Queen of Spain

Progress & Pokes

February 7, 2013 by Queen of Spain 6 Comments

Yesterday I was sent to UCLA to be poked and prodded and peered at.

I’m a modern marvel to be studied.

I came home feeling emotionally spent, tired of my life revolving around treatment plans and drugs. But also thankful I had come far enough to be able to take myself to the appointment and to be so far removed from the threat of ‘scary’ illness no one ‘had’ to come with me to just hold my hand.

But maybe they should have, just to keep my hands off of other things. Because despite my antibacterial lotion and my constant hand washing, I picked up a stomach bug and spent the night enjoying the company of the nearby toilet.

After a few hours sleep I woke up feeling much better, but not well enough to head to my treatment. I needed some rest, some tea, and maybe a little toast. I also got some much-needed perspective.

I got a stomach bug and it didn’t land me in the hospital.

I got a stomach bug and it didn’t land me nearly comatose and in need of my husband’s help.

I got a stomach bug and it only lasted through the night, not extra hours or days which usually happens to me when I get an ordinary virus.

I got a stomach bug and like a nearly normal person I could function during and after.

With my immune system there wasn’t much I could have done to avoid getting sick. But when there is something I can do, or you can do, it’s a no brainer. In fact, in some cases I count on you to help me remain healthy. Because this time I was lucky. It was a stomach bug that my body handled. But it won’t always be so easy.

The last time the family was hit with the flu everyone had it for about 24 hours. I had it for a good 72 hours and was watched over by my brother. He held vigil by my bedside as I moaned and sweated the evil illness out of me. Even when I do my best to protect my fragile immune system, bugs get through. I then ended up admitted to the hospital as doctors managed my pain and dehydration, my labwork showing influenza A in my system.

That’s where you come in. That’s where herd immunity comes in. That’s where vaccinations matter. Every type- from a simple flu shot to chicken pox to whopping cough and measles, mumps and rubella.

Liz over at Mom101 has a great reminder as to why we need immunizations and why, here in the states, we take them for granted. You can also contact your Congressperson to ask them to make global vaccinations a priority. No, they wouldn’t have stopped me from getting that stomach bug yesterday, but they do save the lives of millions worldwide who contract many different diseases that can be easily contained if only everyone participated or could be immunized.

As someone with a suppressed immune system I am begging you to take vaccines seriously and to join the effort. Do not take modern science for granted. Remember why we need them and why people like me need you to get them.

Filed Under: #SUCKITLupus, Auto-Immune Menu

Miss Teen PWN

January 30, 2013 by Queen of Spain 6 Comments

I am, by nature, a worrier.

So imagine what I did when this came in the mail:

Do I show her?

I know when I got the really horrible, everyone got one, scams in the mail about modeling or pay-to-see-your-name in some book of smart kids, it was the sort of thing that boosted my tween or teen self-confidence.

Of course there was no way in hell we’d ever let her do it. So there was no harm in showing her, right?

But then again, we always said we’d support her in whatever she wanted to do so…

…no. No. NO. NO.

Also…

NO.

Pageants are for girls who are either desperate for money and can only get it because they are pretty or … or… I have no idea. I mean these things are judged on looks, right?

At least that’s what Sandra Bullock taught me. Well, her and Donald Trump. Walk walk … show them how pretty you are…walk more… show them how pretty you are in different clothes. Walk more. Then answer some crazy question about current events and smile pretty for the boys.

So of course, I showed her and told her what it was all about doing my best to leave my snark behind to genuinely be able to gauge what SHE thought of all this and what SHE thought of a ‘pageant’ … did any of the girls at school do this sort of thing? I mean, we live in a ‘burb of LA, there are many child actors around and at the school and many have headshots and can turn on the cute in order to get a gig. Surely with the popularity of Honey Boo-Boo and Toddlers and Tiaras, there could be a few in her grade, right?

So I showed her and explained and waited for a reaction…

My 7-year old was disturbed by the letter. Grinning and flattered, but disturbed.

Why would they want me for a teen thing? I’m not a teen? And why would I want to do that on a Sunday- that’s when I go horseback riding at the ranch.

Case closed. Whew.

Or so I thought…

What I hadn’t counted on was her brother chiming in. I don’t know why I hadn’t counted on it…he’s always right there with us and NO ONE and I mean NO ONE cares more about his sister than big brother.

Hala, listen to me…I really don’t want you to be famous like that…ok? I’m serious.

Ok Jack, I won’t.

No, really. I mean it. That’s not how you should be famous. You are too smart.

I know I am Jack!

I know you are too.

Suddenly I was the fly on the wall witnessing one of the most touching and amazing exchanging in sibling history.

I wouldn’t do that anyway, ok?

I didn’t say you would. I’m just making sure.

Can you move over now? Because you’re in the way of the game and I can’t see my guy and he’s about to PWN you.

MOM! She just totally blew up my whole new rover I built!

Pauses a beat.

That was kind of cool.

…and all was right with the world.

Filed Under: Count Waffles, Feeling YaYa, kill me now, Princess Peanut, TweetQueen

All That Matters Is That I Will Have Gone to More Colleges Than Sarah Palin

January 25, 2013 by Queen of Spain 10 Comments

My treatments continue. They continue frequently enough that I joke I’m going to move into my rheumatologist’s office during treatment week just to make the commute easier.

All I need is a shower. I mean I’ve got my comfy pillows and blankets. There’s a tv. A fridge. I’m all set!

But as my life continues…as this ‘new normal’ continues…I need more.

Right now, I’ve become healthy enough to wake up, get the kids to school, take myself to treatment, come home, maybe cook dinner if treatment didn’t kick my ass too much, and rinse, lather, repeat.

Non-treatment weeks are better. I can handle some very light housework. Like maybe picking up some toys around the house, a load of laundry here and there. Dinner, dishes. You get the idea. But it all depends on the day. We’re trying some physical therapy, but that too depends on what my body is up to that week. Right now it hates the cold and all the pools are too cold for water therapy. I need a HOT TUB in order to exercise. So I walk the dog, but my doctor doesn’t really want me walking on concrete a ton so Nicky and I don’t go too far. We’re also eating rather well around here. I’m even working with a dietician to try to get these steroid side effects under control.

occasionally I go to a store. I say ‘a’ store because that too is about all I can handle. Well, that’s not entirely true. I could probably push myself and go crazy and run around all damn day but who are we kidding- I tried that and it only landed me admitted to the hospital up the road every few weeks. So while I might be capable of more, I’m limiting myself. Make no mistake, I loathe limiting myself. But I’ve learned I must if I want to live.

But part of learning my limits is also knowing when to expand them ever so slightly.

So as I start my next round of treatment, I will also be starting to close a chapter in my life I’ve been trying to close for twenty years.

TWENTY YEARS.

What many people may not know is that I never finished my degree.

I was one of those interns that interned herself right into a full-time gig. I was on-the-air reporting at 20 and anchoring by the time I was 22.

As a matter of just wanting to finish I tried to go back several times, but work always took over. There ended up being a string of universities and community colleges from Michigan to Ireland to Florida to California where I tried to wrap up what I had started.

Now I find myself disabled, IV in my arm every 2.5 weeks, and needing something more in my life than the endless string of lab results. No really, that’s what I get excited about these days. Lab results. Want to know what my last C-reactive protein was? I can tell you…

I can’t handle much. I can’t type for long, as my fingers cramp up. I can’t physically sit in class, so I have to attend only online courses that allow for me to make my own schedule around the days I’m doing well and the days I’m not doing so great…but I can handle a bit. And by ‘a bit’ I really mean a tiny bit. If I can sit here and read while being pumped full of IVIG, there is no reason I shouldn’t be reading a textbook. That’s my theory anyway.

So as of today, I’m officially, and once again, a student. I’m not much of a student, but I’m a student. 6 whole credit hours. Enrolled as ‘disabled’ which, I won’t lie, hurts a bit emotionally to check that box. But I am a student. Which is a step up from being incapable of getting out of bed, incapable of getting the kids to school, incapable of getting myself to the doctor. Slowly…slowly we’re adding things.

The kids are excited…they want me to do homework with them, at the kitchen table just like they do. I think they envision us all using crayons for projects together which makes me grin.

My husband is laughing, knowing that eventually I will have to leave the local community college online learning for a UC online learning system and he’s DYING at the thought I *might* graduate from someplace like USC (which pains me to type) … having been raised an Irish fan through and through.

My Mom is proud of me. This is a big step for her daughter who was losing organs left and right not too long ago and is now, finally, doing something for herself instead of trying to make sure everyone around her is still OK after the ‘crisis.’

She’s right, of course. Moms are like that. I’ve spent so long trying to get healthy but as the doctors worked to figure out HOW to get me healthy, I worked to make sure everyone around me was ok. That was my only concern. Because no one was ok. We’re still not OK. We’re adjusting. And I finally had to take a step back and realize we’re never going to be ok until I learn to make myself whole…to make myself happy…to make myself ME first.

I’m headed down that road now. And I couldn’t start down that path until the doctors figured out how to stabilize me. To make sure my organs were safe. To convince me I wasn’t going anywhere, that this was under control, relatively speaking, and life could move forward.

Life can move forward now.

For me. It’s going to move slowly, but it’s going to move. It’s going to move differently than it did before. I have to feed my mind. I have to do more than fret and hand-wring. There are going to be ups and downs with this and I am learning to build those ups and downs into my life plan. From my long-term life plan to my daily life plan. I’ve done all I can to try to take care of the kids, of my husband, of my family. I have done very little to take care of me.

That seems strange to write when all of this ‘crisis’ has been about me. Me. Me. Always about me. But trust me, in my head it’s been nothing but what it’s done to everyone else. What I have done to everyone else. What I continue to do.

So the next chapter starts as the others come to a close. With doctors having found a plan…finally. Finally after years we have a plan that appears to be working. Slowly. Very slowly. But working. With those I love doing what they need to do as life goes on. And with my stubborn self having learned limits, a bit of patience, a ton of self-control, and a new way of operating as a woman, wife, and mother with a chronic illness.

Scratch that…as a woman, wife, mother, and student with a chronic illness. Hopefully we’ll add graduate to that list this time around.

Filed Under: #SUCKITLupus, Auto-Immune Menu, Stepford Crazies

A President, Dr. King, and My High School: Forward

January 21, 2013 by Queen of Spain 2 Comments

Long ago, back when microwaves were new and we still used VHS tapes, I spent many long afternoons in the Journalism room at my old high school in St. Clair Shores, Michigan. During one of those late nights when we were rushing to get the school newspaper together (times I still think about and cherish more than any grown woman really should) I wrote an article arguing Martin Luther King Day should be celebrated by my high school.

At the time South Lake High did not recognize the holiday and if you were lucky one of your teachers might make you do a worksheet about Dr. King’s life…but I honestly don’t remember ever even doing that much.

We were a predominantly white school. Detroit was literally across the railroad tracks. You would never have known it was a holiday, or even an important day in history if you walked our halls in late January. Yet all around us Dr. King’s legacy was being honored…but no, not here. It was just another day in privileged suburbia.

My article was printed in the January edition of the Lancer and there were some who just thought I was asking for the day off. Of course had they read the damn thing they would note I advocated there to be LEARNING behind our acknowledgement of the holiday…yes, the angst filled teen in me lives on.

2013.

It has been 20 years since I graduated and I’m told there is no school on Monday.

I had to confirm the news with people back home. I’m still not entirely sure I believe it…but there is more. And it is making the inauguration of President Obama and the MLK celebrations that much sweeter.

South Lake will be hosting the annual Martin Luther King Day Celebration with the Youth Diversity Council and the Michigan Roundtable for Diversity and Inclusion. My child hood friend and fellow alum Edward Cardenas writes,

The event will honor the work Dr. Martin Luther King with a local flavor including the viewing of a student-produced video and presentation of a community quilt. The quilt, was the idea of South Lake Principal Carmen Kennedy, who is also the event’s keynote speaker.

Twenty years and I am finally seeing an amazing change. The celebration of Dr. King’s legacy at my high school…where what once was our all white and privileged hallways didn’t bat an eyelash as his birthday passed. A Youth Diversity Council! Just learning of this (which I understand has been going on for a while now) had me grinning ear to ear.

Yes, the demographics have changed as have the times but we have moved forward. And we continue to move forward as a nation. I’m not sure if the President knew just how appropriate that slogan was when he and his campaign asked the people for a second term.

That, just like my old high school, our nation must move forward and we must finish what we started.

FORWARD, hope, change…those were just a few of the reasons my children and I attended the Democratic National Convention to see the President speak and accept his party’s, OUR party’s, nomination for a second term.

So as the nation watches the President take the oath of office, I will be thinking of how much has changed since those days twenty years ago. And sadly, how much has not changed.

I will savor the good that has come of President Obama’s first term and prepare for the hard work that must continue in his second. I will think of the articles my children may write in high school, and how they will differ from my own in the hopes their battles are somehow not as profound, not as landmark. Yet I know each generation will have their challenges. Although that is almost the beauty of all of this really as we watch history unfold.

With the change we have already seen, and the hope of four more years…I have no doubt we will continue to move forward.

Together.

Filed Under: Feeling YaYa, Obama '08, Obama2012

The Power of One

January 16, 2013 by Queen of Spain 14 Comments

I’ve been careful about leaving the news on while the kids are home. With the school shooting and other tragedies, it’s just been too much for them to see.

So imagine my surprise last night when a piece I thought was rather benign on the pollution issues in Beijing caused tears and hysterics in my living room.

My 9-year old son could not believe what he was seeing. He wanted to know how the earth could be so dirty and polluted and how we, as humans, could let this happen.

Is it the cars?
The factories?
All the things they make, like my Nerf guns?
Why don’t they care?
Why can’t they stop it?
What if that happens here in Los Angeles?
What about our country?
Why do businesses care more about money than fixing this?
Why isn’t ANYONE DOING ANYTHING?

And the tears were streaming. And I did my best to calm him down and tell him many people were trying to do things, but every country was different. And every country had different rules. And even in our country people are fighting those rules.

He thinks those of you fighting the rules are horrible people. He thinks anyone against EPA regulations aimed at helping the earth are good and true and just and he does not care if that means some people don’t have a job because they at least will be able to breathe and drink clean water. He tells me OTHER jobs can be created with new inventions that keep the planet CLEAN. He does not care if that means he does not get a certain toy, he no longer needs it or cares.

The images haunted him all day and night and he would periodically stop his video game to ask me how many people might get sick from that smog. How many people might die. How plants or trees might help.

Then at bedtime, as I tucked him in…he began to softly cry again. He didn’t think there was anything a 9-year old boy could do.

I told him he was wrong.

And now, dear friends, I want to show him he’s wrong.

Help me find things a 9-year old boy can do to help – from planting trees to raising money to joining Greenpeace to… whatever.

Show my son he can make a difference. Show him the power of one and how it then multiplies and creates a movement.

I KNOW there are others like him…others that are devastated to see pollution take over what he calls ‘those mountains that are so so beautiful I can’t even see them’ and ‘all those trees that they keep cutting down instead of letting grow big and tall…it makes me so mad Mom I just want to hit my pillow.’

Show him. Show him instead of hitting his pillow he can DO SOMETHING and it WILL MATTER.

Help me show him – leave a comment with your ideas. Please.

I know he can do something amazing with his passion and his talent.

Filed Under: Count Waffles, Feeling YaYa, Stepford Crazies

The Auto-Immune Menu of Love: Vasculitis

January 10, 2013 by Queen of Spain 6 Comments

I get asked A LOT what it is like to live with Lupus.

How does it feel? What does it mean when I can’t fly or I can’t walk an amusement park or a mall (why not?) – or why it hurts so much more in the morning or why some drugs seem to work and others don’t. Why some weeks seem great and you are near remission and then suddenly you are back in the hospital…you get the idea.

So I thought every so often I would do my best to walk you through one little special something* I am dealing with physically. Teach you, show you, do what I can to share my own unique experience in the hopes it might help someone else. Or, at the very least, help others know they are not the only ones out there suffering and dealing with this crap.

Today I thought I’d tackle the reason we couldn’t have Christmas in North Carolina as planned. It’s a well-known ‘thing’ that auto-immune diseases tend to flare up at the worst possible moments. No really. It’s some odd, scientific, auto-immune fact. As you can imagine, our Christmas party was a bit ruined. Cousins were let down and everyone had to just shrug and say things like ‘well, that’s just how it goes.’

So how DID it go THIS time around (because trust me, this is just one of a thousand scenarios)?

Vasculitis.

One of the many reasons I couldn’t (and still can not) get on a plane is because both of my legs are suffering from this ailment along with a host of a million other things Vasculitis brings.

So what happens? With me my feet and legs basically swell up so badly I get bruises, red stretch marks, and my skin actually breaks and I bleed. Yes, it’s THAT bad. Here, let me show you:

Keep in mind I took this photo this week, well after the really nasty part had subsided around Christmas Day.

My particular auto-immune issues cause inflammation ALL OVER my body. It’s been in my gut, on my brain, my spine, that whole reproductive area that is now gone…anywhere and everywhere. Kidneys, liver, and of course the biggest organ of all… my skin.

My doctor has never told me I ‘couldn’t’ go anywhere due to my disability because he firmly believes the emotional and mental lift from being able to occasionally see family or friends helps me more than any drug and outweighs the risk. That is until now.

He said if I were to get on a plane with these issues, he would be basically writing me a prescription for a blood clot.

Those are bad.

I was told to put my feet up, stay off my feet, and to basically ‘rest’ as best I could (I’m sorry but I really hate that…I mean ALL I DO IS REST DAMMIT) while making sure Santa and his elves had fun.

We’re now into January and my ankles and legs are better, but not entirely recovered. Ok so they look like tree stumps with bruises and red splotches. I’m such a sexy beast.

But hey, I can walk on them now…where as before it HURT to go up and down stairs, make myself a cup of tea, shower, you know…move. Yes, things are much better. But I would recommend you steer clear of Vasculitis if you can.

That being said, it just sort of comes along with the auto-immune menu of love…and now you know a bit more about my daily life.

*that special something could be ANYTHING related to auto-immune information. I am not a doctor, I do not claim to know a damn thing about any of this other than WHAT I AM EXPERIENCING – so please, do not take anything I say as health advice, or even slightly competent advice…talk to YOUR doctor, talk to a licensed medical professional…this is just ME and if there is one thing I have learned with my illness, it’s that I am not normal.

Filed Under: #SUCKITLupus, Auto-Immune Menu

The Chicken Came Before the Egg

January 8, 2013 by Queen of Spain 7 Comments

I’ve been spending many days and nights around here researching ways to get this body of mine back into tip-top shape…and I’ve come to only one answer in defeating Lupus:

Chickens.

Somewhere in Santa Monica, at a nice desk near the ocean, my husband just laid his sweet head down on his keyboard and is wondering when the sweet relief of death will come save him from this life of marriage to this crazy lady.

Now hear me out just a minute or three here. Or go read something else, I don’t really care.

I want the best possible food to go into the bodies of the people who live in this house. Heck, even those of you that just visit. Eggs are a great source of protein- which the doctor says I need A LOT of. The doctor also wants to see almost NO processed food, no chemicals, no dyes, no … well, nothing.

Now, shopping organic and finding recipes and all that fun grocery love is all well and good. But it sure is missing that certain…JAZZ HANDS quality. The one that makes me want to leap out of bed (and mark these words- I WILL LEAP OUT OF BED SOMEDAY) and get a great and healthy breakfast going for the family and myself. You know, after I have already worked out during sunrise and walked the dog and packed lunches and sat quietly with my tea and book, awaiting the husband and children to come downstairs from their slumber.

Yes, THAT Is how I plan on starting my life over once my body cooperates. Early morning exercise! Nothing but fresh, home cooked food! Total organization!

And where does it all start? The chicken, or the egg?

THE CHICKEN OF COURSE!

Which means I want a chicken coop and chickens. But I’d like the magical kind that get along with my dog as though they are best friends and have zero nasty stink …oh, and clean up after themselves.

See…I already have the cute ranch hand:

So really I would just like cute, fluffy, egg producers in my yard that cause zero issues and require zero care. OH…and the home owner’s association won’t mind or notice.

My daughter would be so so so happy if we got chickens. My son will freak out initially but only for about two minutes. Then he will freak out about all the other animals around who might hurt the chickens and then we’ll have to fortify the chicken coop with military grade fencing. But THEN it will be ok.

The point is. I want fresh eggs. I want fresh air. I want clean water. I want food that does not come out of a box. I want the chemicals OUT of the systems of my family (and your family’s systems too) and I want us all to live like we were meant to live: naturally.

Well, naturally within reason. I still need some take-out here and there and a good mani/pedi.

I’m not saying let’s start a commune in my very tiny backyard or anything (although that’s another idea I have for when this whole chicken thing doesn’t pan out) I’m just saying I think half of the reason my body is not fighting as hard as I want it to fight against this disease is a lifetime of food-flavored food being shoveled into my system. No really…FOOD-FLAVORED FOOD instead of fruits and veggies and meat that has no FAKE ingredients hidden inside.

We’re trying things out over here. It’s not easy. We like our junk food and we like our packaged food – but we are working on buying the cans of veggies with organic stuff inside and totally LESS sodium and with NONE of the things on the label we can’t pronounce. Or that Count Waffles CAN pronounce but he heard it on ‘How the Universe Works.’

Back to the chickens.

Who wants to buy me a chicken coop, chickens, and then come take care of them for me? I just want to pet them and eat their eggs.

Also…if the HOA asks, we got a TENT and that noise is simply our silly dog Nicky doing his new IMPRESSION of a chicken. We’re training him to be a Hollywood dog.

Totally plausible. We live in LA.

Filed Under: #SUCKITLupus, Hippo Diet, Kaiser, kill me now, Stepford Crazies

…And Some of You Just Eat Chicken Soup

January 6, 2013 by Queen of Spain 3 Comments

I just want to get a cold like a normal person.

I want my husband to be annoyed I whined and whined until he said ‘FINE’ and picked up yet more tissues AND more chicken noodle soup, even though clearly all I have is a COLD and I can go get them my own damn self.

All I do have is a cold. I CAN go get things my own damn self.

But then again, I can’t.

My doctors did not even want me in urgent care- too many germs. The ER? Hell no…WAAAAAAY too many germs.

Despite me feeling strong and despite my overall health improving greatly- my immune system needs to be destroyed every so often so they can rebuild it stronger, better, bigger, more advanced….we have the technology! (Did I mention it’s 3:23am and I haven’t slept in days thanks to steroids and new drugs to take care of this cold/virus/thingy?)

Anyway, this time around our timing was off and that miscalculation has cost me dearly. Imagine being the ONLY ONE in the house – where elementary school children live – who gets PINK EYE.

In other words, if it’s going around you can BET I will be catching it. Leaving me in this horrible position of feeling strong enough to maybe help out around the house a bit….throw in a load of laundry, pick up some toys, disinfect that tea-cup I touched. However, every time I use energy I sacrifice precious healing power.

My cold, of course, caused a nice ear, nose, and throat infection which got into my chest and caused a nice upper respiratory infection which they either like to call ‘walking pneumonia’ to scare you or I now have walking pneumonia. But I’ve had that shot (flu and the pneumonia one) and at the first sign of any issues I get a nice bed at Henry Mayo Newhall Memorial up the road.

But you see how all of this just started with me having a cold? One normal, stupid, booger filled, run-of-the-mill cold?

Kids are on edge worried I’ll land up that road in that bed. Husband is taking it well, knowing we’re only at ‘Defcon 1’ as it was dubbed tonight.

I’m on oodles of antibiotics and for the first time in two years I feel like I JUST HAVE A COLD.

STAND DOWN PEOPLE.

But Lupus is a cruel bitch that way. Auto-immune disorders are all sneaky sirens. They have you believe you just have a typical runny nose and cough and !BAM! suddenly you are occupying that bed up the road as they work to get the infection out of your lungs instead sitting on the couch in your pj’s playing new video games Santa brought.

So I will keep taking these antibiotics and resting on my couch. I have a date with a nine-year old to play some video games this morning.

Then later today this seven-year old and I have a rematch:

And if the stars align, this hot stud and I will do some quality napping just to make sure EVERYONE stays healthy…

It beats that bed up the road by far. That stuffy place doesn’t even let my youngest come in…

All for a cold.

Filed Under: #SUCKITLupus, Feeling YaYa, Stepford Crazies