First Days

1st day 2011
There is something so hopeful about the first day of school.

New classrooms. New friends. A new beginning.

This year I’m just as worried as I was last, however I can make it up the stairs easier as I walk them in.

I’m trying not to be upset that I won’t be able to pick them up the majority of their very first week because I will have treatment. At least I will be able to drop them off. But even knowing I will be there in the morning and be there after they come home in the afternoon…I’m still upset I am not there for that moment when they exit school.

They look so big

That’s so silly. I mean, my husband isn’t there for that moment. He works all day. I should be thankful I am there to take them and not overreact that I can’t pick them up for just a few, small days.

It seems like whenever I miss something because of Lupus, I get really angry about it. If I were missing picking them up because, say, I was having lunch with a friend…I wouldn’t be nearly as broken up. But because it’s treatment? Yeah…I’m mad.

And of course I was wringing my hands over telling the kids. Worried that they needed me this first week. Needed me to be there in the morning and right as they walked out…and upon hearing the news I got an ‘oh, ok…’ and their heads turned back to their games.

My shoulders slumped just a bit as I realized they weren’t nearly as upset as I was. I’m glad they are immune to much of what this disorder has done to us, but also a bit sad that they are so very used to treatments and doctors and hospitals. NO kids should be so immune to these things.

So once again it’s time for alarm clocks and lunch boxes and homework. Mixed in with carpools and iv band aids and side effects. A week’s worth of easy dinners I can make after being exhausted from a day of sitting and having meds pumped into to me, while they will have sat and had information and knowledge pumped into them. And we’ll sleep in a big pile on the nights I’m too tired to get them to bed, and they will worry less as friends and a new year reminds them of all the fun outside our house walls. And keeps their minds busy with the ‘new.’

I just hope that soon I miss nothing due to Lupus. And we have a million more first days that don’t have to include talks about why I won’t be there, can’t be there, or need to miss any little moments.

The Anniversary We Don’t Celebrate

I haven’t been writing  because I don’t have words.

It has officially been a year since they took my gall bladder, my colon. My uterus. And my ovaries. And my cervix.

It has officially been a year since I walked into a specialist, and walked out having to tell everyone I love that I have Lupus.

It has been a year of gaining pound after pound after pound as steroids saved my organs and robbed me of my confidence.

It has been the worst year of my life, as I continue to make life harder for everyone. The never ending roller coaster that throws us high in celebration and then tosses us down with news of a stroke, then ANOTHER mini stroke and then up again with treatment and down again with pain.

God…the pain. The never ending, non stop pain that can’t even let me catch my breath because it’s too cruel.

I’m not going to pretend as if I had forgotten this anniversary. The one just after the other anniversary that should always be happy, not just an exercise in straining our ears to see if we can hear the clock tick down my life.

This year has taught me many lessons about the people I love. From the way my Father’s face fell as we left the specialist and I said the word, to the strain I see as my son rubs his forehead when he watches me take my medication, to the determination of my daughter as she plays doctor and saves every stuffed animal in the playroom, to the unannounced visits by my brother carrying food, hoping to get me to eat a bite,  to my husband…my constantly worrying husband…who cleans and cooks and shops and moves and moves for fear if he stops moving, so will I, to my Mother whose voice is always near a panic as I try to explain how yet another treatment has not worked. They have endured so much with such strength.

I write this in the hope that next year this anniversary won’t sound so grim. That every year when I write about this date it isn’t as dire, or depressing.

I am putting this first year after having been diagnosed with Lupus in the books, hoping we never endure something like this again, and trying to find the strength to push forward with my body and my words.

11-years Later

11 years tomorrow
On the day of our wedding my Aunt offered me my choice of two handkerchiefs as my something old, something new, and my something blue. She had a blue bow and she was going to pin it to whichever of the folded, white pieces of fabric I chose. One was a new and delicate lace. Stunning for a tiny piece of cloth. She had picked it up at a store for the occasion thinking I would want something more striking than the other she offered. This one was a bit less sophisticated. An inexpensive fabric with large lace as a border. She explained to me that it was her mother’s. And it clearly was special to her.

She assumed I wouldn’t pick the worn handkerchief, opting for the more presentable, new one. But seeing the look in her eyes I knew she was secretly hoping I would choose her mother’s. A woman I barely remember but had very fond memories of. For a split second I considered the new handkerchief. It was sleek and perfect. But I instead chose the handkerchief you see above, the one already filled with memories and love. The one my Aunt didn’t want to assume I would want, but hoped I would carry down the aisle.

Wearing a beautiful diamond necklace given to me by Aaron as my something new, my Aunt pinned the blue ribbon to the handkerchief and then left another Aunt to present me with something borrowed. I proudly wore my Grandmother’s watch, loaned by my Aunt, on my wedding day. Another family heirloom filled with love and years upon years of ‘in good times and in bad’ between my Grandmother and Grandfather.

I couldn’t have asked for a better way to start my marriage to Aaron. Surrounded by family, friends, and the memories of the marriages and love that made up my heritage. My something old, something new, something borrowed and something blue represented so much. The relationships I watched as a child filled with hardship as well as celebration, and never, ever, lacking in love. The thoughtfulness of my Aunts, the promise of an amazing future from my husband-to-be.

11-years later and I have a better idea of what those small trinkets meant and why they were an important part of our start as man and wife.

It’s no secret we’ve had a tough time lately. ‘In sickness and in health’ isn’t just a saying in our home, and my husband has taken that vow to heart. Not only has he been my support and my strength, but he has embodied everything I hoped walking down that aisle, trinkets in hand, 11-years ago.

I’m not sure everyone can say that about their spouse. Recently we’ve watched as friends divorce and it’s been difficult to see the pain and fear in ending what was supposed to be forever. It’s made me grasp onto Aaron and bury my face in his chest, thankful for our friendship above all. Knowing it’s what sustains us over time and when things get hard. Of course friendship only goes so far as well…and that’s where the love comes in. It’s a balance of the two and how they intertwine that helps over the years, because we can always fall back on being the best of friends.

A love has evolved over the years. And grew stronger as I grew weaker, and as I relied more and more on my partner.

Which is why when I think back to those tokens given to me for our wedding day, I think about how perfect they were. And how thoughtful. It was like receiving the strength and wisdom of my grandmother and my great-aunt, along with the promise and hope and love of my husband. And even now, 11-years later, I hear their voices when things get tough, and all I want is to comfort Aaron or our children.

Not a day goes by that I don’t remind myself just how lucky I am to have found my perfect partner in life. A man who has carried me though the good times and bad on his strength alone, for which I am forever grateful. And I hope I show my love and appreciation enough.

11-years later and we still laugh before bed. The giggles always vibrate the entire mattress and shake my whole body, making me laugh even harder.

11-years later and we still dance in the kitchen, either while cooking or simply cleaning up. Always instigated by my smooth yet white husband who grabs me and holds me close while we sway.

11-years later and he is STILL the one I most want to tell everything, or the FIRST one I want to tell any news.

11-years later and I love him more each day, and hope to see a million more days with him by my side.

11-years later and I still feel surrounded by those memories and those lessons of love that enveloped me while walking down the aisle, and embraced us both as we walked up the aisle as man and wife.

Happy Anniversary

A Kiss is Just a Kiss

Me Cool bought himself a new hat today
I kissed my son on the top of his head tonight.

Doesn’t sound like a big deal, right?

Except something was different.

I didn’t bend down.

I just put my chin to my chest and kissed him.

I didn’t bend down.

I realize in just a few short days he will be entering the 3rd grade. I also get that he doesn’t want me to ‘do that kissing thing in front of the guys at school.’ Or in front of anyone else, for that matter. Unless it’s his family.

I get it. I understand what is happening here. But at least when I had these conversations I had to bend to see eye-to-eye. I had to hunch over to hug him. Lean down to help him get dressed. Bend to give him a kiss.

And then, just like that…I didn’t bend.

I should have noticed. He’s started blushing when people kiss on tv. He laughs harder at jokes his father and I get. The ones we felt safe laughing at, knowing no one else in the room understood.

He studies comic books longer, now reading and reading instead of just glossing over the pictures. He reads instructions to his sister, who is still struggling with big words. He’s quicker to help me if I need my cane, or something from the fridge. He asks me why I look upset when reading the news, and truly wants to understand some of the world’s more complicated issues.

And still, so long as not too many are watching, lovingly accepts a kiss on the head from his Mom…who didn’t have to bend to give it.

Survival of the Fittest

I’ve always talked about how politics are personal. Always.

The passion. The fervor. It comes from deep within. Decisions there affect my daily life. Policy, legislation, Acts, Bills…they roll directly to my front door. To me. To my children, my family, our lives.

I have always taken issue with many conservative ideals. When I was younger it was strictly social issues. As I matured I found myself having trouble with conservative economic policy as well. I always found it to be the economics of the wealthy, or those who wish to be wealthy. How does the joke go? Something about being young and a Democrat and when you become older, and richer, a Republican.

However lately I find myself angry when a seemingly new line of rhetoric, spurred by Tea Party types, hits the airwaves, and print, and finds its way to the lips of friends and family members. It goes something like…

I work hard for my money, and I’m not giving any of it to those just living off the system. I’m not giving anything to those lazy bums. They didn’t plan. They don’t want to work. They just take their government checks and get fat or get high or get drunk.

It’s then summed up with some Ayn Rand type quote about the survival of the fittest and how those who work the hardest deserve the riches.

Yeah, now it’s even more personal.

For those who are unaware, I’m on disability. A system I paid into when I was able and working. This means that every two weeks the state of California sends me  check and this check pays some of our bills. My husband continues to work, and the rest of the bills are eaten by his check.

Procedure bill #1 of #6 #suckitlupus

Without my disability check we would not be able to pay all of our bills. This includes medical bills that have eaten up almost everything we have.

I just realized I’m one of ‘those‘ people these conservatives are talking about. I’m the lazy. I’m the unable. I’m the one who is living off of the government.

We planned as best we could for something like this. We had savings. We alway tried to live within our means. And then, as so many others, what couldn’t possibly happen to us, did.

Thousands upon thousand of dollars in tests and treatments will do that. No matter how much you try to plan. Leaving us thankful the government program was there to help in our time of need.

Let there be no misunderstanding. I WANT to work. I am anything but lazy (unless we’re talking about putting away laundry) and the last I checked my government checks weren’t being spent on booze or illegal drugs. It sure as hell pays for a lot of meds I have to take, though. The chemo shots, the iv infusions, the daily pills that are so numerous sometimes I forget if I’ve taken them.

I’m the ‘those people’ collecting that ‘hard earned money’ these conservatives were forced to turn over. They think I’m lazy. They think I don’t deserve that check, and they sure as hell think I should have been better prepared and should get my money elsewhere.

When it comes to ‘survival of the fittest’ they are fine keeping their cash and letting me die. I should be getting what I need at a church, or some private entity. Why should they have to pay for me? Why should they be forced to turn over their pennies because I got sick?

Yes. Today’s very real political debate has come knocking on my front door. I’m the ‘those people’ you keep hearing about at rallies with signs showing a lot of bald eagles and little old ladies in Old Glory sweaters. I’m the reason they seem so angry. Well, me and millions of others down on our luck.

You see…nothing bad happens to the folks at these rallies. They have, presumably, thousands of gold bars stashed away for their rainy day. They, obviously given their stance, don’t accept Social Security or Medicare/Medicaid. Their savings and self-bought health insurance will handle all their needs, even in the event of a medical emergency. Right? And of course if I ask them they ‘aren’t talking about me’ but about those ‘other people.’ ‘You know, the ones not like you.’

Yet they are like me. Just like me.

Yes, my disabled ass is clearly unconstitutional, or so I am told. Because no where, does it say, do they have to pay for us lazy sloths who are ‘abusing’ the system.

Nevermind it being a system we paid into. Facts don’t seem to matter.

Try as I may I’m having a hard time with this one. As anyone who’s been in a tough spot knows, it’s not where you want to be. And you are more than thankful for the government program there to aid you when needed.

I’m not ashamed to be collecting my check. This is exactly what a civilized society does. It provides when times are tough. It gave me a safeguard so my family wouldn’t lose everything because I got sick.

Whereas these people, these Tea Partiers and these conservatives seem to believe if I lose everything, if my family loses everything because I got sick, well…that’s just life. And survival of the fittest baby. I should rely on a church, or shelter (privately owned and operated, of course) but not the government. No…that’s not the role of their government. The one that can make sure their small business gets breaks, just not real people.

So after a night of heated debate with some of these people I ask: where has compassionate conservatism gone? What happened to this grand old party that still talks morals and family values yet preaches no help for people like me and no equality for my gay and lesbian friends? At what point did the all mighty dollar replace the All Mighty?

And when did I become lazy, not worth saving, and most certainly unfit, and therefore left behind in the grand human fight for survival?

So you’ll understand why I argue when you post your status message supporting a Republican. You will surely see why I ask why you support this or that Tea Party candidate. And you will forgive me as I question as you discuss your stance against giving any of your hard-earned money to ‘those people.’

Because those people are not faceless, nameless stereotypes pounded into your head by Fox ‘News’ or talk radio. No. It’s me. And millions of others like me. Simply paying bills, and buying medication, and undergoing treatment to survive…

…Despite you leaving us to die.

BlogHer ’11: We Made It

I returned from BlogHer ’11 in San Diego to seven hours of iv treatment. I think that sums up my life pretty well. Days upon days of rest and relaxation, with friends close enough to finally hug, and I’m plopped right back into my routine of treatment and tests.

I’m trying to take all those hugs with me as I sit hour after hour, day after day, feeling that lingering presence of love that enveloped us in San Diego. It helped. It really helped. And along with those hugs came your donations at the first BlogHer Blood Drive:

Yay! #BlogHer11

24 pints of blood that saved 48 lives collected by the San Diego Blood Bank…good work BlogHers!

I’m not sure how to explain what our lives are like normally. For Aaron it involves a lot of worry. For me it involves endless doctor visits. I’m not kidding when I say endless. This week I will be at the doctor three out of five days for what is usually the entire day receiving treatment.

It’s figuring out who will watch the kids…Who can drive me to treatment? Who will cook dinner? Who will pick up my meds? Who will sit with me so I’m not alone with the kids?

Yeah, it’s a strange feeling to be babysat like the children. However even I’m not comfortable alone. In fact we are looking into things like LifeAlert and apps in case I have another stroke or otherwise.

So imagine just how different San Diego was for us. I got to speak to an audience about cyberbullying and the threats my family has been through, we got to see friends, co-workers, and, above all, we got to lounge by the pool and relax.
The view from our balcony #BlogHer

We slept with the balcony door open so we could feel the ocean breeze, we slept late, and we didn’t once see a doctor. Of course I remained unable to do a whole lot, and my trip was very limited…but at least I was there. My husband kept reminding me that last year I was too sick to even make the trip, so at least this year I could attend. Next year I will hopefully be able to do more.

It really is amazing what a little mental and emotional uplift can do when your life is a battle. So thank you BlogHer and all the friends we were able to spend just a little bit of time with. It made a difference.

BlogHer ’11: It’s Not About The Shoes

I’m taking my time packing for BlogHer ’11. I’m not really fussing over outfits, or shoes. No, this is unlike years past. I’m not worrying about what I will wear during parties, or during sessions.

Instead I’m packing what is most comfortable and what fits. Don’t get me wrong, you women in your fancy shoes and dresses will have a good time, I’m sure. But I’m going to be the one looking very comfy next to the guy in jeans and a t-shirt (he’s also comfy).

In years past I would have been obsessing over which outfit was for which night. I would buy new shoes and post photos of them to Flickr. Sometimes I’d even blog my new BlogHer shoes.

You see, this year it’s not about what I’m wearing or how I’m going to look…it’s that we’re able to attend.

Last year I was very ill and days away from having a total hysterectomy. I had just had 13-inches of my colon and my entire gall bladder removed and facing another major surgery in a few days it seemed smarter to stay home.

This year I’m still very ill, and only a week away from having had a small stroke…my second…but getting in the car with my husband and driving south to San Diego.

We plan on relaxing, seeing friends and rejoicing in our ability to come at all. I will speak on Friday, and will do as many activities as I am able. That might mean simply sitting by the pool and reading, but that’s enough. I will do my best to make appearances at parties and to be out and about, but honestly I may be spending a good amount of time our hotel room napping.

It’s amazing to me that I’m currently not freaking out over what I’m going to pack or wear or which shoes will go with which dress for which night. No. Instead I’m making sure I have all my medications and am ready in case we need to visit the nearest hospital.

I’m packing my most comfortable shoes and my most comfortable clothes in an effort to keep my body happy over the course of the conference. And I can’t say I have any desire to Flickr my sandals.

I’m also bringing along a new fashion accessory: my cane.
My new cane

Yes, it seems a long time ago that I cared which boots I was going to wear to a party at BlogHer, now I just care that I’m going.

So if you are headed to San Diego, keep an eye out for the comfy looking blogger with a cane. She’ll be happy to say hello.