I spent the better part of the day trying to figure out how to change.

Should I go vegan? Vegetarian?

Should I try getting up at 5am every morning and walk to the end of the block again? Then in a week around the corner? Then in two weeks around the block? Or should I try to get in the pool daily and swim?

Should I cut out dairy? Maybe carbs.

My doctor gave me the ok to try whatever I wanted and gently reminded me nothing would really make a huge difference until I was off all these steroids saving my life.

…off all these steroids saving my life.

I’m not sure about the saving my life part. Sure they are saving my organs, but what life are they leaving me with?

There has to be a happy medium here. I’ve been trying to find it for a long time now and I’m at my wit’s end. I have to LIVE.

I want to enjoy myself not just stay alive. And my situation is not so desperate where I can’t think about doing these things, even my doctor agrees. It’s why he has no trouble with me flying again at the end of the month to see family (so long as my lab results and body are doing well) and it’s why he won’t stop me if I want to try new things.

The question is…what? I know I’m limited. I know I won’t put my body in danger, it has to stay here and healthy for those I love. But I need to have A LIFE. A life that includes romance and outings and friends and socializing and fun.

I feel like drastic changes are needed in order to take control of this situation. I know I can’t take control of Lupus, but maybe I can change enough of my habits and my lifestyle that Lupus will have less of a chance of seeping into every part of my life…as it has.

Right now, post hospital stay, it’s all-consuming and all around us and all a little too much. I can’t push it out of my mind or shield the family because there is too much aftermath to deal with. Hopefully that portion will be over with soon. Then I can go about life for them without mentioning the “L” word for a while.

In the meantime I will formulate a plan to move forward, again. Thus far I will begin school again in the Fall. Enough to keep my brain going so it doesn’t go numb and I work towards a goal.

Physically it’s harder. I have limits to what my body can do, but they aren’t so great that I can’t overcome them and they aren’t so great that every so often I can’t get off my duff and move. It won’t be easy. It will take time. But change has to come.

I can’t live like this. Ideas are welcome.

I am still trying to wrap my head around what happened. What went wrong.

Except nothing went wrong. At least, not that I can pinpoint just yet.

I got a stomach bug. Just a simple stomach bug.

I was learning my limits. Learning to deal with this disorder. Learning how to live again and all of the sudden…a three night, four-day stay in hotel Hospital complete with blood transfusion.

Thank you to all the friends and family who brought over meals, visited, and were just plain there to listen as we waded through the unexpected stay.

I have so much more to tell you and to say…about how this came just days after a very stressful test by my disability insurance company, wanting to make sure I really deserve that check they give me…about how this came after telling White House staffers living with a chronic illness means I could be hospitalized at any time (bingo!) and our lives turned upside down- like so many millions of Americans. And about my roommates, the first of which did not have insurance. The second was trying to figure out Cobra and send in a check on time so her hospital stay would be covered.

Sometimes I wonder how we Americans survive. I have to think about the bills that will arrive from this stay instead of concentrating on getting well. And worry that my disability check could be gone at any time for any reason as they put me through test after test to make sure I’m really sick.

Maybe this last round of treatment that had to be administered in the hospital, and two units of AB – transfused in the hospital, will be enough for Mutual of Omaha.

Probably not.

Then again I have my appeal for Social Security disability in October…

I am thankful the Affordable Care Act means Aetna can’t fight as hard to throw me off my husband’s insurance when they see I was admitted and received a ton of treatment. And that those lifetime caps aren’t an issue- or we’d be screwed. I don’t think people understand just how important this first step at changing our heath care system really is…and the GOP fight to take down ‘ObamaCare’ wages on while we sit in hospital beds moaning and complaining about the system.

Here is that first step at changing the system. Just a reminder. It may not matter to you right now, but it will eventually. When you’re at the ER with your kid, or when you’re taking your Mom to get her physical (a ton of preventative care measures are free now). I know, I know. I’ll stop. But not until you go check out HealthCare.Gov and at least know how it will all affect your family.

More later as my crusade continues…just not from a hospital bed this time. I hope.

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.

My hands are a bit swollen tonight. Might be the heat. Probably is the arthritis. More than likely it’s a combination of the heat and Reynaud’s and the steroids reacting to the total nerve of my doing one load of laundry- WITH the children’s and my husband’s help.

They carried. I stuffed in the clothes. Emptied the clothes. They carried. I sat and folded. They carried.

For this I get swollen hands.

Thanks Lupus!

It’s just one of the little things. One of the tiny, little things I deal with daily and try my damnedest not to complain about because I can sit and fold. And as most people would say…I don’t look that sick.

It is for that reason, exactly, that I’m doing the laundry. So it can be packed into a suitcase and my family and I can fly to Washington, DC on Friday.

Why Friday? Because on Monday and Tuesday we hope to talk to some important people about our life. About how I don’t really look all that sick, but how life isn’t exactly normal around here. How I need help with the laundry, the dishes, and even need help raising my arms to brush my hair when days are bad.

Why Friday again you say? Because I can’t leave the day before, like most people. If I am going to fly somewhere I need several days to recover before being strong enough or comfortable enough to take on another task, like meeting with those very important people. So even though we may not tell our story until Tuesday, we have to leave the Friday beforehand.

These are small things though. So small. They are nothing compared to what we’ve been through and they are nothing compared to what others go through.

I’m lucky. My family is lucky.

You see, when I was finally diagnosed with SLE or Systemic lupus erythematosus (along with a host of other auto-immune disorders like fibromyalgia and rheumatoid arthritis and Sjögren’s syndrome and CIDP and Reynaud and unspecified connective tissue disorder and neuropathy and so on and so forth) we had family to support us. I had benefits through my supportive employer and we had decent savings and credit to help us through.

We still ended up nearly losing our home. We still ended up in crushing medical debt. We are still battling with Social Security Disability Benefits. And my private disability benefits through my employer continue to put me through second and third and fourth opinions and tests- the latest of which will include a neuropsychological evaluation to make sure it’s not all in my head or that I’m not too smart or too stupid or insane or sane, it’s not very clear why they are putting me through this all day, sit down test. Mind you this is on top of the stack of lab work they already have in their possession documenting my colon resection, my gall bladder removal, my stroke, my total hysterectomy, and of course the continued treatment that includes weekly inflammation tests, bi-weekly IV infusions (three days a week, 4-6 hours per day) and the BIG infusion that comes twice a month every four months that knocks my immune system so low I’ve even gotten a scrape INFECTED just after the IV.

Did I mention I AM ONE OF THE LUCKY ONES? We have the good insurance. We have the support. We have the roof still over our heads. I am able to charge our deductible so I can receive the treatment that so many can not afford. Not even with their insurance.

That’s why we have to go to DC. That’s why my 10-year old will wear a suit for the first time in his life, and my eight-year old will talk about Lupus to adults with more authority than any eight-year old has a right.

That’s why my husband will fidget with his top button under his tie…purple, for Lupus awareness…and try to keep it buttoned for as long as possible while also trying to explain just how shitty it is to be a caregiver to an ill wife.

That’s why I will humble myself and see people I haven’t seen in years, with my moon-face from the steroids and my weight gain from the steroids and tell them why ‘ObamaCare’ must remain in place or even the ‘lucky’ families like mine will lose it all for sure.

My doctor agreed a flight is not the best thing for my body, but so long as we are careful, the message we are bringing to DC is well worth the risk.

While we will be there, officially, for the National Lupus Advocacy Summit on June 24th-25th, you don’t have to have Lupus to have a story. I want to bring YOUR story to DC with us. We’re not just going to tell our ‘lucky’ story, because we know there are so many of you that don’t have it as well as we do. Or have it differently. We want to tell MANY stories. Ours and yours.

Share your story with me in the comments of this post. Let my family be your voice. Let us tell them of how you can’t get coverage, of how many times you have been turned down. Let us tell them about how you split pills because you still can’t afford your meds. Let us tell them about how just because you do not look sick, it doesn’t mean you are not suffering. Let us tell them about how your kids are handling it all. Your partner. Your parents, your friends, your employer.

They might even read your words directly.

This is your chance. Help us to help you. Let’s all make a difference together.

I want to type more. There is so much more I want to say. But it will have to wait because my hands remain swollen and I’m tired and I need to rest up.

We have work to do.

Comments are open. Use them. Spread this post far and wide to every one you know who struggles with chronic illness and needs someone, anyone, to tell their story.

To learn more about Lupus Advocacy Day you can visit the Lupus Foundation.