It will come as zero surprise to you, my dear readers, that I have trouble sitting still. From the minute I was diagnosed with Lupus, I knew I had to do something and do something big. There was no way I was going to take this disorder laying down and no way that once I was capable I would use everything I had to bring attention to Lupus and just how crappy it can be.
Keep in mind where we started:
My family Googled the disorder and found outdated information and very little information. And what they found scared the hell out of them.
When we finally got some good info, we were told research was scarce and drugs for the disorder even more scarce.
As I lost organs to surgeries and struggled with pain and fatigue and went from doctor to doctor, no one seemed to know what in the hell we were dealing with. Four rheumatologists. Three gastro docs. Specialists from UCLA and Cedars-Sinai. From there, a Lupus advocate was born.
As I continued to rely on my husband for support to get me through those tough days and to just pick up the slack around the house, a Lupus advocate was born.
As my young children visited the hospital time and time again, or were rushed to a friend’s house while Dad drove Mom to the emergency room as she moaned in pain once again, two little Lupus advocates were born.
As part of the Lupus Advocacy Summit, my family and I dipped back into my “other” life…the one I had before Lupus changed it all. The one you all may remember where I traveled a lot and actually did something other than sit on my couch, complaining about pain or fatigue. The one where I spoke to large audiences in Austin or Reno or New York or Washington. The one I miss, terribly. The one where I met many of you in person and we exchanged hugs.
Then you watched me change.
Sure the political rants and raves continued…but not as much.
The hockey fan in me still used twitter to watch playoff games…but not as often or as closely.
The tweets weren’t as frequent. The Facebook posts a little light.
My body would rather sleep, frankly. Or it would rather have its medication, THEN sleep.
You watched the photos continue to be posted but I was in less and less of them, frightened by my steroid puffed up figure and face.
Yet you continued to cheer me on. For that, I am forever grateful. It gave me the courage to remember who I am and what I am capable of.
So it occurred to me that I know some pretty damn important people, and they just might be able to help. After all, I do share my life online and millions have watched me go from interviewing President Barack Obama to an IV in my arm, receiving treatment, twice per month. And I KNEW more needed to know about auto-immune disorders and chronic illness. The toll is takes on our lives, on our finances, on our loved ones. Hell, you read my tweets as we battled with JP Morgan Chase over our mortgage. As we continue to battle Social Security and Mutual of Omaha for my disability.
So I made the call. Or, more accurately, I sent the emails. And without hesitation the White House accepted my offer to sit down with my family, and a representative from the Lupus Foundation, to hear OUR story…and yours.
They want to help. They want the new Affordable Care Act to help. And we are all going to work together to make sure everyone stays informed on how to put the new healthcare.gov information and site to use for YOU.
That means when I am well enough I’m going to help spread the RIGHT information to the public on how they can access the marketplaces, where they can find preventative care (did you know a whole lot of it is FREE NOW thanks to ACA?) and just plain how they can get HELP.
And keep in mind, just as importantly…they listened. The White HOUSE listened as I talked about what many of us go through: the multiple doctors before we even know what the heck we’re dealing with. The bills that never end because we don’t have a cure, just ongoing treatments, the endless toll on our support systems- if we even HAVE support systems. And with wide eyes, like so many others, they listened with sympathy and awe learning for the first time what it’s like to have Lupus, an auto-immune disease, a chronic illness.
Lupus advocacy reached the White House this week and that is just the start. Now the real work begins as we turn our advocacy into funding, research, and relief for all of those- myself included- who suffer.
I also want to note that we were lucky enough to sit down with our own Congressman Buck McKeon. Now, I know what you are thinking “OMG! Erin sat down with a Republican and no blood was spilled and no headlines were made and no one was arrested?” It’s true. The Lupus folks set up the meeting and my family and I happily accepted. We need all the allies we can get in this fight- Lupus is non-partisan.
Congressman McKeon was gracious and asked us many questions about the disorder. We, in turn, asked him to support HR 460 – The Patients’ Access to Treatment Act. I truly hope and EXPECT his support.