Royal Pains

I’m going to die like Elvis.

No really.

That’s how this is all going to go down. So to speak.

I think he'd crawl back inside of me if he could

I’m finally peeking my head up here on my blog after a week of being ‘sick’ – which is different from my usual ‘sick’ where in I just take all my medications and trudge through life hoping things get better with every lab test. This week we decided to add ‘gastro’ issues where phrases we haven’t used since the kids were in diapers like ‘Aww, she made it through the night without pooping her pants!’ were busted out.

Oh don’t look at me like that, you’ve read this blog before. You are not shocked or surprised I went there.

So I’m now on day EIGHT of said issues and I have another round of IVIG treatment going in me as I type (one-handed). I’m just glad I made it. I’ve been sleeping in the bathroom for over a week so you just never know what state they’ll find me in come morning.

All kidding aside, this is just one more of those things someone with a chronic illness has to deal with. You see, we don’t even get sick like a normal person. Nope. It’s just not that easy. If you have an auto-immune disorder, like I do, you get the same colds and flues as everyone else, but you get nailed.

That is, if what we’re dealing with here is viral. The doctors think it might be. But, that’s another story. (helllllo it started with my increased chemo shot).

But back to my point: as a family with kids you can imagine the germs that go around this house. Which means when someone gets the sniffles, I get pneumonia. When someone gets a 24-hour stomach bug, I get an eight days and counting ‘bug’ that will probably land me in the hospital on bowel rest…I’m just guessing.

To say that I’m frustrated is probably an understatement but I’m trying to keep it in check. We had just gotten word from the doctor that my labs were starting to improve. I was just getting comfortable with the idea of my limitations, and finding ways to work around those limitations. Sure I had been put back on daily steroids, but I had also been given permission to diet. I actually had TWO WEEKS OFF between treatment rounds and was really excited about it…until halfway through I was stricken by what we’ll call the Elvis disease.

The scarier scenario that I am doing my best to ignore – this is my body’s reaction to the increased methotrexate injection and in order to keep my inflammation down I need this dosage.

Hmmmmm, inflammation that gives me strokes, TIAs, kidney issues, liver issues, and potential continued organ loss and horrible, constant pain OR horrible and uncontrollable diarrhea and vomiting.

What to choose…what to choose…tough decisions.

Yup, I think going out like Elvis is my best bet.

He is a legend, after all. And the King.

 

Taking Inspiration From Congresswoman Gabrielle Giffords

I can’t imagine what a violent act, such as suffered by Congresswoman Gabrielle Giffords, feels like. To have your life nearly taken, to battle back from against the odds, and then to work hard to try and ‘do’ your job.

I can imagine what it feels like to want to do your job, and be unable- because you have to focus on your health. To want to make a difference, change lives, and show people how politics can, in fact, work and give every citizen a voice.

Of all the work and hats I would wear at BlogHer, there was nothing I loved more than connecting women and elected officials. To put them on phone calls with the Speaker of the House and to introduce them to high-level White House advisors who would then invite them straight into the West Wing. Nothing made me feel like I was doing my job better, or working harder.

I have seen how powerful the connection can be between constituent and legislator and how it can bring about change. It can be civil. It can take away the nasty rhetoric and get us talking like a united country and it can empower average voters and humble powerful leaders.

I could have never of guessed my own recovery from Lupus would ever take this long. I wish Congresswoman Giffords patience as she focuses on her recovery, and speed. May she kick ass in getting healthy, because she inspires me to do the same.

I want to push myself harder so that when she returns to public office, I can return to connecting her with the millions of women with millions of ideas to change our country for the better…together.

I have watched, like much of the country, as her husband and family and friends have shown her so much love and support. We are two lucky women to have such great people surrounding us and cheering us on. More than once during my own dark, pain-filled times I have found myself thinking ‘What would Gabby Giffords do?’ Silly maybe, as we’ve never met…but she is someone I admire.

And as I wrestle with having to think ‘long term’ for my recovery, being out of work and focusing solely on getting healthy, I take a sort of solice knowing Congresswoman must focus on the same.

People tell me over and over and over again that I can’t take care of my children, change the world through my work, make a difference, unless I take care of myself first. It is an unnatural thing to do, at least for me. And even when I accept that this this truth, I have a hard time waiting for it all to happen. I do everything I am supposed to do, yet we have such a long way to go until I’m able to exercise let alone work. Small setbacks that feel like punches in the gut. Small strides forward I think I over exaggerate in order to feel better about just how long this process takes.

I know the feeling of gratefulness that comes with just being alive. When you realize what *could* have been and how lucky you feel to have those around you STILL around you. It changes you forever, violent act or devistating illness. Eventually you begin to put the fear aside and come crawling out of your new shell. More aware of what you have, more aware of what you could have lost, more aware of the little things in the once dull everyday that bring such joy that it’s almost too sugary, too mushy, too…too.

So it is with great respect I watch and listen and learn as Congresswoman Giffords resigns in order to recover. Perhpas, in a way, I feel validated in putting my health above my work and what I feel is a higher necessity to help our country in this time where pundits consist of who can be the most shocking, out of left field, lying, or downright evil.

But I get it. I get that tug of wanting to uphold responsiblities and take care of business. It may very well cause my Lupus to explode because I have to watch from the sidelines during Election 2012. Right now I want to be planning, laying my usual groundwork by ramping up apperences on news shows and speaking engagements. Making sure so many things are in place. I have no doubt coverage will be amazing but it won’t be how *I* would do it. Actually I have learned that nothing is how *I* would do it, from when I watch someone else cook dinner for my family to how I would get the kids out the door for school in the morning as I watch from the couch, too sick to participate.

Congresswoman Giffords I wish you much luck and love as you recover. I also hope that when you return to politics…when WE return to politics…the space isn’t as nasty, isn’t as volatile, and is ready for our way of creating change.

Magic Hats – The Ridiculous Collection

There have been hats that have come to my door stitched with love and care.

There have been hats that have come to my door with cards attached that have made me weep.

And then there have been hats that have come to my door that had me laughing so hard, I nearly wet my pants.

Ladies and gentlemen…I give you two of the most ridiculous hats to grace my doorstep:

That hat says #suckitLUPIS ... yes, Lupis ... which make it even more hilarious

In case I ever turn Republican, or a Ted Nugent fan, or decide I want to finally watch the whole ‘Wolverine!’ crap ass movie my husband and every other American male loves so much…this hat is for YOU. Yes, my good friend, and college floormate Karie sent this beauty from Arizona. Not only is it camo, but it also has not one but TWO flashlights to keep me shining brightly in the dark. But I’ve saved the best part for last…Karie had the had stitched to say “suckit lupis” …. snort. Yes. Lupis. Which is actually appropriate because Lupus is entirely pissy and makes me pissed.

Speaking of piss…

Tanis aka the Redneck Mommy sent me a doozy. A real, totally authentic Toque from the Great White North. Yes…Canada.

Of course the problem being she sent me some dumb ass team from up there…they had some dumb ass guy that was pretty popular with Canadians for a while. But what do they know, they like Nickleback and Justin Bieber.

So, in true ‘I’m from Detroit and the rest of you can bite me’ form, I took this:

Toque

That’s right…the Octopus is EATING the Toque. Ahhhh, I feel better.

For more about the Magic Hat project, started by my loving husband and pushed entirely out of control by YOU, click here.

The Red Dress and Its Siren Song

You might know the story. You might not.

Sometimes things happen inside the blogosphere that stay there…and sometimes they break free of their Internet chains and spread across globe in other forms from newspapers held with your hands, to tv news to even a story your Mom told your Aunt who told your Cousin and didn’t you know?

The Red Dress is one of those stories. You may have read about from the woman who started it all, my friend Jenny, otherwise known as the Bloggess. You may have seen it on Forbes this week. You may have heard rumors about it from your friend’s mom’s hairdresser’s nail girl who heard it from her aunt.

I can tell you the Red Dress is real. The Red Dress is powerful. But most importantly…

…the Red Dress is sitting in a box in my bedroom taunting me. 

Yes. I have it. The original Red Dress. It just left the hands of my friend Kelly, otherwise known as MochaMomma. The box has Jenny’s addy on and Kelly’s addy on it and it looks like it’s been through many hands before it made it’s way to my house in California.

Everyone has looked fabulous in this dress and it has given them a feeling of …well…whatever it is they needed. Accomplishment, be it getting over their fear of dressing up so boldly, or showing the world their scars. Pride, after having gone through something challenging and conquered their mountain. Even love, having finally learned to accept who they are and who they want to become.

And now it sits here with me, and I can’t get myself to even put it on. My mind is so out of sorts, having heard my doctor fill out disability papers calling me incapable of so many things.

Unable to participate in cognitive thinking for long periods of time

Unable to travel by plane, train, boat, car, or bus

Unable to stand for more than one hour

Unable to sit for more than one hour

Unable

Unable

Unable

I know I’m having issues with my memory and mind. Every time I speak to my husband it’s clear the inflammation is high and it’s targeting my brain. I don’t remember things that are so simple, and it’s a wonder he doesn’t get more frustrated with me. I get so frustrated with myself I want to tear my hair out.

I’m not sure there is any worse torture than your brain not working right…except for maybe the damage done to my body by the disorder and the many medications and treatments used to keep it in check.

My mind is not my own. My body is not my own. I’m some absent-minded, fat, moon-faced stranger occupying the body of a woman who had the world in the palm of her hand, and feels all of it slipping away piece by piece. Now I’m squeezing everything so tight in that hand I’m suffocating what’s inside.

So the Red Dress has been sitting in the box taunting me since well before the holidays. I had a million excuses to not open it and leave it shut. Then I had a million more to just open it but not take the dress out. And tonight, dress in my hand, I ran my fingers over the gold stitching. I ran my fingers of its lavish poofs and strapless top. I wondered how I’d ever fit inside, and if being unable to close the clasps would destroy me even further.

I want to believe in this dress. I am a huge fan and freak of superstition and the power of the dress is right up my alley. Thus my request to Kelly and her permission from Jenny and now my big, fat, chickening out feelings as it sits here.

I’m not one to back down from a challenge. But my God there have been so many lately I didn’t expect one from a dress.

Yet there it sits.

If there is one thing I have learned in my many years of blogging, it’s that these women (and men) will not let me down. We might bicker over issues and we might disagree on which way our community should go and ebb and flow…but when push comes to shove we have each other’s backs. So I know that if they all say believe, I will believe. They wouldn’t lie to me.

Soon I will put on the original Red Dress. I will hire someone to make what is left of my hair look thick and I will hire someone else to paint my face and I will hire a photographer to do his or her best.

And I will stand proudly and feel the magic flow through me. If not from the dress, but from the women it represents, and their strength and power and passion.

You. You will help me do it. And for you I will do it. Not looking like myself and not feeling in my right mind and not the me I want you to see-but someone how, for you, the real me will hopefully shine through.

Magic Hats – The Handmade Collection

Amazingly people worked hard and put together hats to cover my head. It amazes me that anyone would go to the trouble, let alone so many of you.

Speaking of amazing, today’s hat collection is brought to you by my daughter who INSISTED she get to model at least ONE Wednesday hat post. So without further delay here are the hats made with love, given to you with the love only my little girl can show in these photos:

You can learn more about the Magic Hat story here.

New Years & Golden Hearts

Some years on New Year’s Eve my parents would have friends over. They would go to the hockey game (the Red Wings ALWAYS play on New Year’s Eve) and then they’d party. As I got older sometimes I even got to go to the game, but mostly the adults went, leaving us with a sitter. Upon their return, they would put us to bed upstairs and we could always hear the drinking adults downstairs laughing and talking…getting louder as the night wore on, until eventually we fell asleep.

But when I was much younger, little enough to still be sleeping with a stuffed animal or blanket, I remember my parents taking my brother and I to our grandparents home – a good hour or two away from where we lived. We’d spend the weekend with my grandmother and grandfather.

These weekends were always a bit special, and I can trace just about everything I love and adore back to those special two days in a row in Lexington, Michigan.

My grandfather would take me out to his garden, and show me his cucumbers and tomatoes. Which somehow became the best pickles I’ve ever eaten and the best tomato sandwiches ever made.

My grandmother would read and eat her hard candy and open gifts. Gifts my parents would pack but also gifts we grandkids would make throughout the weekend. You see, her birthday was December 31st. Which meant not only did we get to celebrate a New Year but also a birthday. If I found a wrapper in the trash? I’d color on it and it would become a birthday gift for my grandmother. If we found a pretty rock outside on our walk down to the lake? Yup…gift for grandma.

Just before midnight every New Year’s Eve my grandfather would get out some orange juice in fancy glasses and we’d get ready to toast grandma and the New Year. I also remember her blowing out a single candle on a single piece of cheesecake she made herself. My grandmother’s cheesecake was amazing, so I’ll give her a pass on making her own cake on her birthday. And of course none of us have been able to duplicate it…no matter how hard we’ve tried.

Then, at night, I’d sit on her bed with my cousin and watch her take off her clothing very carefully. And I would watch her put on her pj’s very carefully. I can distinctly remember her always asking for help with her necklace. As a child I just assumed it was so special and precious she needed help taking it off so it could go in that special jewelry box she had on her dresser. The one she would sometimes let me open and I would marvel at the jewels and trinkets inside. Many times I would be poking through that jewelry box while my grandfather removed the necklace around her neck.

I must have seen this ritual at few dozen times as a child. And I always wondered what was so special about that necklace.

It wasn’t until after her death I realized what was going on. Like me, my grandmother had horrible pain from an auto-immune disorder. Her’s was rheumatoid arthritis. Yes, I have it along with my Lupus but as her life went on she became crippled from the disorder. She had trouble unclasping her bra. Taking off her clothes. And that’s why she would take her time getting undressed all those nights on her birthday. As a child it all seemed like some elaborate game of dressing and undressing.

And my grandfather would always help her take off that very precious necklace, not because of its significance, but because of the pain she felt just trying to unclasp the hooks.

Or was it both?

I still can see those orange juice glasses toasting my grandmother and the new year. I can hear the clink as we said Happy Birthday and Happy New Year all at once, chaotically and with as much excitement as any kids allowed to stay up late could do.

And now as I hold that precious locket attached to that necklace I think I know better. Or at least I’d like to think I’ve romanticized my grandfather helping her take off that locket, and the many years of toasts.

My Dad tells stories that are typical of that era. Of my grandmother raising five kids while my grandfather worked, of course, for the auto industry in Detroit. My Dad talks about his great  grandparents in the home cooking and smacking him with a frying pan. And then he mentions how different his father treats his grandchildren, as opposed to how he treated his own children. There are tales of grandma sending kids to get grandpa from the local watering hole…and things I just can’t fathom from the sweet man I knew who always bought me jewelry with my birthstone and made sure my basketball team had chocolates before every game.

So in my young mind, my grandfather helping my grandmother remove her locket every night was an act of sweetness, not of necessity.

Their’s was the era of separate bedrooms, where I cuddled with my grandmother and she sang me songs to sleep, while I could hear my grandfather’s radio coming from his room. Always listening to a baseball game or the news. And when we weren’t in bed, they still shared separate interests as my grandmother would string her gum wrappers together to make me a necklace or attempt to knit or crochet. I can’t imagine how hard that must have been for her, given the pain I now know she had and I certainly know how it feels. My grandfather would remain in his room listening to that radio..always the radio…or cooking for us. I always wanted my favorite, Czernina, and I can remember smelling it simmer all day as my grandmother read tabloids or used her crippled hands to make some magical bracelet or crown for my head.

But I will never forget that nightly ritual…watching my grandfather carefully remove that locket from her neck. Kissing her cheek goodnight. Never her lips. Kissing her cheek goodnight and then retiring to his radio and single bed in the room around the corner from hers.

Years after my grandmother died I remember my other grandfather, my Mom’s Dad, attempt to get my grandpa to join him on one of his adventures. It was a cruise or a senior’s excursion of some sort, and my grandfather would refuse. Waving his hand he’d say ‘no…no….I might have done that with Helen but no, now I just want to watch the news and go to bed.’

And so it went, and continues to go, with my grandfather never having wanted to do much after my grandmother died. He would come to my brother and I’s games and shower us with affection…but that’s where it ended.

He told me he was just holding on until my high school graduation, then he would be joining my grandmother. Then he said he was just holding on for my brother’s graduation. My cousin’s. My wedding. My bother’s college graduation. My cousin’s. Then he said he was just waiting for my son to be born. We named him after his father, my great-grandfather. And for this he was appreciative and then typically told us maybe he gave us the wrong spelling.

Then he was only holding on for my daughter to be born. And when she arrived, early, we gave her a Polish nickname that meant ‘Helen’ and his silence was all I needed to know how much it meant.

So every New Years this is where my mind wanders. To my grandmother. Her birthday. That locket. The one I now carry with me at all times because it was what I was given upon her death. The one I watched my grandfather remove every night I ever stayed in their home, or they stayed in ours. The one my husband held to take this photo, and I couldn’t help but notice his wedding ring and her heart of gold.

My Grandmother's Locket

Happy New Year.

Overwhelmed

I’m supposed to show you more photos of all the Magic Hats that have come to my door today. It’s Wednesday and I promised Wednesday hat updates.

But instead of showing more photos today, as I had planned, I needed to stop for a minute and say a few words about what has transpired:

You have knocked me off my feet.

Not the kind where the guy with the big check comes to your door and the little old lady answers and looks shocked for a minute and then screams and jumps up and down. But the kind where you draw in air and hold your breath and  cant’ let it out…and when you do it’s so slow and deliberate that you just cry. And cry. And cry a bit more because you just don’t know what else to do.

I think what put me over the edge was a box from one of Aaron’s cousins. He included a poem, written in honor of their grandmother, who used to write poems for just about everything…including the day I became a part of their family.

Many of you hand made me hats. You painstakingly used your hands, something I can’t do, to make something just for me.

Or some of you went and picked out something you knew I’d either look fabulous in or would laugh at hysterically or would love, not matter how tacky.

The point being you took the time to truly think about me, even if it was just while shopping for the holidays or grabbing yarn at the store. I’m thinking i really do know some of the most amazing people on earth. And am related to a lot of them.

The other reason those photos are missing is because I’m holed up inside my room, after a long day of all my in-laws being here, including my husband’s brother and his family. Yes, my kids are playing with their cousins for essentially the first time….since the last time everyone was really too little to remember. My home is filled to the brim with laughing and yelling and kid noises that somehow don’t sound nearly as bad as playdate squeals or sleepover threats to ‘get to bed now kids….’ because it’s family – family that probably won’t be together again for another long stretch of time.

So yes, I am overwhelmed because the hats KEEP COMING and the love just keeps enveloping me until nothing, not even Lupus, can break through. Ok, maybe it does from time to time when I need to excuse myself to lay down for a bit…but even then there are hats all over reminding me to stay strong. They are up in my bedroom and down in the living room and by the front door and coat rack…and soon to be hanging on my new hat racks…made with love by my three greatest loves on this planet- my husband, my son, and my daughter.
The beautiful hat racks handmade with love by @aaronvest & kids -photo helps incase I forget them in 5min #lupusbrain

Thank you. All of you. Those words seem so easy to write but please, please understand and feel the weight behind them. You all inspire me to try harder and to fight harder. Thank you.

Magic Hats #1 Wordless Wednesday

Hats from just some of Aaron’s family, with one special hat in honor of Aaron’s family thrown in for good measure. You can see the Magic Hats story here.