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!