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Mom, I Can See The Curvature of the Earth

December 4, 2012 by 8 Comments

My son has spent over three hours looking out the window of our plane.

He doesn’t want to play on his iPad.

He has no interest in the little books and games and gifts I brought to keep him and his sister busy on this over four hour flight.

I am the luckiest Mom ever- these are my kids post pick up. #theymissedeachother

He’s just been staring out the window. No really, a nine-year old boy who never stops moving has been doing absolutely nothing but looking out a window for HOURS.

Mom do you think the clouds can feel us splitting them apart when we fly through them? Ok I know they can’t really feel but do you think clouds would rather be all together and not broken up by anything, like a plane or a bird or anything?

Mom do you think the  pilot really thinks all that turbulence is bad or do you think he just wants us in our seats?  That’s why school should be on planes: because it’s so beautiful everyone would pay attention and when they didn’t the teacher could put on the seat belt sign. 

Mom, do you think the air that goes through and around the planes gets mixed up in the clouds and the clouds are somehow changed by it? Like could those clouds end up being clouds they shouldn’t have been?

Mom, see where that cloud reaches that mountain over there? See that area right in the middle where is just doesn’t touch and there is that teeny tiny bit of space? That space is the most beautiful space ever. 

Mom, do you think when we fly at Christmas time there will also be clouds or do you think the sky will just have nothing? 

Mom, I need a tissue. I’m sorry, I don’t mean to cry. It’s just all so wonderful and beautiful. 

We’re now on hour four. And yes, THAT is my son.

Filed Under: Count Waffles, Feeling YaYa, Stepford Crazies

Cooperation.

November 27, 2012 by 23 Comments

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.

Filed Under: #SUCKITLupus

Fruit and Chocolate

November 16, 2012 by 3 Comments

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.

Not a fan

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.

Filed Under: #SUCKITLupus

My Family Thanks YOU: Four More Years

November 6, 2012 by 8 Comments

Tears of joy as the final states were called and the President was named tonight’s winner:

Tears of joy all around. Four more years. #obama2012 #blogforobama #shevotes #blogher

…and a quick video once I gathered myself a bit:

I want to thank everyone who worked on this election for all of their hard work. From my family to yours…my deepest thank you. From our hearts.

My children have had the privilege of seeing this election from the inside. They were at the Democratic National Convention in Charlotte, North Carolina. They voted with me. They have watched endless hours of news, heard me speak on the matter, heard their Dad talk about it and all the issues involved.

If anything else has been learned from all from all of this, it has been that children are smart and they cut to chase. As my son said today, “Obama has to win, because  Romney has only been for some people while the President has been for EVERYONE.”

Tonight it seems America agreed with my nine-year old. Now let’s hope everyone can come together and find common ground to move FORWARD.

 

Filed Under: Obama2012

Of Course

November 5, 2012 by 6 Comments

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.

Family night! Monopoly!

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.

Filed Under: #SUCKITLupus

Four Years Later: Indivisible

October 27, 2012 by 13 Comments

I can tell you that many, many things have changed in our home in the past four years.

From celebrating the election of President Obama, who I backed earlier in the race than some which got me into a good bit of hot water, to my first visit to the White House.

Yes, the first year of the Obama Administration was a whirlwind for myself and my family.

I had taken on my first full-time  job since having our first child and thrown myself in the same way I throw myself into everything- with all I have. I traveled, I spoke in front of small crowds, large audiences, students, and chatted it up with national news outlets.

My mission was to make sure the world knew that women online were a force. They could not only be the difference in elections but also change the world.

I’d like to think I succeeded in spreading the word and creating opportunities for every woman. The stay at home Mom, the career woman, the childfree, the childfull, the hobby writer, the hard core moneymaking writer, and even the just finding her way blogger.

At home, I would like to think I put just as much effort into my children and into my marriage. Making dinner when I could, making sure everyone was where they needed to be, had what they needed to have in their possession, got done what needed to be done, and was loved ridiculously along the way.

I was exhausted, but happy. It was chaotic, but fun. I looked forward to important conference calls, parent teacher talks, and husband wife romps later on.

And just as my life began to reach the peak of where I had always hoped it would be, everything came crashing down.

Everything.

And now nothing is where is should be. Where it was. Or where I want it to be. Parts of my body are missing. I do not recognize myself in the mirror and when I do, I struggle with what I see.

I try so very hard to keep the normalcy of what once was, only to find I’m the only one still trying. Or at least, the only one who seems to think life can go on just as it was.

Before Lupus.

BL. AL. It’s like Before Christ and After Christ, but without all the miracles.

I now cherish every moment I have with so much more enthusiasm than I thought possible, only to find blank stares from the kids with the typical ‘Mom, stop hugging me so tight’ eyeroll. And that romp in bed is more of a snore induced by drugs and the hope of maybe a kiss before work. Hope being a strong word.

I feel like I am living someone else’s life. Because this certainly is not the life I planned. It’s not the life I had. It’s not the life I want.

But it is, currently, the life I am given.

So I remain grateful that the stroke wasn’t even detected until after, and the rehabilitation was minimal. That I only lost part of my colon, not all of my colon, and I do not have to wear a bag…which certainly would have destroyed any hope I had of a sex life.

I remain grateful not having a gall bladder means I can only have one or two fried pickles instead of a basket full, keeping the 100lbs I have gained from steroids to just 100lbs.

And I will forever pretend I am grateful that the total hysterectomy, which finally rid me of the excruciating pain from the inflammation destroying my uterus and ovaries. I will never have another period and never have to carry tampons or pads or worry about any of that mess ever again. Even if it has destroyed me emotionally in too many ways to count.

I’m grateful my little family has grown closer in many ways, having gone through a tremendous crisis that my kids can now talk to producers on camera about it:

…the worst was when she got sick on Mother’s Day..WHY WHY DID IT HAVE TO BE THAT DAY!!

Now it only reduces me to minor humiliation and minor, inner sobbing.

Just like every single day when everyone finally walks out the door to go about their lives, and if I don’t have to leave for the doctor I sit here wondering what to do with my life…feeling again, only minor humiliation that I no longer am what I was to any of them, yet am something different. Some of which I am proud of, most of which I am not.

As I grow stronger, as we get a handle on this beast, I am getting a handle on me. And she’s pissed off.

I have no one to talk to about this anymore, because frankly no one should have to talk with me all the time about this. They deserve a break and a normal life. So I write here. After so many years- getting sick just after President Obama was elected, and now coming up on the next election, all of this is old old old old old.

And the truth of the matter is I hate it. And while I understand things will not be the same, I want them as close to the same as they can get. And I am fighting so fucking hard to get there. So hard. Too hard maybe.

I know I am the only one who can fight, I just miss doing it with locked arms all around me.  My husband, my mother, my brother, my father- all my biggest supporters have their own lives that must be tended to and they can’t spend four years on me, me, me, and only me. I don’t expect them to. And I do appreciate their support now when it’s given. They remain amazing and there for me. In very different ways now, of course. But they are there. For that I am grateful. So many have lost their family over so much less. I’m trying to remind myself of that as I trudge through.

So four years later I keep getting asked over and over and over again if my life is better than it was four years ago.

I got mail #Obama2012

No. No my life is not ‘better’- but that depends greatly how we are qualifying ‘better.’

It’s ‘better’ in that I am getting healthier. Stronger.

It’s ‘better’ in that our medical bills are becoming more manageable thanks to the Affordable Care Act aka ObamaCare.

It’s ‘better’ in that we did not lose our home due to foreclosure, or even get near foreclosure, because JP Morgan Chase worked with us to modify our mortgage (through HARP and HAMP) and I was finally granted the private disability check that took a chunk out of every paycheck I made with that full-time job I took after the President was elected.

It’s ‘better’ in that my daughter still has Title IX in place to play co-ed, PeeWee basketball, and she can score her very first every basket:

It’s ‘better’ in that the President has backed same-sex marriage, equal pay for women, he has repealed Don’t Ask Don’t Tell, he has taken care of Osama bin laden, he has put into place an Auto rescue of Detroit keeping many of my friends and family back in my hometown in jobs.

And, as always, his administration has taken the time to show the compassion to follow my illness and express their concern and thoughts when necessary. For that, I am grateful.

These are good people.

I don’t think any of us are where we thought we would be four years later. My family being probably more surprised than any of you.

But I know there is no way we’re going back. None. Just like I refuse to go back and allow this illness to overcome my mind, body, and soul…I refuse to let the political illness attempting to turn back the clock in this country to overcome our collective mind, body, and soul.

We are Americans and we do not give up. We have a strong family here in my home and we certainly do not give up.

I refuse to allow setbacks, and seeing that brink of the abyss, to scare me into thinking turning around is the right answer. I know nothing could be further from the truth.

I also know the hearts of all those involved. From my family, to my friends, to those working for me and you in the White House. And I know how hard *I* fight.

There is too much fight in me left to allow how far we have come to slip away with fast talking, slick, typical frat boys trying to sell me an easy fix.

There is no easy fix to Lupus, and as the President has said from day one, there is no easy fix to the mess we’re in. We will have to continue to work hard and continue to work together.

I know it is a lot to ask of anyone. We are all tired.

I’m willing to go this alone and shoulder it all for myself and for you and yours. But I ask that you join me, because we are so much stronger together. We are so much stronger when we work as a team.

We are so much stronger united.

…indivisible. Through sickness and in health. With liberty and justice…

…for all.

Filed Under: #SUCKITLupus, Feeling YaYa, Holding Court, Obama2012, Royal Decree, Stepford Crazies

Hi, I’m Erin, And I’m One of THOSE Sports Moms

October 17, 2012 by 7 Comments

I had a feeling it was in there. Ready to bubble up to the surface.

The yelling.

The coaching from the sidelines.

The yelling.

The ‘reminders’ of what the real coach wants…you know, things like ‘keep your hands up! And ‘get back on defense!’

Did I mention the yelling?

Then, somewhere during game 1, I realized I was yelling too much but I couldn’t stop.

I vowed I would try harder the next game. I really did. I even promised my MOTHER I would stop yelling so much. And she heard the video I took of the first game. She knows.

Except. Um… Well:

My baby girl scored her first basket. And ANOTHER shortly after that one!

To be fair, I wasn’t quiet before the baskets. In fact, I’m pretty certain other parents were talking about me.

But…BUT…I am never negative. Never. I cheer on the other team too. I just… um… give a bit of direction?

I don’t know what to do short of duct tape over my mouth for the next game. I really don’t.

I played basketball for too long and I want to help her out too much to just SHUT UP. But then again, shutting up is probably what WILL help her most. Maybe.

What? Someone has to tell her to shoot!

HELP ME.

Filed Under: kill me now, Princess Peanut

Today My Daughter Is At School For Malala

October 15, 2012 by 14 Comments

My daughter did not want to get out of bed this morning for school. This is nothing new. It is a scene we play out every single morning.

She rolls around and moans and whines in her bed. I send in the dog to lick her face and rouse her awake.

How @nickythepup wakes up #allhailhala every morning

Except this morning was different. This morning, when she did her usual whine and moan, the dog was laying comfortably next to me on the floor as I rubbed my little girl’s back.

I need you to get out of bed and go to school this morning for Malala.

Grumbles and a slight roll over from the bed.

Hala. I need you to get out of bed today, without any whining, without complaining for Malala.

…and then a grumpy, whiny voice comes from under the blankets.

Mom, what are you talking about, what is Malala.

No. Not WHAT is Malala…WHO is Malala.

Malala is a girl, just like you. She lives in Pakistan. And all she wants to do is go to school and learn. She wants to get out of bed every morning and learn. And the other day, she was coming home from school, and horrible men who think she should NOT be allowed to learn shot her. They shot her because she is a girl who dares to think she deserves an education. She dares to think she is just as smart as boys. She dares to think she should get to read every book and do every math worksheet and write every paper and do every report and learn and learn and learn just like every boy in Pakistan. But some of the people there do not believe that girls should learn. Malala stood up to those bullies. She stood up to the mean, horrible men who believe girls should not be allowed to go to school. And she went to school. So you, you will get out of bed, and you will go to school without one whine, without one moan, without one complaint…because you are lucky to live in a country where you CAN.

Slowly my daughter got out of bed. Looking at me with confusion. She got dressed with me watching, and we went into my room where she brushed her teeth and continued to get herself ready for school. So far, she hadn’t said a word. She was still processing everything I had told her. The silence was deafening.

I wasn’t sure I was going to tell her. She is only seven. A seven-year old should be not burdened by the evil in this world. But she is also old enough to understand that she is extremely fortunate to be able to get an education in a world that still does not treat its females with the respect and reverence it treats its males.

She has noticed this recently. She sees it. She has asked me questions. So when she did not want to get out of bed for school, it seemed only natural I remind her there are thousands of girls who would give anything to be getting out of bed this morning to go to school, possibly none more than Malala.

Finally,  while I brushed her hair, my daughter spoke about what I had said to get her out of bed and moving:

Do you think she’s going to be ok?

Who honey?

The girl, the girl who wants to learn and they hurt…

Oh. I hope so. But I’m not sure. They got her out of Pakistan and she is in England where doctors are working right now to try and help her. I haven’t seen the news yet but I know they got her to a hospital in England.

She has to be ok Mom. She has to be. And those men, the ones that hurt her…they probably won’t get in trouble, will they?

I don’t know honey. They do things differently in that country. It’s not like our country.

I know but, they are men. So they probably won’t get in that much trouble, even if they do get in trouble.

I continued to brush her hair, listening, in awe at how much she understood about a situation I had only given her a fraction of information about. And I answered as best I could without depressing her entirely. It didn’t matter though, she seemed to grasp exactly what was going on, and exactly how dire the situation is for women and girls.

Mom, it used to be like that here, didn’t it?

Well, not exactly. But there was a time when women couldn’t vote and there were only women’s schools- and at a lot of those schools they only taught things like cooking and how to take care of your husband…getting you ready to be a ‘good wife.’

What if I don’t want to be a wife?

Well it’s a good thing that things aren’t like they used to be, then, huh? You can now be anything you want, and you do not have to get married, or you can if you want. It’s up to you.

I’m glad it’s up to me. I want a ranch, and horses, and I might get married or I might not. We’ll see. But I want that girl to be ok Mom. She should come to school here. Why doesn’t she just move here?

Well, it’s not that simple. She wants to make sure girls in her country are treated equally. She could just come here, but she wouldn’t be able to forget about all the other girls still in Pakistan who are scared into saying home from school. Scared into putting down their books. She can’t forget about them, can she?

No. No. But all the girls could come. What if our Army guys went and got all the girls in all the places and brought them here.

But honey, what about their families? They wouldn’t want to leave their families. And they want to change their own countries. They want to change the world.

And I held her face in my hands, and I looked into her eyes.

Do you understand why you need to go to school today. And every single day.

And with a resolve I see ONLY in my daughter, especially when she’s angry, she nodded.

We then went about our usual morning. Breakfast. Shoes. Backpack grabbing…and we headed out the door.

As we left in the car I caught her in my review mirror. She was looking out the window.

Honey, are you ok?

I’m fine Mom. I’m mad.

I’m mad too.

Being a girl shouldn’t be hard.

No, it shouldn’t.

She’s going to be ok, Mom. I know she is.

And the morning continued. She met her friends at the school gate and giggled. And I watched them enter their classroom, iPads in hand, along with toys and books. So many luxuries. So much at their fingertips. She waved goodbye and I waved back. She blew me a kiss and I caught it and put it to my heart. I blew her a kiss back…and she put it on her iPad. And I knew what she meant. That’s where she keeps her books. She took my kiss and in an instant gave it to Malala, and showed me she understood those books on that iPad would be used.

She understood.

Today my daughter is at school for Malala.

Filed Under: Feeling YaYa, Princess Peanut, Stepford Crazies
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