2011

Let Me Count The Ways

November 26, 2011 by Queen of Spain 12 Comments

It is, again, the wee hours of the morning and my mind and medication have me awake.

Since I have the ear of so many of you who suffer from a chronic illness, I felt it time we talk about that thing no one ever wants to talk about when it comes to chronic illness: living daily as someone you love suffers.

Living.

It’s all very taboo to talk about this, although I’m not sure why. Probably because it’s so intimate. Because it’s so personal. But let there be no mistake: chronic illness will change everything.

But just like everything else, it’s how you handle that change that makes all the difference in the world.

(photo by Megan Hook Photography)

I am thankful my partner is my best friend and I can talk to him about what ails me and what sustains me. He still rolls his eyes in all the right places and doesn’t hold back when I need to be kept in check. Something a good partner will continue to do when you are laying in a hospital bed, your own bed, or just at home bitching and moaning about taking your pills and injections. You don’t get off the hook because you are sick, in fact, you might get that eye roll a tiny bit more often because he knows damn well you know better than to be pulling whatever crap you are trying to pull as staying healthy is what is most important.

I am thankful he is patient and kind, even when my steroids make me otherwise. ( I type that with one hand as I open a pill bottle with another, knowing that I need to keep this mood in check before the rest of the family wakes up and comes downstairs. This way they don’t find me in a puddle of tears and tissues OR scowling and banging hard on the keys of this poor, beat up laptop…weary from having words shoved in and out of it as my emotions tug and push and pull. )

But I am forever in love with this man who has put myself and his family first as we battle this long-term war together. Having him has made all the difference.

As the tears fall on my keyboard I am letting go of my worry about the future, about our time together, about just how many more test results or lab work ups or doctor sit-downs we can take.

I have no fear.

He is by my side through better and worse and that makes all the difference. I will never have to do this alone, and I will never have to face this without holding his hand. Or hearing his laugh. Or giggling as I lay with an IV in my arm while he sweet talks the nurses into bringing me my drugs early.

Don’t let your disease or disorder fool you. It WILL try you and your relationship in ways you never envisioned when you heard that first diagnosis and muttered ‘pfft, we can do this.’ Time ticks slowly as you wage war, and wears you down. What I wouldn’t give to have the last 18 months back to be lived as a healthy person, just as thankful for those by her side. Or to know then what I know now, so I could prepare.

But when those dark days come, know they are only temporary…even if temporary means months. Know that they will pass…even if passing could means years. Know you will come out the other side stronger, smarter, and with a much bigger appreciation for the person who was your primary caregiver, your cheerleader, your biggest fan, and your biggest worrier and warrior.

I wish you all such a partner as you wage your war, because I know I am one of the lucky ones. And if I can find room somewhere between our son and our daughter in our big ‘ol bed, I’m off to lay my head on his chest and soothe the fight in my body for just a bit longer with his heartbeat. Only he has that power…because I gave it to him long ago and not once has he wavered, and not once have I dreamed of taking it away.

Ok, maybe only a few times when he insisted he push me a bit too fast in the wheelchair just to see if we could go downhill at TOP SPEED or his repeated attempts to show my ass to the world out the back of my hospital gown.

I love you, Aaron.

If it’s any consolation they should drop my steroids back down next week and if you are lucky I might not be so marshmallowy. But don’t get your hopes up.

Smooch

Filed Under: #SUCKITLupus, Feeling YaYa, Kaiser, Stepford Crazies

Survive Thanksgiving With Your Conservative Relatives

November 23, 2011 by Queen of Spain 12 Comments

Believe me, I know. I have them too. I have cousins who call me a socialist hippie and I have uncles who still yell ‘Run N*gg*er! Run!’ during a football game.

Now I have the luxury of being far, far away from family in California…eating my elitist, ivy league educated turkey…while I’m sure they shot and killed theirs from Sarah Palin’s helicopter. But whatever our differences, family is family, and sometimes they all have to be in the same room together.

First and foremost prepare the kids:

Of course we know that sort of talk is wrong, and we would never speak like that at our house, our school. I’m not sure why they believe that way, but they do, so we just try and be as polite as possible and tell them as nicely as possible they are offensive and wrong, and then we go home. But hopefully we won’t talk about those sorts of things at all and we can just discuss how nice the fall leaves look and how great you are doing in school, ok?

Of course that will lead to the discussion about their hippy, progressive, charter school….but let’s just take one issue at a time.

Luckily the great folks at NPR have your crazy Aunt that sends all those crazy e-mail forwards covered. You know, the ones in all caps that claim Obama is a secret Muslim and the Democrats are really building concentration camps to lock away all the Christians…or something. Check it out:

You should start by telling tell him that the emails are nearly always wrong. PolitiFact has checked 104 claims from emails and rated 80 percent of them “False” or “Pants on Fire.” Only 4 percent of the claims have earned a “True.” …

The chain emails cover a few broad themes:

Obama is unpatriotic! E-mails have said Obama complained that the troops were whiners (Pants on Fire), that he refused to say the Pledge of Allegiance (False) and that he wants soldiers to take a loyalty oath to him rather than the Constitution (Pants on Fire).

Democrats have passed a secret tax! Some recent emails claim that because of “Obamacare,” monthly Medicare premiums will more than double by 2014 (Pants on Fire) and that home sales will be taxed 3.8 percent (Pants on Fire) to pay for the new health care law. Another one in this genre says Obama’s finance team is seeking a 1 percent tax on all financial transactions (Pants on Fire).

Perks of office. Another theme in the emails is that members of Congress get excessive perks. The emails say members of Congress get full retirement pay after one term (Pants on Fire) and that congressional staffers and members don’t have to repay their student loans (Pants on Fire).

The government is coming for your guns/health data/light bulbs! Some of the conspiracy theories are truly wacky. During the health care debate, one claimed that under the public option for health care coverage, people would be implanted with data-storing microchips (Pants on Fire). A more recent email claimed the government was mandating that everyone get rid of their existing light bulbs (Pants on Fire). Another email said you must list your guns on your tax return (Pants on Fire).

Not enough to convince your Grandpa that he’s NOT about to face a death panel? Try this one on for size…the DC CC Thanksgiving Cheat Sheet! it’s got everything from Health Insurance Reform (they call it ‘Obamacare’) to how to really appease your far right Tea Party relatives with FACTS:

EXTREME AGENDA TO APPEASE TEA PARTY

· Three times, House Republicans pushed our government to the brink of a shutdown to put their radical agenda ahead of the American people’s interests. · Voted to repeal health insurance reform; Voted to defund NPR, PBS and Sesame Street; Voted to classify pizza as a vegetable for school children; Voted to defund Planned Parenthood and stop them from offering cancer screenings; Voted to protect companies that do business with the Iranian regime

· Pushing plan to privatize Social Security · Forced the Supercommittee to fail because they insisted on more tax breaks for billionaires and Big Oil at the expense of the Medicare guarantee and creating jobs.

And if that weren’t enough, and things get REALLY ugly, Colorlines put together a nice guide on how to discuss RACE:

Instead of just being reactive, why not be proactive? Start with a question. Use plain language. Set the frame and tone you want. Create an opening for some constructive dialogue. For example, “Did you see that video of the police cracking down on the non-violent student protesters?” Or, “What do you think of the plans to shut down the neighborhood health clinic that serves mostly low-income people of color?”

Remember, if you get flustered, I’m home on Thanksgiving and if you have to, you can tweet me or text me and I will talk to Grandma and tell her that I’ve sat in the West Wing, looked these people in the eye, and they are NOT out to take her money, her 401k, or her guns.

I am a mother. I am disabled. And I have every reason to believe there are good and bad people in government -just like there are good and bad people in the world. In our own families. But at the heart of it all, we want the same thing: the American Dream. We are not that different regardless of if we show up with the big turkey or the vegan casserole. We want to make sure those we love get what they deserve and those we care for are taken care of. We may just not agree on how to get there. But make it clear that no one wants anyone to suffer. I know that one is hard to swallow when we all could swear those conservatives really do not care if we live or die, but I’m going to give them the benefit of the doubt this holiday, and tell them you expect them to give you and their President the benefit of the doubt as well.

The First Lady isn’t trying to take their burgers. She is simply trying to help kids exercise and eat better- right along with moderation in many things she enjoys her fries and her ice cream and allows her kids to have treats just like we do. Her overall goal is to just make sure kids know what brocoli is and that it’s better for them than a chocolate bar. No biggie, right?

Now, with that in mind, and some ammo in your pocket (the factual kind I provided above, not the real kind your Uncle has behind that glass hunting case you’ve told the kids they aren’t allowed to go anywhere near) try and enjoy your family. Give thanks that our country is so diverse that we can argue and not be thrown in jail for speaking out. Tell them you stand by the PEOPLE not the BANKERS (if they dare bring up OWS) and that you would expect they too would be for hard-working citizens, not heartless foreclosure mongers who give out billion dollar bonuses while charging them extra claiming they aren’t making enough money.

And always, always, eat the dark meat. It’s the best by far, and it will piss off your racist Grandpa when you tell him dark is best.

Good luck.

*updated on Thanksgiving morning – it’s been pointed out that I have not mentioned how to handle the ‘gay’ issue with your family. It saddens me because I’d hope that we’ve come far enough where even the craziest of families HAVE GLBT at their TABLE helping cut the turkey, so they’d keep it civil…but alas I am probably giving too many families the benefit of the doubt that they even acknowledge their family who prefer the same sex or are transgendered people…so here is what you do…and buckle up, this is where it gets really ugly:

Listen, Aunt Betty, in our family all men and women are created equal. That means they get all of the same rights you and Uncle Bob do. Now, you might not believe in that, and your God might not believe in that, but this is America- and in America we have many Gods and many different kinds of people. So if you are a GOOD American, you will make sure everyone is EQUAL under the law. Believe me Aunt Betty, if I could take away you and Uncle Bob’s marriage I would…considering he’s been an alcoholic and has been beating you or threatening to abuse you for as long as I was a baby, and why you two get to be married and some of my best friends don’t seems like a real shame in the eyes of the Lord….but I digress. Oh, what’s that? You say ‘why do they have to call it marriage and can’t they just have some civil rights marriage or something?’ …you see it doesn’t work that way for real. Marriage and civil unions come with VERY different rights. In fact, marriage has over 1049 rights while civil unions has 300 with NO FEDERAL protection. What does that mean? It means if Chris and Chris get married in Vermont, legally, and they decide to go vacation in Mississippi…and Chris ends up in the hospital, her partner can’t make her medical decisions for her in Mississippi. There is also the problems with immigration, child support and adoption (think of all those NOT aborted babies that you want to have homes…and the LOVING homes they could go to -instead of the fucked up homes like yours) and many, many other unequal problems. Now yes Aunt Betty, I know, it all comes down to God. But again, this is America…and if I have to tolerate your God- you have to tolerate mine…or my lack of one. Was this nation founded on Christian values? Yes. But our founders were smart enough to know we’d abuse that and put protections in to make sure we didn’t. So please Aunt Betty…go get Uncle Bob another scotch and piece of pie, so you don’t get a black eye tonight and just don’t tell him you voted in favor of same-sex marriage in your state. I won’t tell if you don’t.

Filed Under: Feeling YaYa, Holding Court, Stepford Crazies

Love, Laughter, & Lupus

November 19, 2011 by Queen of Spain 56 Comments

When my husband and I discussed the idea of our holiday cards this year, we floated a ‘silly’ card to send out to all our friends and family. Something easily staged and very representative of our little clan of gaming, wired, connected lovebugs.

I immediately loved the idea, until I realized I would have to be in the photo.

As many of you know, Lupus and the treatments for my disorder have left me in a body not my own. As strong and as confident as I can be, the steroid weight gain and the chemo giving me bald spots and thinning hair has been enough to make even me question just how important it is to be ‘pretty’ and ‘thin’ in today’s world.

If major media networks were to see me now, would they still have me on their shows to talk election or women in politics? Would my husband’s co-workers or friends nudge each other in the ribs and say things like ‘dude, his wife got ROUND and she’s getting that receding hairline like us men on top!’ and laugh? Would the women just waiting to see me fail have another reason to mock and snicker? ‘Queen of Spain ain’t looking like such hot shit anymore, is she? She’s disabled and can’t work, and she looks like HELL!’

I imagine a million other scenarios, even though I know better. Even though I am, most of the time, strong and confident and ready to take on anyone or anything at a moment’s notice. I will fight for you and for my kids and for what I believe to be the right thing when I get fired up over an issue.

In other words, I know better.

But I am also a realist who understands the type of world we live in. It covets the size zero over the intelligent debate. And it doesn’t matter if you got your ‘unfortunate’ new looks from over eating, medical issues, or (as in my case) chemo drugs and very high doses of very powerful steroids. Ones, I might add, that are working.

So it took everything I had today to allow Megan to photograph myself with my family for our holiday card. And after a deep breath I asked her to photograph just myself with my husband. Because no one in this world makes me feel more beautiful than he does-and I knew once he took me in his arms I wouldn’t think of Lupus, or of how I looked to the outside world, or if anything that outside world said would matter. I just knew we’d laugh and I’d feel beautiful.

It may not seem like a big deal to you…getting photographed while sick. But I have been doing nothing but sitting day after day with an IV in my arm, taking pill after pill, administering injection after injection all somehow sucking the pretty right out of me. At least to those who don’t know that my secret weapons are waiting for me at home.

A man who stands by me through better and for worse. Who kissed me this very same way on our wedding day:

And two children born of that love. Following in the footsteps of their father bringing out my inner strength. Which I am proud to say is something more beautiful than anything on this earth.

Today I conquered my fear in showing you all how I look with this illness ravaging my body. One of my biggest #Operation Eleanors to date. But what I learned was so much bigger than ‘I am not afraid’ or ‘they are going to see how much I have changed’ – what I learned was that true beauty is in the love that surrounds me and lights me up from the inside out. It gives me more than any drug they pump through my veins and makes me stronger than any steroid they administer.

They are, by far, my strongest weapon against Lupus, and they are single handedly kicking it’s sorry ass.

This weapon grows stronger every day, as I grow stronger every day, because we are beating this together, and doing it with the most beautiful forces on earth: love and laughter.

Thank you Megan for capturing so many great moments with my family. You can find her work at MeganHookPhotography.com

Filed Under: #SUCKITLupus, Feeling YaYa, Stepford Crazies

Polish Pride

November 17, 2011 by Queen of Spain 11 Comments

They are just stuffed dumplings. Stupid, yummy, stuffed little pockets of Polish goodness. That’s all.

But this week when it came time to sign up for our school’s multi-cultural Thanksgiving Day feast my kids were adamant I make pierogi. They must have them. This was their heritage and what they wanted on that table as kids and parents and teachers pass by and fill their plates with everything from gumbo to lasagna to kimchi.

Their Mom’s pierogi’s must be there.

So I spent the week dreading how to figure out getting treatment for Lupus, juggling regular life, and spending what always ends up being hours putting together pierogi’s for the family.

I set the kids’ expectations low all week-long.

Mom might not be able to do it guys. I have treatment this week and you know how tired I get. I might just need to bring those frozen ones they sell at the grocery store. I might just bring paper plates and cups- the school really needs those too. I just might not have the energy to take you to the movies and make pierogi.

This went on and on.

And then this morning, on the way to school, in a quiet voice from the very back seat comes…

Mom, I know you are tired from treatment, so how about you show me how to make the pierogis and Hala and I will do it for you. We can do it Mom. You can just watch and show us how. Remember that one time we helped you put the meat inside? And sealed them with that water? We can do that Mom. I know we can. Then you can rest and everyone will get to taste our family’s recipe.

Oh holy heartbreak. Only my son could reach in and rip that heart like no other.

Then my daughter chimes in:

Yeah Mom! We can do it! I can stir and Jack can do the part with oven because I’m not allowed.

And then, before I could say a word, the two of them spent the rest of the ride to school plotting exactly how they were going to make three dozen pierogi for their school’s feast.

So I am headed to the doctor now, and on my way home I will pick up what is needed. I will also pick up another pack of those frozen, store-bought ones. Just in case.

I want to make these for them so badly. I want to be a normal mother who can whip up a dish for their school functions just like every other mother on earth. But no, I have to be the Mom with limits. The one who also wants to take them to the movies tonight and knows there is no way she can do both, because her body just won’t allow such extravagances.

But if nothing else, I have the most loving kids ever who decided they would rather help Mom than play their video games or run around on their scooters -all so that their family was represented at that school feast table.

I hate that they have to help me if we want to get this done, but I love that it was their idea to pitch in and make it happen.

Filed Under: #SUCKITLupus, Feeling YaYa

School Photos: Step Away From the Matching Sibling Sweaters

November 12, 2011 by Queen of Spain 25 Comments

Apparently I am a horrible mother for allowing my children not only to choose what they wear for their school photos, but to also let them choose the background for said photos.

Some of those Martha Stewart type Moms aren’t impressed. They’ve declared my husband and I those ‘weird California’ types and then discussed how they/theirdaugherorson/theirgrandchild/theirchildren would have clothes laid out for them the night before and their hair done exactly as they would deem fit (ouch, tight pig tails HURT) for school photo day.

Afterall, these are children. We can’t trust them to dress themselves for something this important. I mean, they would wear their Halloween costume or their PJ shirt with a tutu bottom.

This is important Erin, every family member will have these photos on their mantle or fridge. Don’t you want them to look…you know…normal?

No, we want them to look like themselves. Like they do every day. With their creative flare and their comfort showing. We want them to look and be who they are– not who we want the world to think they are.

We want them to express themselves and know they should feel pride for picking out what makes them…THEM. Not some watered down, matching, scratchy, uncomfy, looked like they stepped out of some catalog version of them their own parents wouldn’t even recognize.

So behold my amazing, creative, and awesomely dressed children:

May they, and their family, remember and respect what they were like in the 1st and 3rd grade and may they also learn to lighten up a bit. It’s a school photo, not some contest to see whose kid can show up looking the cleanest.

But if there happened to be an award for originality, comfort, and bad-assery…my kids just kicked your kid’s ass.

Filed Under: #suckit, Stepford Crazies

Because I Want To: Operation Eleanor

November 6, 2011 by Queen of Spain 11 Comments

Sometimes the hardest part about living and fighting with an illness is the living.

Let me explain, please.

It’s easy to wallow and feel shitty for yourself. I could do that daily if I wanted, and some days I do. But really, it’s more like some *moments* I do. That part is entirely easy. All the medication. All the doctor’s. All the IVs. All the fear for my family. Something many don’t get. I don’t really fear for me…I fear for them. And believe me that is way harder than just wallowing for yourself and feeling mad and angry about your situation. It’s feeling scared and worried constantly for everyone I love that kills me.

Then I get into the fight mood. I’m going to growl and kick Lupus to the curb, I’m going to be the strongest and most amazing person with Lupus EVER and will CRUSH anything in my path. ERIN SMASH LUPUS GRRRRRRRR.

But then, most of the time, it’s just the living. And that is the hardest part. Where you’re not really fighting and you’re not really angry and you’re not wallowing- there is no high or low- you just live. Every day. With this condition that affects every.single.day. of our lives right now.

Preparing meals ahead of time, scheduling pick ups and life for children whose mother will be hooked to an iv every single day this week so someone else may have to get them from school. Making sure permissions slips are signed, homework is done, husband has his hat for the cold wind by work, laundry is in, etc.

Life. Just life.

So when my friend Megan began her #OpEleanor challenge I ignored it. Well, I didn’t ignore, ignore it…I just decided that everything I wanted, everything I aim to do that I fear or that is new has no place in my life. This just life we have been struggling to cobble together since Lupus took it over.

As per usual, I want too much. I aim too high. I want it ALL and I want it NOW. So Operation Eleanor was too big for me. Right now, I have learned too much is too big for me. If I signed up I’d end up trying to climb Mt. Everest before the end of November and then Aaron would be mad because I’d train and get sicker and yet insist I keep training and then I’d end up med-evacuted off the top of mountain where I nearly killed myself trying to reach the summit because I want too much. I aim too high. I want it ALL and I want it NOW.

Go ahead, ask Aaron, he’ll tell you. I’d try it. I would actually try to climb that mountain, with Lupus, and nearly die, or actually die, doing it. And all because I signed up for a blog challenge from a friend and refused to go small, or give up. And because one of my biggest fears is heights and right now my biggest challenge is, obviously, anything physical. So without even thinking Everest comes straight to mind in my Eleanor list and there you have it. The Vest family would be somewhere around Nepal and Tibet while I try to trek and do the impossible all because that is just how I am.

Thus my ignoring Megan’s challenge. It was safer. Just trust me on this. This means no one dies- and I am not exaggerating here.

But then, out of the darkness of me feeling totally ‘wallow’ and angry that I couldn’t accept this challenge and thus die, my husband tweeted that our eating and trying a new vegetarian dinner was an Operation Eleanor.

And of course, he was right. It was small, but it was something. and it was something I could and did do. Not everything has to be huge. Not everything has to be NOW and ALL and larger than life.

Sometimes it’s just life. And all it has to be is just life. And that needs to be enough.

It’s a lesson I am still learning. There is joy in aiming – but you don’t always have to shoot for the moon. There is joy at going BIG and once in a lifetime…but there is also serious joy in going small, and every day.

The is one of hardest things for me to grasp- it doesn’t have to be Mt. Everest each and every time. Even if Mt. Everest is how I roll.

So while I am not sure I can commit fully to this blogosphere fun, I can commit what I can handle: and right now that is day-to-day. New food. New ideas. If it can’t be Everest, maybe I can climb a ladder…which is just as terrifying for me, if not more than a large mountain.

Or other days it can be Everest. Or that Morocco shopping trip I promised my daughter while we saw the EPCOT version at Disney World…the one she still remembers and writes about in school…the one I WILL give her some day:

Or maybe I can just spend each day learning to be. And to be ok with it being small, being big, or being somewhere in between. Learning that this new life of mine is going to last awhile and I need to accept its challenges and it’s limits.

And be ok that sometimes just life happens in my new limits and that life is just fine and wonderful as is- it doesn’t need to be bigger or ALL or everything.

I am still here, which is an Operation Eleanor in and of itself. And as long as I continue to be here, it counts.

And if i keep telling myself that I might actually believe it. I’d just rather Everest.

Filed Under: #SUCKITLupus, Stepford Crazies

Surviving Yet Another Holiday With Smiles And Duct Tape

November 1, 2011 by Queen of Spain 9 Comments

Sometimes it’s not the exact holiday you remember when your child has Tourette’s or OCD. It’s the tic or meltdown that comes with it.

After spending days deciding on his costume for this year, my son had to make sure it fit perfectly. And perfectly for him isn’t the same as perfectly for you and I. Oh no. He had to know exactly which shorts and pants felt exactly right under said costume. and how it felt zipped all the way up to the top. and now just half way zipped. And if it scratched him funny. And if it rode up on one side and not the other. And if he could run and bend his knees just right with it on, or if he had to stretch the fabric a bit when he walked. You get the idea.

It’s trying on his helmet and mouth piece over and over, adjusting, re adjusting, and then melting down because it wasn’t curving properly over his mouth. Of course the $19.99 cheap costume wasn’t curving properly over his mouth, but try explaining that to him. After what felt like forever of going back and forth trying to fix it and him declaring Halloween ruined no less than four times, I found duct tape fixed the matter to his liking enough to make him ‘uncomfortable’ but not ‘with a tic uncomfortable’ and we considered this a win and moved on.

He then dropped off his helmet that I painstakingly worked on for hours after just a block of trick-or-treating…yup. You read that right. He wore it for maybe 30 minutes. Total. But honestly, I didn’t care. He was happy and having fun and that was all that matter. I would have taped a million cheap costume helmets to see my kids smile and be excited like that again.

After adjusting his sister’s cheap headband a few times I was thankful she was happy with how it looked and off they went. She didn’t want make up. She didn’t even want her hair brushed. She threw on her ninja outfit and was ready to rock.

Of course there was also the shoe situation…his were uncomfy after breaking a few days before and his Dad, thankfully, fixed them ‘PERFECTLY’ – she just threw on her pink crocs and took off running. In fact, they both took off running this year so fast I was thankful to have been handing out candy at home.

But now that I think about it…one more thing about that ‘shoe’ situation….why did my son make such an ISSUE over me fixing his helmet and didn’t even blink at his Dad fixing his shoes? The tools which help him run! I swear he just trusts the way his Dad fixes things more than the way I fix them because the man has tools. Whatever. I bet you some of those tools are mine.

While I am glad another holiday is in the books for my kids filled with memories and fun..I’m also glad we continue to find ways to accommodate and beat his Tourette’s and OCD, and not let it beat us. Sure, we all get a bit aggravated sometimes, but we NEVER say it’s his fault and we NEVER make him feel as though there is anything wrong with his body’s needs and his discomforts, doing what we can to make him comfortable in a world he would love to organize and make feel unscratchy and comfy.

But then again, given the chance…wouldn’t we all??

Filed Under: Count Waffles, Feeling YaYa, Princess Peanut, Stepford Crazies, tic-toc

The NeverEnding Battle for Belly Laughs

October 25, 2011 by Queen of Spain 12 Comments

There are things that happen in a family when someone is sick. Good and bad. A lot of stuff that I just can’t write about all the time, or we’d all just be depressed 24/7. It’s not that I don’t want to get it all out…believe me, I do. But there is a part of me that wants to spare you the whining. Because it does feel like whining sometimes.

What people do not understand about a chronic illness like Lupus is that the treatment, and medication, and most importantly that the illness is chronic.

Hear me out.

It never ends.

It just keeps going. And going. And going.

I see the doctor for an office visit. I see the doctor for a 7 hour treatment. Another 7 hour treatment. Another 7 hour treatment. Then a 2.5 hour treatment the next day. Then a half an hour treatment once a week. Oh, and every two weeks I see my pain management doctor who tries to keep all the pain for all of the above under control so I don’t have to be in the hospital for pain management. Then an x-ray. Then an MRI. Then I see my regular doctor to update him. Then I see my OBGYN to update her. Then I do another round of all those treatments up there. Then another office visit. Then the neurologist. And he orders some tests. So we get those tests done and then it’s time again for all those treatments up there and visits and ….do you get the idea here?

It never ends. On average I see a doctor 3 out of 5 days per week. Most of those days include needles. And it’s exhausting.

But understand it’s NOT exhausting for me all the time, it’s exhausting for everyone who loves me.

Why?

Some days the news is good. Some days it’s iffy. Some days the news is crappy. Some nights Aaron drives me to the ER and they always offer to keep me. Sometimes I have them keep me and I have to stay a few days. Sometimes I just come home and do the best I can.

It’s not that we’re not thankful that I am better overall, it’s just that this isn’t like a cancer or some illness where you fight it and fight it and either you beat it or you die. It’s not like that. I have to fight and fight and fight and fight and fight and fight and fight and fight and the fight just keeps going. And it doesn’t seem to matter how hard I fight or how hard my family hopes and wishes or how hard we all work together…

It just NEVER FUCKING ENDS.

It doesn’t stop. The appointments. The treatments. The need for help. The need for hope. The need for NEED.

And some days it’s just hard to wake up and do it all over again.

Believe me. I’ve learned a lot since this all started over a year ago. Almost two years now.

I’ve learned how to swallow my pride and say ‘yes’ to help. I’ve learned that I can not fix everything. I have learned that I am not in control. I have learned that I still screw up a lot. I have learned that my children are more resilient than I ever imagined. I have learned that my husband is stronger than I ever knew. And I have learned that some friends will surprise you in the best and worst of ways. I have learned that love does make it all better and helps me fight harder, but I have also learned that I can’t make it all better just by loving back. Love doesn’t cure Lupus either, but it sure is powerful against it.

I have also learned that I do not know how to handle this on going shit storm that just does not stop. I have to plan again for treatment that starts on the 7th. Right after speaking on the 4th at Blog World Expo– provided I am strong enough…which I should be since the only travel involved is getting in a car and going downtown.

Maybe this is the story I need to tell more often when people ask me about having Lupus. Maybe I need to explain more about this being one hell of a long marathon. And how it’s hard to ask people to hang on just a bit longer for me to get better, to please just help me ride this out, to please, please just understand that I too wish I could attend/workat/cometo/beinvolvedwith/helpoutat/domorethan/be/do/fillintheblank thing you are asking me to do.

I don’t want to go to bed early. I don’t want to take naps. I don’t want to say ‘no’ and I sure as hell don’t want to have to be left out of that whatever for the 20th time because no, I’m STILL not well enough.

So before you go feeling sorry for me, or annoyed with me for bitching, know that – overall – I am improved. It’s just slow. So slow that it’s nearly killing me slow. Ok that’s not literal but you get the idea.

Aaron and I just need an extra push to get us over this hump so we can battle this for a bit longer. We still have a ways to go before I can declare anything normal around here and before I can finally feel like I contribute to the house, work, life, etc.

I can do much more now than I could before. I’m not losing organs. I’m not in the hospital. That’s all good. But the treatments are never-ending. The doctor is stuck to me like glue right now, his choice, because I need to be ‘watched closely’ right now. And I’m just afraid that we’re worn down here a bit too much.

Nothing helps more than having those moments where the four of us are laughing and playing. Nothing helps more than being able to see relief in their faces and when that’s not possible, to at least see joy. Tickle fights need to happen more often. Maybe we need to have a live version of Angry Birds and toss some stuffed birds and pigs around the house. Maybe we need to make a batch of my Dad’s special ‘cider’ and take the kids trick-or-treating with friends and just talk and laugh. Yes, there will be me in a wheelchair as the constant reminder but hey, that means I can hold more cider and candy.

Silver linings. I will be pushing more and more of them as we keep pushing on and on and on. Because Lupus = chronic and this is a long fight. A long, long fight. And just when I think I don’t have anymore in me I hear from a small voice upstairs how if Mom were a stuffed animal we’d name her Squishy because she’s the squishiest. If Dad were a stuffed animal he’d be ‘PG’ for ‘Party Guy’ ’cause he’s the most fun. And I laugh to myself and shake my head at the crazy things the kids come up with and realize that during all of this, in order to get through, we need to get a little crazy too.

Silly.

Crazy.

It works. It makes us laugh and the more we laugh, the better. And we could really use some laughter right now. Mom and Dad are tired. Battle worn and weary and in need of some belly laughs.

And I refuse to let Lupus take those away.

Ever.

Filed Under: #SUCKITLupus