Stepford Crazies

12

March 28, 2015 by Queen of Spain 9 Comments

It’s that time of year again…where I get all teary eyed and brag about my children endlessly. That’s what you get when both your kids are born in the same month…

I’ve always thought he was a wise old soul. Now I’m certain.

My first born turned 12 this past week and I’m still working through the emotions wrapped around just another number yet anything but another year-in-the-life.

12. 12. Never mind where years 1,2, 3, 4-11 went, I want to know how he managed to become, very honestly, one of the most compassionate and amazing humans to walk the earth.

I know, I sound like every Mom. Convinced entirely their child is the greatest and better at everything than any other child ever was.

Except, I know better.

I know my son struggles with many things, not the least of which is a mother with a chronic illness. He struggles with his own illness as well, Obsessive Compulsive Disorder. Though mild it’s enough where people who don’t spend much time with our family notice and some even dare to poke fun. Something I notice and get my mom claws out immediately over, but something my son brushes off and even questions, as they clearly do not understand his higher intelligence and he feels genuinely sorry for them. No really, this is how these conversations go. He has sympathy that this child or adult hasn’t met anyone like him and doesn’t know enough about the world to have even learned there are people who are different. He wants to educate them and gets simultaneously upset at their upbringing and the world and our culture because some people can be so sheltered, mean, or uneducated.

You would think a tween headed into the teen years would want to just blend in, especially one already dealing with OCD and yes, a higher intelligence than his peers. But, no…not our child.

His hair is currently longer than my own with a bright red streak on one side. When he is mistaken for a girl he asks the person if they have ‘gender’ issues. He’s not being rude, or trying to start anything…he truly wants to know if they have gender issues and why they can’t fathom a male with long hair. He sees the world very clearly and gender does not come into play when it comes to hair length.

This is all entirely logical to him and not even slightly malicious. Far from it. He wants to understand. He wants you to understand and he wants to understand you.

I feel as though this past year he has matured so very much I can’t help but wonder in awe at his accomplishments and just the way he carries himself.

He wants to go to M.I.T.

While he understands science and physics and has the periodic table of elements in a frame over his bed, he spent much of his school days struggling with math. But he understood completely if he wanted to get into M.I.T. one day, he would need to be good at math.

He wants to do large equations like Sheldon on the Big Bang Theory…complete with a big ‘ol white board for his bedroom.

So, in his very own way, he spent much of his first year of middle school melting down and incredibly emotional over what he thought was his inability to grasp whatever math lesson was being taught. And in his very own way once again he decided it just wouldn’t do anymore and flipped that switch off, turning on a new one, bringing home extra credit work and practice in order to understand the math he swore he didn’t understand.

Just as soon as his emotions calmed, the math would be finished in a second flat. He would remark how easy it was and move on to his video game.

I’m not suggesting it’s remarkable my child fulfilled his math duties as a 6th grader, but what I am suggesting is that at the tender age of 11 he realized he had a goal that was another lifetime away and began working towards it full force and this is the kicker…without prodding from his father, without pushing from me.

That is the old soul in him. The one who can see beyond the immediate gratification of a reward for an ‘A’ or the back patting from Mom and Dad.

He’s going to be a scientist. He’s going to retrieve the rovers from Mars. He’s going to cure Lupus. He’s going to do everything he says he will do, because I’ve watched him simply change his mind to make it so.

And while all of those goals are great, nothing makes me more proud than when he is simply Jack.

The kid who still saves half a cupcake if there is a birthday in class because he knows his sister will love the frosting.

The kid who used his own birthday money to buy another fedora for a boy at his birthday party after some kids at school threw the original, used as the goodie bag to hold candy for his guests, over a wall on a walk during P.E. Without me asking. Without me offering. Without it even being an idea in my mind at the time…just said, “Mom, I need to buy him another one…those kids were jerks for doing that and I told them so.”

Entirely unafraid to stand up to the “athletic” kids as he calls them and entirely determined the world will be fair on his watch.

Another thing I adore about him…his ability to feel so deeply for others to the point of tears while watching the news. No, he doesn’t want me to turn it off. He wants to learn more. Even if it upsets him.

At first I thought maybe he just needed to try and understand why evil exists. He wanted to keep watching so he could have some explanation for his always moving mind.

But then I realized that was only part of why he wanted to keep watching, despite feeling such empathy he was in physical pain and emotional distress. He wanted to keep watching because he needs to know everything about the problem in order to fix the problem.

His brain is constantly coming up with new ideas on how to make planes safer, how to end racism, how to feed the hungry and house the homeless. He is tremendously upset by injustice and disgusted by bigotry.

It could be 1 in the afternoon and we’ve just finished watching a Disney movie and he will suddenly begin a monologue on how he’s almost figured out how to get the cells in my immune system to behave normally but he needs to know more about immunoglobulin so he might look that up tonight in bed, but not until after he finishes a documentary he was watching on string theory and that one video he wants to see that can show him how to level up in the game he’s playing with a glitch this guy found.

At least there was some time in there to be a typical boy. I think.

Yes, I worry that he worries too much. A 12-year old should be climbing trees and riding his bike and squeaking in that prepubescent way, not wondering how he can stop climate change and cure cancer.

But never fear, he is also every inch of a 12-year old boy that you would expect combined with a wise old man. A wise soul filled with so much love it hurts us both at times. He’s even shown he has the heart of a writer and poet…something I wasn’t expecting with his usual scientific mind.

I’m beyond proud of the man he is becoming and wish I could stop time to let him enjoy his childhood a bit longer. But something tells me that just is not how he wants things to go. He wants to accomplish so many thing and understands he needs to grow and age in order to do these things.

Just that he understands this, astonishes me. But I don’t know why I’m surprised, he’s been showing me this part of himself his entire life. And it’s a life I’m damn proud of.

Happy Birthday Jackson.

Filed Under: Feeling YaYa, Stepford Crazies

The (Digital) Kids Are Alright

March 16, 2015 by Queen of Spain 4 Comments

I really think you need to suck it up and realize what was normal for US as kids is not normal for OUR kids.

Sure, get fresh air, get exercise, go play outside…but let’s face it, when it comes to ‘play a game’ or ‘read a book’ all of that is now done digitally.

Yup, that means their iPads or their computers or their phones…ONLINE.

I was recently reading a few posts about bloggers limiting screen time, not even allowing their kids any screen time and even some who refuse to allow their children to play any games at all or use any ‘smart’ devices.

Not to start another Mommy war but… are you TRYING to handicap your child? You do realize the world is a very different place than the one we grew up in and certainly WORLDS away from the one our parents grew up in- meaning just about everything is digital these days.

My kids research their homework using their iPads. My kids play with the their friends in virtual worlds like Animal Jam and Club Penguin. My son meets up with his buddies in Destiny and Borderlands. That’s social and educational.

Their projects in school are in minecraft and contain websites with links to their homemade videos. They link to their sources instead of write them down. They dictate their essays and email their teachers.

They know more about cyberbullying than kickball and can rattle off more youtube video makers than actors in Hollywood.

I’m entirely ok with all of this. So is their Dad.

Go on, hate away. But my kids are learning to do all of the things we learned to do, just throw in code and type at a much younger age. Yes, they pilot drones and use google maps to make sure our roof isn’t hiding any wayward frisbees…and yes, they stare at a screen as much as they like. It doesn’t mean they aren’t learning and it doesn’t mean they don’t get any exercise.

It just means times have changed and the book they are reading is stored on their iPad and the homework they are doing requires they watch a video embedded on the Smithsonian website.

Then to relax they put on their headphones and mics and have a virtual playdate with their buddies across town I can’t drive them to anyway because dinner is nearly ready.

So do your kids a favor…lay off the strict rules and timers when it comes to their gaming consoles and phones and tablets and computers. Think of it as your parents forcing you to shut off your radio or your walkman or putting away your TeenBeat or your D&D game. Actually, it’s more like them making you come in from outside instead of creating that imaginary game with the neighborhood kids…because that’s exactly what our kids are doing with their friends, it’s just their imaginary worlds are way more colorful and their costumes are super cool.

Filed Under: #suckit, Feeling YaYa, Stepford Crazies

God in my Grilled Cheese

March 3, 2015 by Queen of Spain 9 Comments

I think I have a twisted relationship with the chaplain at Henry Mayo, the hospital where I’ve found myself too many times in the past 3 months and where I find myself in bed and typing this blog post.

Ok, so it’s probably just a very twisted relationship on my part…although NOW I think he’s in on it, maybe. Maybe it’s wrong to call it a “relationship,” but more of a really screwed up game of mental chess we have going on.

Hang on, let me back up.

You see way back on one of my very first stays here long ago in 1999 or 2000, before Lupus and babies and our entire life in this valley, they asked me in the ER if I had a religious preference.

Catholic, I guess?

When you are sick and in pain you really don’t want to debate your entire existential breakdown with some stranger and say “atheist” or “agnostic” and get that look.

Oh come on, every NONChristian knows entirely what I’m talking about here. The look where if you say you answer that with anything other than Christian you get prompting the questioners want of some sort of explanation. See, many of you know what I’m talking about. Especially in the town where I live.

So I made a quick decision to say “Catholic” and it’s followed me through what must be dozens of stays and the birth of our two children at this hospital.

Sometime back a few hospital stays ago (how sad is that?) a parade of chaplains visited me. I have no idea why. I have no idea what list I landed on…the ‘has requested ministry’ list or what, but when the Catholic priest finally came in we got to chatting. I may not be religious, but I’m not rude. And I enjoy discussing religion.

Well it took this priest all of 3 seconds to realize this lapsed Catholic wasn’t getting communion. Let me rephrase that, even if I wanted communion, he wasn’t giving it to me. He refused me communion.

“You will need to attend Mass, of course. And before I can administer (administer? is it a drug?) communion you will need to go to confession.”

No really. He was hard-core, old school and there was no way I was getting out of this without several Hail Mary’s, a good smack on my knuckles with a ruler and there was certainly no way he could be bought off with a few beers at the Friday Night Fish Fry.

The Catholics in the house are following me, the rest of you will catch up shortly.

The next visit I had more of the clergy on parade. Seriously, I’m on A LIST OR SOMETHING. This time very nice prayers were said for me and I had a chuckle about once again knowing I wouldn’t take communion but wondering if I would be offered. (For the record only one of the chaplains offered)

So of course during this stay, I expected to be visited by a chaplain on my first day. But Saturday went by and no visit. Sunday went by and again, no visit. I wondered if maybe, just maybe, Henry Mayo had gotten my survey card and I was finally listed as “no preference” under religion.

Leading up to today, I’ve been admittedly been getting nostalgic for the traditions of my youth as my daughter is doing what every 4th grader in California MUST do: the Mission Project.

As my youngest was putting together her styrofoam Santa Barbara Mission I was thinking about how I still carry a rosary out of habit and superstition. How religious my Aunt was and how she rarely missed Mass. How I can remember Easter Sunday Mass in Florida with my Mom and her sister, so excited to show off my new bonnet and pretty dress, clutching my “children’s rosary” with white gloves.

Both of my Aunts, along with my grandfather, recently passed away, also focusing my attention on the afterlife. Throw in my illness and you have the makings of Erin oddly contemplating lighting a candle for her ailing body the next time she passes a Catholic church.

Additionally, I’ve been taking a liking to the new Pope. Well, as far as Pope’s go.

Facebooking recent news headlines. Going so far as to finding the Vatican’s gift shop online and having an Ave Maria medal, blessed by Pope Francis, sent from Rome to California. I told myself because the Schubert version was sung at my wedding this was entirely justified and I was just being superstitious.

But back to my current stay here at Hotel Henry Mayo.

Monday arrives and with it a hope my test results will come in and I will be discharged to go home. No such luck.

My UCLA based doctor arrived just before lunch, and after having nothing but liquids and then ‘soft and bland’ food for two days I was excited because GRILLED CHEESE was ordered for my lunch. GRILLED CHEESE PEOPLE!!!! I am not sure I’ve ever been so excited about a damn sandwich in my life.

Sure enough just as my lunch arrived, the doctor made the decision to hold all food and water, IV fluids only, in order to run a test. Because…of course.

Off in the wings, waiting to say hello and witnessing the conversation, was none other than the Catholic chaplain. Oh sure NOW he shows. Just in time to see my defeat after handing me the “get your ass to confession you Jezebel.” I am also positive he saw my face sink as my lunch tray was being sent out the door.

Point Team Chaplain.

The doctor went off to make arrangements for the test. He was going to push to get it done that afternoon. But if he couldn’t get it done until Tuesday morning, I’d be able to have lunch. Tough call. I want to eat in front of the chaplain, but I want to go home more. What to root for… what to root for…

“Hello again, Mrs. Kotecki Vest. I’m so sorry to see you back here again. But God does have a plan.”

Yeah, a plan to steal my goddamn grilled cheese right from under my nose…doesn’t he have better things to do?

Me, nodding, but smiling and immediately wondering if he will remember he WILL NOT give me communion because I’m a bad Catholic who needs to go to confession and tell the Priest about her lusting for LL Cool J and thinking many other impure thoughts.

“Would you like communion today?”

Is he kidding? Seriously? Is this a sick joke? Did Father Thou Shall Not Ever Have Communion Again just half offer me communion? Contemplates taking him up on it because a) it’s FOOD and b) I want to call his bluff. I know he knows who I am.*

*Makes mental note to confess I’m playing communion poker with a priest.

“Oh wait, I guess you can’t have anything at all by mouth, not even communion. Hahahaha, I’m so sorry.”

Did that asshole just laugh MANIACALLY at my not yet born food pangs? Ok now I’m MUST be imaging this. I’m in a battle of communion with the chaplain at a hospital… I’m seriously losing it. I’ve had too many drugs.

“Would you mind if I said a prayer for you today?”

“Of course not. Thank you,” I say with an evil smile.

Bring it.

“In fact, I’d like to start with not a prayer, but just a little something I want to read to you. I think it will open our minds to the spirituality and prepare us for prayer.”

Ok, now I’m certain he’s screwing with me. He has to be. ‘Open my mind for prayer’ with a pre-prayer? Do people do this? When was my last pain shot? He has to remember me and he’s making up for it by giving me extra time or he’s doing it to torture me? WHAT IS HAPPENING???

Father-I-still-don’t-know-his-name proceeds to open a book and flip through about 600 pages until he finds what he’s looking for. I swear this quiet process, during which I dared not say a word thinking he was going bust into the pre-party at any moment, took a good, full minute.

“…and to be charitable to those not like us, be they from other lands or of bodies unable…help us Lord…”

Dramatic pause.

“…help us Lord to remember we are all one. We are all the same in the eyes of God…”

Ok, this is kinda nice. He’s talking a very sweet Imagine all the People John Lennon vibe. I can get behind this.

“And now, I want to read a special prayer for you Mrs. Kotecki Vest…”

…and out comes a clipboard with printed pages of which he flips through, not finding what he’s looking for. He goes back to his big book, flips, flips, still not finding the prayer. The SPECIAL prayer for ME. And then he literally pulls a tiny pocket book of prayers from his BACK POCKET and says, “yes, I think this one…yes, yes.”

And it begins…but I don’t remember a single thing he is speaking, special for me, because in walks the cafeteria woman with my lunch tray and she stands behind him quietly, waiting for him to finish.

Wait? Am I getting my grilled cheese? Really? Hang on, she’s a different woman who the doctor sent out…she doesn’t know I can’t eat that grilled cheese. That sweet, savory, comfort food grilled cheese!!!! DAMN!!!! She’s just back there teasing me!

The chaplain notices the woman with the tray behind him, along with the now nurse coming in…and hastens his reading pace a bit.

I haven’t heard a word of this prayer and I feel guilty now. THANKS Catholic upbringing! But i’m pushing the guilt out of my head and am focusing on the grilled cheese. Is it mine? Will it BE mine?

Even the cafeteria woman and my nurse are now shifting uncomfortably behind him at this point. It’s like the sense a stand off, and they know I am looking at the tray like it’s my prey and the chaplain an animal I must defeat in order to eat.

“…in the name of the Father, and of the son, and of the holy spirit…Amen.”

Sweet Jesus FINALLY!

“I’m sorry, I don’t think I can have that…”

The cafeteria woman looks at the nurse who says, “Oh that’s right, the doctor was putting in your test orders…I’m sorry, let me go and check what time the test was scheduled.”

…and out the tray goes through the door again…

I jokingly say to the Chaplain, “Now had you gotten my grilled cheese back with that prayer you just might have a shot at getting me back to Mass!”

Point Team Flying Spaghetti Monster.

…and in walks the tray again, with my doctor behind it.

“I wasn’t able to get your test until morning. So you can eat until midnight. Enjoy your lunch.”

Devilish grin creeps over the Chaplain’s face.

Point Team Chaplain.

We both laugh.

“I guess that also means you can have communion now,” he says with a raised eyebrow.

Is he doing this to me? Is he REALLY doing this to me????

“Thank you, but I don’t think I’m ready for that yet. But I appreciated the prayers.”

Point Team Flying Spaghetti Monster.

Still laughing I sit down to my grilled cheese and eat and text my husband, as I haven’t had a chance to tell him what the doctor said and if I’m coming home yet (I’m not) and all about the test and my nearly lost and then found, Amazing Grace of a grilled cheese.

Just after I text the line: “God brought my grilled cheese…”
He replies: “Karma. I made one earlier.”

Point Team Chaplain. Bastard!*

*Makes mental note to confess I called a Chaplain a bastard…in my head, but still.

A few hours pass and I convince myself it was all just silliness. Silliness and enough narcotics to take down a large mamma elephant.

Then my son and husband arrive.

“Count Waffles! Did anything significant happen on the way over you want to tell your Mom about?”

Oh boy, here we go…What did they do on the way from school to here?

“Oh, we went to Michael’s and got some stuff.”

Okkkkaaayyyyyy.

“Did anything MORE significant or miraculous happen?”

Seriously? Did he just say that?

“Ummm…oh we went to Cost Plus too and we found cool Mexican Sprite bottles. We’re going to make lights out of them!”

Okkkayyyy…I don’t get it, but that explains the Michael’s trip.

“Jack! Did anything even more triple miraculous than THAT happen on the way here??”

What.The.Hell.

“OH OH OH! We saw a TRIPLE RAINBOW!!!!!”*

Game. Set. Match. Team Chaplain.

*Makes mental note to confess she called a chaplain an MFer in her head.

We need to make sure when I’m allowed food again, it’s spaghetti and meatballs.

Filed Under: #SUCKITLupus, Stepford Crazies

Ashes

February 19, 2015 by Queen of Spain Leave a Comment

I’ve been swearing like a sailor lately. For no other reason than the kids are a bit older and they know not only what each cuss word means, but that they aren’t allowed to use them (unless on the family bed or to ask questions or…well, under circumstances we’ve agreed upon as a family).

I’ve also discovered how much I missed cherry blow pops and rock candy and the sugar from candy has essentially made up the bulk of my diet for the past year.

When you are feeling sorry for yourself you can come up with a million reasons why one more lollipop is entirely deserved after the crap-deck you’ve been dealt. And in the absence of a good hug or your hand held, a lollipop is better than a balanced lunch. Throw in a few swear words while your knees buckle and your body aches and well…here we are.

So I’m evoking my right as a recovering Catholic to give up swearing and candy for Lent. I figure I need to start somewhere and Lent has always been a fantastic excuse.

I didn’t get off to the best of starts. On this first day of Lent I had a grande chai tea latte with coconut milk for breakfast. Thai coconut soup for lunch. A few fat-free devil’s food cake cookies and london broil and asparagus for dinner. Oh, and about 2 ice teas and a Coke. Normally I don’t drink pop very often, so I know that won’t be an issue but tea… tea is another story. Why can’t they make a water that takes like tea?

The worst part of all of this? Cushing’s Syndrome.

It won’t make a damn bit of difference if I eat candy all day or if I eat carrots. Cushing’s.

Which leads me to evoke my recovering Catholic status yet again and fall back on old superstitions like medals from saints and rosary beads in my purse and even an Ave Maria pendent blessed by the new Pope.

Why?

Because I’m somewhere between having lost my mind and am entirely stir crazy fighting this battle.

Yes, there is hope. Yes, things are progressing. Yes, the new medication seems to be helping…we think.

But I think after 4 hospital stays in the past .. what…. 8 weeks? It isn’t too much to just ask for a little bit of peace. Of hope. Of yes, solace and safety and love.

I’m tired. So tired of all of it. I can see light at the end of the tunnel but the tunnel is so damn far away.

Yeah, I said damn. Chalk up another quarter to the swear jar. Good thing I’m just a recovering Catholic or I’d have to go to confession.

Filed Under: #SUCKITLupus, Stepford Crazies

The Fairy Godmother and My Glass Slipper?

January 27, 2015 by Queen of Spain 11 Comments

This has been siting on my desk, or shelf, or wherever in our bedroom for about three or four years now. Maybe two. I’ve lost track. Let’s just say it’s been around long enough to gather a ton of dust.

It’s one of my favorite Disney quotes and one of my most hated. I’m a complicated woman like that. You know, the atheist that is currently wearing an Ave Maria medal blessed by Pope Francis. That’s just how I roll when it comes to faith and miracles.

The entire quote/scene might help you a bit more:

“…Cinderella: The ball? Oh, but I’m not…

Fairy Godmother: Of course you are. But we’ll have to hurry, because even miracles take a little time.

Cinderella: Miracles?

Fairy Godmother: Watch. What in the world did I do with that magic wand? I was sure I…

Cinderella: Magic wand?

Fairy Godmother: That’s strange I always…

Cinderella: Why then, you must be… Fairy Godmother: Your Fairy Godmother?

Fairy Godmother: Of course. Where is that wand? I forgot…”

This entire scene comes as a crisis of faith for our poor Cinderella. Now mind you, Cinderella is not one of my favorite princesses. No offense. It was just never the story that stirred me much. I didn’t have sisters, let alone step-sisters to relate. My parents didn’t make me clean much more than my room.

Admittedly I would pretend my oatmeal was gruel and animals talked to me. But that was a skill a child could apply to any princess situation. Or little orphan Annie or wicked Queen has me locked up or Jabba the Hut has me locked up or … you get the idea.

But that scene, the magical one where Cinderella is transformed, THAT part was always fun. And it comes just after our scatterbrained Fairy Godmother finds that wand.

During one weak moment, ok a few hundred weak moments, when feeling like my life has been robbed from me, the snow globe and quote gave me a reminder that maybe, just maybe, a miracle would happen to me.

I don’t, particularly, deserve one in the grand scheme of things. Or need it.

Technically I’m not suffering from a terminal illness. So many others are. They need miracles.

I have a supportive family, even if they have suffered more than I have through this with their worry and fears.

I have a roof over my head, food in my stomach, and despite three hospital stays in the past however many weeks, they have been for, mostly, the luxury of making me comfortable. So while I may beg and plead with whatever entity I’m feeling aligned with that day to take away this illness, I realize how lucky I am. I do.

But all of that hasn’t stopped me from wishing. I still wished. I STILL wish.

And haven’t stopped since walking out of that stupid doctor’s office over four years ago, with my kids and my father, with the word ‘Lupus’ slipping from my tongue and being texted to my husband. I watched my Dad turn white and learned my husband did the same, as the only thing they knew of this ‘Lupus’ at that point, was that it would kill me.

I was permanently put on steroids, oral and a very high dose on that day and haven’t been off of them since. In fact you can now add Cushing’s Disease to my very long list of disorders and ailments thanks to long term steroid use.

But yesterday, I got in the car after seeing the neurologist I met during my most recent hospital stay, with a new medication in my hand and hope. Hope for the first time in a really long time.

We have this goofy thing in my family. If Bob Seger’s song ‘Old Time Rock and Roll‘ comes on…well, you have no choice but to dance. It’s the family’s dance. It came from one of those weekends when we were bored and little, stuck at one of my Dad’s hockey tournaments somewhere in Canada and they would always have these parties afterwards.

Somewhere, upstairs in every hockey rink, there was a room where they sold beer, hot chocolate, hot dogs, and cleared away the tables after the games were over to play some music and let everyone dance.

My brother would always run away screaming if it came on, knowing my Mom was coming for him to drag him out onto the dance floor. I would go willingly, knowing after a few beers my Dad would twirl me around and the four of us would laugh and dance and sing at the top of our lungs.

It was a rule. You had to do it. So if I brought a friend, or my brother did, or if a cousin tagged along…beware the Kotecki rule!

As I started the car, new medication slip in my hand…”…that kind of music just soothes my soul. I reminisce about the days of old…with that old time rock and roll…”

And I danced and hopped around in the car. I didn’t change the station, or call my husband, or text my parents. I sat in a parking lot in Encino, California and danced and sang like a lunatic until the next song came on. I actually worked up a sweat.

Part of these auto-immune disorders for me is vasculitis. This medication is going to calm my blood vessels. My rheumatologist thinks it’s the missing piece to the puzzle and the neurologist told me the journey ends here. She’s sure it will work to change my quality of life. It should keep the TIAs at bay, while simultaneously bringing me some relief all over my body as my blood vessels swell and contract causing me widespread pain.

By this time next year, I may be on this and my Rituxan infusion, which comes every four months. The doctors are working together and believe should all go well, this is a real goal-Attainable and not false hope.

We’re also looking at gastric bypass in Cushing’s patients to speed up the process of my potato like frame. Losing weight will only help reach the goal faster, but it has been all but impossible for me while I’m still on oral steroids daily and occasionally have to get them via IV or shot. My body refuses to let go of the fat while on a steroid.

Understand I wanted to tell everyone the minute I left the office, but also needed a moment to myself. This is the first honest glimmer of hope I have had to find my way back to my LIFE in a very long time. I’m still not sure it’s real. I’m afraid to celebrate but want to, desperately. I’m afraid to tell you out loud, fearing I will be told by someone I’m crazy to think this will make that big of a difference and or they too were told by their doctor this might help and it didn’t or … well, you get the idea.

I don’t want to excite the kids that I may get to my goal of walking a Disney park and not needing a scooter.

I don’t want to excite my husband and prime caretaker that he may have a wife again, not a shell of a woman who looks somewhat like his wife but is really just an ill person in need of constant care.

I don’t want to excite my parents & brother, who have supported me through this ordeal and the rest of our family, including inlaws, all having seen the life-changing affects in one way or another. Helping in one way or another for so very many years now.

I just want to keep dancing in the car, having received what I believe to be my miracle. So much so I sprinkled glitter on it last night.

It may not be a glass slipper, but it sure feels like one.

Filed Under: #SUCKITLupus, Feeling YaYa, Stepford Crazies

40

December 25, 2014 by Queen of Spain 1 Comment

I’ve been wanting to write and write and write and write and write…

I turned 40.

I don’t feel much different. Or older. Minus my body continuing its march to disintegration. But mentally 40 feels much better than 20. Even 30. I actually like getting older.

We went to Hawai’i as planned and it was amazing, as planned. And, as if as planned, I landed in the hospital upon our return.

I have a really bad habit of going and doing something awesome and then having to spend a few days in the hospital because of said awesomeness. This time I can honestly blame a combination of the shingles and travel. Had it just been one or the other I would have been fine. But… no. That would be too easy.

But back to my awesome birthday in Hawai’i. I fell in love with shaved ice. I finally got myself a Disney Dole Whip (they have them at Aulani… no line… swear to God) And I loved nothing more than sitting on the balcony in the morning and watching the ocean waves. Admittedly I didn’t want to leave.

I even asked a friend to just bring the dog. I told the kids we could make shell necklaces and sell them to tourists. They usually look at me like I have 4 heads so…no worries. I even got into a rather cold ocean at 9am and swam with some dolphin pods and saw some sea turtles. I couldn’t believe how many were just zooming by right under us. To watch the kids go from afraid and tentative to nearly screaming through their snorkels was pretty fun too.

In fact, the entire trip I think I delighted in just about everything the kids enjoyed. Simply because they were enjoying it.

I think that is what 40 is all about. Watching those you love enjoy the wonder of the world around them. Having them burst into the room talking so fast about paddle boarding with Dad you can’t even keep up or hearing about the fish swimming around their feet and the crabs that were snapping their claws just inches from their faces and oh by the way here’s another shaved ice.

Yeah. 40 is much like today. Christmas. Where I love seeing everyone’s face as they open their presents. I love seeing the kids peek around the corner of the landing and then around to the stairs…and watching their eyes grow wider and wider as they realize and recognize familiar sights under the tree.

40 also means the three days in the hospital were painful and upsetting. 40 also means I recovered in enough time to see the kids perform in their school winter program, attend their end of school parties, and then catch a stomach bug that knocked me out for 24 hours.

40 is making it harder to fight. Its not that I don’t want to fight. My age is just making it harder. The recover is a bit slower. The punches I’m throwing back aren’t landing as often. I’m still landing them though, don’t worry. In fact, I’m doing well but no one believes me. I guess it’s hard to believe a woman in the hospital or fighting a stomach bug.

The truth of the matter is despite its hardships, 40 is my favorite so far. I know who I am. I know what I enjoy. I know what I need to do.

If there is one gift I wish I could give everyone this Christmas, it would be the gift of knowing who you are, what you enjoy and what you need to do. If you are younger than 40 I hope you don’t have to wait this long to figure it out and if you are over 40 I hope you’re looking at me laughing because you know how much better it gets from here on out.

Now if you will excuse me, I have a new plan to concoct… something about shells, necklaces…and shaved ice. Lots and lots of shaved ice.

Filed Under: #SUCKITLupus, Feeling YaYa, Stepford Crazies

Black Lives Matter

December 4, 2014 by Queen of Spain 3 Comments

I was going to write a post about being entirely disgusted to find myself cited by the infamous Ann Coulter in her 2009 book Guilty: the blah blah I hate liberals they are ruining the world book to make me money crap fest.

She wrote and released this book when I was in the worst of the throws of my Lupus diagnosis. You know, having strokes, losing organs, being hospitalized and having multiple surgeries. So she’ll have to excuse me that it didn’t come to my attention until now that I’m in her piece of trash.

Apparently she’s trying to make the case liberals were freaking out over a Barack Obama presidency and if he’d be killed. She thought we were blaming the right-wing nut jobs for targeting him (to be clear, I blame some of them for stirring the pot) and she attempts, rather poorly, to point out that it’s been nothing but liberals shooting up the country and killing people.

Let me make something very clear here…it’s been white males engaging in mass shootings for various reasons that everyone likes to call ‘mental illness.’ I will agree if you want to shoot up or have shot up anyone or anywhere you have mental issues. Something we need to tackle. But to be perfectly clear to Ms. Coulter and everyone else…Black males have a target on their back and it’s simply for being who they are. Black CHILDREN have targets on their backs for walking, driving, talking, BREATHING while BLACK. And when they sell cigarettes illegally or they allegedly steal a pack of cigars they are vilified that they deserved what they got. I had no idea these allegations brought about the death penalty without charges or a judge or a jury.

But, here is where the facts comes in. And I want you to USE these facts: Black males are 21 more times likely than their white counter parts to be KILLED by police. Just for being darker than a ‘mentally ill’ white boy.

They don’t get the benefit of the doubt of being ‘mentally ill.’ No. They are killed. Murdered. Snuffed out. Because, apparently, Black males can’t be mentally ill or be taken into custody with a baton, a taser, pepper spray, with back up help…no. No. Instead they are perceived as dangerous and a threat and shot and killed or choked until they could no longer breathe. Or simply walking around with a toy.

So my column, of which Coulter pilfered and called me insane for writing, stands even more true today than it did in 2007. Our President, just by his Blackness, has brought out the racists in this country and he has lead phenomenally under circumstances that are beyond insane.

12-year old African-American boys aren’t even given more than TWO SECONDS to react when they play with their toy guns in a park before being gunned down by cops. That is how much we are taught to believe everyone with skin darker than ours is a threat that must be eliminated and given zero benefit of the doubt. EVEN THE CHILDREN.

I will tell you right now, my son could play with every nerf gun, fake AK-47, and real looking toy gun with the orange tip scraped off on EARTH in our nearby park and no one would bat an eyelash. But you give that to a Black child and the cops don’t even HESITATE to shoot him on sight. They didn’t even HESITATE. Two seconds. TWO SECONDS.

The lack of indictment in the cases of Eric Garner and Michael Brown are further proof of my original assessment…that it would take a sacrifice of the First Family to stand strong in the WHITE House as the scum from under the rocks of America came and continue to come crawling out to finally proclaim in broad daylight they have issues with race. They have issues with an ‘other’ leading our country. They can’t even manage to leave the First daughters out of their sheer hatred and contempt for our President and call them classless and bar sluts. When these girls have been nothing but the epitome of amazing, good, classy tweens and teens.

Yes, our country has become divided – they can’t even handle the hashtag #BlackLivesMatter. They have to protest .. but…but … #ALLLivesMatter.

No shit. But you don’t hijack a hashtag where people are bearing their souls and jump in with this ‘ALL’ bull crap. We know ALL lives matter but this IS NOT ABOUT YOU. This is, specifically, about Black Lives. As I saw on twitter…would you hijack a cancer hashtag and say ‘but..but.. LUPUS matters too!’ No, you wouldn’t.

So sit down and shut up and finally LISTEN to these amazing members of our community who are SCREAMING for you to hear them. SCREAMING for you to walk a mile.

Once you have taken your time to sit and listen, then you need to take the time to stand up to the subtle and not so subtle racism you’ve been around your entire life. And you know exactly what I am talking about, so don’t even act like you don’t.

That uncle of yours that calls our President a ‘coon’ or a ‘porch monkey’ or the n-word if he’s just a total dickhead. That cousin who discusses how great cops are (which, many many are) and how they have to deal with these ‘savages‘ and ‘animals‘ – when their white ‘savages’ and ‘animals’ seem to get away with the same behavior when their favorite sports team wins a championship. Really? REALLY? You are telling me your sports team is more important and this behavior is ok so long as you win a game? But NOT when people DIE?

CALL THEM OUT. The time is now.

Do you hear me? Silence = agreement. People are DYING. Children are DYING. The time for you to sit on your hands and say nothing of the ‘sake of the family’ or to keep the ‘peace at church’ or ‘I don’t want to upset my grandpa’ is OVER.

The civil rights era has begun, again. Not that it ever really ended. I think we just swept it under the rug for awhile, despite our friends of color telling us otherwise.

Stand up. Be counted. Do NOT be afraid and do NOT allow ANYONE to get away with the usual crap that goes on over the holidays.

Give them facts. Give them stats. Let them know we will NOT tolerate this another second. Another minute. NOT another day and NOT another life.

We’ve watched schools be shot up, neighborhoods be war zones, and those in authority waltzing in like they own the place and forcing people of color to keep their heads down and say ‘no sir’ and ‘yes sir.’ Might as well be ‘no masser’ and ‘yes masser’ – because that is what it amounts to.
Go ahead and let your Mom blame you for ruining Christmas dinner. It’s that or let another Black person die.

Your choice.

Filed Under: #suckit, Stepford Crazies

I Believe

November 26, 2014 by Queen of Spain Leave a Comment

I don’t want to talk about Michael Brown.

I don’t want to talk about Trayvon Martin.

I don’t want to talk about Tamir Rice.

I don’t want to talk about Jordan Davis.

I don’t want to talk about Timothy Stansbury Jr.

I don’t want to talk about John Crawford.

I could go on…but I don’t want to.

We can argue all day and night. We will not get anywhere. Jury’s. Indictments, non-indictments. Trials, no trials. Armed, unarmed. Fearing for lives, just living their lives.

No one believes all cops are bad. There are members of law enforcement I respect and love with all my heart. I appreciate their work.

No one believes all white people are racist. There are allies who are working hard and listening.

No one believes all protestors are looters and out to destroy. We watched for 109 days your civil disobedience where little to nothing was damaged and non-violent marches and vigils took place.

With all of the things we all know no one believes…I have one question:

Why does no one believe Black America?

It doesn’t seem to matter if there are statistics to back up their pain.

It doesn’t seem to matter if there are facts and studies and numbers to give the rest of us something solid to hold on to instead of just emotions.

It doesn’t seem to matter if they ask nicely or scream loudly or speak from the highest office in the land. As the President of the United States said, “But what is also true is that there are still problems and communities of color aren’t just making these problems up.”

Why? Why does no one believe Black America? The PRESIDENT has to remind us communities of color aren’t just making these problems up. Why on earth do we think they are? Why would we QUESTION their life experiences??? Who are we to say what they live every day is somehow, not true? Why.don’t.you.believe.them?

If there is any hope for any of us, if there is any chance to heal decades of pain, to right wrongs, to have the slightest bit of empathy for our fellow man…we need to believe.

We need to believe when they tell us they hurt.

We need to believe when they tell us their truths.

We need to believe when they tell us their lives are not like ours.

We need to believe when they ask us to listen and learn.

We need to believe in our friends, our neighbors, our family, our community as they write, speak, sing, scream, march, and plead for us to HEAR THEM.

I hear them. I believe them.

Do you?