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.




A Constellation of Scars

So where were we? A mysterious rash at the end of summer….

That best friend I mentioned, calling out to me from across the parking lot was among  a slew of great coworkers that I had at the time. We worked and played together and we looked out for one another. So, when our accountant sent out an email about something called Inflammatory breast cancer, a lot of the women in the office marched to the doctor.   I was one of them. It had been months and I still had the red, sometimes, pink, other times purple spot on my arm long after the sunburn and the summer faded. I didn’t know how many stops there would be on the road to a diagnosis, but here is how it went for me:

Stop one: My Primary Doctor. My primary, Dr. B,  said the rash would probably go away, but I could see a dermatologist, if I wanted to.  I imagine she was a little bit tired of me. For weeks I had been complaining of exhaustion and pain in my shoulders and knees. She told me it was likely stress.

Stop two: The Dermatologist. I should mention here that I wasn’t used to going to the doctor. Growing up I had a dinosaur of a GP. He had an office in his house and four generations of my family had seen him. While this was sure a time saver when it came to filling out the “family history” section of the intake forms, that was where the benefit of his care ended. With that doctor as my only frame of reference, I didn’t really rely on the medical community to cure what ailed me. For colds and such, I used my grandmother’s home remedies. I didn’t even take Tylenol for a headache.  Going to a dermatologist in particular seemed kind of extravagant—like a totally unnecessary nicety for people who had the extra cash to spend on clearer skin.

So, the day I pulled into a dermatologist was jarring. I sat there in my car looking at the sign that said “specializing in the diagnosis of skin cancer.” Fortunately, it was freezing outside, so despite my reluctance, I went in. I left an hour later with a band-aid over a punch biopsy of the rash on my arm. A week later the biopsy results came back inconclusive. A week after that, the biopsy site wasn’t healing, so I went back. This time, I got the senior dermatologist at this office. She came in and said, “How would you like a nice thin scar that no one will notice, instead of what you have?” Translation: I am going to do another biopsy. This one required stitches and it didn’t heal either. I would have six scars on my arm by the time all of this biopsying was done. I ruefully call them my constellation of scars.

I have a constellation of scars on my arm. I am one scar short of the big dipper.

I have a constellation of scars on my arm. I am one scar short of the big dipper.

Dermie sent me for blood work and for a gene rearrangement study. I was convinced this was going to be the answer—I mean what could be more revealing than a look at my genes, right?


The dermatologist was stumped. So, she sent me to another dermatologist. One who was wise, in his eighties, and of  whom she was in awe.  Dermie talked about him like he was Yoda. “He is a master in his field,” she told me. He was older, didn’t use computers, and he didn’t have much bedside manner, but he has seen everything. “You should see him immediately.” I was scared, but this could be it right? I got my hopes up even higher.

Stop three: Wise Old Dermatologist. I brought my Mom for this one. This was another doctor in his home. He was retired, but took special cases (aw, man. I was a “special case”). Stepping into his office was like stepping back in time. It was like being on the set of a doctor’s office from the 60s. The secretary had an electric typewriter and a rotary phone. She told me that all correspondence happened by mail. When I met the doctor, Dr. S we’ll call him, he asked me endless questions and took detailed notes on index cards. He looked at my arm and sent me for more blood work. Later that week, I would get a call at work. “You need to get to Roswell Park Cancer Institute immediately for tests.” I was devastated.

Somehow I had gone from, “hey if you want to see a dermatologist, go for it, but it’s probably nothing, to a lot of use of the word “immediately,” and I was scared. 

I broke down and told one of my coworkers what was going on and as I was pouring my heart out, my boss came over and told me to go home for the afternoon. My secret was out. I took the next day off and headed to the local cancer institute, where my journey really gained momentum.

This story gets better, I promise!
(to be continued)

Good Day! Sunshine!

Good Day Sunshine!

sunshineI was so happy not to wake up to dark grey skies and dreary, slushy rain. It was 27 degrees outside today, but the sun was out and I had the whole day off. I woke up singing, Good Day Sunshine! Click below so you can sing along too!

After the regular rigmarole of the morning routine, I headed out to the eye doctor (all clear on the Plaquenil retinal screening—hooray!) and then to the chiropractor (all popped and cracked back in alignment, three cheers!) and then I planned to go shopping for some new work clothes—I couldn’t put off buying black work pants any longer. I was driving and singing along with the radio for a little while when I realized I had a slight headache. Then my hands started to burn. All the sudden I was really, really tired. It always takes me a day or two to remember what happens when the sun shows up on the scene again each spring. Welcome back photo sensitivity.

The sun was the lead player in how I discovered I had Lupus. Of course, I had no idea at the time—nor did a slew of doctors and a pack of specialists or a host of tests.

I haven’t been able to put my hands on the pictures from that day. I took my younger brother to Six Flags with a bunch of friends and we spent the whole day in the beat-down, hot-as-it-gets-in-Western-New York sun.

Before that day I had never known a sunburn. My fair olive skin always gave way to a honey colored tan befitting my Southern Italian roots. From childhood, when I would sun worship my way through summer playing on our block or splashing in the pool, there was never a time when I shied away from a single ray.

Back to Six Flags. That was the first summer since I wore sleeveless tops since I was six or so. I think I am 32 there. My mother and I joked that this was just purely scandalous. She started calling me a Glory Girl (this has stuck). So I got a sun burn this day, which was novel to me. I was like, “Check this out—I think my skin is going to actually peel.” I was fascinated, a bit pink, and tired. Days past and the sun burn on my arms faded, except for that double thumbprint on my arm.

I wore the same shirt from the amusement park to work one day. From across the parking lot, my best friend shouted to me. laughing: “Do I need to rough up that husband of yours? Is he shaking you and leaving marks?” I was shocked for two reasons. One—the mark was still there and it was two weeks later, and two—it was noticeable from a fifty yards away. Still, I didn’t think enough of it to have it looked at. It was a bruise or something, right?

(to be continued)