Along with many millions of others we watched the Opening Ceremonies of the Olympics with our family last night.

I was struck to the point of near shock that among all the dancing and music and fun, the creators chose to showcase the NHS, of the UK as part of the Olympic celebrations.

It was at that moment, as the nurses danced around, I distinctly remembered one of my many hospital stays here in California. I was in horrible pain from my SLE and RA and the inflammation was running rampant throughout my body. The nurse has been buzzed to get me 2ml of dilaudid. A very powerful narcotic and usually my last resort when it feels my body just can’t take anymore.

Another woman had walked in just before the nurse. She identified herself as someone with the hospital. A patient advocate and specialist in accounting, or some odd name she gave herself. She had explained to me our insurance company was in a fight with the hospital and they weren’t sure if they were going to need to transfer me or if they would have to keep me because the closest hospital not arguing with my insurance company did not have a bed for me.

Regardless, she needed money because of this fight, because who knows when they might get paid by my insurance carrier.

I was hurting so bad. I didn’t care. All I wanted was my nurse with the drugs. I just wanted relief. And I wanted this woman with the clipboard to get the hell out.

The nurse finally came in, drugs in hand, and saw the hospital administrator at my bedside. She began to retreat.

No. No. Please… it’s ok. Come in. Please. I need my pain medication. 

The nurse looked a the woman with the clipboard. Looked back at me. Looked back at the woman with the clipboard. I was begging her with my eyes to put the medication in the IV NOW and she could tell. She kindly, mercifully, walked to my port and began her work.

So did Cruella de Vil.

Mrs. Vest I can reach your purse for you if you’d like to write us a check.

Sweet relief kicks in almost instantaneously as the drugs make their way through my veins.

Mrs. Vest I’ve put your purse on your bed. Will this be check or card? 

I’m trying to think. I can’t think. I shouldn’t pay her now. While I’m high. I need to think.

Maybe you should come back? I really don’t want to switch hospitals, my children are only a mile away from here. They aren’t allowed at the other hospital and it’s so far away. 

And I begin to doze.

Mrs. Vest. I said will that be check or charge? 

Hmmm.. .oh. Check. I guess. Check? I’m writing a check?

Yes. Here is a pen.

I can stamp the hospital name on it so you don’t’ have to write that part out. 

And then I woke up. Hours later. It seems I had the presence of mind to tweet my experience while it was happening knowing it was wrong and horrible and I had a twitter stream full of people replying to me with things like ‘DO NOT GIVE THEM A CHECK ERIN’ and ‘DO NOT PAY THEM RIGHT NOW.’

But I did. I gave them a ton of money while drugged out of my mind.

In contrast, there was Great Britain, celebrating their safety net. Celebrating that no woman would ever badger a drugged patient for money while she moans in pain in one of their hospitals. Celebrating that no matter how poor, how disadvantaged, a sick person is never turned away.

Is it a perfect system? Heavens no. But it is common sense and decency and something they SHOULD be proud of across the pond. They SHOULD celebrate they are not out for profit when saving lives. They are simply out to save lives. To keep their citizens more healthy. Alive.

All the American system has done is take my money. At my weakest, it’s only wanted my checkbook. It has only leant a helping hand when forced via the Affordable Care Act aka Obamacare. That has been the ONLY change getting us closer to a realm of decency the British have already figured out.

There is a huge lesson to be taken away from the opening ceremonies:

Pride should be felt by a nation when they offer a healing hand to the sick. Shame should be felt by Americans who also seem to offer their hand, but only the palm-face up, waiting for it to be filled before they even consider the sick woman reaching up.

I have this fantastic habit of not telling you guys things that are REALLY IMPORTANT until I just randomly show up somewhere and say ‘TA DA!’ and squeeeeee and then unveil I have taken your questions to the leader of the free world or something like that.

I know it drives you insane, and makes you all swear at me…but usually you get pretty cool things out of it and I get to sit back and smile.

I haven’t gotten to do that lately. My illness has taken the fun and the triumph out of many things in my life, including being able to surprise all of you and bring you along for the crazy ride with me.

As it turns out, even my illness and this blogging life of mine has a few surprises left. I guess you really can’t keep a good woman down.

I’ll be joining Katie Couric on her new show with some familiar faces so we can all sit down and talk about courage, the need to be fabulous, and that infamous Red Dress. Yes, the one that sat in my bedroom, in the shipping box from fellow Katie guest MochaMomma, for about six months until I was forced to try to put it on and attempt to feel the magic.

I should say I stubbornly put it on. I wasn’t ready and I didn’t want to believe.

A lot has happened since I broke down and squeezed my over-medicated, Lupus ravaged, fat body into the original Red Dress.

…But if you want to know more, you’ll have to watch the Katie Show to find out 😉

I’ve been gun-shy to write.

There is so much going on it’s hard to not only keep my blog up-to-date, but keep myself in check when writing.

No, I’m not censoring. But thee are things I write that are just for me. Writing is part of my therapy. There are also things I write that are just to rant. And as you all know, once I get going, sometimes there is no stopping me. And lately, there is writing for you, the reader.

I’m getting more and more emails. More and more messages. More and more of you reaching out to say “It’s not just you, it’s me too” and “my family is going through the same thing” or even “I’m so glad you are putting words to the struggle we face ever single day.”

Which leads me to think hard about what I put on these pages. I want it to be honest. I want it to be real. Authentic. But I also want it to not hurt so bad for me, for you, for all of us as we move forward in our world where these ups and downs of chronic illness hit us all hard.

Right now I’m feeling better. I can walk a bit further. I can do a bit more. Of course it’s not anywhere near what a normal person can do, but its huge progress for me.

This scares the hell out of me. I can’t tell you how much it scares me.

It was almost easier being sick as hell and not having a treatment that worked well enough to pull me forward. Sound strange? Let me explain:

Now I have hope. I have hope that I will go back to work soon. I have hope that I will walk and then run. I will exercise. I will lose all the prednisone weight. I will do everything I did before I got sick.

That’s a scary place to be when you know at any time you can go backwards if Lupus or RA or Fibro flares and my numbers rise again and all my hope turns to despair.

I can’t get the kids’ hopes up. I can’t get my husband’s hopes up. I can’t let anyone think things might….just might…be normal again. Because they will never be normal again.

Everything has changed. And nothing will ever, ever be the same.

Nothing makes me more angry than that fact. Because there is nothing I want more than for life to be what it was before this all started.

What I do know, is that there is progress. Slow, steady progress. And as I get stronger, my hope grows. But I keep so much of it inside it makes me burst into tears when I am alone.

I am so afraid of being sick again.

Correction: I am so afraid of going backwards, because I remain sick. I want to keep moving forward. I want to keep showing those I love I can do this. I can get better. This is really happening. It is.

But one small step back and the emotions flood. The what ifs. The what ifs this is as good as it gets for me? What if this is as healthy as I can be?

No. No. Forward. I keep moving forward. I have to. I won’t accept anything less. And I will continue to move at a slow, steady pace so it remains safe.

Safe. Safe. Safe. It has to quiet the hope in my head.

Because hope is a dangerous thing.