewhat but still, the brown patches remain.

Today, I follow my doc's orders and slather myself in sunscreen-- He actually recommends the cost-effective, over the counter, Neutrogena SPF 85 which, if I let it absorb for a full 15 minutes, doesn't leave me feeling like a giant grease ball.  My second choice is the more expensive Lancome's Bienfait UV SPF 50+ for the face which is fabulous under make-up.

And I put sunscreen on usually twice a day-- On my face, neck and arms-- any area that's not covered and could see the light of day.  I generally always wear long sleeves and pants or skirts but I'm mindful that when I pull my sleeves up, even when I'm driving, the sun can get to me so I either pull the sleeves back down or apply more sunscreen.

Then there's the gigantic hat collection--  The brims on my hats-- not the actual number of hats.  They're all the size of a circus tent.  Seriously, you could spot me a mile away wearing one, but I'm bound and determined to never get a sun induced rash again or expose my brown patches to the harmful rays-- because the sun will make them darker and who wants that!

As I type this post, I'm sitting at a lovely resort in Palm Springs, California.  It's a blazing 108 degrees out.  Covered in sunscreen, wrapped in a towel, and wearing long yoga pants and a long-sleeved cotton blouse, my hat helps protects me from any possible glimpse of sun that might peak through the shade tree I'm under. 

The pool waiter has brought me about three gallons of ice water today to help me stay cool and more than a few people have given me funny looks.  I'm used to it.  This is not my first rodeo-- and not my first time in the desert-- or a beach-- sporting event-- outdoor flea market-- farmer's market-- or county fair for that matter.  I love being outside in the sun.  Sure being covered from head to toe is H.O.T. (and a little odd looking) but hiding inside and missing all of the fun is, well, not fun at all.

Have you had problems with the sun in dealing with your lupus?

Click HERE for sun protection info from Lupus International.com

Until next time...

Cheers, Joanna J. aka Lemon-Aid
photo credit: © Julydfg - Fotolia.com

Invisible Illness Week

Generating awareness for "invisible illnesses"-- you know, the less known,less sexy ones, including lupus and it's related diseases, is a topic of conversation in Blogland this week.  Hosted by Lisa at Invisible Wellness here's my offering to raise awareness of my "invisible disease"...


1. The illness I live with is: Systemic Lupus 


2. I was diagnosed with it in the year: 1994 right after the big Northridge, CA earthquake that threw me into such a huge flair up it was (finally) easy to diagnose.


3. But I had symptoms since: Probably high school


4. The biggest adjustment I’ve had to make is: Learning how to respect the illness. It's not as easy as it sounds.


5. Most people assume: I am far more fragile than I am which just goes to show assumptions aren't all they're cracked up to be.  


6. The hardest part about mornings are: Trying not to throw the alarm clock across the room and my very stiff ankles


7. My favorite medical TV show is: Does "General Hospital" count?


8. A gadget I couldn’t live without is: Sadly, my iPhone but my electric toothbrush is a close second.  It's way easier to use when my hands are sore than a manual one.


9. The hardest part about nights are:  Climate change!  The meds sometimes make me really hot or really cold.


10. Each day I take between 10 and 19 pills & vitamins.


11. Regarding alternative treatments I've:  Tried several and found yoga and breathing meditation to be the most helpful.  Most of the others for me were a waste of time and money.


12. If I had to choose between an invisible illness or visible I would choose:  I'm totally vain.  I'd definitely take the "look good feel bad" kind but I sure wish more people knew about the disease and could get diagnosed sooner.  


13. Regarding working and career:  I was very lucky and worked successfully from home for 15 years... mostly in my pajamas.


14. People would be surprised to know: How much I miss being out in the sun.  It's hard being covered from head to toe with a hat the size of a circus tent when I'm outside, especially on a hot day.


15. The hardest thing to accept about my new reality has been: Prednisone is a huge help but, i yiyi what it does to my weight.


16. Something I never thought I could do with my illness that I did was:  Blog about it.  I didn't talk about my lupus for a very long time.  I was afraid it would have a negative impact on the career.


17. The commercials about my illness:  Are few and far between.  There is no "big money" drug to advertise so there aren't many TV commercials for lupus.  


18. Something I really miss doing since I was diagnosed is:  Spontaneously doing things-- like opening a jar or better yet, picking up a baby.  Some days the pain makes that nearly impossible.


19. It was really hard to have to give up:  The idea that I could work full time in "Corporate America" with traditional "9am - 5pm" job responsibilities. 


20. A new hobby I have taken up since my diagnosis is:  Yoga.  Before lupus, I'd have never given it a second thought-- Who knew!


21. If I could have one day of feeling normal again I would:  Wake up early, take a ballet class, meet loved ones for lunch, go to the park and hang upside down from the monkey bars with the kids then still have energy to make a great dinner and go out dancing with my husband..... without paying the price for doing all of that the next day.  


22. My illness has taught me: Grace


23. Want to know a secret? One thing people say that gets under my skin is:  "You look so tired." on the rare occasion I'm actually not!


24. But I love it when people:  Make me laugh out loud 


25. My favorite motto, scripture, quote that gets me through tough times is:  "When what you're doing isn't working, try something different."  Wyatt Webb  Simple, right?  But that took me a long time to learn, especially when dealing with my doctors.


26. When someone is diagnosed I’d like to tell them:  "Call me, we'll talk."


27. Something that has surprised me about living with an illness is:  I've learned to appreciate the small stuff that I never seemed to notice before.


28. The nicest thing someone did for me when I wasn’t feeling well was:  An acquaintance arrived at my home unexpectedly and brought all the ingredients for homemade chicken soup.  I was pretty sick at the time and she kept me company while I napped and the soup simmered on the stove all day. 


29. I’m involved with Invisible Illness Week because:  I know so many people with autoimmune diseases and we need all the help, support and awareness we can get!


30. The fact that you read this list makes me feel:  Pretty darn happy!  Thank you.


Until next time...
Cheers, Joanna J. aka Lemon-Aid


Photo Credit: © 89studio - Fotolia.com #25094176 

Let's Get Started

To blog or not to blog, that is the question.  Actually it goes a little deeper than that.


I was 35 years old and a just-married advertising executive when I was first diagnosed with lupus.  It was 1994 and honestly, the only other time I'd even heard of the disease was when a co-worker died of complications from it.


I was scared out of my mind!


Since it was pre-Internet *cough*that*makes*me*sound*ahem*really*old*cough*, I limped to the book store and found a few less than promising and outdated books to read. They talked in terms of "5 year life expectancies" that left me feeling hopeless and lost.  I had no idea where to turn for information, advice or help in dealing with what had been a very long and difficult illness to diagnose.


My Rheumatologist was terrific and informative but unable to soothe my fears or address my then Type-A workaholic personality that was running on empty, so he turned me onto Lupus International (then called a different name) for support and the rest, as they say, is history.


Which brings me to this new blog.  As a Lupus International volunteer, I'll be blogging about life with lupus and the winding road to wellness that I've been on.  I hope to get to know you and vice-a-versa as we share our experiences, a few laughs, maybe some tears and the latest news about lupus and related diseases.


Thanks for stopping by,  Please leave me a comment and I'll stop by and say hello to you too.


Until then...
Cheers, Joanna J. aka Lemon-Aid
Photo Credit: © yellowj - Fotolia.com #26348539