Kinfolk Vacation

Vacation with family in the South day #1:

My son learned to whittle with a pocket knife (and loved every second of it, making all three of his cousins Harry Potter wands and making his grandfather very happy).

My son is in the country for sure. He just widdled whiddled widdled ? A wand

My daughter baked and played Barbies.

And #allhailhala is baking

She also avoided, like the plague, the baby that came to visit. She really does not like babies.
We’re ok with this. We hope this helps come her teen years.

My body is tired but holding up. North Carolina is wet and has large mosquitoes and Moral Monday, which I really wish I was here to attend. But again, family first.

BlogHer ’13: Why You Will Make the Most of it…for ME

It’s no secret I’m proud of BlogHer.

It is my community. It is my employer.

It is that safe space I retreat to online when I need my virtual fix of inspiration and motivation.

This will be only the second time I’ve had to miss the annual conference (in person…my virtual self WILL BE THERE VIA SKYPE!) and I’m doing my best to not be seething with jealousy or pangs in my belly whenever I see the tweets or posts or photos of what a great time everyone is having and the rock stars they are running into in the hallways.

But to be brutally honest after last year’s triumphant return to the annual conference I really thought by this time THIS year I’d be working again. I thought you would barely see me at BlogHer ’13 because I’d be knee-deep in some amazing project, wrangling politicians as they came to address our community, executive producing an on-the-spot campaign for one of our clients and somewhere in the midst of it all finding time to say hello and network.

Instead I found myself faced with a choice: speak, in person, at my HealthMinder panel on Thursday and stay to enjoy the majority of the conference and then (after having flown from LA to Chicago) fly from Chicago to North Carolina to meet up with family.

You see, back over the holidays we had to cancel our family trip to North Carolina because I was too ill to get on a plane. It was too dangerous.

But back to the choice(s). The other choice was to stay home, rest up, and fly with my family to North Carolina. And a third choice was to fly to Chicago and back and then let my husband take the kids to North Carolina while I stayed home.

I knew the third choice wasn’t an option. So really, what it came down to, was if my body could handle jet-setting like it used to. Hopping on a flight from LA to Chicago and making the rounds at BlogHer ’13, then hopping a flight to North Carolina to meet up with family and making the rounds there. Then, making it back to LA.

And who are we kidding. A stomach bug hospitalized me for the 4th of July. I really did not want to give up BlogHer ’13. I really wanted another hot dog in Chicago.

I really hate that I’m not yet well enough to be capable of doing ALL THE THINGS that make me happy.

Part of this journey I am on…this path lined with tacks that seem to all stick straight up into my feet…is learning I now have limits. I might not later. They may get worse before they get better (again) and they may even get better and possibly GO THE HELL AWAY. But for better or worse my body has limits.

If you could hear me say ‘limits’ in my head as I type it you’d laugh. It’s this high-pitched whine really. LiMiTs. I have LIMITS!!!!!!!.

Travel takes very careful planning. In order to go to DC we left several days early so I could rest and rest and rest before we had to be at the White House.

In fact, we visited the White House the day before we LEFT FOR HOME. So I knew I couldn’t just jump on a plane and jet my way over to the Windy City for BlogHer ’13 and then hop another to Fort Bragg and then hop another back home to LA…all in the span of less than a week. It was a recipe for another stay at hotel hospital. Or worse, I’d get stuck in a hospital in Chicago. Or North Carolina. Or even worse, I’d have to cancel on family for a second time and once again let down people I love.

It’s true what they say about BlogHer’s annual conference, by the way; it’s totally what you make of it. It can be all parties and hugs and squees or it can be hardcore networking for that big gig you’ve been hoping for, or it can be your coming out party, of sorts. Where you decide to take that leap of faith and go meet those people you talk to daily through that screen on your lap. You know…the ones who make you laugh and cry and think.

The ones who’ve been there for you each and every time you mouthed off about breastfeeding or Pampered Chef parties or politics. They’ve been there from the moment you started to feel unwell, and were there for the first surgery. The second. The third. They sent cards and flowers and unicorn poop cookies. They sent hats and spoons. Some sent gnomes. Books. Silly postcards. Amazing jewelry. Inspirational works of art. Simple notes that made you cry like a child.

And last year they made you feel like a goddess when you were at your most vulnerable.

photo by @craftyb

You even listen to a certain voicemail on your phone, a full year later, when you are once again feeling down and stuck in treatment or a hospital bed or you simply can’t fit into a pair of pants that fit last week before they upped your steroids again.

They wrapped you in so much love that you can’t imagine life without the wonderful women and men on the other side of the screen.

I have come a long way in this battle. I still have a long way to go. Know that each of you have helped me in your own quirky way and I can’t thank you enough. I thought thanking you meant I HAD TO BE IN CHICAGO personally. But practicing what I preach, family must come first. Instead my family will be flying to North Carolina to make up for that trip Lupus canceled over the holidays.

Here is hoping during BlogHer ’14 I will wrap each of you in so much love that you can feel in the hug I give you just how important you are to me. That you can’t imagine life without the wonderful women and men on the other side of the screen. Or better yet, that I’m just a blur during the conference because I’m so busy working we barely had time to chat…but we did have that amazing but brief moment where we embraced and looked at each other knowingly, because we had made it.

Because dammit, I WILL make it.

Trayvon’s Heart Missing for White, Mom Jury

I think we need to talk about the other elephant in the room regarding the Trayvon Martin case:

this jury of predominantly white “Moms”- or so I keep hearing.

As if, magically, this will take away any issues of race or privilege or any other issues…simply because all these jurors were mothers and female.

I’ll just go ahead and say it and take the heat: some of the biggest people with racial issues I know are white feminists. Mind you I did not say every, I did not say ALL, I said some. Simply…some.

I found out first hand when I was the first blogger to publicly ask former Secretary of State Hillary Clinton to step down from her run so then Senator Barack Obama could claim the nomination for President. 99% of my hate mail came from white feminists who were shocked and appalled I dared ask a woman to get out-of-the-way for a man. They accused me of being at traitor to my gender. They accused me of being a N-gger lover, out to “impress” the “other” minorities, while ignoring my own. They also told me women needed this more than people of color and I should know that because I AM a woman. How dare I fail to understand their struggle and how dare I put those of color’s struggle above women’s struggles?

So when I heard the jury was made up of a bevy of white females, I did not feel any better for the prosecution’s chances. Even if they were liberal, white, females. I knew all too well the history of racism some of these women carried in their hearts and I knew some believed their plight was far worse than any other minority’s plight. I also knew, deep down, some may be harboring some very racist views.

It was the age-old “but our struggle is harder than your struggle” fight that I’ve watched play out over blogs over the years. Even on my own.

But hey, maybe I was way off base. Maybe my gut feeling was totally wrong and these were enlightened, totally biased free women. Sure they might have the usual issues anyone would have with race and gender and class, but perhaps they were smart enough to put all that aside for the trial and move forward like rational humans.

And then came Anderson Cooper’s interview with one of the jurors. My stomach churned and sadly, I felt like my initial thoughts just might be true. I certainly didn’t feel any better about my theory as to the panel composed of George Zimmerman’s peers. Juror B37 said she had no doubt Zimmerman was “afraid” – my question…how afraid can you be if you take your gun and pursue the person you are allegedly afraid of? But what caught my attention most was juror B37’s comments on witness Rachael Jeantel. “A lot of the times she was using phrases I have never heard before and what they meant…that’s way they talk…” (emphasis mine)

Does she means the way teens talk? Doubtful. I think considering she was discussing her “communication skills” she was speaking directly to race. Directly. Go ahead and click on the link to her discussion of Jeantel. How she felt bad for her. How she felt she was uneducated. Really? She was speaking about her being a teen then? Juror B37 sure tried not to say it, but it was clear to me she was speaking about race.

And to Jeantel’s credit, she was respectful of the juror’s comments, even saying her parents helped her calm down and she was raised to not cuss and respect her elders.

Certainly doesn’t sound like someone who was ashamed of herself or her education to me there Juror B37. In fact, Ms. Jeantel out-classed you and showed her education far better than you did on national television.

So where does that leave us? With a generation gap or a racial gap? Or does that just leave us with those who are upset at the verdict and those who are not?

I’ve been told I’m race-baiting by even bringing up black witnesses and white jurors in this case. But an unarmed black teenager was killed, he was considered suspicious for walking through a neighborhood in the rain, carrying candy and tea. SO VERY SUSPICIOUS that George Zimmerman felt it necessary to follow Trayvon with a loaded gun.

I can’t think of any teen or man who wouldn’t confront Zimmerman if they were being followed. And there sits this jury of predominantly white women actually thinking it’s Zimmerman that was scared. The man with the gun. The man who did the following. SO SCARED HE FOLLOWED TRAYVON. If you are scared and afraid for your life, do you chase after the person who you are afraid of? I’m just asking here. And if you are a white woman sitting on that jury -are you the typical stepford-wife thinking Mr. Zimmerman was oh so brave for following that thug of a black boy daring to traipse through their neighborhood?

Nevermind it was Trayvon’s neighborhood too. Because I get the distinct feeling neither George Zimmerman nor the white, female jurors thought of that neighborhood as Trayvon’s either. Even though it was.

Tie in Juror B37’s comments on Ms. Jeantel and I see exactly how this went in their minds. Yes, I am a mind reader. (That’s sarcasm, people…I’m giving you my own theories here, not fact).

And to say race didn’t come into play is either total denial on the jury’s part or just another sad chapter in the long history of white, sometimes very feminist, women denying the plight of people of color in favor of their own struggles.

This isn’t a competition. We are not post-racial and we are not post-gender and we are not post-patriarchy.

Imagine what we could do together if we could only see the other’s fight and help. See the other’s pain and history and empathize instead of compare.

If we could only see the facts surrounding the death of a young man and not let things like our prejudice of a black woman’s “education” get in the way of her account of that fateful night.

And if only Juror B37 could have seen into Trayvon’s heart the way she claims she could see into Zimmerman’s. The man who pulled the trigger. Why is it she knew Zimmerman’s heartfelt intentions yet she couldn’t fathom Trayvon’s intentions and heart? Even after the witnesses and those who told of his unarmed walk home. His entirely legal, unarmed, entirely NON-suspicious walk home. But B37 couldn’t find any heart there…

and I can only come up with one reason why…

Meanwhile THIS white, feminist Mom has nothing but a broken heart for Trayvon and his parents. I can’t imagine their pain. I can’t imagine how they must feel after a jury of women couldn’t find reason under the law to put the killer of their son behind bars. I can not speak to the racism they may feel due to this case or the fallout regarding race sweeping through the nation. I can only speak to what I know. and I know white women. I am a white woman.

Sadly I had hoped they would see into the heart of a young boy before they saw into the heart of a shooter.

We Blend, Trayvon Did Not

My Dad walked into the living room and said “Not guilty.”

I inhaled.

He didn’t have to say anymore. I knew what he was talking about, I knew what he meant. My head swirled.

My 10-year old instinctively clung to my left arm. Began petting me. He didn’t understand. He asked question after question.

But how could he just shoot him and not go to jail? How is that ok? Why would he be not guilty? He shot him. You can’t shoot people, right? 

#relayforlife

I had shielded as much of the Trayvon Martin case as I could from the kids, but my son enjoys watching the news with me and truly enjoys discussing the news with me. So many mornings are spent with the two of us talking over current events. I keep things as age appropriate as possible. With Trayvon it was hard from day one. This was a teenager gunned down for doing nothing more than walking home, being stalked by the local neighborhood watch guy, and when Trayvon confronted George Zimmerman, a fight ensued and Zimmerman shot and killed the teen.

Now Zimmerman walks free and all over my twitter feed under certain hashtags like #tcot and others, people were celebrating. On my Facebook page there were exclamations of ‘What a great day for America!’ and so on.

While my son shook with anger and tears rolled down his face. While my daughter did her best to play her game and not pay attention, yet clearly was listening and upset. While I struggled to come up with the words to tell them justice would prevail…silence permeatited throughout our home.

Silence.

Because there were no words.

There was nothing I could say that would make sense or make this right.

The verdict went against everything we had taught them about our judicial system and it went against everything we taught them about how justice was supposed to be served in the end.

My husband talked about how sometimes, justice does not win. We all did our best to explain away the unexplainable.

But the kids clearly did not understand. Hell, the adults didn’t understand.

Later on in the evening my son asked me how we could make it better. My sweet, sweet baby boy wanted to know what he could do to change the verdict, racism, and the world- and he was very serious.

Again, I had no answer for him. My only answer was that he continue to be a great person. And that hopefully, it would be contagious.

This wasn’t good enough for him.

So I told him about a petition to get the Justice Department to open a civil rights case against George Zimmerman to try, once again, to put him behind bars.

He was unimpressed. And I have to say, while I think the petition and case could be worthwhile…Zimmerman walks free while Trayvon is dead. I see no justice there and I see no reason to get excited over the possibility of another trial.

Something my son said keeps repeating over and over in my mind as I think about the verdict:

Mom, what if I walked to go get Hala some candy and you always drink tea…what if I went to get you tea…and that happened to me? But it wouldn’t though, would it? They think I blend in here, don’t they? They don’t understand I’m not on their side…they don’t understand we’re on the kids like Trayvon’s side. That means I can sneak into their talks and find out what is going on and then I can tell everyone and everyone will be safe. They will never know because I blend in. They will think I am one of them, but really I am like a ninja and I will bring all the information back to everyone like Trayvon and US and everyone will be SAFE forever!

I love my son’s big heart more than I can say. In his 10-year old imagination that’s all it takes. Him acting like a superhero of sorts to come save the day for all. Or at the very least, him acting like a super, secret, spy-ninja who can get rid of racism and the bad guys all in one night.

How I wish this were one of those times his imagination’s amazing ideas worked. And it were all just that simple.

That a 10-year old boy’s dreams and ideas could come true and some of this pain and confusion could be erased with good and innocence.

If nothing else, may the world know if there must be sides to take, my son has signed us up to be on Trayvon’s and people ‘like’ Trayvon’s. That means those of color and those who do not ‘blend’ in ‘our’ neighborhood.

Jack has decided we don’t blend. And I’m glad. I don’t want to blend if it means we are anything like the Zimmermans of the world. We’ll happily be just like Trayvon in spirit.

Forever.

From Exercise-Fiend to Vegan: Moving Forward

I spent the better part of the day trying to figure out how to change.

Should I go vegan? Vegetarian?

Should I try getting up at 5am every morning and walk to the end of the block again? Then in a week around the corner? Then in two weeks around the block? Or should I try to get in the pool daily and swim?

Should I cut out dairy? Maybe carbs.

My doctor gave me the ok to try whatever I wanted and gently reminded me nothing would really make a huge difference until I was off all these steroids saving my life.

…off all these steroids saving my life.

I’m not sure about the saving my life part. Sure they are saving my organs, but what life are they leaving me with?

There has to be a happy medium here. I’ve been trying to find it for a long time now and I’m at my wit’s end. I have to LIVE.

I want to enjoy myself not just stay alive. And my situation is not so desperate where I can’t think about doing these things, even my doctor agrees. It’s why he has no trouble with me flying again at the end of the month to see family (so long as my lab results and body are doing well) and it’s why he won’t stop me if I want to try new things.

The question is…what? I know I’m limited. I know I won’t put my body in danger, it has to stay here and healthy for those I love. But I need to have A LIFE. A life that includes romance and outings and friends and socializing and fun.

I feel like drastic changes are needed in order to take control of this situation. I know I can’t take control of Lupus, but maybe I can change enough of my habits and my lifestyle that Lupus will have less of a chance of seeping into every part of my life…as it has.

Right now, post hospital stay, it’s all-consuming and all around us and all a little too much. I can’t push it out of my mind or shield the family because there is too much aftermath to deal with. Hopefully that portion will be over with soon. Then I can go about life for them without mentioning the “L” word for a while.

In the meantime I will formulate a plan to move forward, again. Thus far I will begin school again in the Fall. Enough to keep my brain going so it doesn’t go numb and I work towards a goal.

Physically it’s harder. I have limits to what my body can do, but they aren’t so great that I can’t overcome them and they aren’t so great that every so often I can’t get off my duff and move. It won’t be easy. It will take time. But change has to come.

I can’t live like this. Ideas are welcome.

Welcome to Hotel Henry Mayo

I am still trying to wrap my head around what happened. What went wrong.

Except nothing went wrong. At least, not that I can pinpoint just yet.

I got a stomach bug. Just a simple stomach bug.

I was learning my limits. Learning to deal with this disorder. Learning how to live again and all of the sudden…a three night, four-day stay in hotel Hospital complete with blood transfusion.

Still trying to assess hospital damage physically and emotionally on entire house

Thank you to all the friends and family who brought over meals, visited, and were just plain there to listen as we waded through the unexpected stay.

I have so much more to tell you and to say…about how this came just days after a very stressful test by my disability insurance company, wanting to make sure I really deserve that check they give me…about how this came after telling White House staffers living with a chronic illness means I could be hospitalized at any time (bingo!) and our lives turned upside down- like so many millions of Americans. And about my roommates, the first of which did not have insurance. The second was trying to figure out Cobra and send in a check on time so her hospital stay would be covered.

Sometimes I wonder how we Americans survive. I have to think about the bills that will arrive from this stay instead of concentrating on getting well. And worry that my disability check could be gone at any time for any reason as they put me through test after test to make sure I’m really sick.

Maybe this last round of treatment that had to be administered in the hospital, and two units of AB – transfused in the hospital, will be enough for Mutual of Omaha.

Probably not.

Then again I have my appeal for Social Security disability in October…

I am thankful the Affordable Care Act means Aetna can’t fight as hard to throw me off my husband’s insurance when they see I was admitted and received a ton of treatment. And that those lifetime caps aren’t an issue- or we’d be screwed. I don’t think people understand just how important this first step at changing our heath care system really is…and the GOP fight to take down ‘ObamaCare’ wages on while we sit in hospital beds moaning and complaining about the system.

Here is that first step at changing the system. Just a reminder. It may not matter to you right now, but it will eventually. When you’re at the ER with your kid, or when you’re taking your Mom to get her physical (a ton of preventative care measures are free now). I know, I know. I’ll stop. But not until you go check out HealthCare.Gov and at least know how it will all affect your family.

More later as my crusade continues…just not from a hospital bed this time. I hope.