I’m not going to lie…I was holding my breath. Would my pre-existing condition be covered? Would it ruin our lives forever? Would the millions of us with chronic illness be trapped in this horrible pre-Affordable Care Act hell that meant we paid and paid and paid and lost our homes and worried and worried and worried about how we’d pay and what we’d do if we couldn’t get coverage.

Then the media finally seemed to make sense of the Supreme Court Ruling:

Yes, that means people like me have hope. The conservative leaning Supreme Court gave us hope. The Affordable Care Act is not perfect, but it is progress. It is a step forward. It means those of us with chronic illness have HOPE in this world where we spend thousands upon thousands with good health insurance just to pay for life saving treatment we need to survive. Imagine what that is like, and imagine what this ruling means for those of us who live this hell daily.

Right now the only words I have, with tears still streaming down my face, is thank you Supreme Court. Thank you. Millions of Americans need this. And we need MORE of this. Let this just be the first step in making sure everyone has access to health care and that everyone has the right to get well and see a doctor and find a treatment that works.

I should know. I have spent the past two years fighting for my life. This ruling means people like me can fight to live another day, and do it with the HELP of our government.

It takes a village, and that village just got my back.

This weekend I woke up to my son staring at me.

For most people their children peering over them as daybreaks is just one of those moments of parenthood you learn to live with. Either you send them off to play video games and grab their own bowl of cereal, or you begrudgingly get out of bed and trudge down the stairs to make breakfast and turn on cartoons while you doze and in and out of consciousness on the couch.

Not in our house.

Opening my eyes to find my son looking at me in horror has my mind turning as quickly as possible to find the right words to calm him. TO remind him of what every doctor has said, of the little things I can do now…of how much better things are.

Instead I fumbled for words as his nine-year old mind processed what it had seen: 10 straight minutes of me writhing in pain as I worked hard to get out of bed. The pain overwhelming me, as it does every single morning, and my usual battle to get on my side and then from my side to my feet on the floor. It’s a process that is no fun and I dread every morning. A process I never wanted either of the kids to see.

So of course  I had to explain to him I was not sick, I really was ok. And that I really am better. Morning was just hard for Mom and it’s just hard until I get my first pills in me. Then I had to suck it all up and pretend like it didn’t hurt so bad that I could barely breathe and I jumped out of bed in front of him so he could see I was fine.

Gritting my teeth I walked downstairs and got him breakfast, got my pills, got him milk, and finally, sat down. The relief was unreal.

Today I woke up before everyone else in the house. Something I plan to try to do daily forever. I don’t ever want to see the look on his face again as he stared at me in pain. The fear. The confusion. Never. Again.

I’m scared.

The Supreme Court has yet to rule on the Affordable Care Act, which means a ruling will come next week.

I’m scared.

What if I have to worry about reaching a lifetime limit on coverage?

I’m scared.

What if we have to file bankruptcy because I got sick?

I’m scared.

What if I get kicked off my current coverage due to my pre-existing condition?

I’m scared.

This is what keeps me up at night.

Dear Republicans against this ‘compromise’ legislation…please tell me what YOU think should be done. And when I say ‘should be done’ … I mean now. Not as time goes on and Congress votes and blah blah blah blah. Because time is not something I have when there is a stack of bills on my desk.

I want to know what YOUR solution is for RIGHT NOW, because if SCOTUS claims ObamaCare is unconstitutional I will be screwed. What will the millions who are now insured, who will no longer be insured, DO?

As I prepare for treatment next week, treatment that currently I can afford to pump into my body to keep me healthy…I am wondering if those of you hell-bent on repealing this legislation are preparing for the millions of us that can no longer sleep at night because we’re overcome with fear over what with happen.

I am scared. And you are playing politics with my life.

As you vote, as you give your speeches, as you gather at the local diner to shake hands I want you to remember that there are millions of us scared as hell, holding our breath, and hoping beyond hope this historic legislation stands.

But I’m guessing you have no idea what that’s like.

And if I am wrong, by all means, tell me. Explain to me how I will be better off in the long run – because right now the long run looks rather bleak with your repealing of the only thing between many of us and losing it all.

Do you understand I need treatment? I need my medication? I need a home to live in that requires, as do the majority of American homes, TWO incomes? Do you have ANY idea the red tape that goes one when you try to apply for social security disability or long-term disability through private insurance? I’m lucky, I still can manage to think and fill out forms and make calls. Most people who truly need these services and money can not.

So I want to hear your solutions. And I want to hear your reasons for leaving so many of us without a safety net that comes with the Affordable Care Act. Do you truly not like what is in the Act? Do you even KNOW? Have you read it? Tell me what part of it pisses you off most. Is it where I can get coverage despite having Lupus? Is that it? Or is it the part where you have to purchase it, like auto insurance or home owners insurance? Because from where I sit I will gladly pay what I need to make sure this body can get the care it needs to remain a wife and mother. No really, have you READ IT?

I have. Which is more than many Congressfolk.

And it’s a start. It’s not perfect (due to many of those dead set against it bitching for ages) but it’s a start. And we need a start. Because I have been in this system now for two years and I can tell you it’s not pretty. We’re facing losing our home. We have debt up to our eyeballs as I pay bills from whatever doctor or whatever doctor’s doctor was in the room when they did that one thing in the hospital that I was charged a gazillion dollars for.

So give me those solutions. And look me in the eye and tell me what you will do when you win this ‘fight’ over health are in America and I am left scared, sick, and with nothing.

Better yet…look them in the eye:

I’m waiting.

I remain in limbo and I want out.

I float here with all the babies who weren’t baptized and the lost souls who, I can only assume, were too kind for hell.

I know that all sounds rather cryptic. I don’t mean to be. I just can only explain the emotions of this half-life I am living so well in words.

I feel so very lucky and loved in so many ways and so very alone in most others. That is not to slight all those around me, it is just the nature of the beast. This is my illness. My fight. My disease. My life. I do not have a choice but to battle while everything else must continue on around me. That means without me as well.

Life is not fair. And for the most part, I have very little to complain about. My health is improving. I am slowly making my way back to all the things I did before. Or, at least, making my way through this quick sand to this new life of mine that slightly resembles the old one. As I gain more health, I see more of me and that life I once knew. It pushes me forward.

Unfortunately everyone and everything around me has changed along with me. Lives must continue forward. And we need to learn and navigate this new chapter. It’s unfamiliar territory. I don’t like it. I want all of the old territory back. All of it. I realize that can’t happen but I know that if I keep pushing I can at least get 99% of it back. That’s my goal, anyway.

In the meantime, I’m supposed to just cope with the cards I have been dealt and make that lemonade or whatever other such nonsense cliché’ allegedly will get me through this mud. This thick, sticky, mud that is heavy with guilt and pain and fear and anger and desperation and yearning for those times when my hand was held constantly and I knew it was going to be ok, simply because my hand was held.

It was that clear.

Now I am just trudging through, blinders on, tunnel vision, headed for that light at the end of that tunnel. Because I can see light. Finally.

And where there once was a crowd holding each hand, life has gone on. And on. And on. And my independence means I will take the strength they have given me over the years and use it to push me through to the end.

God I miss the entwined fingers though. It made the mud feel like crystal clear water. It made the heavy steps feel like a soft glide.

I continue to carry that feeling with me as I push.

I have no choice.

I can’t force the contact that lifts me up and carries me through. I remember when I had my first surgeries. I could have run around those hospitals. And nearly did. the healing power of a gentle touch of kindness and encouragement can sustain a person through so, so much.

it continues to sustain me. And I am nearly there.

I know everything may never been totally the same, but after I shower off this mud and run a comb through my hair, maybe, just maybe, everyone will see it’s still me.

I don’t know what to write.

That’s not true. I do know what to write, I’m just not sure I can.

I’m working very hard to regain my health…so hard that I’m slowly tapering down the evil steroid Prednisone and slowly ramping up my physical activity. But all of this must happen very slowly. If I go too fast, I’ll end up back in a hospital bed. If I do too much, the disability watchdogs will say I should be working and deny my appeal.

If I say too much, I’m criticized for doing it wrong. I’m not eating healthy enough or not walking enough or not juicing enough or not cleansing enough or not… you get the idea.

Meanwhile I’m just trying my hardest to keep it all together. We’re trying like hell to make JP Morgan Chase happy and satisfy their every document whim so they will modify our mortgage. With my long-term disability and our home being in Southern California underwater land, we meet all the application’s qualifications. However they continue to make us jump through hoop after hoop after hoop. They have our checking account, our savings account, and both of our mortgages…yet continue to ask us for statements. We’ve been told our paper work is ‘clean’ and our application ‘clean’ and our documentation ‘spotless’ yet we can’t seem to get an answer from anyone as to when we might hear if we will be offered any relief. Relief that was supposed to trickle down to homeowners long ago, yet here we sit.

They want to know where every little deposit is coming from. I had to explain to them things like that $151 was a REFUND from the HOSPITAL who overcharged us the last time I had to stay.

Seriously.

Nevermind they are our bank and could totally just LOOK IT UP THEMSELVES.

I’m trying very hard not to let the stress of applying of Social Security Disability, waiting for a determination on my long-term disability from Mutual of Omaha, and the mortgage modification affect my recovery. But add in some other personal matters and I just want to scream.

Didn’t the President say no one should lose their home because they got sick? Because it’s happening to us.

Didn’t the President say no one should have to worry about fighting insurance companies while fighting for their life? Because it’s happening to us.

We are not asking for hand outs. We’re asking for what we paid into in the event something like this were to happen.

But no matter. I’m concentrating my best on continuing to get well. It is all I have and it is all I can do. I will never be as sick as I was. Never. I refuse.

It’s just really hard to keep the stress level down when you are being asked questions like ‘What were you like before your illness?’ and ‘Explain where this $200 check from someone with your maiden name came from?’

I want to tell them all to fuck off. But I can’t. I have to be polite. I have to hand over every piece of evidence I can find, even if they already have five copies of it already. I have to explain that I used to pack lunches for the kids, take them to school, then hop on a plane to take meetings with White House Senior staff and be home in time to make my husband dinner and go on that field trip with the kids. And then I have to explain those checks were loans from family, or a gift from family, or simply a nice gesture from my Mom who wanted to buy us dinner out.

Ideally if you get sick there should be legions of advocates taking care of all the bullshit so all you and your family need to do is enjoy one another and heal.

When I come out the other side of this, I have no doubt I will create an organization that does this if one does not already exist. Because chronic and serious illness tears families a part. The strain is more than I can explain in a simple blog post. It is not just financial. It is not just emotional. It is every day life.

I’m coming to terms that I will never be the same person I was before this all began. I’ve changed in ways I can’t explain just yet, and when I am healthy again…a road I am on and successfully navigating…I will still remain me at the core, but much of me is now dedicated to healing not only myself but my family. Much of me is also determined to make sure other families do not go through what we are going through.

I want laughter to reign in our home, regardless of what the four walls look like. I want stress to only make an appearance occasionally and in mundane, routine life situations.

I want to show everyone I am not dead, I am not that far from the woman I was, and I am NOT changed at my core. The woman I was before this illness would have fought like hell to make sure her family didn’t lose their house because she got sick…and that certainly is the woman I remain today. I’m fighting.

There is something horribly wrong when people rail against giving health care to millions of Americans- millions like me. There is something wrong when a key component of this upcoming election is to repeal landmark legislation that is a step in the right direction in changing the system so my family, and others, can breathe a little easier and NOT stress as much.

Just as I refuse to go back in my health, I also refuse to turn back the clock of progress in this country. We must continue to move forward. It is hard to move this slowly forward. Believe me, I know. But it is essential.

As my doctor explained, it’s like walking a tight rope. We have to put one foot in front of the other very carefully. A foot as I leave the steroids behind. A foot as we hope the Supreme Court upholds the Affordable Care Act. A foot as I turn down opportunities that might compromise my health. A foot as I lower my pain medication. A foot as I walk around the block with the dog. A foot as I drive myself to the post office to send off another packet of documents.

All while navigating the emotional turmoil and landmines left by the illness that are out of my control. You see, no one is holding my hand as I slowly put one foot in front of the other. This is my illness, not anyone else’s. So I step forward alone.

Unfortunately each step reverberates. I may be the one with Lupus but the mortgage covers all who live in this house- they are not sick. I will keep putting one foot in front of the other.

It is all I can do.