Smooth Seas Never Lead to Skillful Sailors

Good morning and hello Mocha Java and dawn Patrol!

That's right, This morning I was up and at 'em at the crack of dawn literally to get down to my favorite place on the island...Long Beach. To indulge in some surfing (photographing and filming, I too hope to get back on my board myself soon and in the near future...) The beach has always been a place of confidence and almost a safe haven for me for as long as I can remember. The ocean's waves, the salty wind blowing and the warm summer's breeze is something I have always loved, and while lupus keeps me from the beach some days (especially with the photosensitivity) I am still able to get out in the early morning hours and late afternoon and evening... And this morning I needed to clear my mind and headed down to the beach with a cup of Java and my camera. Needless to say the waves were Beautiful and there was a good swell kicking up from what I am assuming is a Hurricane heading our way (August has good surf on the south shore of Long Island due to Hurricane Swells that come from down south.) So this morning it only seems fitting to do a post in pictures and film, that I have edited upon my return home this morning as the sun became too strong around 8:30 am. I hope you all enjoy, and feel inspired as of course, I have shared bursts of wisdom and inspiration throughout the video and clips, and as well as the photos that will hopefully offer you some peace and serenity just as they offer me, creating a Jolt-of-Java Spectacular, if you will. So without Further adieu, here is our unique and most definitely a change of pace post that I hope you all enjoy, sit back relax and enjoy!

Smooth Seas Never Lead to Skillful Sailors...

I hope you enjoyed the video as much as I did filming each and every clip of these locals surfing away, many before they head off to work in the morning, what a great way to start your day. Now, I'd like to share some photographs from the morning's adventures:

And of course for before I leave you for the day, The September and 6th edition of The Lupus Magazine is up! Go Read!! With some fantastic new writers joining the TLM crew and some wonderful new articles to share, as well as new features our dear editor has added to the magazine, it is chock full of goodness, and you won't want to miss out! Be sure to stop by yours truly's new article " Lupus Warriors- that shop in the kids department?" Featuring two brave and quite remarkable young girls facing lupus day in and day out but in very different ways. And of course our page of hope, for all of our fundraising efforts for the LFA, as well as our CHRONICLYsILLy Designs© where we have some brand spanking new products and awareness jewelry and accessories up, 10% of ALL sales are being donated to the LFA! And what would a post be from CHORNICLYsILLy without our Daily Jolt-of-Java!

Jolt-of-Java: "The robbed that smiles...Steals something from the thief..."-Shakespeare

A Lupie To-Do List!

Good morning and hello sunshine!

It's bright and early and as much as I'd like to say I am a morning person because I adore the AM hours, sometimes my bed is just a bit more tempting to stay in for a while longer... But, there are things to be done and I have a busier day ahead of me so we're going to kick our work week off right with some fun on the good old blog, and of course never without a good freshly brewed Mug of Java-licious goodness (I am here and now declaring myself an official "Java Junkie.") So while all of you are waking up or perhaps hitting the pillow (depending on where you're from) We are going to get things rolling over here!

As you all know, last week we ran a week long CHRONICLYsILLy Campaign for Lupus Awareness Week on the blog with the main purposes being to expose as many people to Lupus and raise awareness and educate the public on what Lupus is, what it can do and how it affects each and every person differently, we also shared fun facts about Lupus and each day's post contained resources and ideas as to how everyone can get involved and raise awareness without even leaving to comfort of your home or bed for that matter! We wrapped up our Grand Finale yesterday with our Craft-a-thon weekend, where we crafted for the cause ALL day and night Saturday to create a bunch of wonderful new pieces, some of which have already been listed up on the CHRONICLYsILLy Designs© shop & Boutique! And we have finally released a line of accessories... Key chains! (however, I am still struggling to create a more "manly" or "masculine" line if you will, and as you can plainly see where my challenges lye when our awareness color is purple (alt. orange) and our symbol a lovely and elegant butterfly...Lovely indeed, but not so manly. Any ideas on a more manly item that men could rock would be warmly received and prototyped so please feel free to leave a comment or shoot me and email I am always open to suggestions, that is how the medical ID bracelet chain ID came to me, a lovely woman sent me an email asking if I would be interested in trying it and sure enough they are a HIT! (I love rocking mine now!) But back to business as our Grand Finale was certainly a success we are ready to start our Monday and get in some good laughs as we all roll out of bed this morning, CHRONICLYsILLy Style!

So today I'd like to present you with the CHRONICLYsILLy Lupie To-do List. We have all seen tons of variations of these they are similar to the "you know you have lupus when..." lists that we all have a blast compiling and thinking up clever and comedic new ones so I have decided to give it a whirl and create A very Lupie To-Do List! (Feel free to join in on the fun!)

A very Lupie To Do List!

1. MAKE COFFEE (obviously this is my first priority upon waking...come on... This Java Junkie needs her fix!)

2. Guzzle coffee and a bite to eat so I can take meds (and by guzzle I mean it will be gone if you turn your head for a split second)!

3. Find meds.... Where did I put them? (and how on earth did I misplace a 6 inch by 10 inch medical pill case that is pink, blue, yellow and purple?!)

4. Take Meds- One pill two pill red pill blue pill... You get the picture (and this is where it starts to get fun!)

5. Fight off the PADD-->because when PADD kicks in- That's right folks Prednisone-induced Attention Deficit Disorder, watch out, PADD is soley responsible for the creation of the entire CHRONICLYsILLy Designs shop! It's also the reason I sit here blogging in the morning and get distracted by everything and anything on my desktop or around me, for example a shiny bead that is sitting next to my laptop...what was I saying?...

6. Hit the Pharmacy!--Pharmacy time! You guessed it! A lupie's day would not be complete without a trip to the pharmacy to battle the walkers and sea of shopping carts to the pharmacy counter only to get their and realize that you bring the average age of the people waiting for the prescriptions down to a 78. (...and probably take some more meds this time of day too!)

7. Probably some sort of Doctor appointment fits into your day around here-- It's not uncommon to have a quite a few number of appointments and it can even be difficult to keep them sorted out and to know who you see when and where and at what office, you might also find yourself receiving a phone call from the doctor letting you know you have an appointment... it was yesterday at noon... (Thanks PADD- I'm definitely blaming it on the Prednisone... although I am unsure if it will get me out of the co-pay I still have to pay for a missed appointment but hell it's worth a shot!)

8. Nap time!-- HA! there is always time in my day to nap usually, but chances are it's not going to happen...

9. (This is the point in my day where I have some down time, and usually end up wasting it away on facebook, twitter, you tube etc... and don't even try to pretend like you do not do the same-- yes you all you farmville, cafe world, roller coaster tycoon junkies!--also pop a few pills this time of day!)

10. Watch Jeopardy and Wheel of Fortune!-- That's right me and your 80 something year old grandmother, I rarely miss a night of Jeopardy and Wheel, as Alex and Pat slay me with laughter and their witty and horrendously corny and cheesy jokes... What's not to love! (and more medications end the night and send me off into dreamland where I dream of spoonful days and an endless supply of spoons in my spoon bank)

And that usually wraps up my Lupie to do list on a regular basis/day to day basis. I hope you all enjoyed and I am sure you all have your own TO-Do lists that are quite entertaining and humorous as the life of A lupie is quite a comedic event, I suppose if you were to right a book, it could fall into the Tragic Comedy classification as the humor and positive outlook we all take masks the Tragic illness and villian that is Lupus...Irony and some deep thoughts there huh? WOW! I think I might have hurt myself getting a little to philosophical and poetic all before 8 am! It's time to wrap things up now as my busy day must commence and I will leave you all in our usual departing manner, with our page of hope and just over 2 and half weeks until the Gala (I cannot believe it!) and of course you can check out the CHRONICLYsILLy Designs© Shop & Boutique and see the new key chains and latest medical ID bracelet chains that have been listed, and of course we never part ways without... Our daily Jolt-of-Java!

Jolt-of-Java: "One of the most tragic things I know about human nature is that all of us tend to put off living. We are all dreaming of some magical rose garden over the horizon - instead of enjoying the roses blooming outside our windows today."-Dale Carnegie

The CHRONICLYsILLy Campaign for Awareness Finale!

Good Afternoon as I am Blogging to you a bit later than usual (the craft-a-thon took a bit out of me)

I hope you are all enjoying the lovely (at least lovely) weather on this Sunday afternoon and are ready to kick off the end and our finale to the CHRONICLYsILLy Campaign for Lupus Awareness week! Where we have been learning all about Lupus, fun facts, educational resources and of course getting a little CHRONICLYsILLy in the process! The craft-a-thon aka Crafting for the cause went spectacularly, and there will be some wonderful new items and products going up on the CHRONICLYsILLy Designs© Shop & Boutique as soon as this afternoon! So keep your eyes peeled! I'd like to thank you all for helping raise awareness this week by spreading our Learn about Lupus facts and posting the link to the blog on your facebooks and twitters to help spread the word and raise awareness! Today we are going to wrap things up with our last 3 Learn about Lupus Facts and then get right into our post for the day! So sit back, grab an iced coffee and enjoy!

Learn about Lupus Facts:

Fact #1: Just 20 years ago people had not even heard the word Lupus mentioned and there were little treatments and even obtaining a diagnosis was near impossible because so little was understood. Now just 20 years later, and especially within the last decade there have been many advances made, with earlier diagnoses, careful monitoring and proper treatment Lupus patients can live a normal life span once their Lupus is controlled (although that can be a difficult thing to do for many cases!)

Fact #2: A great resource for learning about lupus is a book written by Robin Dibner called, "The Lupus handbook for women" It is a great collective guide to lupus that helps patients nad even family members and friends interested in learning about lupus and how you can better stay informed and be your own best advocate, well educating you in a simple and easy to understand manner.

Fact #3: The lupus Dictionary according to the Lupus UK site online! Check this out it covers many of the medical terms that can be used and you will hear your doctors and specialists throw your way, never have to look at them again as if they are speaking in a foreign tongue again! Learn the Lingo here!

And that wraps up our Learn About Lupus facts for our Finale of the CHRONICLYsILLy campaign for Lupus Awareness this week! Feel free and I encourage you to share these facts to family and friends and anyone else that may be interested in learning and learning more about your disease to gain a better understanding! And now we will jump right into our post for the day! I hope you are all ready as today, we're getting a little wacky and dare I say a bit Lupie too! I'd like to present you with: Confessions of A Lupie! Digging into all the little lupie things that might not make sense to people that do not suffer from Lupus, here is an inside look... Also this is to reveal all of those little white lies you've ever had to tell to cover up your Lupus or make it seem as if it's "not that bad!" So here you have it the Confessions of a Lupie! Dig in!

Confessions of a Lupie!

- That sunburn on my face that confuses you because you know I cannot go into the sun--> It's called a malar rash and it's a symptom of my Lupus! And as you all know that's my lupus swagger because I never have to buy blush it's a custom shade thank you lupus!

- I love hats any kind of hats, but usually if I have one on it's because my light sensitivity is acting up, I'm not feeling well and/or my malar rash is out and I'm feeling a little insecure from the hair thinning side effects of the medications! (But luckily I can rock a hat! haha)

- I love spandex, not just because they are comfy, and stretchy and cute, but because on days I cannot button my jeans because my hands are too achey they are a life savor--Hence my obsession with Jeggings (Jeans+legging material=Jegging)

- I never knew how truly strong I was until Lupus came my way, and at the same time I never realized how blessed I was prior to it, and to have my health. Luckily, I can kick Lupus ass like there is no tomorrow and I'll be damned if I let it get the best of me--> Kicking ass and taking names style.

- Yes I am badass because I rocked High Top chuck taylor converse all stars with a mini strapless fitted black dress to my friend's 21st birthday party, but believe me as bad ass as it looked, it was more function over fashion because there was no way in HELL I was getting into my heels that night!

- I try to not judge... Especially since being diagnosed with Lupus. To anyone who does not know me I look fine, think about every person you pass on the street and all of things they could be dealing with (Think of how much you deal with your illness that an outsider would never know... ) You can never be sure what someone else has seen, been through or what their hardships in life have been. (however I do also love to poke fun and make my witty and sarcastic comments too so I am certainly not claiming to be an angel here, but I do try to be unbias in forming an opinion of someone!)

-I hate to fill my pill case. End of story, and come every Sunday night when it's time to sit down and do it, I procrastinate like there is no tomorrow and will make up any and all excuses not to do it.

And these are just some of my Confessions from a Lupie... I think this will be a topic I will come back to on a few seperate occasion and add to the list and offer you some more insight into confessions of a Lupie with hopes it gives you a few laughs and for any of you that are not chronically ill, a better understanding of the many ways Lupus and a chronic illness can permeate many aspects of your life that you would not expect.

Time to wrap it up, as I have some new items to photograph and post on the shop with hopes to raise more funds for the LFA we are kicking Butt right now and again I cannot believe the overwhelming support, thank you again. I will leave you with our usual goodbye, a page of hope that has done a wonderful job thus far fundraising and plan to keep fundraising and raising funds for the LFA and lupus research, as well as our CHRONICLYsILLy Designs© Shop, where I am headed over to-- to get some new items posted for you! I send my love and will leave you with our Sunday Jolt-of-Java!

Jolt-of-Java: "If you want to know the past, to know what has caused you, look at yourself in the PRESENT, for that is the past's effect. If you want to know your future, then look at yourself in the PRESENT, for that is the cause of the future." -Majjhima Nikaya

Make your own Holiday! -Happy National Crafting for A Cause Day!

Good morning and why is there NEVER enough coffee?

Ok, So maybe there is plenty of Coffee and I just drink too damn much but either way, I am in need of a refill. I hope you all are having a great start to what appears to be a lovely weekend here on the east coast, with sun-filled skies and beautiful dry crisp almost fall-like weather (one can only hope it's here to stay!) As you all know, there have been lots of "happenings" if you will, on the blog and with CHRONICLYsILLy as of late, and with the latest release of the CHRONICLYsILLy Medical ID bracelet chains selling faster than hot cocoa at a winter festival, I plan on keeping myself busy and crafting ALL day today, as my cousin is coming over and we are "crafting for a cause!" All day long! So in lieu of this, I am creating my own holiday (I am honestly not sure what it takes to go about doing so, but by declaring it out loud I am counting it as an "official holiday so mark it down on your calendars folks! And since it is a Saturday and most of you are off anyway I'm considering it a National one! Dream Big! ) Happy Crafting for a Cause day! That's right August 28th, 2010 a new holiday is born! So get out your finest crafting supplies and get crafting! A great hobby for a Lupie or chronically ill individual for sure, and in light of it, my cousin and I will be crafting a marathon of awareness jewelry that will be going up on the Shop by the end of the weekend! So I'd like to kick off our holiday with our Learn about Lupus facts that we have shared each day this week during our CHRONICLYsILLy Campaign for Lupus Awareness week!

Learn About Lupus Facts!

Fact #1: Some people have what is called "Seronegative Lupus" this means they present all signs and symptoms for a positive Lupus diagnosis, however have a negative ANA and blood work that does not reflect a positive lupus diagnosis. (I did not know this!)

Fact #2: Lupies should wear sunscreen even in the cloudy or winter months, just because you are not laying or basking in the suns rays does not mean you are not getting struck by the rays, and even 10 minutes of exposure during a walk in the morning hours without sunblock can cause inflammation and trigger a potential flare.

Fact #3: No two cases of Lupus are alike. Each case and patient is entirely different from the next, this makes it extremely hard to diagnosis, treat and study.

And that wraps up our 3 learn about Lupus Facts for today! Now, I'd like to pose a challenge to you! I have created my own Holiday and I am going to rattle off a few more Holidays I think should be turned into National Celebrations as well as some holidays that are recognized already on Calendars that you can purchase in stores (That' right they have real ridiculous holidays!) So that we can have something to celebrate each and every day! I'd like you to try and create your own holiday as well, if you do leave a comment on this post with it or on the facebook page/email! And yes, the holidays I am about to share are not made up, they are really existing holidays! I encourage you all to join in the celebration!

Holidays You should be Celebrating...

(for September 2010)

September 3- Sky scraper Day

September 5th- Be Late for Something Day

September 14th- National Cream filled Doughnut Day

My personal favorite that I discovered a few years back--> Talk Like a Pirate day- September 19th 2010

September 26th- National Pancake Day

September 28th- Ask a Stupid question Day

And that is just for the month of September! I myself and a huge fan of Talk Like a pirate day, How could you not be? I hope you all enjoy these holidays and I encourage to celebrate them as each day should be a celebration in itself! And... Let me see you get creative and create your own, and do not forget to take part in our very own Crafting for A Cause Day kicking off this year for the first time ever! If you craft today, a picture with your children, or a painting or build something crafty, send a picture- I'll share it on the blog/Facebook page and we will see how everyone celebrated and rang in the holiday!

And on that note, I will leave you as I am in dire need of yet another refill as I can see the bottom of my 20 ounce coffee jug and am not a happy camper about it, to say the least! So as always, I will leave you with our parting words and links-- The page of hope, as the Gala date approaches rapidly we are still fundraising to meet our goal and keep up the great work and support it is so greatly appreciated, and the link to check out the latest collection in CHRONICLYsILLy Designs© awareness fashion and accessories! (With 10% of ALL sales being donated to the LFA!) ... And of course--Our Jolt-of-Java!

Jolt-of-Java: "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and strong. Because someday in your life you will have been all of these."-George Washington Carver

Laws of A Lupie- CHRONICLYsILLy Rules to Live by

Good Morning and hello Friday (TGIF!- And of course hello java!)

I hope everyone is waking up and getting ready to kick off their weekend, as we enter into a lovely Friday morning here on the east coast, with no humidity and not a cloud in the sky...And big news! The CHRONCLYsILLy Designs© Awareness Jewelry have just released two new lines-- That's right two! We have the brand spanking new CHRONICLYsILLy Signature Collection (which is my personal fave thus far, as they are vibrantly bright and vivacious and so happy and fully of joy to spread awareness!) and upon request (and what a fantastic idea I might add!) we have just released CHRONICLYsILLy Medical ID Chains! Simply take your own personal ID tag and clip it right on our traditional double clasps so you can be safe (wearing your Medical ID at all times of course) and in fashion (affordable fashion I might add, because when I went hunting for a "cute" medical ID bracelet I had no idea it was going to be like hunting for a needle in a haystack) So pop on over and check it out, I am excited as to how much we have raised for the LFA thus far and hope we can continue to do so!

As you know we are in the midst of The CHRONICLYsILLy Campaign for Lupus Awareness Week here on the old blog doing everything we can (however big or small it may be!) to raise awareness and spread the word/educate the public about Lupus. We've covered a great deal of phenomenal resources thus far and I look forward to sharing more with you as we press on through the weekend and raise awareness! So without further adieu, Let's jump right into our Learn about Lupus facts for the day! Remember, these are here for you to share, copy and paste them anywhere you please, your facebook status, twitter updates, etc.

Learn about Lupus Facts!

Fact #1: Lupus is an autoimmune disease and is commonly referred to as an "Invisible Illness." An invisible illness means that you cannot necessarily tell that the person is sick simply by looking at them, thus their illness seems to be invisible.

Fact #2: In the 1990's, The government set aside funding for research for autoimmune diseases, especially Lupus, however, in the midst of it all, the AIDS epidemic hit, and the money was taken and used for AIDS research instead. That is why it is crucial we raise funds so that research can continue and make progress with hopes of a better quality of life and a cure.

Fact #3: Stress does not cause Lupus. However, Stress can trigger a flare, so it is important to find ways to manage your stress at all times, regardless of the situation at hand (I know-- Easier said then done, especially in the life of a lupie but try!) Look up ways you can de-stress, for example, my beadwork helps me de-stress and re focus my energy on something positive and productive, like an outlet!

That concludes of Learn about Lupus segment for today! I hope you all enjoy our facts and are spreading them like wild fire so we can get the word out about Lupus and educate people! Now, to the post for the day! Today, I'd like to talk about the Laws of a Lupie/Rules to live by for the chronically ill, according to a Lupie. Feel free to add to the list, on the comments section or Instant message our AIM account/facebook message the page and share!

Rules to Live by for the Chronically Ill: Laws of a Lupie

1. You cannot fail if you never give up.

2. Listen to your body at all costs, I know it is hard sometimes, but no one knows your body better than you.

3. Don't let anyone tell you that "you can't" do something, you and only you can make that decision.

4. Don't wear granny panties-- You never know when you'll end up rocking a hospital gown, and the last you want is to be caught in a giant pair of granny panties when your cute and single male nurse walks in (they get good benefits ladies!)

5. Use the "good" china today, instead of saving it for a "special occasion." Today in itself is special enough, celebrate it.

6. Play the lottery-- You have to be in it to win it folks!

7. Do not hide who you for anyone else, if they cannot accept you for the way you are, they are not worth your time in the first place.

8. Never wait until the last minute to fill a prescription... I can guarantee if you do, that you will run into issues, whether it be the pharmacy running out, or having to battle through a parade of walkers on your way to the counter. Save yourself the stress and get there a few days earlier.

9. Never settle for a doctor you are not content with. I cannot stress this enough. Your doctors/team of medical professionals are people you must be comfortable with and trust, since you will be working closely with them. (unfortunately, McDreamy isn't a real doctor-- I checked so I am settling a bit...But you know what I mean...)

10. If it isn't broke don't fix it. Why make more work for yourself.

11. Ask questions. Alot of them. It's one of the best ways to learn and educate yourself. People ask their waiter and waitresses more questions about their meal than they do their doctor's about their health.

12. Don't let what you can't do... Stop you from doing what you can do.

13. Life is a gift-- Even though it is not always wrapped with a pretty bow.

I am going to wrap up my thoughts there, even though I could go on and on with these for days, literally, I love the number 13, Lucky 13, so I will conclude of Rules to live by and Laws of A Lupie on that note. And of course I will depart ways with you to refill my now empty Jug-O-Java Before getting my day started. I will leave you with our normal parting messages, the page of hope where we are fundraising for the LFA and their grassroot efforts to gain funding to assist and support Lupus patients and research, our CHRONICLYsILLy Designs© at the top and side bar of our page, and our Jolt-of-Java!

Jolt-of-Java: "When life takes the wind out of your sails... It's time to test the oars"-Robert Brault

Lupus Love!

Good Morning and Thank goodness for my 20 ounce Vat of coffee!

It's a beautiful day here which is warmly welcomed after the 5 stormy and gloomy days that preceded it, and I am looking forward to a nice relaxing day. As you know we have been spreading the word and raising awareness all throughout this week as part of our CHRONICLYsILLy Campaign for Lupus Awareness Week! And as we press on right on into Thursday, I look forward to sharing with you some wonderful "Learn about Lupus" Facts this morning as well as sharing a great resource that I stumbled upon in my own research that I think you all will enjoy as much as i did.

So let's get right into on this Thursday morning and start off with our Learn About Lupus Facts! Remember each post this week during our Campaign is focusing around ways you can help spread awareness and get involved, our Learn about Lupus facts is just the start, and a great, easy way to spread the word and educate others as to what Lupus is and provide some fun facts as well. So if you'd like to take part in our campaign, copy and paste one or more of these facts and share them on your Facebook status, your Twitter status or perhaps in an email to family and friends that are interested in learning more!

Learn About Lupus Facts!

Fact #1: I'd like to introduce to a new page, that I highly encourage you all to check out and see what our newest Lupus warrior/friend is doing to raise awareness, you won't believe it! -->

RunFlyRun! Check him out at his page and see all the incredible things this man is doing to raise awareness for a cause!

Fact #2: There have been no new treatments for Lupus to come out since the 1950s. If Benlysta gets FDA approval it will be the first drug in more than 50 years to enter the Lupus Community.

Fact #3: There is no specific test for diagnosing Lupus. This is what makes it and other autoimmune diseases and conditions so difficult to diagnose. They can also mimic other illnesses, such as viruses like mono and express themselves differently in each and every patient. It is more of a process of elimination and gathering of blood work samples and tests along with having at least 4 of the 11 approved criteria listed for Lupus by the National Rheumatology Board.

Those are our three learn about Lupus facts for today and now we will get right into business with our topic for the day, Lupus Love. Lupus Love is a "child friendly piece of literature that helps explain SLE Lupus to young children who may have a parent or an adult in their life that may be affected with SLE. THis book is a fun filled, rhythm rhyme pattern with colorful and inviting illustrations." - Tammy Anderson's Lupus love site. Tammy Anderson is the author of this book that was created with a children in mind with hopes that she could provide them wit ha child-friendly resource to help and aid their understanding of a disease that many adults cannot fully grasp. In her Biography on her www.lupuslove.org it states:

"Tammy had dreams of becoming an elementary school teacher ever since she was a child, but after her unexpected diagnosis of SLE that seemed almost impossible. At the time of her diagnosis she was only 12 years old, and during that time there was little to no awareness or knowledge of Lupus. SLE was new to the medical community, was hard to diagnosis and even harder to control. But with the support of her family, the proper medical care and attention, she was able to reach her goal, and now has been teaching for over 10 years... And because of her passion for teaching she was compelled to write this book, as her experience with Lupus make her just the right person for the job!"

A percentage of each book sale is also being donated to the ALR (The Alliance for Lupus Research) and you can purchase your copy of the book right off their Lupus love page linked above as well as make a donation from their secure site. Tammy's contribution to the Lupus Community is one of great importance, as far too often, children are overlooked when it comes to explaining or trying to deal with a diagnosis of a loved one, and Tammy has provided them with a phenomenal resource!

That about wraps up our Thursday post, and of course we will depart with our usual goodbyes, a friendly reminder of our Page of Hope Fundraising efforts with the Lupus Foundation of America as well as the butterfly Gala which is only a few short weeks away! As well as our CHRONICLYsILLy Designs© Awareness bracelets, of which we have some new ones being featured at the shop, and some great new awareness pieces coming to you this weekend! And of course our daily Jolt-of-Java!

Jolt-of-Java: " I ask not for a lighter burden, but for broader shoulders... Remember, A bend in the road is not and end in the road, unless you fail to make the turn.."-unknown

The Lupus Larry Fan Club!

Good morning and will this doomy gloomy weather ever pass? (oh well... At least I've got my Java!)

I hope everyone is waking up with a replenished spoon bank this morning, and is starting their day off right! As you know, we are in the midst of our CHRONICLYsILLy campaign for Lupus Awareness week here on the old blog, and we're just about half way through it, and have done a tremendous job at spreading the word, educating the public and raising awareness! I have seen our Learn about Lupus facts posted on people's walls/status' etc. I have seen posts from the CHRONICLYsILLy page being shared across facebook (especially the extra informative ones!) and am so glad everyone has band together to raise awareness! I have big news to share with regards to the Lupus community this morning and will be sharing it in our 3 Learn about Lupus facts section of today's post! So hold on to your seats (and perhaps your wigs if you suffer from hair loss/thinning!) and get ready for some BIG time news coming your way!

Learn about Lupus Facts:

Fact #1: One of the most talked about up and coming treatments for Lupus, Benlysta, was just recently approved Priority status to be reviewed by the FDA, this after it was orignally fast tracked upon entering the late phases of it's stage three clinical trials. Check out the article for more in depth information and spread the news! It could reach its PDUFA (prescription drug user fee act) as early as December 2010 (that's the end of THIS YEAR!) Heres the link I encourage all of you to send this to friends and family and spread the exciting news! Lupus Drug Benlysta granted priority Status By FDA!

Fact #2: UCLA study has teamed up with the Lupus Research institute and is conducting a study that is focused on men that have Lupus! A great step forward in advancing our knowledge of the disease and particularly why it affects women more than men! Here's the article--> UCLA study identify genetic variation linked to Lupus is Asian Men!

Fact #3: (Hard to follow up after those two stellar facts/shares!) It is known that photosensitivity is very common when it comes to Lupus, but did you know that some flares and Lupies may be sensitive to Fluorescent lighting as well? It's true!

Now that we have shared our Three Learn about Lupus facts for this Wednesday, I'd like to move right along to our discussion for the day. Lupus Larry... The man...The Myth... The legend...Returns... And he's doing big things yet again in the name of Lupus Awareness! That's right, the last time we caught up with Larry and The Lupus Magazine, he was risking his life jumping 21 stories to raise awareness for Lupus! What incredible and death defying stunt is he trying to pull this time, and from Japan? Check out his latest video--Compliments to The Lupus Magazine!

KUNG FU LUPUS!

After that, I think it is safe to say that we are now all proud members of the Lupus Larry fan Club (I mean come on how could you not be!) And if it is alright with you, I'd prefer to the founder, president, vice-president and number one fan! Keep up the great work Larry... By the way... are you single? (Just kidding!) That Lupus Larry is always keeping me laughing! Check out his Facebook fan page and support Larry's cause! He is definitely a cause for celebration when it comes to spreading the word and raising Lupus Awareness! Now... Where can I get those Lupus Larry Fan Club T-shirts?

Remember, that no matter how big or small and act when it comes to raising awareness every little bit counts (It's true!) If you educate one more person a day about what lupus is, that's one more person that may understand a bit better and do something to make a difference and help a worthy cause. Keep up the great work!

We will keep it short and sweet, Just like Larry, for our post this morning and end on a rather humorous note with his latest death defying stunt for Lupus Awareness! As you know the Butterfly Gala is rapidly approaching and we have done a good job thus far with our fundraising efforts! Also, feel free to stop by the page of hope (linked up at the top of the blog!) and feel free to sign the guestbook and if you can make a donation to the LFA... And keep those eyes peeed on our Facebook Page/Blog, as they're will be some new collections added to our CHRONICLYsILLy Designs© Shop & Boutique later this week/weekend!

Jolt-of-Java: "Kite's rise highest when soaring against the wind--Not with it"- Winston Churchill

Laser Tag + Castle Bounce = Laser Bounce... I kid you not!

Good morning and hello stormy weather blowing through my neighborhood! (and of course freshly brewed cup of Java!)

I hope you are all starting your mornings off right with a freshly brewed Cup-O-Joe, and enjoying this Tuesday morning with a copious amount of spoons! I'd like to share some news received yesterday, it's exciting (at least to me! ) and I am happy to announce that CHRONICLYsILLy has been granted membership to wellsphere's community as part of the Lupus Community and the Chronic Illness Community! But wait! There's more! CHRONICLYsILLy was also awared a "Top Health Blogger" in the wellsphere Lupus Community as well!For those of you unfamiliar, Wellshpere is a health website that has numerous features, tools, articles etc. To help and assist as well as educate the public on various and broad health topics ranging from weight loss to Lupus, and from recipes to tools that help you manage your health goals and become active in the Wellsphere community! This also means that they will be further sharing my posts in their community to better support those in the chronic illness and Lupus communities! Check it out!

And now of course Our three "Learn about Lupus facts" for our CHRONICLYsILLy campaign for awareness week (running through saturday!) Take these facts, tid-bits, and random chunks of information and share them, through facebook, twitter, email etc to help spread the word and educate the public more about Lupus and chronic illness!

Fact #1: Millie, the pet dog of the former president George H.W. Bush and and Barbara Bush was diagnosed with Discoid Lupus Erythematosus.

Fact #2: The butterfly rash, also known as the Malar rash, got it's name because of its butterfly shaped appearance across the cheek bones/cheeks and bridge of the nose of the Lupus patients that get it. Although some Lupus Patients never show signs of this rash, it is one of the more prevalant features and "classic" Symptoms if you will, of SLE Lupus.

Fact #3: Our fun fact number three is an interactive quiz I will link here and you can copy and paste to share with others! It's really fun to play along with the family or friends and learn together about Lupus: Lupus: a serious yet little know illness Interactive Quiz! Simply click-Start quiz and select flash quiz to play it interactively!

That wraps up our three fun facts for our "Learn about Lupus" portion of this week's CHRONICLYsILLy Campaign for Lupus Awareness! Now let's get down to business! I'd like to present you with something that was brought to my attention as I drove down one of the busier streets in my town yesterday-- LASER BOUNCE! I kid you not. What do you get when you cross Laser tag and inflatable castle bounce arenas? Apparently Laser Bounce is the correct answer! Was there ever such a creation that was more suited for the chronically ill? I think not. For all of you Lupies and CHRONICLYsILLy individuals out there that have a passion of laser tag but your aches and pains from your chronic illness prevent you from getting close to the ground and rolling around on surfaces that are all to hard and dangerous? Do you have a secret love for inflatable castle bounces (I sure do!- I wish I was kidding but ask anyone, I am unhealthy obsessed with Castle bounces and always have been!) Well if you do, your in luck! Laser Bounce is here and here to stay! How could a concept as fabulously constructed and well thought out as playing Laser tag in an inflatable arena of comfort, safe from harms way and any potential risk of injury not hit the big times! Believe me when I say I will be stopping off at Laser Bounce to scope it out more and see what these shananigans are all about, it seems almost too good to be true! Check to see in your local listings if there is a Laser Bounce near you! (I am unsure as to how long the one around here has been in existence, and shocked I have not found out about it sooner!)

* Disclaimer: No studies have proven that laser tagging and/or the laser itself is damaging or cause of risk for Lupus patients (although we do not recommend starring directly into the laser for prolonged periods of time!) Also remember to stay hydrated, it is easy to get caught up in all the excitement, but remember, that prednisone can bring on a bout of dry mouth unparalleled o that of one you might experience in the middle of the Sahara desert.

And on that note, I'll leave you with our usual concluding notes, and of course our daily Jolt-of-Java! Please check out the Page of Hope, where we are raising funds for the Lupus Foundation of America to further support their grass roots efforts and better the treatments and research for Lupus, and stop by the CHRONICLYsILLy Designs© page and check out the latest creations in awareness jewelry (10% of all sales are donated to the LFA!)

Jolt-of-Java: "Nothing can bring you peace but yourself... and remember, Everything has beauty but not everyone sees it..." -an adaption from Ralph Waldo Emerson and Unkown

Did you Know...? CHRONICLYsILLy's Lupie Tid-bit, Fun Facts & Shares!

Good Morning and hello Java (Oh... How I love thee!)

Good morning everyone and I hope you are all having a great day today full of spoons! I'd like to introduce you to the newest resource available to serve you through CHRONICLysILLy-- An AIM account! That's right we now have an instant messaging account that you can add to your own buddy list, and shoot us messages, comments, questions, topics you'd like to see covered etc! So add us and Instant message us so we can add you and better support you and bring you smiles all day long! Our status will be Jolts-of-Java too so if you need some extra Jolts, you're in luck! Also, on a side note and while I have your attention... CHRONICLYsILLy Designs© has gone international and is now shipping overseas!

As you know this week (since Saturday) we started our CHRONICLYsILLy Campaign for Lupus awareness Week...And we have been discussing ways you can raise awareness and get involved without even leaving the comfort of your bed!) as well as educating and spreading the word about Lupus to raise awareness and get Lupus more into the public eye! We have been doing out three "Learning about Lupus" facts daily, that are there so you can copy and paste them to say your Facebook status, your twitter status updates, or perhaps into an email and send them to someone that would like to learn more or the people in your life that you would like to help learn about lupus and educate. Well today, I will of course, supply our three Learning about Lupus facts, along with some "Did you know?" Fun facts and interesting Tid-bits of information about Lupus and Autoimmune diseases! So let's get our day going with our three facts!

Learning About Lupus- Facts to Share:

Fact #1- Lupus often occurs with other Autoimmune diseases and it is not uncommon to have multiple or more than one Chronic illness, in fact, it is more common that autoimmune diseases occur together (overlapping) than they do alone.

Fact #2- An actual "Lupus headache" refers to a specific type of headache that occurs with Lupus patients where the disease is active and there is actual inflammation around the brain that causes discomfort and headaches. (I did not know this until the other day and thought it was very interesting because "Lupus headache" is used as such a blanket term, generally speaking...)

Fact #3- Studies show that men with Lupus (only about 10% of all Lupus patients are men!) have more severe Kidney, nervous system and blood vessel complications compared to female that have Lupus.

There are our three "Learning about Lupus" Facts for this stormy Monday morning, and I'm grabbing a quick refill on my Java... Now that I have replenished my fueling source, Today, I'd like to share with you some Fun Did you know? Facts about Lupus that I found to be quite interesting and even a little Lupie (and of course, they will be presented in our CHRONICLYsILLy fashion!) So without further Adieu lets get down to business!

Did you Know...

The Red Cross is one of the few organizations that now accepts blood donations from Lupus patients, even when they are on therapies such as Cortisteroids and Plaquenil. They state that while Lupus used to disqualify a patient from donating this is no longer the case. If you are interested in donating blood however, it must be carefully and closely discussed with your doctor.

Did you know...

Doctors sometimes use the term "Connective Tissue Disease" interchangeably with "Lupus" because Connective Tissues diseases is an "old school" term if you will that doctors use when discussing Autoimmune diseases.

Did you know...

Lupus does have a genetic disposition... however that does not mean that simply because you have Lupus your child will have Lupus. What this means is that if you have someone who is a first degree relative (directly related) that has Lupus, you are more likely to develop Lupus than someone that does not have any family members with the disease. (I did not know that this is what "genetic disposition meant... did you?)

Did you know...

If Lupus is left untreated, it is difficult to predict what would happen because Lupus is a heterogenous disease. This means it is dependent upon the various manifestations each specific case of lupus has. Someone could leave their Lupus untreated for years and be virtually symptom free, while another person who's lupus manifests itself through organ involvement would be in immediate danger to not treat their lupus. (Please do not think you can stop taking your meds and your Lupus will be fine! This was just a fun fact that I was unaware of and thought might be of interest... It really shows the diverse ways Lupus presents itself and how unique each case is! So keep taking that prednisone... )

Did you know...

Diet and nutrition can in fact help with lupus. Eating foods that are particularly high in Omenga-3s are beneficial due to their anti-inflammatory agents. It is recommended that Lupus patients increase Omega-3s in their diet (hey it couldn't hurt at this point right!) and eat a well balanced diet. Antioxidants are also a big bonus! So drink up that pomegranate juice or pour a glass of red wine and treat yourself-- After all... It's for the Lupus!

Did you know...

There are many symptoms of Lupus and it can sometimes be difficult to understand what is directly from the Lupus and what is not. Simply stated... It is almost impossible to tell, unless you have had those symptoms prior and the doctor has indeed confirmed they are related to your Lupus. I'd like to share an article from the Summer 2010 Lupus Now Magazine that I had stumbled upon last night as I was reading the copy that Chelsea from the LFA had brought to me: "Can I Blame it on the Lupus" check it out it's a really interesting article full of information and I had to chuckle upon reading the title, especially after yesterday's post, "Blame it on the prednisone!"

And that wraps up our Did you know section for this dark and stormy, doomy and gloomy Monday morning here on the east coast! I hope you all learned a lot (I found them to be really interesting, as I was unaware, especially of the Red Cross accepting donations with doctor's approval--Who Knew?) And I really do recommend the "Can I blame it on the Lupus" article, it was really interesting and I had no idea some of the things I learned (and hence shared here with all of you!) I am off to replenish my coffee yet again, as I seem to have reached the bottom of the mug (they really should make bigger coffee mugs... Come on 20 ounces... that's weak!) and will leave you with our Page of Hope (page found at top of blog! on tab!) this morning and our Jolt! You are all too familiar with our Butterfly Gala and know where the find the information, if not--> use our newest feature and Instant Message us! And don't forget to cast your votes for the 2010 Blogger's Choice Awards... Browse the page a bit there are a few other Chronic illness blogs to vote for as well! And before we leave I'd like to share with you a song, "her diamonds" written by Rob Thomas for his wife, who suffers a rare autoimmune disease (that the explain as being similar to Lupus) It's an amazing song and I think you will all enjoy it and appreciate it for its honesty and it's emotions: Rob Thomas- Her Diamonds- Acoustic (I have an unhealthy obsession with Acoustic songs!)

Jolt-of-Java: "Sometimes the hardest thing and the right thing are the same..." -The Fray

Blame it on the Prednisone!

Good morning and hello rainy day and freshly brew java (did I mention achey joints?)

I got a semi-decent night's sleep and I am very content with that considering how my sleeping habits have been these last few weeks. I also, (fingers crossed please!) seem to be improving with regards to my vascular issues, the tachycarida, and the redness and swelling of my legs. But I do not want to jinx it in the least bit so Shhh! Let's keep it on the down low, shall we? I hope you are all feeling well this morning, as I awake to a not so pleasant day, although a rainy Sunday does sound quite relaxing and I think it will be a restful day around the house for me.

I'd like to begin our post with our three facts for the day about Lupus that we can all spread via our facebook pages, twitter status', email etc. To help educate and spread awareness about Lupus, which is part of our CHRONICLYsILLy Campaign for Lupus Awareness taking place all this week!

Fact 1: 90% of Lupus patients are women.

Fact 2: There are 11 American College of Rheumatology Criteria for lupus. This is how Lupus is diagnosed. You must have at least 4 of the 11 listed and approved Criteria.

Fact 3: No two Lupus patients or cases are alike. Lupus manifests itself differently in each and every case, making it not only very difficult to diagnosis, but also very difficult to treat and research to find more effective lupus specific treatments.

Those are our 3 Learning about Lupus facts for this Sunday morning! I hope you share them with any and all that you think might be interested in learning about lupus, and a big thanks to all that shared our facts yesterday and are banding together to raise awareness!

Now! Let's get a little CHRONICLYsILLy! It has been a long week for all of us and in light of a relaxing and comfy Sunday ahead of me, I'm feeling extra witty and a bit sassy this morning. Well guess what--> I'm going to blame it on the Prednisone! That's right! You heard me! GOD DAMN PREDNISONE! (go ahead give it shot it feels good!) Any one who has ever taken a higher dose or a long duration dose of this drug knows exactly what I am talking about. A drug that almost seems to do more harm than good (but in the end usually pulls through for all of us...Ugh!) that comes with a laundry list of side effects and medical complications. So today, in honor of a long week that was full of ups and downs, we are going to compile a list of things you can feel free to blame on prednisone (and this list does not end here, please feel free to tack on comments at the bottom of the page and add your own as well!)

Blame it on the Prednisone!

- I feel exhausted all day and then when it comes to time to lay down for bed, I am wide awake-- Blame it on the prednisone!

- I feel as if I cannot think straight and why the hell am I alway so confused and foggy?-- Blame it on the prednisone!

- My face has ballooned up and I look like a squirrel ready to go into hibernation storing food in my cheeks--Blame it on the prednisone!

- My appetite is equivalent to that of a man that just completed the Iron man triathlon-- Blame it on the prednisone!

- I feel overwhelmed with joy one minute, and the next I am biting your head off because how dare you greet me a good morning-- Blame it on the prednisone!

- I am now taking 3 other prescription medications to cope with the side effects of my prednisone-- I am 100% blaming that on the prednisone!

- My skin is excessively dry and my hair is brittle and thinning-- Blame it on the prednisone!

- I liked watermelon yesterday, Today I HATE IT! How come you can't remember that? -- Blame it on the prednisone!

- I cannot focus on anything because I am too focused on everything!--Blame it on the prednisone!

- I AM STILL a nice person, I just have an extra Sassy side now and if you say something or do anything that even remotely bothers me I will call you out!-- Blame it on the Prednisone!

- Yes! I am going to blame EVERYTHING on the Prednisone-- Blame it on the prednisone!

- Wait... What we're we talking about? --Blame it on the prednisone!

I could go on for hours with this list, and Im laughing as I sit here and 5 more jump into my head, as Im sure they are leaping out of yours and screaming to be added to the list that is never ending! And remember--- If all else fails-- blame it on the prednisone!

That concludes our post this morning and of course I will leave you with our usual departing links and tid bits of information! The Butterfly gala is only 4 weeks away and I am still fundraising for my goal-- and hunting for a pair of shoes to go with my dress lol! The page of hope is going great and I'd like to extend a thank you to all of you who have contributed--signed the guestbook-- and are doing your part to raise awareness and spread/educate others about Lupus and living life and living well with a chronic illness! I'd also like to thank everyone for their support with my latest endeavor (thanks to some PAD-Prednisone attention deficit disorder) I opened up shop and the CHRONICLYsILLy Designs© is not only raising funds for Lupus awareness and research! Again thank you all for your support! And of course-- Our daily Jolt of Java to start our Sunday mornings off right! (Ps- Keep your eyes peeled for some bigger news of sorts to be released later this evening/early tomorrow morning!)

Page of Hope- Nothing is Kim Possible!

Butterfly Gala Tickets and Tables!

Jolt-of-Java: "A thousand words will not leave an impression so deep as one deed..." -Henrik Ibsen

Learning About Lupus-Unique, fun & even Creative Ways You Can Raise Awareness!

Good Morning and hello crack of dawn?

(Ok so I guess this is how it's going to be...Huh Lupus? I take my bed time medications and a codeine around midnight, and as soon as the pain meds begin to wear off...I'm up?!...I think me and Mr. Codeine need to have a little chit chat about how this is going to work!) Regardless, I am in need of some Java but refusing to move from the comfort of my bed (Add it to the reasons I love a laptop!-Blogging From Bed this morning and loving it!) So I am a bit uncomfortable this morning but has a good day yesterday that I certainly cannot complain about that ended with a lovely family Barbeque, and what better way to end a nice day than with your family (I truly love mine to death and do not know what I would do without any of them-- I am extremely blessed and would like to thank each and everyone one them-- That's right Aunt dot, uncle Lou, Aunt Joan and Uncle Mike-- It's your official SHOUT OUT!-- and of course Momma-dukes and Poppa Bear and the my Little (5 inches taller than me) brother! For all the love and constant support they offer me day in and day out and for always supporting m endeavors--Even if they are a bit Lupie!) ! As you all know, I met with the lovely (and she is a doll!) Chelsea Kasai who is with the Lupus Foundation of America for brunch yesterday (what qualifies it as brunch--I am always curious!) and we had a wonderful time. I came away from our meeting with a lot of fantastic information, Ideas, and resources that I am overjoyed with excitement to share with you. and of course I will share in our CHRONICLYsILLy style that we all have come to love (you know you cannot get enough of my Sass!) So today for our post this morning, I'd like to talk about ways we can all help raise awareness and educate the general public as well as those that are in our own lives about lupus (and you'd be surprised at just how easy some of them are to do and it really can make a big difference! There is volume in numbers, yes, but every little piece of information that is put out there, if read by one person, it one more person that is know a bit more educated about Lupus!) Now of course, there is always our fundraising for Lupus research to get funding necessary for clinical trials, new drugs that are coming out in the market and being tested for more lupus-specific treatments etc... But as many of us know, as much as we would like to donate, the money just simply is not always there, so if you can donate a few dollars to the LFA when it is available! Great! Every single dollar counts- but if not you can still do a ton to help raise awareness and get involved!

So I'd like to offer you some ways you can get involved, be active (some ideas you won't even have to move from wherever you may be, say your bed?) and take part is getting the word out there about Lupus, what it is and what needs to be done to spread and raise awareness!

Ways you can get involve, Raise Awareness and help Educate about Lupus (most of which you can without leaving the comfort of your bed... Now that's my kind of raising awareness!)!

- Learning about Lupus Facts! - This week (starting today, Saturday August 21st, 2010 through Friday August 27th) I will be offering three Lupus facts a day on my blog! Some are general knowledge facts, others may be in regards to Lupus treatments, symptoms, and even popular culture such as celebs that are involved and taking part in the efforts etc. These facts will not be lengthy, and if you would like to help spread awareness and educate the public simply, copy and paste one of the facts you like best (or all of them if you like!) to perhaps your Facebook status- your twitter account- in an email that you send to your friends, or maybe you'd like to print them out and post them somewhere around your house or share them with people that way! This is a simple way we can share facts about Lupus and help educate and inform the public as to what Lupus is! Here are our three facts for today!

Fact 1: ( I will start with more basic ones and as our week of awareness rolls on we will get into some more specific facts!) Lupus is a chronic illness. Chronic Illness means symptoms generally last longer than 6 weeks and usually for many years (source: www.lupus.org).

Fact 2: Lupus is an autoimmune disease. Autoimmune means your immune system cannot tell the difference itself and foreign invaders (such as viruses and bacteria that may enter the body) and in response, the body creates autoantibodies that attack and destroy healthy tissue. (source www.lupus.org)

Fact 3: It is believed that 5 million people world wide have a form of Lupus. (source: www.lupus.org)

And that wraps up our first way you can spread awareness and educate people in your inner circle (or others for that matter) on Lupus! As the week goes on our facts will get silly, and entertaining and some even a little sarcastic- but of course will remain light hearted and informative in our CHRONICLYsILLy spirit!

- Write something-Anything for that matter and share it with those you are comfortable sharing it with! - Writing is always a great way to spread news and share feelings/ educate, just think how many books are out there about lupus! And no-- I am not suggesting you drop everything and go write a book about a lupus (if you feel inspired to by all means I am not one to stop you!) But for our purposes a short piece of writing or even a poem, or perhaps a painting or piece of artwork to share maybe an experience you had because of Lupus, or your feelings about it--It is important to show that Lupus does not just affect our health, but that it permeates every aspect of our lives, from what we do on a daily basis, to the relationships we form and build, to our jobs and what we are able to do for work. So have some fun with it and get creative! Then when you are completed, share it! Send it to your family and friends via email-- Post it to your facebook page or to your favorite support group on Facebook-- or if you'd like-- Send it to FansofCHRONICLYsILLy@gmail.com and I would be THRILLED (as you all know I really do love to share works from others and help everyone get s involved as possible-- I find there is a feeling of strength and empowerment that comes with spreading knowledge and taking part in a greater cause!) to share it! Also, The LFA's quarterly magazine is always accepting and looking for pieces to share, especially in their creative corner of their magazine! Check it out here if you are interested in submitting your piece!--> Lupus Now!

- Lemonade for Lupus stand- Get the kids involved! Here is an idea I am borrowing from my dear friend Hannah (you are all familiar with Hannah from her day as a guest blogger here at CHRONICLYsILLy-- if not I encourage you to check out her post-- It was phenomenal!) Hannah held a Lemonade for Lupus stand outside her house one day, to raise money, and awareness for lupus! I used to have lemonade stands all the time as a child and usually raised about 5 bucks in quarters and was ecstatic about it! And while it may not seem like a lot of money, it will really help you children, nephews, nieces etc... Get a feeling of involvement in your life and a sense of giving back and doing something for a cause!

-Become an e-advocate! - What is an e-advocate? Great question! An e-advocate is someone who educates government officials (usually at their local and state level) about lupus, and the resources that are needed (medically speaking as well as health care and insurance wise too!) This can be done through a written letter, email, fax etc. Again, you do not even have to leave your house and you can make a huge difference! And don't be fooled by the name, you do not have to be an expert in government and health care policies and reform whatsoever... Simply stated, share what it is you know about lupus! If you'd like more information on becoming an e-advocate there is at ton of information here-->Interested in becoming and e-advocate!

Create a poster!- This again is something fun you and your children/nieces and nephews/grand children or perhaps even your class (if you are a teacher!) can get involved in! Whether its the good old fashioned oak tag, and construction paper to a graphically designed poster, creating a poster for lupus awareness and hanging it up somewhere public can make a big difference in getting the word out and educating the public-- For example ask your local grocery store if they'd mind you hanging up a poster with some facts about Lupus, or perhaps your local library would like to share a spot on one of their bulletins! Most importantly, have fun with it!

- Check out the Ad Council's latest campaign-Could I have Lupus? - A great step in the right direction to get Lupus into the public eye! And a very clever campaign if I do say so myself! I first saw one of these posters in NYC when I was walking. It was a poster of a girl right around my age (22) and it read: "I am 22. I am a female. My joints hurt every day and Im always tired... Could I have Lupus?" The concept behind this, I thought, was awesome, as it showed an otherwise healthy looking young girl to the public and then associated her with Lupus-- It really got a message across about how Lupus is an invisible illness. Check it out and perhaps share it with your friends, family etc. The other thing I LOVE about this site... They have a place where anyone living with lupus can create a diary for others to see! You can write in daily about what it is like to live with Lupus and offer insight to others as to how you cope and manage your lupus! If you'd like to start your own diary on couldihavelupus.gov check it out here--> Could I have Lupus- Create your Diary!

And these my friends, are just a few of the many ways you can get involved without having to even leave to comfort of your own bed or couch (for most of them!) I hope you all enjoyed and learned a little bit about Lupus and had some fun while doing so! Hope you are all getting your weekend's started off right and have a lovely day ahead of you-- I am off to make some awareness bracelets and brain storm a "mens line" keep your eyes peeled I am working on it for CHRONICLYsILLy Designs©! I Will leave you all now with our usually concluding posts of our page of hope if you would like to make a contribution on behalf of the LFA for lupus research, and if not please feel free to stop by anyway and sign the guestbook!-- I love reading all of the positive feedback and comments from all of you each day! And of course our Jolt-of-Java to leave us all feeling a little inspired and ready to go!

Page of hope-Nothing is Kim Possible!

2010-Blogger's Choice Awards-Cast your vote!

Jolt-of-Java: " Life is an opportunity, benefit from it. Life is beauty, admire it. Life is bliss, taste it. Life is a dream, realize it. Life is a challenge, meet it. Life is a duty, complete it. Life is a game, play it. Life is a promise, fulfill it. Life is sorrow, overcome it. Life is a song, sing it. Life is a struggle, accept it. Life is a tragedy, confront it. Life is an adventure, dare it. Life is luck, make it. Life is too precious, do not destroy it. Life is life, fight for it".-Mother Teresa

Friends Against Lupus- Up & Coming Non Profit- Tiffany Marie Peterson

Good Morning and Hello west coast fresh cup of Java!

I'd like to extend a big thanks to our Friends out on the west coast from the Pacific Grind Cafe, for the amazing Java beans they sent! They are some of the smoothest beans around! So as I am sitting here enjoying my freshly brewed Cup-O-Joe, after a semi-decent's night sleep (for me at least) and a great day yesterday with the Grand Opening of the CHRONICLYsILLy Designs© Awareness Shop & Boutique and I'd like to extend a big thanks to all of you, for your tremendous support and encouragement! I am feeling "okay" this morning, better than I have the past few days at least, and I am more than ready and willing to accept any improvements that come my way!

I have a very exciting day today, as I am joining the lovely Chelsea Kasai, with the LFA, for a business lunch/meeting to discuss a few things with regards to the Butterfly Gala, CHRONICLYsILLy, and what ever else she may want to discuss. I am very excited to make her acquaintance as I have been working closely with her over the phone with regards to the Inaugural Butterfly Gala being help in NYC for the very first time this September!

So with a big morning/mid day ahead of me, let's get our blog rolling this morning! Today, I am featuring a lovely young woman, named Tiffany Marie Peterson. She is living lupus at 24 years old and is doing incredible things to raise awareness and make a difference, and what a difference she has made already!

"Tiffany Marie Peterson is a twenty-four year old lavender caterpillar living in NYC; striving to become a STRONG luscious lavender lupus butterfly! She dreams of spreading her wings to help promote Lupus Awareness all across the globe. She loves till her soul reaches capacity & dreams till it becomes reality. Focusing on keeping a positive outlook on her life with Lupus & inspiring others to do the same!" Tiffany, who was recently diagnosed this past January with SLE Lupus, she decided to take action! And take action she did. Tiffany not only is a fellow writer of mine over at The Lupus Magazine, but she has started and is in the process of legalizing a non-profit organization that she founded called "Friends Against Lupus!" In an excerpt from Tiffany's first article that introduced her to the magazine she states:

"I was was diagnosed with SLE Lupus in January of 2010. After reviewing and researching symptoms, I realized I have been experiencing symptoms as far back as six years ago! In January I was confined to my bed, and in constant pain for about a month before I was able to get health insurance and finally see a doctor. It's been a long, rough, and painful road since then.

I remember feeling alone, like no one knew my pain. Unable to move any of my limbs... I didn't feel much hope at all. I remember just wishing I would fall asleep never to awake again. It seemed like no one, not even family members or friends were understanding or sympathetic for what I was going through. The only thing I knew about lupus was a print-out sheet my rheumatologist gave me.

After being put on heavy steroids such as prednisone, I was finally able to walk again with minimal pain. I think I cried when I woke that first day without excruciating pain. In March I began to do my own research online about lupus. At the end of March I created the 'Friends Against Lupus' Facebook page. That's when I discovered the 'Walk for Lupus Now NYC' event, which was scheduled for May 1st. I had the entire month of April to make something happen.

I started the page originally as a place where friends and family could learn about lupus and how they could help be "against" it. I wanted a place I could share my learnings with them. It also became the name of my 'Walk for Lupus Now' walk team. A friend of mine designed a logo for me so I could have team shirts made. I didn't have high expectations because I figured a month wasn't much time to raise money & recruit team members. I was proven wrong!"

Now, that page has grown into so much more, as Miss Tiffany has extended her reaches and linked up with many of the surrounding Lupus associations and affiliations in her area, she has participated in health fairs, and holds health booths all over New york City to raise awareness and raise funds! From painted butterfly faces on the little kids that visit her booths, to the decorative and vivacious signs that hang, Tiffany is doing big things to get the word out on Lupus and raise awareness!

"My goal is to form 'Friends Against Lupus' as a legal NYC Non-Profit Organization. One who will work with other lupus foundations to reach lupus patients and their families worldwide. I want to create & fund programs that lupus patients need but don't have. I've spoken to many people and they seem to have no kind of support besides groups like mine that they happen to come across online, or through social networks. Something as simple as a "tweet" can brighten the day of someone who is living with lupus. I remember my dark moments when I felt alone, and I never want for any lupus patient to feel that.

That's my mission, what I strive for. Some of my family members don't understand it, or me, *laughs* but I have chosen this and I truly feel as if its my calling and I don't want to do anything else but this." -Tiffany

I could not agree more with Tiffany on all of her positions when it comes to Lupus and raising awareness, as well as funds for those that cannot afford the proper medical care and are suffering each and every day without no end in sight. If you'd like to get some more information on Friends Against Lupus, check out their Facebook page! And see what miss Tiffany and her Friends Against Lupus team are up to! They are always doing big things to bring awareness to the fight for Lupus! Also, be sure to check out Tiffany's latest article for the Lupus Magazine, published in the August Edition, Tiffany's article "Be a light for Lupus" is a great guide to how you can get more involved and spread awareness in your local community!

For more information on Friends Against Lupus check out the facebook page link above and located on the side of the blog bar (to the right!) as well as The Lupus magazine and Tiffany's articles/ bio page there! Her article-->Be A Light for Lupus! Also, if you wish to contact Tiffany and Friends Against Lupus for any questions, inquiries or comments please email:

FriendsAgainstLupus@gmail.com!

I had the pleasure to meet Tiffany at the 2010 Walk for Lupus Now Awards Dinner in New York city, we were sitting at the same table by chance, and have now band together to raise awareness with Friends Against Lupus and CHRONICLysILLy! Keep up the great work Tiffany and I look forward to seeing you soon!

Now that we have wrapped up our week with a week's worth of blog posts featuring people doing big things for Lupus awareness from all stretches of the globe, I'd like to conclude our post with our usual parting tid bits of information and links so that you all can stay CHRONICLYsiLLy throughout your day, and of course I will conclude with our daily Jolt-of-Java!

Page of Hope- Nothing is Kim Possible!

Butterfly Gala Ticket and Table Information!

2010 Blogger's Choice Awards- Cast your votes now!

Jolt-of-Java: It takes a lot of courage to release the familiar and seemingly secure, to embrace the new. But there is no real security in what is no longer meaningful. There is more security in the adventurous and exciting, for in movement there is life, and in change there is power.

Alan Cohen