Lupus Awareness Month. You Want a KickOff Post? You Got One

Lupus awareness purple bow on my IV by wonder nurse @alina_khodad !!!!

It hits me at the oddest times. Not ever when there is an IV in my arm or when I’m talking to a therapist…but like, just now…when I see the photo of a beautiful newborn.

And this heaviness crushes my chest and my heart begins to pound a bit faster and I feel that ache.

That ache for all those things I wanted yesterday (read: NOW) that I must wait for. For all those things I will never have. For all those things that must change because life has dealt me a hand I’m not sure how to play.

I dream about secretly saving money to take the family away on a surprise cruise. And realize I have to schedule it around treatment and make sure it’s well after that one drug I get because that drug means I catch every germ on earth and I can’t be out in public and I have to make sure … you get the idea. And my dream fades.

I dream about going back to work after having an inspiration for a project as I finished reading up on some social media political ideas and begin to plan how to approach my boss and exactly who I would want on my team. And then I remember I need to be stable between treatments for a good length of time and stop getting all these infections and setbacks, even if they are small. I remember I’ll need to ramp up to balancing work and health and life while I currently have enough trouble just balancing health and life. And my dream fades.

I dream about my honeymoon over and over.

I dream about nights out with girlfriends where we dance and I need to take a cab home.

I dream about meeting my husband for dinner with friends across town. Or by the beach. Or with his co-workers. Such simple things he does all the time with many people.

I dream about running in the park with my children, laughing. I dream about volunteering in their classes.

And then I remember I shouldn’t be out in the sun long, due to the medication. I remember I can’t run, really. I remember the germs in the classes could land me hospitalized.

The ache returns. Harder. Stronger.

I want it so bad. I have been working so hard. I take my pills, I sit with that damn IV in my arm as they infuse whatever they infuse into me day after day, week after week, month after month. I try yoga. I try the diet that is supposed to help with the steroid weight gain. I barely eat now but I’m still a prednisone oompa loompa. I have done everything the doctor’s say and yes, I’m getting better but at what cost? I know there is light at the end of this tunnel, or so they tell me…but I still can’t see it because despite FEELING better there is too much still missing.

On the days I feel good I do all I can- I have gone back to school (online only as I can’t sit in a classroom yet), I drive carpool, I make dinner and breakfast and lunches and I do the best I can with housekeeping. I’ve been trying different things, doctor approved, to help my body and mind from horseback riding with my daughter to gentle yoga to just walking the dog.

I feel like I am trying so hard some days I’m creating stress by being so very determined. Mostly because I can’t stand to feel that ache. I don’t want to feel that ache. I want that ache to go the hell away and understand there is now a new normal around and this is just how it is going to be.

Only better. Because it will keep getting better. I have come this far and I will keep going. It’s slow. It’s painfully slow. But it is happening come hell or high water because it will get better than this. THIS is the new normal for now and it will continue to morph until I am happy with my life.

Yes, I have much for which to be grateful. And believe me, every single day I celebrate. Every. Single. Day. I am happy and laughing when I open a jar without pain. I have cried when I climbed the flight of stairs to our bedroom to realize I wasn’t out of breath. I’m patting myself on the back for every ‘A’ I get in class and for every treatment week I make it through without sleeping the entire time.

All I want is someone to hold my hand and tell me this is going to pay off.

This is life with Lupus.

 

Learn more about Lupus at Lupus.org

We Will Stand There

I have an eight-year old. I have an eight-year old and a 10-year old and we always stand at the finish line well before it’s time.

Their Dad runs. And we stand there with signs and smiles and we watch with anticipation searching the sea of runners waiting for him to cross the finish line.

We’ve played this scenario out over and over again at that finish line. Sometimes right at the line. Sometimes a block before. Sometimes just after the runners cross. But we are always there.

Off we go!!!

Just like all those families were there. Just like eight-year old Martin Richard and his six-year old sister, his other sibling and their Mom. We stand there. Just like they did. We have done it so many times…because no matter how sweaty our loving runners are, we are so proud and we want that hug so bad.

As the stories pour in about so many families and so many runners and so much hurt and pain all I can do is promise that when my husband’s body is ready again we will stand there at that finish line again.

We will stand there with our signs and our smiles.

We will stand there because we are proud of our runner, but also because we will remember.

And he crosses the finish!!! #awesome80srun @aaronvest rocks!!!!

Every time we ever stand there ever again, we will always remember.

Celebrate the Joy in life NOW…RIGHT NOW

Update:

For those who are not aware yet, Dawn passed away yesterday almost as I was writing this. We wish strength and love to her husband Mike and her boys.

 

Our family doesn’t get it sometimes. Aaron and I can sit next to each other on the couch and tweet back and forth, giggling. We laugh with friends and they tweet back…it’s a community.

Dawn and Mike have always been around for those late night and middle of the day giggle sessions. They were the Ethel and Fred to our Ricky and Lucy. Or vice versa.

Dawn and I even got sick together. We even started to get better together. Then, not long ago, there was news Mike was taking Dawn to the ER. The next thing we hear there is a surgery and tumors and bleeding and the words inoperable and hospice.

I, of course, had been lost in my world of treatments and swollen ankles and worrying about things that didn’t matter. So when I caught the news it came second-hand and it very literally sucked the breath right out of me.

No. No. These are our buddies. These are the people we joke around with online and knew we’d hang out with on our next trip to Michigan- just as soon as my Doctor said I could travel. No. No. This is not happening.

Aaron and Mike understand what it’s like to be caregivers to women they love. The kids, the jobs, the meals the worry. My god the endless worry. Dawn and I could bitch about pills and surgeries and pain and being stuck in a hospital bed or on a couch. Wanting nothing more than to take the worry away from our Aaron and Mike and, most of all, our kids.

I refuse to give up hope that doctors can find a way to help Dawn. We still have trip to Michigan to make where we all have to go a Tiger’s game and eat Coney Dogs after. Our kids needs to hang out.

But most of all, Dawn and I need some girly couch time. Where we may have to rest, but we’ll rest together.

Mike is asking donations be given to Melanoma Research Foundation so smart people can continue to try to find a way to fight this asshole cancer. There is also another donation drive where the funds are going to help the family with meals, expenses.

I hope beyond hope for a miracle. And in the meantime, follow Dawn’s advice and check your skin. CHECK YOUR SKIN.

For Better or Worse

This is the week my husband and I celebrate bringing unconditional love into our lives forever. Love that no one can describe to you, that no one can begin to try to get you to grasp no matter how hard they try. Our children celebrate their birthdays. Two years and six days apart. One a decade old. The other, eight.

Beautiful signs of spring on the way to school

The rest of the country will be watching the United States’ Supreme Court hear arguments on another type of love. A love that can be legalized with the institution of marriage. Something else many find hard to put into words. Many find beyond difficult to explain the overwhelming joy it makes them feel.

My husband and I were married and had our two children. In my mind, we became a family when we declared our love for one another in front of our friends and family and even before that when we became domestic partners in the eyes of the law in order to make sure we could take care of each other in sickness and in health and in any legal matters. This happened BEFORE we were legally married.

Some would say, “…isn’t that enough?”

NO. It’s NOT enough.

Just because we were domestic partners does not mean that we were protected had we left California’s borders and it certainly did not protect us in the rest of the US and it’s territories. To this day, there is no one else I want making decisions for me should I become unable, than my husband. It does not matter why…it’s who I CHOOSE. I CHOOSE him. We are adults and adults should be able to make sure the person they want is allowed in the hospital room with them when they want, makes important legal and medical decisions, and inherits any and all and everything I find necessary-from property to personal items. And if I do not happen to write it down in time, it should be common sense this is the person who is in charge of all these things and GETS all these things. Oh, and by the way, this person also gets full custody of OUR children. The ones born of love.

The ones born into a family made of love.

In a “marriage” that did not include God or a preacher.

It also was not guaranteed to create chidden.

I now have no uterus or ovaries. If you were to ask my husband before hand, there would be no promise this “marriage” would produce children. Apparently my body agreed.

As you can see, I’m knocking down all the reasons many say you must “save traditional marriage” left and right with our family.

We did not have a traditional wedding. We did not have a traditional wedding ceremony. We do not have a traditional marriage, unless you consider “traditional” one that means we love each other and wish to spend the rest of our lives together.

As the country, once again, consumes itself with what “marriage” means in this day and age I only ask that you consider one question: What does family mean?

Our family started in a way many would consider illegal and immoral. Yet here we are, with two beautiful children celebrating birthdays and we’ve stood by each other through every vow repeated to one another long ago.

That’s more than I can say for millions of Americans claiming to be truly “married” while shunning my husband and I, while saying things like “why can’t they just have a civil union and not be married like us” and while trying to convince the country separate can be equal. In fact, I think I’ve heard that before…didn’t turn out too well then either.

“Lean In”…a little closer…a little closer…

…SMACK!

I’m done with this ‘conversation.’ Because it’s not a true conversation. In order to have one of those, it has to go both ways. Not me being told what to do by women who have more opportunity and privilege coming out of their ears than I’ve had my entire life.

And I’m pretty damn privileged.

All women behave differently in their careers. Some are the quiet types that get things done behind the scenes. Some are the loud, brassy, take-control types that get in there and kick ass and kick it hard. Some women sit at the board room table arms folded and others take notes. Some sit at the head of the table and tell others what to do.

Some of these women have families. They may have waited until later in life, they may have had children young, they may be in the midst of having children in the middle of their careers.

Now lean in one more time so I can tell you a little secret…closer…closer…!SMACK!

Some women DO NOT HAVE A CHOICE IN ANY OF THIS.

They work because they MUST. They rely on daycare or family and friends to watch after their kids because it is the only option they can afford.

Their choices are not like my choices. They are certainly not like Sheryl Sandberg’s or Marissa Mayer. And when they MAKE those choices, if there is a choice to be made, they are scrutinized up, down, left, right sideways….you get the idea.

When is the last time a man was scrutinized for his decision to put career first? The last time a man put his family first I believed the words ‘forward thinking,’ ‘courageous,’ and ‘whatta guy’ were heard. Figures, right?

I think those men should lean in as well. Closer…a bit closer…just a little bit closer…!SMACK!

I’ve had it. You’d think anytime a man decided to actual parent he should get a medal. While anytime a woman decided to start a company and lean in to make sure her employees do what is best for the company while she misses a volunteer opp at the PTA she has committed a felony.

The bottom line is we can lean in, we can lean out and we will still lose. We can fight for flex work hours for PARENTS (not MOTHERS…PARENTS) and remote offices and all the things that make it easier to be a working parent in this country and yet there will STILL be arguments. Some will agree, some won’t. Some will lean in and some will lean out.

We’re all different. We all have different goals and different ways of working. Some of us want children, some of us don’t. Some of us want to run the company, some of us are content to get our paycheck and live a less demanding life.

So spare me your lean in bullshit. This has nothing to do with leaning in or where you work or if you parent like a PTA Boss or a drop-in nanny. What matters is YOU have the CHOICE. So many do not. So many have zero choices. They scrape by every day just trying to make enough money and just trying to spend enough time with their kids.

Let’s not worry so much about leaning in, I’m tired of it. I’m tired of the judging on who has leaned in, who should have leaned in, and who should have chosen to lean in and didn’t…that’s enough. ENOUGH. Because most do NOT HAVE THE CHOICE to lean in. They aren’t even at the table. So screw leaning in, let’s worry more about helping out, putting women in positions to make those choices and then standing by them, NOT judging them, when they do.

My Knee-Jerk, Mom Reaction to Today’s Events

My son and his friend are running around my house ‘shooting’ each other with Nerf guns right now. They are diving on the floor, collecting bullets, telling the other “YOU ARE DEAD DUDE” and generally being nine-year olds.

I want to make them stop. I want to freak out and take away their toy guns and stop their game and tell them they are DONE.

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There will be no more fake gun fights in this house. I no longer want to raise a son that glorifies the gun culture. And as a parent I take full responsibility for allowing him to go down that rabbit hole. The toy guns. The endless video games with nothing but war play. Things we find totally normal.

Normal.

photo.JPG

I realize in his mind it’s make-believe. In his mind he KNOWS the difference. But today I just can not take the fake vs. real when a friend’s nephew was in that kindergarten class in Connecticut. When so many parents tonight grieve. When the unthinkable CONTINUES to happen again and again in our country.

It begins at home as the culture of guns and violence is forever put in front of their young faces. Even responsibly they are desensitized to the bloodshed. And yes, kids have been doing this forever. If not Nerf guns they would be making guns from sticks or out of their hands. But would they be doing it as much? Would it be as vivid? As real? As daily? As routine?

I just don’t know. I just know I can only control what happens in my own home. I can not control what happens in my child’s school not matter how involved I may be. Or if they are at a friend’s house no matter how well I think I know the parents.

I have to teach my children just how dangerous this world can be, without stealing their childhood…their innocence. Without taking away the very thing youth should be about: discovery and joy and laughter and play.

I watched the President cry. I felt the pain in my friend’s words from across the miles. And I agreed with the Governor when he said evil came to their community.

The problem being…I see no end to the tears, or the pain, or the evil until we, as a nation, face this culture we have created and now celebrate. A culture of hate and violence. A culture of “I’ve got mine, who cares about yours.”

A culture of not being your brother’s keeper. All anyone wants to do is make sure they’ve got their weapon, their safety, and to hell with anyone else.

This is the last lesson I want to teach my children. Ever. Yet this is the lesson so many are teaching theirs’.

As others fight to make further cuts to services we need…like mental health services. And education-the ONE thing that could save us all.

So as I debate all the toy guns scattered about my home, and the violent video games we play…I ask you to think about where this conversation begins as a community. Where it starts as a nation. Where we really dig in and make some changes so no parent, no family, no children ever have to go through this again.

Because I don’t think any of us can take this anymore. Our hearts can only break so many times before healing becomes impossible.

Our Trip to the Democratic National Convention- Part 1

An Open Letter to the Anti-Abortion Protesters at the Democratic National Convention in Charlotte:

Hi. You might not know me. I was the Mom who was wheeled by with her two small children yesterday somewhere between 3-4pm eastern. My beautiful and smart-as-a-whip little girl was on my lap, as my father-in-law pushed my wheelchair. My son was holding his grandmother’s hand and my hand on the wheelchair as we crossed the street onto your corner.

We needed to enter the convention center to get our credentials to see the President speak and there was no way around you.

I saw you when we parked. I mentally calculated how to avoid your area. Not because I have any trouble teaching my children about abortion, or about differing opinions, but because they did not need to see 9-foot tall posters of dead fetuses while you screamed about me being a murderer through your megaphone. Scare tactics meant to frighten me and my kids.

Headed into Time Warner Cable Arena #dnc2012

On our first trip past, we avoided you. I gave myself a Mom pat on the back, but then quickly learned we had to doubled back and head right through you in order to get where we were going.

So I did what any Mom would do and explained to the kids, quickly, that we needed to walk near ‘a bunch of idiots’ who had ‘scary pictures’ and were yelling ‘very mean things.’ I then had them both cover their eyes.

We nearly made it past you, but my son, who was walking, had to look up every so often so as not to trip.

He happened to look up just as you put one of your horrible, misleading, evil, shocking for the purpose of shocking, posters in front of him.

He recoiled and yelled out. I held his hand tighter and said ‘It’s ok, we’re nearly through’ and we went as fast as we could past you.

Mom, why would they even do that? What is WRONG with those people?

They think they can change people’s minds about abortion. They think they can get women to give up control of their own bodies by shocking them with those pictures. They think if they are loud and they scare you they will get you to vote their way.

Mom, that is horrible. They are horrible. I HATE those people.

I don’t like them very much either honey. And normally I would tell you not to hate anyone, but I think in this case it’s ok. These really are some awful people.

So you see, guy with megaphone, lady holding baby, men with signs…while you have every right to be there and every right to scream and shout and shock your message from that corner- it didn’t work.

My daughter was horrified to the point of hiding her face, my son was disgusted and angry. He was angry you were trying to get people to vote your way by showing them those pictures. And once I explained to him what he was looking at threw his squinted eyes, he became even more angry you were flashing those fetus photos for the world to see.

But Mom, I thought you said girls had a real hard time with that, and it was sad. Why would they think it is easy?

Honestly honey? Because they are jerks. I know that’s a bad word…but they are. They didn’t care that you saw those photos, in fact, you saw how that man tried very hard to get in front of you and show it to you.

Yeah, that made me sad.

Do you want to talk about it?

A little. I’m sad those people are so mean Mom. And I’m never voting for what they want because they are so mean.

There you have it protesters. If you were out there to try to change the hearts and minds of those willing to even slightly consider your point of view, you failed miserably. As it turns out, you may have made sure to have driven away an open-minded young man.

And for all your talk of loving babies and children, you certainly showed zero love for the ones right in front of your face as we passed your way. You needlessly frightened little children, the same children you swear you care about so much you are compelled to stand on a street corner to preach about their souls and the soul of their mother.

Consider yourself at least two more votes down.
Oh, and you are still jerks. And I’m using my nice words.

Erin Kotecki Vest
Mom, Wife, Angry Democrat working hard to keep abortion safe and legal

Of Romney and His Gang and the Gang Who Held ME Down

In high school I was held down by a group of boys against my will.

Much like the story being told about Mitt Romney, my high school days included an incident where a group of young men ‘played a prank’ ‘had some fun’ ‘joked around’ ‘acted like boys’ ‘bullied someone different’ ‘tackled’ ‘pinned to the ground’ ‘forcibly restrained me.’

Much like the story being told about Romney and his group of friends, I lived in a suburb of Detroit, near the prestigious Cranbrook school Romney attended. While he and his buddies held down another student and cut off the hair they decided they didn’t like, I was held down by a group of boys who pulled down my top, exposing my breasts.

I’d say that roughly the same number of boys were involved. I’d say 75% of them have, over the years, apologized. Except the ring leader- who to this day remains a total asshole.

I do not think any of us are who we were in high school. We grow. We change. We evolve into adults that are hopefully more mature and wise and educated. However we do have certain traits that remain, even if we’ve tried to shake them. Sure we’re a hell of a lot different, but we certainly have a core that has stayed consistent.

In Dreams From My Father President Obama writes of a bullying incident he too was involved in where he was teased along with the only other student of color at his school. He denied to the other students she was his girlfriend:

I was haunted by the look on Coretta’s face just before she had started to run: her disappointment, and the accusation. I wanted to explain to her somehow that it had been nothing personal; I’d just never had a girlfriend before and saw no particular need to have one now. But I didn’t even know if that was true. I knew only that it was too late for explanations, that somehow I’d been tested and found wanting; and whenever I snuck a glance at Coretta’s desk, I would see her with her head bent over her work, appearing as if nothing had happened, pulled into herself and asking no favors.

My act of betrayal bought me some room from the other children, and like Coretta, I was mostly left alone.

Romney, on the other hand, claims to not even remember the incident of cutting another student’s hair after his gang of friends allegedly held the boy down.

Now the point here isn’t to compare the character of each candidate (or anyone for that matter) solely on how they behaved in their youth. That would be absurd. But there is a certain wondering one must do when one man can write so eloquently about an incident in which you can feel his pain for having ‘betrayed’ (the President’s word) another student and another man who can’t even seem to recall what, by all accounts, seemed to be one really dickish move by a spoiled rich kid ala some John Hughes movie in which I fully expect Molly Ringwald to report Romney (played by James Spader, of course) to the principal.

I’m disturbed that Romney does not remember. I really am. Either he did things like this so often they didn’t even register in his memory or he found it to be such a ‘non’ issue he had no reason to remember. Or he does remember and can’t bring himself to discuss it and actually tell the world this sort of behavior has no place in our society. Or…or…. I don’t know. I just know his reaction to this has been bizarre, at the least.

I certainly remember being held down by that group of boys. All them, to this day, remember holding me down. It seems all of Romney’s gang remembers holding down their victim as well. All except Mitt.

Again, this isn’t something that defines a presidential campaign, should be brought up in debates (unless, of course they discuss the issue of bullying and suicide and teens- then please, by all means) or should overshadow the economy, jobs, foreign policy, wars, etc. But it sure does seem to paint a picture for me.

It paints a picture for me as a girl who was held down by a group of asshole boys who thought they could do what they wanted and get away with whatever they wanted. Just like in the alleged Romney incident, I was told I was asking for it. Or that I liked it. Or that somehow in the warped minds of those trying to justify their actions it was my fault for wearing that bikini top, just like it was John Lauber’s fault for wearing his hair different than the rest of the kids.

Bullies do that. They victim blame.

I certainly hope Romney has changed since his youth and doesn’t find what the Washington Post calls ‘pranks’ as funny anymore. As the President wrote in his book, he had been tested and found wanting…if only Romney seemed to show the public he too failed. Not just apologized for youthful indiscretions, but found wanting.

For those of us held down. For those of us on the floor with the faces of young men looking down on us with laughter and evil in their eyes, we not only expect you remember, but that you felt tested and now and forever found wanting.