November 20, 2011

Dear 18-Year Old Me...

Today's Wego Health Writer's prompt is: Dear 18-Year Old Me...

"Write a letter to yourself when you were 18. Be sure to tell yourself what to do more of, what to do less of, and what you have to look forward to in the next few (or several) years"-Wego Health
                                                                       Hey Brace-face!

Yea, you're so NEVER going to live that down; not never! is pretty cute that you attempt to be "cool" by color coordinating your brace bands every month and yet still I don't know if anyone else besides you actually think it's cool; ha!

I can't believe you're taking so many honors and advanced placement classes. Uber proud of you! Though how you manage to make it through an hour of advanced world history is beyond my imagination.

Now listen up, I've got to get this message across before that white light at the end of the tunnel disappears.

These next points are crucial to your future:

-Get a job and save money for college textbooks
-Go to college when YOU'RE ready not when someone else thinks you should go.

-You know those "rain-pains" you've been having in your wrists and knees? When the doctor laughs in your face because you mentioned early arthritis; tell him 7 years later you could have a lupus diagnosis.

-Smile more, write more, love more, and never stop singing!

-Eat more VEGETABLES, drink more water, and take daily vitamins. (Your body will thank you later!)

-Stop perming your hair; embrace it's natural texture.

Enjoy every moment and treasure every memory!

Oh those days of being young and careless! If you could go back in time and leave a letter to your younger self what would you write? You only get one chance so make it count!

: This post was written as part of NHBPM – 30 health posts in 30 days:

November 2, 2011

Days of Our Lupus Lives!

Today's Wego Health Blog Writer's prompt is: My TV Show

"Your blog is being turned into a TV show! Congrats – you’ve earned it. In fact, you get to co-write it. Write about the TV show based on your life or blog."-Wego Health

Welcome to "The TiffanyandLupus Show"! An authentic talkshow that airs every Sunday at 8pm Eastern Time. This upcoming weeks topic is: Five Steps to Go From Lupus to Living!

I'll be speaking on FIVE simple steps that will take you from lupus to living. Wondering exactly what that means? No worries, I'll explain it to you. There are FIVE easy steps I practice often that help me overcome the wear and tear that lupus has on the mind & body. As we all know; positive energy always overrules negative aspects at anytime!

I'll also be interviewing guests on the show who would like to share their 5 steps to go from lupus to living with you. On our fabulous guest roster is: La Lupus Lady who is a wonderful lupus advocate from California. Her favorite inspirational quote is, "Passion is contagious; Lupus is not!". Next we will have the author of the Spoon Theory herself in person, Miss Christine Miserandino who will speak on how she created The Spoon Theory and how it can help you explain what lupus life is like to your family and friends.

Our super secret surprise guest is Shante & Cori Broadus! Yes Snoop Dogg's wife and daughter. As some of you may know Cori was diagnosed with lupus at the tender age of six and has been a warrior ever since! Shante; Cori's mom sits on the Lupus LA board and is a huge supporter of lupus awareness & funding research. Today twelve year old Cori will discuss what lupus life is like; how she manages each day as well as performing her new single, "Do My Thang" showing us that lupus doesn't have to stop you from reaching your dreams and making it a reality!

Any thoughts on today's show? Who do you want to hear more about? What did you think of Cori's new song? Post your thoughts; I wanna know!

*: This post was written as part of NHBPM – 30 health posts in 30 days:

Don't forget to tune in next time where I'll be writing a letter to the 18 year-old-me. Oh I'm nostalgic just thinking about it! Xoxo

My Future Books

Today's Wego Health Writer's prompt is: Titles of my Future Book

 "Say you’re writing a book about your life, community,
condition, or Health Activism. Come up with 5 working titles and a quick book jacket
synopsis."- Wego Health
After much pondering I thought of what my five future books would be...Educational health guides with a sprinkle of my Latina heritage; yes this means a spicy novella. A mermaid inspired "me" because well who wouldn't want to be one! A self love guide, and a TiffanyandLupus cookbook! Doesn't it all just sound visually delicious!? Okay here we go...
  • What Lupus Taught Me
 Oh dear cheese on toast! Maybe she heard the rheuma-whats-her-name say the wrong word...though judging from that cold dead look in her eyes it's safe to say the doctor isn't just pulling my finger for kicks...perhaps it IS something serious. This thing called LUPUS. Well, it's time to pull my girl britches up; whip my fiercest wig and rise above the pain, and the best part is I get to share it all with you!

  •  How to Make Your Doctor Listen!
Ever feel like all your doctor visits are a blur? Do you spend most of your doctor visit in the "waiting room" only to spend 10-15 minutes with your MD before you're rushed out the door? Here's an easy-peasy guide of the: What, where, when, why, and how's of being an expert patient! Learn the skills to become the exceptional patient and gain the respect and proper care from your physician.

  • How to Get From Here to There: A Guide to Self Love
We're going to take a journey; one that's less traveled but leads to happiness. Before we embark I'm going to need you to be completely honest with yourself. This journey is all about YOU and how to leave the emptiness and pain behind and start loving the person we find within. All you're going to need is a mirror and perhaps a pen and paper. Are you ready? Are you prepared to shed the self-hate, longing, and judging eyes you bestow upon yourself? Grab your mirror and join me for an enlightening journey of self. It will be a bumpy ride but it's also one you'll always remember.

  •  Eating at Tiffany's
"Food should always deliver orgasms; anything less is a crime!"                                       Here you'll find Tiffany sharing her favorite authentic recipes. Each one of them full of sass, flavor, and nutrition...much like Tiffany herself. From fatigue-fighting salads and smoothies to mouth-watering lasagna and scrumptious desserts. You can find it all right here. Healthy food should still taste amazing and Tiffany is here to prove that!

  • The Mermaid & The Mercenary
Silently sliding amongst the rocks; Alexander held his breath and settled in for a long moonlit night of waiting. His orders were clear. On the third crescent moon of the fifth of September; a pure soul will sing of true love you'll always remember. Shall the siren finish her song; your mind, body, and soul shall be hers and belong. Gritting his teeth he took a closer look...her short tapered onyx tresses seemed to gleam in the moonlight. Wait, what?! Pffft! He would not get all dreamy over some vixen who was to be the death of him! He clenched his teeth around his solid curved blade and inched closer. He was almost there....a few more steps and it would all be over. Holding his breath he inched his muscled bicep back and prepared to strike at the base of her neck...with each lulling syllable he felt his heart clench tighter. Sweat dripping down his back he pressed on...the curve of her back seemed to dip deliciously into the most beautiful kaleidoscope of colors he'd ever seen. Her skin was a warm cinnamon that reminded him of snowy nights, toasty fires, and hot cocoa. He could almost taste her...
*This post was written as part of NHBPM – 30 health posts in 30 days:

 I hope this was as fun to read as it was for me to write! Which titles were your favorite and why? Were there any that didn't catch your interest? If you had the opportunity to publish your own book what would your title and synopsis be?

 Loving you, Stay strong!
xoxo, Tiffany

Patient Advocacy in Motion: ePatCon 2011

I've collected all the amazing video footage from e-Patient Connections 2011 and placed it all here for your viewing pleasure. Below you'll find interviews hosted by HealthCentral's Amanda Paige as well as some great video clips of me captured by the charismatic blogger Mark S. King from My Fabulous Disease.

Take a look at this remarkable video put together by HealthCentral featuring some of the empowered patients who are taking a stand to advocate for their illnesses and the rights of all patients across the globe.

Don't they inspire you to jump up and get cracking at finding the nooks and crannies that need repairing in the health care system? Okay okay, I may be a little overenthusiastic but let's get serious for a moment. If we don't take the initiative to be our own health advocates how can we expect someone else to do it for us? We can't leave everything in the hands of our physicians; responsibility has to start somewhere and it might as well start with each of us. Now on one's asking you to get crazy and light a bonfire at your next doctor visit. (though I'm sure that'd get their attention!) It's much simpler than that. Becoming your own health advocate is so much easier in this digital age. Everything is available at the touch of a few taps of a keyboard or mouse.

Also featured below are each of the empowered ePatients who sat at the roundtable to construct a draft for the Digital Patient Bill of Rights and how you can contact them. ~> HERE

Last but not least you can view me; fellow Wellsphere lupus blogger speaking with Healthcentral on how social media has helped me overcome the stigma of having an illness and finding support online. Here I share the inspiration behind the Facebook "Friends Against Lupus" page and why I chose that path I did on my healthcare journey and what I hope to see in the future of healthcare!

So what do you think about all this talk of patient advocacy? Do you disagree with what I said? If so what would you have said differently? What are your thoughts on the "Patient Bill of Rights"?

October 6, 2011

Knowledge is Power: e-Patient Connections Conference 2011: Day2

As day two of the e-Patient Connections Conference 2011 (ePatCon) unraveled I found a familiar phrase constantly replaying itself in the background of my mind. "Knowledge is Power"...a loaded statement proclaimed to me and countless others every single day by my childhood charter school KIPP.

Now let's take a minute to dissect it. I think most of us would agree that knowledge is most definitely powerful, but aren't there mechanisms that we much first utilize to make it so? Actions being at the forefront. When we take action by sharing what we learn; knowledge will then have power!

If that isn't motivation to pass pertinent information along the grapevine; I don't know what is! Quite amazing that all this pondering took place before 8:30am during breakfast, eh?

Settling into my reserved seat in the Hyatt at the Bellvue ballroom for day two of the e-Patient Connections Conference; I began to prepare myself for a day of learning.

Chris Schroeder, of HealthCentral was the first keynote speaker. He blew my mind away with his very own revelation of patient empowerment! He challenged us by asking, "What is more important than taking control of your health?"...Truly I find none more important. My days are consumed with personal research of my own to rise above my diagnosis of lupus and strive instead of just surviving. Chris continued to exclaim," Where are the pitchforks and torches!? Where is the, "We are mad and aren't going to take it anymore!" in health care? Do you hear that patients? It's a roll call of sorts, a bellow through the loud speaker asking each and everyone of us why we aren't doing MORE to better our health care. After all EVERY ONE is a patient; why is it so hard for pharma, physicians, and patients to all collectively think like one? You can read/watch  Chris's full speech here.

Chris was followed by Harris Rosen, a Hotel owner who was so frustrated with the health industries indifference to his employees that he created his own health care facility! His only iron-clad rule for all employees is absolutely no smoking, but at only $45 a week you get top of the line health care. Let's hear it for health care innovation at it's best!

This launched a heated discussion through the twitter-verse on whether patients truly "get it"? Some individuals felt that patient literacy was a huge problem while others decided they disagreed with Rosen's no smoking policy and deemed it too controlling. As I filtered through the conversation it seemed that a lot of people were leaning towards patient education being the culprit behind our broken health care system which I STRONGLY disagree with. Once this was uttered in the twitter verse a frenzy arose and ePatients began to take the helm with their valuable opinions. Personally, I believe their must be education on all sides of the health care round-table. Patients should be sitting at the helm and pharma and physicians should be gathered with them to share perspectives and work towards the same positive goals that will reform health care for the better.

                                                 Even the audience at ePatCon was engaged; a physician remarked that technology could be utilized for patients to reduce the amount of doctor visits. Ron Gutman of HealthTap took the stage and inquired why doctors weren't on the same page with everyone else and using interactive health as a mechanism to improve their health care. Continuing to say that interactive health would promote transparency, quality, and better doctor relationships for patients. All this rang true as I replayed scenarios from former doctor visits in my mind. Then I pondered on why I never spoke up and said something all those years. It's been a long road for me as a patient; one thing for sure is I will never be content to play the docile patient anymore!

Vladamir Castillo followed after Ron and presented on how engaging the patient should occur on day one and how insights could be used to better the patient experience. Leaving us with the mind-blowing statement, "It's not what we can do at pharma; we should be doing our job with passion and to be there for them [the patient]." Tina Sampath blew me away by quoting Spike Lee,"Do the right thing!" as her response to pharma/physician in health care. I mean here is a pharma rep for Gilead who outright placed real patients front and center in her presentation complete with video footage and even in person right on stage. There were several moments when I proclaimed how impressed I was with them as a pharmaceutical company who showed respect for and valued patient input via the twitter-verse. Truly a ground-breaking occurrence that all other pharma and physicians need take notes of!

Tina's presentation brought the power of a patients' story to light. The oil that will grease the health care systems broken down engine IS the patients' input! The time has come for pharma and physicians to recognize and respect that and find a way to make progress happen. Once the importance of a patients' story began to unfold; ePatients took to the twitter-verse to share their perspective on it all. There was a lot of inquiry into why so many "health community sites" arise instead of already helping to promote the patient-run communities. Why create something that already exists if you can help the progress of one that is in existence already? This often leaves most of us ePatients feeling alienated and ignored in spite of all we do to help our health communities.

Photo Credit: HealthCentral
During lunch I had the pleasure of being interviewed by HealthCentral's Amanda Paige. She asked me what my thoughts were regarding the "Digital Patient Bill of Rights" and how it felt to be a part of it as well as how social media has influenced me as an advocate. The charming Mark S. King also interviewed me for his blog; My Fabulous Disease and inquired about my perspective on blogging and asked how I would describe my illness (Lupus) and relate it to his. (HIV). All of these video clips will be showcased in my next blog post; so stay tuned.

Day 2 at ePatCon came to a conclusion with Brian Loew of Team Inspire and my fellow rheum sister Kelly Young (RaWarrior). Major kudos to Brian for being upfront and mentioning that ALL power was of the patients who became empowered to help their diseases and disabilities while claiming no credit for himself or his phenomenal site. So proud of Kelly for implementing how patient input is imperative to the progression of health care. You can't fake passion! All the patients who were in attendance are proof of this. Each of them have no financial motives or gain from the hard work they put into their patient-centered communities online. They became EMPOWERED because they CARED not only for their health but for the health of others as well! It's time for pharma and physicians to finally get on board with us patients and emphasize the CARE in health care.

What are your thoughts on the input of patients and their stories? Do you find them valuable or not? Do you feel that pharma and physicians are on board for progressive health care? What are your thoughts of the patient being the top stakeholder at the health care round-table? Share your thoughts! I'd love to know.

October 5, 2011

The Power of the Patient: e-Patient Connections Conference 2011: Day 1

Photo Credit: iStockphoto
"Patient is NOT a third-person word." - e-Patient Dave deBronkart

These were the powerful words that resonated throughout my next two day in Philadelphia after the start-up meeting that birthed the draft for the 'Digital Patient Bill of Rights'. When I was warmly invited by Wellsphere and Wego Health to attend this patient-centered health conference there wasn't a moment of hesitation; I just had to be there! I wasn't sure what to expect from my time at the ePatient Connections Conference 2011. I had various thoughts of cold-hearted pretentious business suits floating by in all types of assorted flavors with chest puffing listed as one of their favorite pastimes. Thankfully I was disappointed!
ePatients at e-Patient Connections 2011
(Photo used with permission of e-Patient Connections:
 ©2011 Some rights reserved.

I will admit I was wary at first. Questioning whether I had done the right thing; if attending this conference was a step in the right direction for patient advocacy. My mind was plagued with worry about whether I would properly represent the 1.5 million Americans living with lupus; not to mention the estimated 5 million worldwide! Shaking off my doubtful fears I steeled my mind with the whispers of encouragement from countless endeared patients who have grown to be a family of mine and prepared for what the next two days would bring.

Charity Tillemann-Dick
(Photo used with permission of e-Patient Connections:
 ©2011 Some rights reserved
Seth Godin was the first speaker at the ePatient Connections Conference. I will never ever forget these impressionable words of his, "You are a platform for leadership; what will you do with it?". His words rang true. I believe it is not enough for us to just be patients; we must be more than that. We must take charge and be leaders; even if it's just for our own health!

I could barely contain myself once Charity Tillemann-Dick; double lung transplant patient graced us with one of my favorite Italian arias after being told she would never sing again. Her emotional journey resonated with me and so many other patients at the conference. The prospect of hope and how finding the silver lining in EVERY cloud becomes imperative to our very survival in life. Charity left the stage after sharing this pearl of wisdom, "We have to stop letting disease divorce us from our dreams!" I couldn't agree more.

I didn't think the conference could get any better....then jaw-dropping commenced after e-Patient Dave and Silja Chouquet performed a spontaneous patient advocacy inspired rap (complete with live beat-boxing!) asking physicians and pharma to 'Let the patients help!' and the day just kept getting better after that.

Silja & e-Patient Dave rapping!
(Photo used with permission of e-Patient Connections:
 ©2011 Some rights reserved
Jonathan Richman; former pharma representative spoke up about pharmaceutical companies needing to start offering services that improve patient lives instead of making products. I love that doctor Brian Vartabedian mentioned the dangers of "snake oil salesman" and how physicians should be more engaged with patients to help promote the safety of credible health information found via social media. I can't count how many conversations I've had with fellow patients who inquired about some "miracle lupus cure" or supplement that they found floating on the web! We NEED physicians to engage with us and utilize social media as an additional way to assist patients with better health care.

The day was filled with countless pharma and physicians acknowledging that patients mattered and proclaiming how valuable our input is to the positive growth of the future of health care. Needless to say I forgot to measure just how many inches my mouth dropped after each speaker shared their intellect. One doctor exclaimed that empowered patients were redefining them while another confessed that the fear of intimacy was why most physicians were reluctant to embrace social media.

One of the new health innovations introduced was the phone application introduced by Jeff Kozloff of CareCoach. He demonstrated how patients can improve their physician relationships by audio recording their doctor visits and utilizing the CareCoach phone application to help prepare patients to maximize their visits to their physician. How grand is that? A funky new gadget that I can use as proof when explaining to my physician that her bedside manner needs improvement! However, when using this app make sure to get permission to record first; you won't be of any use to health care reform behind jail bars!

The day came to a conclusion with dinner provided by the lovely folks at HealthCentral who strategically assigned seats so that each dinner table was a clever mixture of patient, physician, and pharma. I was a bit overwhelmed being one of two females surrounded my a smorgasbord of sharp suited businessmen until a very warm gentleman introduced himself and began to inquire about what brought me to the e-Patient Connections Conference. I must warn you though; once prodded I'm an overflowing fount of information especially pertaining to patient advocacy and lupus awareness! The evening was filled with pleasant conversation between myself and three brilliant gentleman who I later learned were astounded to discover that patients often have horrific health care stories. This helped mold my views a bit more positively for pharma and physicians and encourage my beliefs that health care needs to be a three-way street between them and the patient. Mutual respect needs to be attained; input shared with similar goals for achievement laid out in front of us.

I looked forward to day two of the conference after being pleasantly surprised with all day one had to offer.

How about you? What are your thoughts on the relationship between patient, physician, and pharma? What valuable input would you like to share to help shape the future for positive change in the health care system? Please share your thoughts; I'd love to hear from you!

September 27, 2011

Making Progress: The Digital Patient Bill of Rights

Photo used with permission of Klick Pharma: ©2011, All rights reserved.
It's been exactly one year; seven months and eleven days since I was diagnosed with lupus but hey who's counting! I often take a step back to take a peek at the footsteps I've left behind in the sand on my path and am rendered speechless at how far I've come on my health journey. One thing is sure; my journey is NOT over and there is still so much more to be done!

Months and in most cases years of pouring our souls out into the ether while sharing our patient experiences about our various illnesses online with other patients has evolved into so much more than we could ever have imagined. The pain, passion, and perseverance of the digital patient has created a community!

Photo used with permission of Klick Pharma: ©2011, All rights reserved.

Through community the powers that be took it upon themselves to gather a group of remarkable "ePatients" from across the country and bring them to Philadelphia for a day of health centered groundbreaking activities. When I say "ePatient" I don't mean electronic; my description would be: a patient who endeavors to become an educated health consumer while also encouraging, engaging, and empowering others to do the same.

Thanks to the amazing folks at Klick Pharma, HealthCentral, Wego Health and the Digital Health Coalition 20 exceptional ePatients gathered together around a round-table to brainstorm the beginnings of the very 1st "Digital Patient Bill of Rights". Minutes quickly turned into hours and after about four we had finally come to a united agreement on what the main goals/points of our key messages were to establish.

-Shared access to our data
-Attitude of collaboration & overall respect
-The patient is the largest stakeholder
-Transparency and authenticity across all areas
-Voice of the patient is a legitimate source
-The right to efficient communication with providers who utilize the technology we need

I for one am honored to have been given the opportunity to speak on behalf of patients in regard to creating a "Digital Bill of Rights". Though we are far from the finished project; as this is a work in progress. Do stay tuned to Klick Pharma to be aware of more current updates regarding this bill.

Overall the most important things to remember are that we as patients MUST learn how to become empowered and engaged in our communities; I've discovered that this road almost always leads to self-healing. The internet can be a valuable tool on your journey towards empowerment; utilize it!

You have the power through the internet to make your voice heard! Take a stand for your health whether for your benefit or the life of another and remember that knowledge is power, but only if you pass it on!

For a complete view of slides from the "Digital Patient Bill of Rights" Whiteboard & a contact list of the Digital Patient panelists please visit the Klick Pharma blog.

What are your thoughts on this "Digital Patient Bill of Rights"? Do you feel everything was mentioned? If you could contribute your valuable input to the bill what would you add? Here's your chance to share your thoughts; I'd love to know your perspective on it!

September 15, 2011

30 Things About My Invisible Illness You May Not Know

September 12th, 2011 hails "Invisible Illness Week" and I've taken some time to share 30 things about my particular invisible illness that several of you may not know. You can learn more about this remarkable campaign to shed a light on all the illnesses that may seem invisible to others but are clear as day to the people who live with them here:

Now without further ado; let's delve deeper into the wide world of lupus!

1. The illness(es) I live with is:
Lupus, Fibromyalgia, and Sjrogen's Syndrome.

2. I was diagnosed with it in the year:
Systemic Lupus Erythematosus in February 2010, Fibromyalgia and Sjrogen's Syndrome a year later in 2011.

3. But I had symptoms since:
I was 18 years old in highschool. I used to complain about aches and joint pains, but back then my physicians thought I was "seeking attention"! Go figure!

4. The biggest adjustment I’ve had to make is:
Choosing which daily tasks I'll attempt for the day! Most of the time it's a daunting task because I'm not always able to reach my goals with all the symptoms of each illness playing tag with me.

5. Most people assume:
That I'm not sick; just lazy and don't feel like attending their parties/functions. The truth is I really wish I could be there; dancing among friends, taking pictures, smiling and making memories...but instead I am usually hawking down my daily pill routine whilst trying to keep a smile on and focusing on improving my health so that I won't miss out on events in the months to come.

6. The hardest part about mornings are:
Finding a reason to smile despite the pain I feel in my body. I usually win this one though :)

7. My favorite medical TV show is:
Grey's Anatomy; because who can focus on pain when McSteamy is on the screen! Also, House because finally IT IS LUPUS this season!

8. A gadget I couldn’t live without is:
My laptop, because I wouldn't be able to connect with all of my lupus and spoonie friends and family.

9. The hardest part about nights are:
Falling asleep...kind of hard to do when everything hurts.

10. Each day I take 12+ pills & vitamins.

11. Regarding alternative treatments:
I do my best to eat healthier. Incorporate lots of raw fruits and vegetables into my diet; drink lots of water, and decrease my intake of harmful foods like meat, sugar, salt, etc.

12. If I had to choose between an invisible illness or visible I would choose:

13. Regarding working and career:
*le sigh* One day I will be able to both again. In the meantime I will spend my time advocating for all my illnesses.

14. People would be surprised to know:
That I have more than one autoimmune disease.

15. The hardest thing to accept about my new reality has been:
Once you dip your foot into the autoimmune pool; you're likely to be susceptible to all the others. 

16. Something I never thought I could do with my illness that I did was:
Find an online family/community. *hug*

17. The commercials about my illness:
Are very very vague, but I'm glad they exist at all.

18. Something I really miss doing since I was diagnosed is:
Spending time with loved ones, having a job and attending school.

19. It was really hard to have to give up:
Everything mentioned in #18. I'm not where I want to be in my life but I'm making small steps of progress towards being a happier me while living with illness.

20. A new hobby I have taken up since my diagnosis is:
Magical Mail; which is simply writing post mail to friends/loved ones. It's a simple way to put some magic in someones day!

21. If I could have one day of feeling normal again I would:
First, pinch myself just to see if it's real! Then spend the next 24 hours doing all the things I haven't done in forever. Dancing with friends till the sun comes up is at the top of my list.

22. My illness has taught me:
That I am stronger than my pain. To appreciate the simple things life brings, and to learn how to lean on others for support when I have weak moments.

23. Want to know a secret? One thing people say that gets under my skin is:
You don't LOOK like you're sick, or in pain. Why don't you do ____ so you can get better? And gosh it really sucks that you can't do anything anymore.

First, LOOKING and FEELING are two different things people; re-learn your five senses silly! Second, I am doing everything in my power to be as healthy as I can. Third, I already think that 24/7 so it would be nice if I didn't have a constant reminder from friends/family. Be more positive for those that are ill!

24. But I love it when people:
Ask me about lupus and how they can help. It's a beautiful thing when others are inspired by your passion to raise awareness, etc.

25. My favorite motto, scripture, quote that gets me through tough times is:
"Just keep swimming, swimming, swimming!"- Finding Nemo

It's silly, but I like the fact that a nautical brain fogged sea creature has the spirit to keep on fighting to see another day. Keeps me going & reminds me I CAN do it.

26. When someone is diagnosed I’d like to tell them:
You're NOT alone! If you need help reach out and let someone know.<3

27. Something that has surprised me about living with an illness is:
Discovering my inner strength and compassion for others.

28. The nicest thing someone did for me when I wasn't feeling well was:
Send me 'magical mail' in the post full of glitter. It's amazing how powerful glitter can be when you're feeling crummy!

29. I’m involved with Invisible Illness Week because:
I want to take the opportunity to share what my life with lupus is like and hopefully shed some light on this disease that often seems "invisible" to so many who can't feel what living with it is like for a patient.

30. The fact that you read this list makes me feel:
Happy because now you're one more person who knows about lupus; pass it on!

June 18, 2011

#140 Conf: Social Media Gone Good

While rambling on Twitter nine days ago I stumbled upon an intriguing tweet from Jeff Pulver mentioning his #140conf contest. The prize being free tickets to attend the two day "140 Characters Conference: Exploring the State of Now" June 15-16th in New York City!

All you had to do was express why you wished to attend the conference and then cross your fingers while sporadically checking your private messages for a response. (Yes! I actually behaved in such a manner; abated breath and all; no I didn't major in theatrics!) Guess who was one of the winning tweeters?

I've known fellow lupus sister Amanda Greene aka La Lupus Lady for over a year now and the concept of being able to wrap my arms around her in real life was almost too much for my brain to process! Besides attending the #140conf; Amanda was a speaker on the "Lupus Ladies of Twitter" panel along with lupus sisters Christine Miserandino aka BYDLS, Kelly Dawn aka KellyFund4Lupus, and her phenomenal mother Brenda Blackmon!

There aren't enough facial expressions to express my glee of finally being able to wrap my arms around these beautiful strong women. Each of us (excluding Ms. Brenda) has been living with the chronic illness lupus for quite some time and have found each other through the usage of social media.

These four remarkable women took the stage at #140conf and shared their stories. Christine stressed the importance of helping lupus patients in the state of NOW not later. Amanda showed us how anyone could easily help raise funds to promote lupus research with the new campaign from the Alliance for Lupus Research, and Brenda tugged at our hearts with her real-life story of how social media and prayer helped her daughter Kelly to wake from a lupus inflicted coma over two years ago. Fifteen minutes just didn't seem like enough time to be in the presence of such marvelous ladies.

There were memorable moments, inspiring speakers, and pearls of wisdom aplenty to be found at the #140conf.

From esteemed panelists like Deepak Chopra who shared a message of happiness and the importance of surrounding oneself with positive energy to young engaged Middle School Micro-interns which performed a skit that mimicked the effects of social media in the business world today! There were moms, CEO's, farmers, bloggers, teachers, dads, graffiti artists, police men, producers, etc all gathered together for a day of social goodness.

At the #140conf a police man (Scott Mills) shared his passion of crime stopping; working with kids and graffiti. Just a few hours later a lupus patient stripped on stage to raise funds for lupus research. We were taught the importance of returning relationships and practicing humility (Ted Rubin); and learned how to awaken our very own superhero from deep within (Christopher Penn).

I am beyond inspired; I am humbled by the opportunity granted. Thanks to Jeff Pulver I've discarded the dry and distant practice of handshakes and embracing the kindness and warmth that comes with a hug.

Social media grants us the opportunity to reach out and touch the world in each of its farthest corners. Now that you have that power; what will you do with it?

I have always endeavored to become a groundbreaking activist; I'm completely astonished that #140conf has set me on a clear path towards achieving my goal!

In case you missed the "Lupus Ladies of Twitter" segment from #140conf I've posted it below.

Feel free to leave your thoughts in a comment below; and share if you enjoyed the post!

June 9, 2011

Antiphospholipid Antibody Syndrome: Defined

Today we welcome Guest Blogger Tina Pohlman; President, cofounder, and patient at the APS Foundation of America

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What is APS?

A disorder that increases the risk that blood clots will form in the veins and arteries. Antiphospholipid Antibody Syndrome (APS) affects many more women than men. Sometimes nicknamed “sticky blood syndrome” in the United Kingdom, it can appear on its own but is often associated with systemic lupus erythematosus (SLE or Lupus) and other autoimmune conditions. People with APS have high levels of antiphospholipid antibodies in their blood.

 These antibodies—immune-system proteins—increase the tendency of blood to form into clots, which can lodge in the veins and arteries.
People with APS are at increased risk of a host of problems such as anemia, deep vein thrombosis (a blood clot that forms in a deep vein), heart disease, kidney disease, stroke, dementia, chronic headache, peripheral vascular disease, and pulmonary embolism (a life-threatening condition in which a blood clot travels to the lungs). In pregnant women, APS can lead to miscarriage, premature birth, and other pregnancy complications.
APS is diagnosed when an individual has a history of blood clots or of miscarriage and/or premature births and blood tests have shown the presence of antiphospholipid antibodies. The presence of the antibodies alone does not warrant a diagnosis of APS. Many people have antiphospholipid antibodies in their blood but do not have APS. As a side note, up to 40-50% of people with lupus, for example, test positive for the antibodies and may have both Lupus and APS

Treatment for APS is aimed at thinning the blood to reduce blood clotting. The standard treatments are anti-clotting drugs such as aspirin, warfarin (Coumadin), and heparin. As warfarin has been known to cause birth defects, doctors treat pregnant women with heparin. In addition, women with APS, especially those with a history of pregnancy complications, must be monitored very closely during pregnancy.
People with APS are also advised to stop smoking, exercise regularly, and eat a healthy diet to guard against other health conditions that add to the risk of developing blood clots, such as high blood pressure and diabetes. Individuals who have already developed these conditions must get treatment to control them.
Adapted from Arthritis Self-Management July/August 2009

Founded in 2005, the APS Foundation of America, Inc. is the leading United States nonprofit health agency dedicated to bringing national awareness to Antiphospholipid Antibody Syndrome (APS), the major cause of multiple miscarriages, thrombosis, young strokes and heart attacks. We are a volunteer run, community based 501(c)3 non-profit Public Charity organization and is dedicated to fostering and facilitating joint efforts in the areas of education, support, public awareness, research and patient services. Our URL is

-Tina Pohlman

May 14, 2011

Revealing Lupus Lies (HAWMC)- Day 14

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It seems that there are a lot of "lupus lies" floating about the public/media these days. I'm going to take some time to reveal some of the common ones which are extremely annoying. Just imagine you had an imaginary friend who spoke to you, you could see him but no one else could. You could hear him, but no one else did. He'd poke, prod, and pull prank tricks on you, but no one else seemed to see it! 

Lupus is kind of like that! It's always there inside you. Sometimes festering up and cause painful symptoms like achy joints or swollen knees. Patients are reminded they have this illness every single day and it's about time those of you who don't have lupus took some time to hear us out! School is in session and today's lesson is all about revealing those "lupus lies"!

Lupus Lie #1:  "Tiffany never comes to any of our parties anymore! She's always saying she doesn't have the energy or that she has too much pain, but she doesn't even look sick she's just lazy!"

Truth: Looking good and Feeling good are two entirely different things! You can't tell who has a disease just by looking at them! Not all disabilities are visible. Some of the symptoms caused by lupus are joint pain and extreme fatigue. Instead of judging a friend or family member try asking them how they feel first, and take initiative by going online and finding out how their diagnosed illness affects the human body! You'll be surprised at how strong they are once you read more about their illness!

Lupus Lie #2: "It's not lupus, it's NEVER lupus! Duh, Don't you watch House!

Truth: Dr. Gregory House is WRONG! There are over 1.5 million Americans and over 5 million people worldwide living with lupus. 90% of those affected are female; 10% are male; and 25-30% are children! Lupus does not discriminate; absolutely anyone regardless of gender, age, or race can develop lupus.

Lupus Lie #3: "Lupus? That's a Womens disease! Only females get that!"

Truth: WRONG! 90% of those affected are female; 10% are male; and 25-30% are children! Lupus does not discriminate; absolutely anyone regardless of gender, age, or race can develop lupus.

Lupus Lie #4: "Exercising is harmful for a lupus patient!"

Truth: WRONG! Exercise is one of the only ways for lupus patients to fight fatigue. You don't have to do anything crazy like run a marathon! Mild to moderate exercise is best; try walking and stretching and set a small goal. Try stretching until you're able to walk. Walk in little circles around your room until you feel strong enough to walk a block outside. It's a proven fact that light exercise can ease joint and muscle stiffness.

Lupus Lie #5: "I'm dark-skinned so I don't need to wear sunblock." or  "It's not even sunny out!"

Truth: WRONG! Everyone needs to wear SUNBLOCK with a spf higher than 70 & high uva/uvb protection levels. Even if you don't get sunburned the sun STILL damages skin cells if you're not protected! Regardless of skin color, age, race, ALL lupus patients need to wear sunblock as well as wearing a wide brimmed hat and protective clothing. The sun is the reason many of us have lupus flares & increased fatigue! Protect yourselves!

Lupus Lie #6: "I don't have a positive ANA, so that means I don't have lupus!"

Truth: WRONG! You don't need to have a positive ANA to be diagnosed with lupus. The ANA test is not entirely accurate and sometimes patients receive false negatives/positives. Remember that there is 11 diagnostic criteria and you only need 4 out of 11 to be diagnosed.

Lupus Lie #7: "I feel much better so I stopped taking my medications." or "My medications make me sick so I stopped taking them!"

Truth: Absolutely NOT! Medication is part of our treatment plan. Since there is no cure it is very important for each patient to stay on their treatment plan and discuss complications with their doctor. If you medication is making you feel unwell discuss it with your doctor so they can try switching medications. If you are feeling well  also discuss this with your doctor so they can try tapering your dosage down to see how your body handles it. You should NOT stop taking you medications for any reason unless instructed by your physician first!

Lupus Lie #7: "I don't visit my friend anymore because she has lupus and I don't want to catch it"!

Truth: Lupus does NOT have a cure, but it also is NOT contagious! It is an autoimmune disease in which the immune system becomes over-active and can no longer distinguish between a healthy cell and a virus invader and so when it sends out auto-antibodies which attack the bodies own healthy tissues.

Lupus Lie #8: "I'll never have a baby because I have lupus!"

Truth: Not true. Lupus patients can still become pregnant and experience childbirth. Lupus can make it difficult for patients and miscarriages can happen often which is why you need to discuss pregnancy planning with your doctor first so they can make sure you are not on any medications that can affect fertility or the fetus. As well as having a team of doctors to make sure you have everything you need.

Lupus Lie #9: "I am stuck because I have a cold and non-supportive doctor!

Truth: WRONG! NEVER stay with a doctor who you feel is not helping you. They are PAID to help you and give you the best care possible! So if you feel like yours isn't doing their job properly here's what you do; request a copy of your medical records and find a new one! Try calling your local lupus chapter for doctor referrals! We don't have the luxury of waiting til a doctor helps. We need to become pro-active with our health and take initiative to get the best care possible, because if we don't stand up for ourselves then who will?

Lupus Lie #10: "I'm destined to be alone all my life because of lupus!"

Truth: Absolutely NOT! Lupus does NOT define who you are. You may have lupus but it most definitely does NOT have you! It takes a special caring person to love someone like us. Don't settle, and don't go looking for love let it come find you. Start small with making new friendships, join a support group so you can form friendships with others who know exactly what you're going through. Most importantly love YOURSELF first. It may be hard to accept that you are living with an illness but remember it's not your fault that you have lupus. Accept it and learn to go from lupus to living, because as my favorite drag queen says, "If you can't love yourself how in the heck can you love somebody else! Can I get an Amen!?"

Always loving you,
Tiffany Marie xoxo

Lies and Misconceptions. The truth, as we know, sets us free. Coming across a blog post that hits home because it’s so real and relevant is a wonderful experience. In our health communities we dedicate a lot of time to being honest and forthright with our health information and patient stories – well today we’re not going to do that. Put on your deviant pants – today we’re going to write lies.
Today, let’s make lists (I won’t say the “p” word) that are 5-10 lines long – each line being a lie or misconception about your health condition. You can use lies or misconceptions you’ve heard before or make ones up. Use your personal experience or get elaborate with fiction.
When writing your lies – get creative. Try to find the most interesting way to put these lies or misconceptions into words. Use rich or ridiculous imagery (tap into your 5 senses!) and the best adjectives you can to bring the lies and misconceptions to life. Want to make your lies into a conversation? Try writing your lies in someone else’s voice. If you want to keep your blog honest, you can also switch off between misconceptions and the truth if you want. Line 1: Myth Line: 2 Reality.
How do you normally address misconceptions in your blog or community? How do they play into your role of Health Activist?
What did it feel like to write blatant lies and un-truths? What did this exercise teach you?