Who Knew Getting Better Was Such Hard Work?

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.