When Even Sleep Hurts

March 15, 2012 By Queen of Spain 4 Comments

Groggy and out of it, I sat up in my bed and could hear my husband reminding the kids they could call his number at any time tomorrow.

If you need me, remember how to use the phone, right? If Mom talks like that again, just call.

And it was then I realized I had fallen asleep, in bed with the kids while they watched tv, and I must have talked in my sleep and scared them enough to have them run to get their Dad.

So I jumped out of bed to find out what I said and how scared they were. If I scared my kids I need to go hug them and tell them it was ok. To go comfort them. To tell my husband I was fine, I just dozed off. I had a long day of treatment and then taking care of the kids after treatment…all I did was doze off while we watched tv at 845pm. How horrible could it have been, I just dozed off for 20 minutes????

Before I could even get a foot on the ground, Aaron was in the room trying to get me to lay back down.

Go to sleep. Just get lay back down.

But the kids

The kids are fine, just go back to bed

No, I need to see the kids

I just feel asleep, what did I say???

As it turns out, I apparently told the kids to have their father put the penguins away before bed. Or something like that. Scared, my oldest went to get Aaron who came upstairs and put them in bed.

Despite my husband’s urging to just lay down I went to see the kids. Hugged them both. Told them not to be afraid. We all talk in our sleep sometimes. I had just been sleep talking. I’m so sorry it scared them.

It was bedtime, we were in our pjs, in bed, watching tv, and I dozed off. That’s all. It was nothing to be afraid of. They hugged me and hugged me and wanted me to lay with them. But I knew if I laid down I’d fall back asleep and risk talking again, and I needed to go let out the tears welling up inside me that needed to burst out. I was having a hard enough time keeping them from exploding all over their stuffed animals and fuzzy blankets.

Holding it in I went back to my room and realized I needed to take medication, which means I needed water, which means I needed to face Aaron who I also didn’t want to cry in front of. He didn’t need it. His shoulders have enough on them, they don’t also need to be soaked with tears and snot.

So I held my breath and got what I needed downstairs and came upstairs again to find myself too emotionally exhausted to even cry.

I can’t be awake without scaring everyone.

I can’t be asleep without scaring everyone.

And what is worse(?)…I feel better, physically. But that doesn’t seem to matter. Labs are improving. My body is improving. But it DOESN’T SEEM TO MATTER.

My kids and my husband are what keeps me going. To cause them any worry or pain or to scare them… destroys me.

Filed Under: #SUCKITLupus

Thanking Breitbart? The Cyber-Lyching of a President

March 10, 2012 By Queen of Spain 5 Comments

I’m proud of the team at Big Journalism or Breitbart.com or whatever they are calling it these days. They are tackling a very important racial issue. It’s called Critical Race Theory- and they have introduced it to an audience who many never have heard of it otherwise. Yup, white Fox News viewers in middle America now are hearing about this ‘radical’ theory that was introduced by Professors Derrick Bell and Alan Freeman. Conservatives have set their sights on Bell.

Now, it’s obvious their intentions of showing everyone Critical Race Theory is to somehow chip away at the President and his bid to be re-elected. At least that is how they see it. I see it as educating what seems to be a rather racially uneducated group on a very complex theory that they may dismiss or they may, actually, let sink in and compare with what they SEE in every day life. People of color being stopped by police. People of color being targeted to show their ‘papers’- people of color who have spent their entire lives assumed as criminals, whether they walk into a store or walk down a white neighborhood’s sidewalk.

Just this week we’ve had another instance of CRT in action. And it’s killed a child.

Of course the Breitbart folks are trying to frame CRT very differently than any sane person might. They are calling black professors racist and calling anyone who believes this theory has merit racist. Yes, white privilege at it’s finest. (that’s sarcasm, which I have found I need to point out because some people don’t catch it)

However, my hope is they continue to study CRT. They continue to read and read and read and see, with their eyes and their heart, the truth that has been sprawled out before them. They can learn so very much from Professor Bell and their President. By all accounts (except those you’ll find by political types trying to take down the President) Professor Bell was not a firebrand, he spoke calmly and logically regarding race. If you take a look at ColorLines some of his former students are beginning to come forward and share their stories.

History has a way of showing us the right path- and students and colleagues at Harvard, as well as Bell’s books and writings, all indicate his dedication and lack of ‘radicalism’ on the matter. While some might call the idea that racism is inherent in the law and legal system as ‘controversial’ I can’t possibly conceive how anyone could call the idea ‘radical’ or ‘racist.’ We have been witness to racism in the legal system since it’s inception. We are WATCHING IT HAPPEN before our eyes, and grew up watching it happen. Denying these very simple truths is like denying the sky is blue or water is wet. Turing it around to make those who point it out the ‘racists’ is just plain evil. Unabashedly evil. And also horribly dangerous.

Here you have a community that has been enslaved, and treated as far from equal since the day they were forced here on those boats and we have the nerve to trot out political arguments calling this community RACIST. How far have we fallen? How horribly backwards have we become? At what point do the conservative pundits we see on CNN and Fox and MSNBC stop and look at themselves and realize they have crossed a line that makes half the population shudder. This isn’t a game people. This is not a ‘vetting’ this is a cyber-LYNCHING. Yes, I realize that is a loaded word, but what you are doing is nothing short of attempting to cyber-LYNCH a President and the people he has known throughout his life because of RACE. You, the people who swear race has nothing to do with any of this, are now using it. Oh, the irony.

You may not be hanging a noose on a tree, but you are certainly trying to use your WHITE PRIVILEGE to tackle a complex racial theory and use it against our first African-American President. Not only have you shown your true colors (something us Leftists have been saying was behind this all along) you have now displayed for the world your ignorance on the subject of race. Crying reverse racism in a world where you don’t have to worry about being shot accidentally by a neighborhood watch captain. Where you certainly don’t fit the profile for 10% of the population being locked up. Where instead of having a civil discussion about race and institutionalized racism you attempt to score political points with cheap shots, incorrect information, and you dare call those who fought for equality racists. Think about that for just a second. Let it sink in. You are calling people who FOUGHT for EQUALITY – and I mean FOUGHT… not some slacktavist online petition… I mean gave their LIVES and their PAYCHECKS (maybe that is something that might hit home for you more) in order to make sure others had opportunities most white people had.

I simply ask this: Have you taken a stand for racial equality in your life? I mean real racial equality, not that your white ass isn’t inconvenienced by some black activism. I mean diversity. Have you demanded diversity at your workplace? Do you even believe diversity is important? Have you given up six figures or more because of what you believe? Can you honestly say to me that we, as Americans, are at a point where old black men can be deemed racist for documenting our country’s history of criminalizing blacks and giving their LIVES to make sure the next generation of African-Americans have better opportunities?

I had an interesting discussion with my brother the other day. We were recalling how we grew up, and our family and friends. Family and friend we still love dearly despite their flaws, as they love us despite ours. We were agreeing that all this political talk of racial ‘code’ words and what not was entirely true. Because we know you. We know those family and friends. We were present when they made those racially tinged jokes and elbowed their buddies. We were at the dinner table when they use the N word, laughed about the n*gger that got shot (it was deserved, of course) and listened as they bitched about those n*ggers getting into school and taking a white man’s spot at work. We were there when you laughed and high-fived after hearing some black kid was beat for being in the wrong neighborhood, or looking at one of ‘your’ women. We have been there all along, and we know who you are, how you operate, and the way you really think. So when we attended college or learned of CRT, it wasn’t a surprise to us…it was confirmation of what we’ve seen our entire lives as privileged white kids. It confirmed the stories our uncles told at Thanksgiving about police offices, or judges, or other public servants. It confirmed the way our aunts acted when they saw anyone of color walking down their block or in ‘their’ mall. And it certainly confirmed how they looked at us when we dared question the status quo.

I’ve been called a n*gger lover my whole life because when I was a tween I picked up and read Malcom X’s autobiography. I dared encouraged my cousin to hang a poster of Michael Jordan on her wall. I wrote in school newspapers that our all white school needed to celebrate MLK Day just like the schools on the other side of the railroad track. I stood up and demanded diversity, equality, and racial justice in my teens. Because as my brother and I noticed then, and still notice now, CRT is alive and well in many parts of the nation. We see it. We feel it. We’ve LIVED IT, so denying it now seems not only ridiculous but evil. It’s also rather stupid to deny something we’ve witnessed our entire lives. So if we’ve seen it from OUR side of the white experience, imagine how this feels to the millions of African-Americans in cities across the country who have lived it.

You may want to rewrite history, but you can’t. You may want to play victim, but I’m sorry…when your race is enslaved and then kept down for generations- be it by Jim Crow or segregation or what you are doing NOW, then we’ll talk about YOU being the victim. Until then your role is to STFU and help make it better. Tip: helping to make it better does NOT include saying YOU are the victim of racism when clearly you are a spoiled, white, brat.

Sorry, that’s me with name calling. Professor Bell would not approve.

I just ran upstairs to check my constitutional law books from when I thought I might become an attorney. Not one mention of CRT. Granted those are the lower level classes but still, it’s not as if this ‘theory’ was so prevalent it entered into mainstream law books at universities across the country. Which is almost a shame really, I think it deserves a mention. It’s clearly part of our legal fabric.

Which, I suppose, makes me some sort of radical for even bringing it up. But let’s be honest here, the radicals are not the well-educated professors, working hard for equality. Nor are they the students standing up for diversity. And the radical is certainly not our President who hugged and stood up for racial justice. I’m also not a radical for seeing the theory in action and substantiating that it exists. The radicals are those conservatives whining that they are the victims of reverse racism. The radicals are those who claim to be vetting in their cyber-lynching. The radicals are those who do not understand diversity, equality, CRT, racial injustice, and generations of struggle. While these radicals at Breitbart.com and otherwise brought up CRT to score political points, I am hoping their efforts educate the NASCAR Dad and Soccer Mom on a struggle they might not have otherwise realized: the struggle of people of color in modern day America- and how radicals like those conservatives are using racism to keep the struggle difficult and alive.

I do not pretend to even understand what a person of color’s experience is like. Those who have set their sights on taking down the President, via racism and racial politics, need to humble themselves as well. To play politics is one thing, to act as though they not only understand but know better about the black or person of color experience is another.

The cyber-lynching ends now, where the discussion of Critical Race Theory and other racial issues begin. Let’s turn this into an education of the American people in honor of Professor Bell and his work. Let’s turn this into a teaching moment on race, and THANK those who brought it up so that we may have a real discussion on what is or isn’t true about the black (or person of color) experience and racism. Let’s use the President’s hug of Professor Bell as a jumping off point to HUG the real radicals spreading hate and thank them. Now the average, white, Fox News viewer can ponder Critical Race Theory and what happens at their dinner table. What happens at their workplace. What happens when their family and friends joke and high five. Because in their hearts, and around their kitchen tables…they know the truth. And so do we.

Filed Under: #suckit, Obama2012, Royal Rant

A Break…Please

March 1, 2012 By Queen of Spain 43 Comments

My health had spiraled downward in the past few months, and needless to say we’ve been a bit scared around here. It has been a humiliating round of trauma for me, personally, as I attempt to pull myself up from new lows.

No, really…new lows.

Think I’m kidding? It started a few months ago with uncontrollable diarrhea. Emphasis on uncontrollable. Cue colonoscopy where I had the fun of getting knocked out fully (thank you) and we await biopsy results that still have us on edge.

Then there is the increased prednisone. That equals increased weight gain to new highs! Or lows, depending on how you see it. I now have two chins. And folds where I didn’t realize people could have folds. I can’t lay down anymore without new weight shifting and falling, very uncomfortably, into me. I’ve taken to sleeping while pushing my boobs down towards my stomach, trying to be comfy. I’ve also started putting deodorant under my huge boobs.

Don’t say I never give you the really good tidbits. Honestly, more people should talk about this. Prednisone weight gain isn’t normal. So it isn’t proportional. Which means I can’t possibly be comfortable, because that would be too much to ask…no, I’m freaking miserable with a very disproportional weight gain that just seems to hang on me like 40lbs of weight pulling me down in all directions.

Once we weathered the colon fun, I suffered an episode that had me in the hospital. I’ve already talked about it briefly but we did just get word from the neurologist that everything is ok. I’m thankful, if not still a bit freaked out and wishing there was a nurse around me at all times.

Then the kids got Influenza A…and despite my having the shot, guess who got it next? I type to you from bed, where it remains hard to lift my head…I’m not kidding. In fact I have to keep taking breaks between sentences because it’s hard to hold my arms up to type. My muscles hurt that much. With pain reliever.

They tell you all these things will happen with Lupus but they don’t really explain what it means for you, for those around you, for those taking care of you. It’s hard. Beyond hard. I have horrible guilt…I’m working on it. I have horrible regret…I’m working on it. I have concern for my overall health…I’m working on it. Doctors have said ‘we need to make you sicker to make you better’ which makes me horribly angry, because I don’t feel like I can get any ‘sicker.’ My family can not take me getting any sicker.

I say that but they keep taking it…and I keep getting sicker. Scaring me. It’s very scary when you think you can’t take anymore and it just keeps coming…harder.

My body needs relief, badly. I’m begging my doctor for relief today, and am begging the universe for a break. We’ve taken more than we can handle, and while reinforcements come soon, it’s not soon enough. My brother doesn’t need to be changing my sheets and trying to carry me into an ER all in a span of a few weeks. My husband deserves to train for his race. The kids deserve a Mom that can be present mind, body, and soul…not in bed hoping to lift her head off the pillow.

I don’t think that is too much to ask.

Filed Under: #SUCKITLupus

A Place to Call Home

February 23, 2012 By Queen of Spain 9 Comments

Frustration doesn’t really even begin to describe how I feel right now.

I’m somewhere between wanting to train for a marathon and give up to just not be in pain anymore.

Don’t read into that. It doesn’t mean anything more than it says. Pain sucks.

I’m beyond unhappy with my body and beyond unhappy with having been back in the hospital and going through another round of treatment and having the flu in the house and Republicans all up in my vagina.

I feel like I’m a burden …again. I feel like I am no good to anyone around here and their lives suck because of me and all the things I can’t give them or can’t do.

I look like some 200lbs version of myself that I hate more than I hate … I don’t know… more than I hate the Colorado Avalanche.

That’s a lot of hate.

But that is the honest truth of life with Lupus. And tomorrow I may wake up feeling fine and the kids better and I will smile and be thankful for a great day with my family. It’s that simple and that complex.

I want to blog more, and write and push all my words onto the page but I don’t want to scare anyone. I want to sleep and rest more, and gain strength and get healthy and mount the biggest comeback the world has ever seen.

But more than anything, I just want to be. Making those around me happy and content. Making those around me unafraid and without worry.

I want to be able to take care of my family- simple things like making lunches and driving back and forth to school. Cooking dinner. Doing the dishes. Daily activities, as the doctor calls them.

I don’t think that is too much to ask.

So that is where I plan to concentrate my efforts and my energy: those around me. They need it. I need it. We all need it- with some space to breath and grow.

The good news is all of my current medical issues appear to be medication related. The bad news is all of my current medical issues appear to be medication related. This balancing act continues. But I have no doubt we’ll get to a place where it feels like home.

That is all I ask for. It is all I want. And I will get what I want.

Filed Under: #SUCKITLupus

All I Want To Say

February 18, 2012 By Queen of Spain 26 Comments

Today was the day I thought I was going to lose everyone I love…or, actually, they were going to lose me.

I’m still not sure what happened. One minute I was packing backpacks and getting kids out the door, the next I was asking my brother to drive because I could feel something wasn’t exactly ‘right.’

Dismissing it from my head and telling myself i was just being safe, we got in the car and headed to school. My brother driving, the kids chattering away in the back seats, and I on the passenger side slightly annoyed I asked my brother to drive because I should have just taken the car and run errands instead.

Then I got woozy. Really woozy.

I was glad he was driving, but I still wasn’t sure something was wrong. So along the freeway we went, all the while with me slumping further in my seat. The voices in the car feeling like they were getting further away.

Then I got dizzy, and I tried to shake it off telling myself maybe I was hot – as I tend to get sometimes if I don’t take enough of my bioestrogen cream (I lost my uterus to Lupus) or xanax or… the weather. Who knows.

We drove along and things in my body got worse. I could feel the tips of my left fingers begin to tingle (was I getting a bad migraine? that happens a lot with my migraines).

But then something new happened…it felt like there was a brick on my heart. Not like I needed a Tums, but like I needed a crane lift to get it off. It hurt. And I wanted to tell my brother but I didn’t want to scare the kids and I couldn’t get the words out even if I decided to scare the kids.

So as calmly as possible, and without looking at him, I told him something was wrong. I’m not sure it came out as English. As calmly as possible I told him I was telling Aaron to turn around. I told him to get the kids to class. I told him to take me to the hospital.

At least, in my mind I was telling him to do all these things. I have no idea how much of it came out of my mouth and made sense to him.

I saw the kids walk into school. I saw my brother walk them in and them out of school. I remember thinking ‘they didn’t get walked all the way into class’ and the rest is a blurr.

I remember my brother trying to get me out of the car, but my body wasn’t working. I remember crying, trying to tell the doctors what was wrong, I remember a doctor telling me I was taking xanax and I must have horrible anxiety. I was trying to explain I was on xanax because I was on steroids, but he kept saying this was probably my anxiety.

All I could think was ‘anxiety? anxiety means you can’t lift your left arm or speak clearly?’ and I wanted to make a fist with my weak left arm and punch the doctor. I really did. I’ve met some really jerky doctors in my life, and I’ve had them tell me some pretty stupid things…but this doctor was NOT listening to me. I wasn’t taking anti-anxiety medication because I had horrible anxiety issues, I was taking them because I was was on PREDNISONE which made me agitated. Steroids do that. He was a doctor, he knew this, right?

Then things got worse. A nurse was looking in my face trying to calm me down, I could feel my mind going in and out of being awake, and I could hear my brother and husband crying.

I thought I was going to die.

And if I wasn’t going to die, I was convinced if I fell asleep, I was not going to wake up for a very long time. So I was fighting it. I was popping my eyes open as hard as I could and the nurse kept telling me to focus on her. I didn’t want to focus, I wanted to get up and punch Mr. Anxiety Doctor. With my left hand that wasn’t working.

All I could do was think about the kids…how someone would have to pick them up and tell them I was asleep. I didn’t want to let go of what I thought was my husband’s hand, but it turns out it was the nurse. I think.

I also kept wondering why no one would get this brick off my chest. No one seemed to care because the test showed no brick. But I could feel the brick.

In comes Mr. Anxiety Doctor who says, very casually, ‘wow, you are on a lot of medication, it might be the medication’ … no kidding asshole. Have you heard a WORD any of us have told you?

Ok so maybe my words came out as ‘ladglahdgahdfakdhgakd’ but I know my husband and brother were making sense.

I also know I was petrified this was the last time I was going to be able to talk to anyone I love, and I couldn’t talk. I was screaming in my head, but nothing was coming out. I’m not sure I can explain a more frustrating feeling, especially when all you want to say is ‘I love you.’

Filed Under: #SUCKITLupus

Dear Cable News Blow Hards: Walk the Walk on Women or GET OUT OF THE WAY

February 15, 2012 By Queen of Spain 14 Comments

There is a rather interesting pissing matching going on currently between Andrew Breitbart, Dana Loesch, Lee Stranahan, and (as far as I can tell) Keith Olbermann. (There may be more so feel free to add them in the comments if you are watching.)

They are arguing over sexual assaults, rapes, and crimes that are alleged to have occurred at or near Occupy camps across the country.

All sides seem to agree sexual assault/rape = bad and all sides seem to agree the other is lying about something.

What no one seems to be addressing is the complete and utter exploitation of victims for their own political and pundit fodder and gain. They have each spent the past 24-48 hours blaming each other for which side defends women better- the left or the right, the independent, the socialist, the commie, the hippie, the tea partier, the occupier or the cable news blow hard.

Let me make this very clear, since all of you seem to be too wrapped up in who is ‘winning’ to see clearly: you all suck and not a single one of you is doing a damn thing to help women.

You are exploiting them for traffic on your website/show and you have offered zero solutions to any issues be they alleged or otherwise.

You are doing this for ratings, to score political points, and to pretend as if you suddenly give a shit about feminists, women being attacked, or violence against women.

I’ve watched all of you in action, and I have no issues with lecturing you on your pathetic attempt to put on a show as if you care what happens to anyone but yourself. Your egos speak for themselves with the sheer LACK of attempting to HELP any of these women, but instead use them as pawns in your political game.

Oh another epic take down of pundit #1′s weak points while pundit #2 posts another video showing the lies of pundit #3 while pundit #4 sits around laughing maniacally because of the traffic rolling in and the ad dollars and tv appearances this might bring!

Bravo, morons. Bravo. Once again women are being used and abused by the media so you can bring home a paycheck.

Here’s an idea…why not get your incredibly concerned for women asses involved in some of the MANY bipartisan organizations out there actually working to stop violence against women- wherever it occurs. Because let me tell you, it’s not just at Occupy events, it’s at EVERY event.

And it’s shown on each station your pea sized brains see fit to visit with your suddenly lily white vision of YOUR side’s wonderful treatment of women (checking again how many Republicans signed on to re-up the Violence Against Women Act…oh right, turns out it’s now a PARTISAN issue…pathetic).

And let’s go ahead and review just the act of needing a tent at any event for women to feel ‘safe’ in and the problems there in…or how some of us felt as (legally) gun-toting cowboys strutted their stuff at Tea Party rallies while ELECTED OFFICIALS called for the crowd to take back their country by ‘any means necessary.’

Yeah. Enough. Enough already. Now you’re going to have a pissing match over which side takes violence more seriously? Are you fucking kidding me?

How about you back legislation. You offer solutions. You work together to get rid of violence against women ENTIRELY and in a bipartisan manner that actually .. oh, I don’t know… STOPS VIOLENCE AGAINST WOMEN.

Loesch, of all people, knows of several bipartisan female organizations she could easily contribute to in a good faith effort to show her new-found feminism, be it Name it, Change it or something with a bit more teeth like backing the Violence Against Women Act and using her bully pulpit to get conservatives to sign on.

Olbermann should know that the current War on Women being perpetrated by the Right easily includes attempting to take down anyone standing up for women’s rights- and instead of wasting his time acting as though the Occupy events have been clean of any violence against women, stand up and say ENOUGH (victims, protestor or otherwise) get it OUT of this movement. His attempting to dismiss ‘problems’ at Occupy events reminds me of Breitbart and Loesch attempting to dismiss racism within the Tea Party…’what? racism… we don’t see that here, we’re loosely organized and can’t possibly know or pretend to know everything that goes on across the country.. blah blah blah racism blah blah blah excuses blah blah blah lies blah blah blah more racism blah blah blah more excuses…’ was basically their party line despite every person of color on the planet (minus the handful who decided to be tea partiers) screaming at them ‘OMG THE RACISM AT THESE THINGS SUCK.’

The fact of the matter is the Tea Party went off the rails when it refused to acknowledge its movement had a KKK issue and a white privilege issue. The Occupy movement is going off the rails by having big named pundits refuse to acknowledge there has been violence against women.

So now is the time for EVERYONE to STFU and DO something about it. I said it before and I will say it again- if you are serious about confronting racism and dealing with it then WORK WITH the organizations reaching out to you- like the NAACP and others. And if you are SERIOUS about helping women and suddenly giving a SHIT about that ‘patriarchy’ we so often decry then get off your cable news stool and DO SOMETHING ABOUT IT- support the Violence Against Women Act, contribute and join Name it, Change it … offer up your own God Damn solution for all I care, just DO SOMETHING instead of piss at each other back and forth on twitter and your blogs pretending like you care what happens to these women.

Because right now, all it seems any of you are about is being right. And that helps no one but your selfish egos.

I’m ready to see which one of you will walk the walk and get involved to help.

Let’s just hope I don’t have to wait long, because there is an election coming up and the majority of us women are sick of being used as your political football.

I don’t pretend to speak for all women, but I do speak for myself when I say I refuse to spend another minute believing ANY OF YOU care about what happens to women at an Occupy event, at a Tea Party event, at the headquarters of the RNC where I’ve seen some sexist things written on white boards while visiting. And let’s not even mention the current war on birth control, where apparently women should be just keeping their legs crossed and never enjoying sex unless we’re out to make a baby….hello 1950′s anyone?

This woman is done watching pissing matches and is ready to use her voice and her vote for those of you offering solutions that show respect, equality, and for God’s sake a little fucking sense.

Shelve your egos and use your positions to get shit done, or get out of the way…because I’ve got millions of women behind me ready to continue our work, which you don’t seem to acknowledge or respect unless it brings you ratings.

Walk the walk.

I’m waiting.

p.s. Here is my six-year old daughter, who seems to understand the issue better than all of you combined.

When I told her what was happening she asked ‘so what are they going to do about it?’

My answer?

‘Probably nothing, honey…’

and she replied ‘Well that’s pretty stupid Mom…’

Pretty stupid, indeed.

And in honor of her Mother, she’s blowing you a kiss…though I prefer to think of it as she’s telling you to kiss off.

Filed Under: #suckit

Bottles & Bodies

February 14, 2012 By Queen of Spain 16 Comments

I’m getting overly defensive about the coverage I am seeing surrounding the death of Whitney Houston.

“Various prescription bottles were found in her room…”

“The singer was found, along with many prescription drugs…”

“Houston was seen sipping champagne and it has been rumored the singer was taking Xanax, a powerful prescription drug…”

This could be me. While we do not know how Whitney Houston died, it hasn’t stopped the news stations and talk show hosts from speculating she was taking a combination of drugs given to her by a doctor, and possibly alcohol.

Now, I haven’t had more than a few sips of alcohol since my doctors put me on these extremely strong medication, but it doesn’t stop me from thinking about what could have been…or what could be. I realize I am not a cocaine addict, or that I have a drinking problem. And I know Ms. Houston has battled her addiction demons for a very long time.

Perhaps this is all hitting to close to home because I KNOW I can not just quit many of the drugs doctors want me to take. There would be withdrawal symptoms. There would be issues. Quitting cold turkey is not an option. I need these drugs to function. To be able to lift my arm and shampoo my hair, and more importantly I needed these drugs to LIVE.

Let me rephrase that…some of the drugs I need to live, some of the drugs I need to live without pain. But I have no intention of living in pain for the rest of my life. None.

I made a conscious decision long ago that if I had to live with this disease, at the very least I was going to be comfortable doing it. I was not going to suffer and be in pain while my body battled. That means I must take narcotics. Heavy narcotics.

I started off with the usual vicodin, norco, etc. and when those didn’t work well I graduated to the percocets and what not. Then came the xanax to help me fend off the sweats and anger and steroid anxiety and grrrrrr issues that came with high doses of prednisone. And then my doctor suggested I speak with my pain management doctor about methadone.

Yes, I take methadone, and diladid, and percoset and xanax – along with methotrexate and fiorcet and imitrex and plaqunil and plavix and benazepril and lyrica well…the list goes on and on. Granted usually it’s just methadone and xanax and lyrica…But with inflammation up and a colonoscopy this week my doctor added the diliadid to help me through. It’s true, I need so much medication to make me comfortable I get breakthrough pain that needs the big guns they give you in the hospital. Elephant tranquilizers. I’m not kidding.

This means I either can not drive or I have to plan when I take my pills so I can drive and then pop them when I get home (or in the car five minutes from home).

There is no doubt my body is dependent on these drugs in order to not feel pain. But there is also no doubt that when I have gone without them, or when this all started and I had lesser drugs, I was in so much pain I could barely move. Some mornings it is still hard to get out of bed, because I have gone too long without pills. I actually slept all night, and my pain level is so high just rolling over hurts so much I have to rev myself up just to move and get downstairs to take my meds. There was a time I kept them, along with a glass of water, by my bedside. This means when I woke up at 330am with pain, I could just sit up to take the pills and then have an easier time getting up at 7am.

But mind you, even if i get up in time to take my meds it doesn’t end there. I have to sit and wait for my meds to kick in. Usually this means about an hour of reading email with some green tea and looking at the clock, waiting…waiting. There is no rush of relief. There is no sudden ‘aaaaaaaaaaaah’… no. It doesn’t work that way. It’s just every few minutes I can move a bit more. Every few minutes I can breathe a bit deeper, until finally I can get myself off the couch and make lunches and snacks and pack backpacks and make breakfast.

So when I hear that Whitney Houston had a doctor give her what I take, and it might have played a role in her death…yes…yes… my ears perk up and I worry.

She left a child. She left people who love her. She allegedly was found in the bathtub (a place I am told to often go because being weightless in water takes away so much of my pain).

As a disclosure for those who are concerned -when you get to a pain level such as mine, you get yourself a handy dandy ‘Pain Management’ doctor. Mine drug tests me every two weeks to make sure I’m not taking too much, or anything else he has not written the prescription for…he also is the only one who will handle my pain management drugs. He and my Lupus doctor not only talk on the phone but the offices send my lab results back and forth. In other words, my Lupus doctor tells my pain doctor ‘yes, her labs are showing increased inflammation this week’ and when I walk in and say ‘boy I feel like I need more I’m really hurting this week’ the pain doctor knows I am not lying, he has the labs to prove it, and my meds are adjusted accordingly.

But what happens that day where it hurts so bad I take extra, and then happen to take a bath? Will there be talk about how addicted my body was to these pain killers? That the cops found medication all around the house…because they sure would with me. Then again, I don’t have a history of drug abuse so maybe not. All I know is I keep hearing it on the news and it keeps feeling like a kick in my stomach.

The abuse of prescription drugs is skyrocketing in our country. People think because their doctor gave it to them…it must be ok, right? Wrong. There is so much more to it. So, so much more. Just because you needed it for knee-surgery for 5 months ago, and it made you feel good, does not mean you still need it now and I encourage you to seek help.

When the time comes, and my Lupus is finally under control, I will have my doctor help me wean down from all the drugs I am on. Although both doctors shake their heads and are helping me get used to the idea this just might be my life for a long time, I can at least hope I will one day be drug free.

So yes, I worry. I worry that people will see the amount of pills I carry around in my purse and wonder if I’m some sort of doctor-shopping addict, or if I have a legitimate disease that requires all those heavy drugs. I worry that when we start hearing stories of celebrities on ‘prescription drugs’ if it’s some reputable doctor is taking away their pain or over-reaching and doing what they are told because this is a celebrity asking, after all.

I worry my kids will think nothing of taking prescription drugs. They see me do it every single day, multiple times per day. They watch my take my chemo shots when they are feeling up to it, and they watch me count out and take a palm-full of drugs at the dinner table every night.

Of course we have talked to them about the dangerous of drugs- even the ones the doctor gives Mommy. They can see what these drugs have done to me physically and hopefully learn this is no way to live.

Yes, I’ve tried physical therapy and accupncture. We make sure the meds are not in reach of the kids and they all have child-proof tops.And yet here I am, a responsible and in need patient, trapped in an endless cycle of needing the drugs and hurting so very much without the drugs.

Finally, I have to ask you show some compassion for Whitney Houston. It’s possible she was battling her drug addiction and it’s possible she took too many of the strong drugs you shouldn’t take too many of- a fear I have daily.

…and the next time you hear ‘…found with bottles of prescription drugs by her side…’ you think of those of us who have those bottles on our dressers and hope that when the time comes, we aren’t remembered for what was in those medications, but what was in our heart.

Filed Under: #SUCKITLupus

Grace

February 9, 2012 By Queen of Spain 13 Comments

I’ve realized that heading to the hospital for ANYTHING causes a trigger reaction in me.

I’m headed there now for a very normal, very routine colonoscopy and I’m terrified. I’m terrified they are going to admit me and make me stay. I’m terrified they will find out that Lupus is doing something ELSE to screw with my life. I am terrified the kids are scared, that my husband is scared, and that everyone has to deal with me in the hospital, at the hospital, or anywhere NEAR the damn hospital.

I have not been admitted since my TIA this past summer and that set us all back mentally around here for a good long while. In fact, I’m still not sure we’ve recovered. It’s too scary. it’s too hard. And it reminds everyone in this house of just how many organs I have lost, how many surgeries and procedures I have had, and how horrible this entire Lupus journey has been.

I want this to be over. And while I realize there is no cure for Lupus, I also know some people have a handle on their disease and live a very normal life. I want that to be me. I want that for my family so badly that I’m up at 5am crying and trying to pull myself together for their sake.

It makes me sick to my stomach what I put them through. Sick.

I know what you all are going to say so please, it’s ok. I would do all of this in a heartbeat for them. I wouldn’t even THINK about doing it and I’d be right there next to Aaron if it were him and of course next to either of the kids, advocating on their behalf and holding their hands. But I don’t want anyone to HAVE to do this for me. That’s just how I am. Believe me, I’ve tried to change over the course of all of this…and while I have gotten better at accepting it all, I SITLL HATE IT.

I’m the Mom. I’m supposed to take care of them. That is my job. And yes, Aaron takes care of me like any loving husband who kicks ass would…but he’s been doing it for SO LONG and the kids have had to deal with this for SO LONG. Too long. Way too long. It’s NOT FAIR to them. It’s just not.

I’ve had trouble putting into words this week’s passing of my friend Susan, otherwise known in the blogging world as WhyMommy. She was an inspiration for one of my first BlogHer projects way back in the day: BlogHer in Second Life. She, well…her avatar, came to the virtual conference because she was undergoing chemo at the time and could not attend the real thing. And I can’t take my mind off her husband and two boys and how hard and awful this all is for them. No one should have to lose their wife, their mother, their friend.

And I think about all the years that have passed where Susan fought so hard and even worked (she was an astrophysicist how awesome is that?) and kept up with life while cancer was attacking. She was a wonderwoman. And my bitching about some small procedure seems so insignificant in light of recent events.

But she would talk to me about understanding how I felt. She was one of the few people with whom I would commiserate about being ‘sick’ while trying to raise a family and live a normal life. Just a few weeks ago she reminded me that I was strong, and brave, and that my children and my husband love me unconditionally -even if that meant I was stuck in bed and even if that meant I couldn’t do it all. As she put it ‘they are happy to just have you THERE, Erin. They love you.’

I wish she were here now to tell me those words again. Because I need my friend this morning. It’s so selfish of me, but I need her. She understood. And I would tell her she is so much more brave than I am (she was) and she is so much more graceful in her fight (she was) and that I wish I had her attitude. And she would tell me she has bad days too and then she would send me something awesome to show the kids that usually involved space or the planets and we’d laugh and just…do what friends do.

Her absence this morning is like a kick in the gut.

In honor of Susan I’m going to attempt grace today. I say attempt, because Susan is smiling down on me laughing, knowing I will end up telling Lupus to #suckit rather ungracefully. But for her, I will try.

Grace is something I need more of anyway, so it can’t hurt. And when I think of Susan, I think of grace personified.

I’m also going to concentrate on these photos, because they make me smile HUGE:

…and this one, which will forever remind me of Susan and how even VIRTUALLY she could rock bald in a ball gown like no other.

Grace.

Filed Under: #SUCKITLupus, BlogHer, blogher07

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