I haven’t felt much like writing. I haven’t felt much like doing anything, really.

My husband had surgery on his shoulder over the Thanksgiving holiday and it brought back every memory in the world for me when I was down and out after three surgeries and my eventual Lupus diagnosis. Except this time I was able to at least be the caregiver, instead of being the one laying in the hospital bed.

Of course he didn’t need to stay inpatient and he’s already back to work. The differences between us are like night and day. I’m so happy he’s healing well and I’m so happy his recovery is going smoothly. We deserve at least that.

The kids have handled it well and I’m so very proud of them. I think the only one having issues is MOM. Being the over-emotional, idiot I am. PTSD? Who knows.

I want this nightmare put past us so badly I’m having real trouble focusing on taking things slow. I want it all NOW and I want it all OVER WITH. As my body slowly gets better, and fatter from the steroids, I want my old body back IMMEDIATELY and I want life as it was. Exactly as it was.

I’m willing to make a few compromises. I’ll slow down with certain things. I will. I’ve learned to listen to my body. I’ve learned to eat better. I’ve learned to do a lot. But I want these extra 100lbs OFF ME NOW and I want to feel like a human being again.

I do not feel human. At all. Every day is just a waiting day. I wait for my real life to start over again.

Sure I try to live in the now and enjoy moments with the kids and with my husband but mostly I wait and wait and wait for my body to come back and my life to come back. Why I equate the two, I’m not sure. Other than it’s where my comfort zone seems to be. I’m uncomfortable physically. Rolling over. Washing. You name it. I’m uncomfortable in public. I feel like myself on the inside, and then wonder why people treat me differently…and then remember I don’t look the same on the outside.

I see myself in the mirror and I look hideous. I am obese. I am filled with drugs that have puffed me up so awkwardly I can’t even fit into clothes that are MADE for larger women. That’s how this steroid weight comes on…wrong. All wrong.

By January 1st I hope to be off the steroids. If that is the case, I plan on creating a very strict diet with my doctor and I doing what I am allowed physically in order to get this weight off. Sadly, I have not been eating poorly. So I am scared that once off the prednisone not much will change.

I’m scared of many things.

Yes, I’ve learned to love who I am, but it’s a different kind of love. I know I can be better- healthier- because I’ve seen it. I’ve been there. I realize this drug has saved my life and I am thankful, but now I want to move on. I want the side effects gone. According to my doctor the risks have now outweighed the benefits. No pun intended.

So the drug cocktail continues to be tweaked as I continue to make progress. It’s just so slow. And the slowness is killing me worse than the disease. Two years are a long time to wait to get your life back. So I’m taking back the parts of my life I have control over.

I guess I just thought we’d be further along by now. I guess this holiday season I thought I’d be in some slinky dress ready to make my debut to the world again, running 5ks with my husband and having him show me off.

Instead I want to hide. I’m embarrassed. I’m embarrassed for my family. I want them to be proud of me. I WILL make them proud.

First by beating this disease and second by getting as close back to the normal ‘me’ as possible. And I swear this on my life it will happen. I’ve never been more determined. Ever.

Now to find a way to make my body cooperate.

So this is what it feels like.

I began shaking in the waiting room as I waited to be told my husband successfully completed shoulder surgery. I shook so violently that I got up and walked around and eventually walked myself downstairs and across the street to a nearby market.

My heart was beating so fast I thought for sure the cashier would see it come out of my chest as I paid for my fruit and chocolate.

Fruit and chocolate? Who buys fruits and chocolate anyway while their husband lays split open on an operating table?

Is this how he felt during all my surgeries? Is this how he felt every single time I was admitted to the hospital? Taken to the ER? Rushed into those doors unable to speak with my left side slumping?

No. It had to be worse.

And now I watch him sleep and recover. Just as he has watched me do a million times. As he watches me do daily during treatment weeks and chemo weeks- which just happened to be THIS week.

Somehow I managed to get through treatment and getting the kids ready for their multicultural festival for Thanksgiving (the famous Kotecki pierogis HAD to be there) and the double dose of chemo and then this surgery that I swear ripped my heart from my chest.

I knew I couldn’t lose him. Ever. I just had no idea how scary it was to be on that edge. And how many times my body has put him on that edge.

I still feel like there is a 20lbs weight on my chest and we are home and he is resting. I’m in awe that this is what I have put my family through so many times with this disease of mine.

I want to wrap them all up in my arms and swear to them I am never in pain, I am never sick, I am never leaving…even if it’s all a lie to just make them exhale this weight they too must feel on their chests.

The intensity of love is a wonderful and absolutely horrifying thing. It knocks the wind out of you in the most amazing ways, and reminds you exactly where you are supposed to be, with whom, and why.

This is my place. This is his place. And I will fight like hell to keep all of us in the places we belong.

Forever.

The last thing I wanted to do today was talk about being sick.

I just was not in the mood.

But as it turns out, today was one of those days I couldn’t get out of it.

It has turned into a job, as of late…the whole ‘talking about being sick’ thing. And that can be wonderful. People are being helped. Eyes are being opened. Money raised. Research done. Patients feeling less alone. I’m proud of all of this. I really am. I will continue to do it. I really will. But life has been kicking my ass as of late and it was one of those Sundays where I had zero desire to allow someone intimate access into my life, my home, my everything so it could be documented for the cause.

I wanted to sleep in and drink tea and read a book and knit. I wanted to go see a movie with my husband. I wanted to finish a monopoly game with the kids.

I wanted to NOT think about how grotesque I currently feel. How even my PJs hate my steroid body and how the heat has given me rashes in places I didn’t know you could get rashes, or that I had places.

I’ve been cranky for days waiting for medication to kick in and steroids to taper off. More swollen than usual. I bet if you threw me in the Pacific I’d bob up and down like a buoy.

So of course a photographer was going to follow me around all day. And take as many photos as humanly possible. Because it wasn’t enough that sitting over my laundry that morning I couldn’t even find a bra that was comfortable and it was reducing me to tears, I had to try and look presentable for the world.

The last time I looked presentable for the world my own grandfather pretended he didn’t know me and basically disowned me in front of his nursing home staff.

That’s not my granddaughter.

It’s ok grandpa. Really. I get it. I don’t know her either. I’m getting to know her though. She’s still pretty cool. But I get it. You’re not the only one, so don’t feel bad.

I am just so tired. The roller coaster. I feel like I am doing so well and fighting so hard and I have come so, so far. HELLO… DO YOU SEE HOW FAR I HAVE COME??!!!! HELLO!!! MEE!!!!! OVER HERE??!!!!

…and then someone sees and I stop flapping my arms because I realize they aren’t my arms and I cover them all embarrassed like and slink away back into my new found place of quiet where I just play the role of Mom. I don’t really tweet or facebook or talk to anyone or text or call anyone. I just go see my doctor, and take care of the kids.

Rinse, lather, repeat.

It’s safer that way.

I don’t get accused of doing too much or too little. I don’t talk to anyone about my illness or how it makes me feel. I don’t talk, period. I just wait.

Wait for the weight to come off. Wait for the steroids to be gone. Wait to be taken up on my constant offer of celebrating life. Because I’m here and I just want to enjoy the ones I love most.

Which put me in this ridiculous position of trying to help so many others ‘like’ me. As if we all have some sort of magic ‘sameness’ that we all KNOW we do not. As anyone with a chronic illness well knows, the ‘chronic’ part of that description of our lives sucks way worse than the ‘illness’ part.

But maybe that is why I got dressed anyway. I didn’t cancel. I didn’t call and stop the whole thing. Because I am hoping that by some miracle, chronicling this entire portion of my life…horrible bits and all, vulnerable parts and all, will mean something when this portion is over. Will help someone.

Even if it’s just myself.

So yes, today I was followed by a lovely photographer. For the second time. My family seems to keep tolerating these intrusions although we’ll see for how much longer.

And tomorrow, after I get the kids off to school, I plan on having tea and knitting.

Yes, I’m gearing up for Tuesday. Yes, I care more than I can possibly explain. Maybe that is why all of this is also so hard. The idea that on top of everything else, the fight, the struggle, the absolute essence of all we’ve worked for could be gone as the nation votes is not helping my mood. I can not believe half of the country is willing to play with my life, my family, my health in this manner…

…you can read my final blog post for the President’s re-election campaign at BarackObama.com right now, and please feel free to share it with as many people as possible before they head to the polls.

In the meantime, I’ll be over here. Hunkered down in my corner with my tea and my knitting (doctor approved in 15 minute increments before a joint stretch…but I can’t even go that long yet so don’t worry) and working on my diet.

Eventually my grandfather will see me again. As will others.

And, eventually, I will want them to.