Letting Life with Lupus Out of the Bag

Here I am, the face of people living life (and doing pretty well) with Lupus.

Here I am, the face of people living life (and doing pretty well) with Lupus.

Well folks, I told the whole world that I have Lupus today.

New Republic Magazine just posted an article that tells the story of how I was able to start my own business and live a healthy happy life because of Obama Care gave me the option of buying my own insurance coverage. Here is how it all unfolded…

In January, I wrote a letter to the President. It was mainly to thank him for pursuing the Affordable Care Act (ACA, or “Obama Care”) even though the fight was hard.

So, I sent my letter and a short time later, I was talking to the Deputy Press Secretary at the White House, and then, Jonathan Cohn from New Republic. Over a few weeks I told him about how Lupus impacts my life, and how having “Obama Care” options instead of using COBRA, I was saving hundreds of dollars a month on healthcare. And this is above and beyond the fact that I couldn’t even buy individual coverage before this law as passed because Lupus is a preexisting condition. I had a moment’s hesitation about being a part of this story, but I felt strongly about it, and I believe that we need to speak out when things matter.  So, I spoke.

The article by Jonathan Cohn,  “How Obamacare is Slashing those COBRA Premiums”, was posted to the New Republic website today.

I am feeling a bit vulnerable about this—I am a pretty private person–my friend Laurel always jokes that I feel vulnerable when someone asks me my middle name (note: I did not share my middle name here). I had a knot in my stomach that being a part of this story and sharing my illness with the world would be a career limiting decision, but I am hoping people get the message: there is no impact to my clients now, because they aren’t responsible for my healthcare coverage, and managing my own schedule (more or less) means I am, in fact, healthy.

Either way, I had to wave my flag and tell my story. The Affordable Care act gives me the flexibility to pursue the life I want. What is more American than that?

So, here is the letter I wrote to the President.

January 6, 2014

Dear Mr. President,

In 2008 I was diagnosed with the autoimmune disease, Lupus. It took five years of medical tests to get this diagnosis. It takes a team of doctors, several prescription drugs and constant vigilance on my part to remain healthy enough to get through days and embrace life. Before the Affordable Healthcare Act became law lupus disqualified me from getting healthcare coverage, unless it was through an employer. This letter is not about my illness—it is to say thank you to you for taking on healthcare and for continuing under fire to keep it from slipping away. When I called the HealthCare.gov 800 number the operator let me know my online application had been deleted from the system. She took fifteen minutes to walk me through the process again. It was that simple. When she offered me options for health coverage I chose one. The operator said I was “all set.” I was almost in tears when she clarified that I just needed to pay my premium I was covered. And at a level and premium I could afford.

In July I started my own business, and I was only able to do that because of the Affordable Healthcare Act. To make this happen I had to take a leap of faith; I had to pay for COBRA coverage from my last employer for six months and believe in the promise of “Obama Care.” This month, that leap paid off through the new healthcare plan I was able to find though the exchange and purchase through Kaiser Permanente. Until this point, Lupus disqualified me from getting healthcare coverage, unless it was through an employer. My new plan will provide better coverage and will save me $200 per month. Having it also gives me the peace of mind that my healthcare coverage follows me despite my chronic illness. It has freed me to start my own business that creates the lifestyle that keeps me healthy and working—and not disabled.

I take every opportunity to tell people in my life what the Affordable Health Care Law has done for me and to dispel any misconceptions. I think there needs to be more talk about the option of calling the healthcare.gov 800 number when the website is criticized. If there is a need to share a positive experience with the exchange and the law, please use my story any way that it can be helpful. I hope the depth of my thanks multiplied by the many lives that this law impacted will give you even more inspiration to carry on the work you are doing.

With Deep Respect & Profound Gratitude,

And you can click here to read the article at New Republic magazine.

I hope you are having a healthy, empowered day… and that you will leave a comment and let me know what you think.

Donielle

 

 

The Liebster Award & Eleven Great Blogs I Love

lieber-award

 

InTheLupus.org has been nominated for the Liebster award. Woo Hoo!

That means someone is reading my blog—and they like it! I am happy (and relieved). Seriously though, it feels great to be acknowledged by others—especially ones who have such great blogs.

The Liebster Award is All About Sharing–facts about me, questions my nominator posed and also, other blogs that I think are great! Visit them, won’t you?

This is an award that is nominated by bloggers for other bloggers to help people build their followers base. I was nominated by Jessie at Nitya Nata. Go visit her site and marvel at her insight!!

11 Facts about Me:

  1. I have Lupus. Phew. Now that that is out of the way….
  2. I consider myself a really private person—and here I am telling anyone who wants to read it J
  3. My home is my sanctuary. There is a calm peacefulness there that I cultivate and that I crave when I am away.
  4. I have an extreme case of wanderlust. I love to travel and adventure be it near or far.
  5. I have two brothers that I think the world of. Both of them have influenced the way I see others and the way I interact with the world. They are also extremely funny J
  6. I have kept a journal since elementary school—which isn’t so unique. About two years ago I decided to part with some of them, which feels like a major accomplishment for a memory collector like me.
  7. I want a puppy. Actually, I want two, but I would settle for one.
  8. I despise blazers. Even the word “blazer” makes me itchy and uncomfortable.
  9. I have completely changed careers twice in my young(ish) life and I plan to do it at least one more time.
  10. I have a soft voice and a big smile. I use both often.
  11. I believe in the power of the pen (or the keystroke). My new year’s resolution this year was to write something to release into the world at least once a month this year. SO far, so good.

11 Questions for Me from Jessie at Nitya Nata

  1.       What do you imagine your spirit totem animal is and why?

Hm. I have been thinking hard about this one. If you would have asked me last week, I would have said a dog because I am fiercely loyal and protective of the ones I love. But l read the Buddhist quote below, and upon deep consideration, elephant fits like a glove. They have long memories, deep connections, they never forget anyone (good or bad), and sometimes they like wandering alone.

“But if you do not find an intelligent companion, a wise and well-behaved person going the same way as yourself, then go on your way alone, like a king abandoning a conquered kingdom, or without cares like a great elephant in the deep forest.” (Dhammapada)  

 

2.      If your life had a theme song what would it be?

Who are the People in your Neighborhood from Sesame Street. It has been my theme song since I could sing. Long before I could express my deep love of civics and communities, I sang along with glee about “the people that you meet when you’re walking down the street each day…”

 

3.      If you could cast someone to play you in a film remake of your life, who would it be?

Lauren Graham (Lorelai from Gilmore Girls). She is a feisty brunette with a whip smart sense of humor and an endless host of pop culture knowledge, like me. Come to think of it, maybe I would try to convince Amy Palladino, the show’s creator and writer, to take the role instead.

 

4.      What is your hidden talent that you would share if you could?

Few people know this, but I know all the words to the Swedish Chef song (from the Muppet Show). My mom taught it to me. I don’t get to sing it enough. Seriously though, I make it a point to share my skills and talents with people. My thought is, if I have something that can help someone else, I need to share it.

 

5.      What is your biggest fear?

Deep ocean water; I always scare the bejesus out of myself thinking about what I can’t see under the water and how gigantic it could be. And more practically, I am always afraid of Lupus looming over my future. I don’t like the idea of not being able to completely take care of myself.

 

6.      Why do you blog?

Started InTheLupus.org because with a disease like Lupus, there are so many clinical unknowns, but the more you talk with people who have Lupus, the more you realize that we have a lot of shared symptoms and shared experiences. It took me a little while to find my voice with Lupus. When I was initially diagnosed, I couldn’t find someone like me to read along with, so I decided to be that person for other people so that we can all be smarter, healthier, and more encouraged together.

 

7.      How do you think others see you? How would you like others to see you?

I think others see me as serious and having my act together in all instances, which of course is patently untrue. I just have an exceedingly calm exterior and a very prim strand of pearls. I would like people to see me as strong, smart, and kind.

 

8.      If you met yourself at a party, do you think you would be instant friends, or it would take time to get to know you? I would like to think so!

 

9.      Who would you most like to meet, alive or dead, from any time?

Margaret Mead. I identify with her as the ever vigilant observer and her belief in the power of people to make change in the world.

 

10.    What is your favourite thing to eat and drink?

My favorite thing is a hot cup of earl grey and a crisp little madeleine. It is instant comfort and so tasty.

  1. What is the next big thing you want to achieve in your life?

I want to make some sort of impact on the Lupus community—I am not sure what that will take the form of yet, but I am working on it. I am also hard at work on a degree; circumstances got in the way when I was college age, so here I am back at it.

 

Eleven Outstanding Blogs I  Want to Nominate:

  1. Triumphant Wings  because of the generosity of knowledge that the author exudes.
  2.  My Experience With Lupus-because the writing is good—and the tags are better (I was so happy to see among them Work Sucks and WahWah). And also because she is brave enough to talk about the hard stuff, like love, and children and the personal aspects of life with Lupus.
  3. Lupie Thoughts- because of the succinct way the cartoons and little quotes talk about life with Lupus.
  4. Waltzing with Whims, because of this line: “I hate being sick, I hate needing help and I hate having to ask for it. Yet I live with lupus, which means I am sick and need help and thus must ask for it.” Amen, sister.
  5. Lupuslifeblog.com/ because she too measures treatment days in vials.
  6. And this tough cookie: alleemaeauthor
  7. Gallivance quenches my wanderlust.
  8. Heartkindling is a renaissance blog. I like that there are hectic head and hectic hands categories 🙂
  9. Sunnysleevez sun protective clothing that looks cool. This makes me so happy
  10. Saramzak – This blog features the artwork of the sublimely talented Sara M. Zak.
  11. thebarefootbaker You can almost smell the goodness baking while you read!

And a bonus mention: unhurriedchristmas This is my other blog, and I love it.

 

Here are the Liebster Award Rules:

The Liebster Award is awarded to bloggers with under 200 followers to try to promote their blog a little and also bring together a community of bloggers. The rules of the competition are as follows:

•The nominated user must provide a link back to the person who nominated them.
•Provide 11 facts about yourself.
•Answer 11 questions sent by the person who nominated you.
•Choose 11 more people and ask them 11 questions.

In May, We Wear Purple.. Happy Lupus Awareness Month

How much do I want this tee shirt?

98.5 KLUC Las Vegas

In the month of May, the color purple and butterflies have a special meaning. Those two items are the international symbols for individuals living with Lupus. This disease is really close to my heart and I thought I would share with you why. Do you know what Lupus is about?

Lupus is a chronic lifelong autoimmune disease that causes inflammation and tissue damage to virtually every soft tissue and organ system in the body. It affects the skin, joints, blood cells, blood vessels, heart, lungs, kidneys, brain, eyes, gums and nerves. It’s difficult to get diagnosed with Lupus because it hides behind many other painful symptoms. There is one symptom that is universal in the Lupus world, and that is the “butterfly rash.” A red rash appears on top of the bridge of the nose and spreads under the eye sockets, giving it the shape of a butterfly on…

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