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.

The Romney campaign is out with a new ad talking about Ann Romney’s Multiple Sclerosis diagnosis and her ‘soul mate’ Mitt’s reaction and subsequent handling of her chronic illness.

Their children weigh in. There is a link to donate to the National Multiple Sclerosis Society and for those of us like Ann, with chronic auto-immune diseases, it’s all very touching and nice.

Unfortunately it doesn’t say a word about what ‘President’ Romney would do for people like Ann and I. Not one. Single. Word.

Since Mitt isn’t my soul mate I’m going to guess he won’t be there to hold my hand or see me through to the other side. Or to make sure he’ll stand by me since I too can’t do the things I once did.

My husband has done the same as Mitt Romney thus far, but he’s not running for President. So as of right now, Aaron has done just as much for me (politically) if not more than Mitt Romney.

What we do know is candidate Mitt would repeal the Affordable Care Act– the groundbreaking legislation that would make sure my and Ann’s disease would not mean we’d lose our insurance coverage, or making sure there is an end to lifetime limits of benefits.

I’m sure Ann and Mitt understand how expensive a chronic auto-immune disorder is…right? They know that those of us who have worked (be it as stay-at-home moms or in the traditional work force- I have done both) now can not bring home that paycheck. They get that, right? I mean…what with this sweet video showing me their love, they surely understand how hard it is financially.

My doctor has told me I have a choice: I can go back to work and get sicker, lose more organs and potentially my life…or I can accept that my illness has rendered me disabled and become content with taking care of my young children as best I can while receiving IV infusions several times per month.

Ann and Mitt get that, I am sure…because they live it. I mean, that’s what the video tells me. Certainly they understand the loss of my paycheck because of my disease has been a terrible burden on my family. And certainly they understand, given Ann’s condition, that the medical bills piling up (with our very good insurance) and the loss of income means families like ours need things like long-term disability programs – be they social security or private insurance through our former jobs.

They SURELY understand that, right? So Mitt would CERTAINLY, given his love of his soul mate and total understanding for what a chronic auto-immune disease does to a family, endorse what the National MS Society endorses in ‘Obamacare’ – right? Because he and Ann GET IT. They GET how hard it is. They GET how much we suffer. THEY GET IT… because their new VIDEO TELLS ME SO.

Oh wait. The new video doesn’t say that. So let’s try and figure out what Mitt would do..since he understands.

As it turns out his ideas for health care would leave people like Ann and I out in the cold. Compared with the Affordable Care Act, Romney’s plan would leave millions of people dropped from their employer plans. Wow. What a plan for his soul mate and those of us like her! How …caring?

I applaud the Romney campaign for releasing a campaign video giving people information on how to donate to an auto-immune disease organization that endorsed ‘Obamacare.’ But I would clap a whole lot louder if the candidate himself would stand up for people like his wife and myself and support policies that wouldn’t leave us on the street.

Perhaps the Romneys don’t understand because they live in a different world than the rest of us. The one where it actually matters if your spouse loses her paycheck and has to fight to get disability (my fight is going on eight months now) in order to pay the mortgage.

You see Mitt and Ann, after Aaron and I cried together at my diagnosis, and did the same things you two did- we then had to do something else: we had to figure out how in the hell we were going to keep a roof over our heads and food in the mouths of our children and ourselves. Not to mention the thousands upon thousands of dollars in medical costs for my treatment.

So you can take your new ad and get all teary while viewing it in your screening room at your ocean view mansion with its car elevators, while we continue to fight for my disability payments and send in paperwork and documentation to hopefully be approved for a home loan modification. A part of the process you seem to leave out of that touching video.

You also seem to leave out how a chronic illness financially destroys a family, bankrupts millions, leaves many of us wondering how in the hell we are going to pay for treatment and the bills. If I sound a bit upset, it’s because I am. Your video just slapped me in the face, hard.

Do not relive with me and my family how hard it is to get a devastating diagnosis and show me what a stand up husband you are and then offer me NOTHING about what you would do as President for those of us like you and your soul mate.

That’s why we will be fighting for President Obama who has actually outlined and enacted policies endorsed by not only the charity you promote at the end of that video, but almost every other auto-immune organization in existence. Because his policies will HELP families like mine.

It takes more than a soul mate to get through multiple sclerosis or lupus or rheumatoid arthritis. For those of us fighting the battle, like Ann, it is a daily struggle you seem to not fully grasp.

I’m sure glad President Obama does.

I needed something.

I needed a goal.

I know I have months, no… I have years of these treatments ahead of me and while I know they are working, I needed…something.

Right now my life consists of trying (and mostly failing) to keep those I love living their lives as normally as possible. Keeping them happy. Keeping them oblivious to what I go through daily. Keeping them happy. Did I mention that already?

You’d think that would be easy, but it’s nearly impossible.

While the kids probably remain the least affected, my husband has found his own ways to cope. One way being his inspiring 5k, mud run, and half marathon running. He is in amazing shape and continues to bury his old records with every new race. I am insanely jealous of his determination and dedication to his health and his goals. Not to mention his hot, hot bod.

Meanwhile, my job has been to sit and take pill after pill and infusion after infusion. The steroids have left me sloth like. So when word came that my infusions are, in fact, working…a twinkle of hope awoke inside of me. But even that twinkle can be snuffed out quickly when I think of all the work that remains ahead.

There are just so many more IVs to go. So many more treatment sessions. So many more days of 4-6 hours with that damn thing in my arm pumping the only drugs that seem to be doing anything for my body in and through and in and through.

And all I do is worry about the kids and Aaron. It is almost to consuming at times. My mind working overtime trying to come up with ways I can ease the pain, the stress, the never-ending worry. Did I mention the constant worry?

All the while I haven’t done a thing for myself. Sure I’ve bought myself  some clothing out of necessity. But I realize now that I have done absolutely nothing since I got sick except work really hard to NOT be sick. Doctor appointments. More doctor appointments.

I can’t really go out. Well, I can but I can’t. Going out for lunch means staggering my afternoon dose of pain pills so I can drive. Or asking someone to pick me up and take me.

So I really don’t have a social life. Unless you count gossip from the nurses my social life.

I am not working, so there are no co-workers to chat with. I’m probably overly chatty with the kids’ teachers and principal and other administrators because they are adults and WOW LOOK ADULTS THAT ARE NOT WEARING SCRUBS!

Which leads me back to my goals. Now that I’m feeling a bit better, and we’re lowering the evil steroids that have made me the size of Jabba the Hut and one of the most undesirable women on earth…goal #1 is to lose the steroid weight and get my body back in shape.

It will be my hardest goal, thus why it’s #1. I’m so restricted right now in what I can and can’t do that walking the dog -very, very slow- just a few houses, is about it for me.

Which leaves me with diet. Even if I eat next to nothing, the prednisone doesn’t seem to care. At least, according to my doctor, not until we get me tapered down to 7mg or 5mg. Right now I’m at 12.5mg. Next week we’ll try 10mg. And next weekend I plan on re-joining a nationally renowned weight loss program. I may not lose a single pound until I’m off the steroids, but at least I will be establishing good habits for when the time comes.

Leading me to Goal #2- feeling hot, feeling like myself, taking my body back for ME. I want to have more work done on the tattoo on my back, and I want it to snake down to where all those damn IVs go.

So as a reminder as to where I will END UP, today I got a new tattoo- the goal tattoo. The one where all the others will end when this journey is finally over, or at least when it’s wound down and life is at rest at its new normal.

It will also serve as a reminder each time that IV goes in. Each time they take blood. Each day I sit there over and over and over again feeling worthless and like a waste…a reminder that all of this is worth it. My children need their mother. My husband needs his wife. I am not replaceable and there is no other me.

What they don’t tell you about chronic illness is it makes you question if those who love you would be better off if you did succumb to your illness. If they would find peace and no stress and have a ‘normal’ life with some healthy woman who could do all the things you can’t and give them all the things you can’t.

…and as you fight for your life your mind wanders to the dark places no one’s mind should ever wander. Because there is only one you. No one does things the way you do, sick or well. No one. No one loves them the way you do and no one ever will.

So goals are set. They may seem like small goals to the average person, but a year ago I was in so much pain on a regular basis I was in and out of the hospital just so I could be made comfortable. Which makes my small goals REALLY HUGE and really important steps to taking back my life.

Now that we have the right cocktail mix and we head towards remission, I’m setting these goals so I can take back control and take back some of my body. Lupus may always be there, but can never have all of me.

And then, once my body is back under my control…we make more goals. I want to return to work. I want to travel. I want to walk my kids around Disney World and hold my husband’s hand…not have him push me in a wheelchair.

I want to enter a room and flirt with the bartender while Aaron puts his arm around my waist and leads me to a table of friends who talk to us about work and kids and life and not once mention doctors or illness or hospitals.

I want to live again, and not in this half-life where sit for hours with an IV in my arm waiting to feel better.

I’m getting there. I’m thrilled to have been healthy enough and strong enough to achieve a goal today. A small, but important goal that will serve as a reminder of all the others to come.

Just one more step along this road, but I am happy to say this step moves forward. This step is my doing. This step was ALL ME.

…and it was fucking huge.