#SUCKITLupus

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

When You & Your Dirty Kids Are Just Another Number

November 12, 2014 by Queen of Spain 9 Comments

It’s been awhile now since I stood before the judge in that cold courtroom on Wilshire. Since I heard the worlds “entirely disabled” and “incapable of any work in this economy.”

It was like a punch in the gut and a weight off my shoulders all at once. I would continue to collect my long-term disability benefits, as contracted to me by my employer…however this appeal meant the long-term disability benefit insurance company could now deduct what I would be receiving from Social Security and what my kids would be receiving, since their Mom was now entirely disabled.

It also meant I was given Medicare.

What I didn’t know, until a few weeks ago- when two large packets arrived in the mail, was that the kids were also eligible for MediCal.

Except we have private insurance for them. So I ignored the big packet and went about life.

Then, about a week or so ago, two letters came in the mail demanding I choose a MediCal plan for each child or they would choose one for me. So I did what most people would do, and I called the number on the letter to let them know “thank you, but no thank you…the kids have private insurance through their father’s work.”

Except it was’t that easy.

It also wasn’t pleasant. At all.

After a series of “Press 1 if you are calling to ask about your child’s benefits. Press 2 if you are calling to find a provider…” and so on and so forth, I finally found a real person.

Except I needed to hold.

57:18 later someone picked up.

Yes, this is Dainelle, how may I help you?

Hi, I’m sorry to bother you but I received some paperwork for my children in the mail not too long ago…and now I’m getting letter saying they will be assigned a plan…how do I…

Ma’am what is your social security number and should you not have that number handy I can give you time to find that number.

My social security # is 123456789

and what is your date of birth?

My date of birth is 12/10/I’mgoingtobe40OMG

And ma’am what are your children’s full names?

My children’s names are Count Waffles the Terrible* & Princess Peanut Punk as Fuck*

Ma’am what is Count Waffle’s SS#

Oh… hang on I have his card right on my desk just give me a moment …

Now at this point I was sitting on my bed upstairs. My desk is maybe 5-7 feet from my desk. So I quickly stood up and began to walk to my desk when I heard…

Ma’am you have 1 minute to find the information, if you can not find that information in 1 minute you will have to call back

Oh I have it it right here, my desk is right next to me, let me just grab it…

Ma’am you now have 30 seconds

Uh… that took 30 seconds? There’s no need to be rude or rush me, it’s right here

Ma’am you now have 10…9…8…

It’s RIGHT HERE.. his ss# is 123456789

Now may I have your daughter’s ss#

Yes, here’s is right here as well, just in a different drawer

The same rules apply ma’am you now have 40 seconds to ..

Yes, yes.. you know I was on hold for nearly an hour to talk to you all, you would think you could wait more than a minute..

Ma’am I don’t appreciate your tone and should you speak to me in a manner I find threatening i can end this call at anytime

I have the card right here

You now have 10 seconds…9…

My daughter’s card is in my hand … do you want her #?

Give me the # or I will end this call

Her ss# is 123456789

At this point, I’m FUMING. I felt humiliated. I felt trapped. I felt like she was treating me like the scum of the earth – why? Because I’m on Social Security and my kids are required by my long-term disability insurance, as was I, to file for benefits in order to collect what came out of every single paycheck of mine.

They think we are poor. They think we are just one of those families.

SO WHAT IF WE WERE?

Does this give those helping people in need the right to treat us like absolutely SHIT? To put us on hold for nearly an hour, and then once speaking to us to enact bizarre hold rules and threats of hanging up for anything from my “tone” to my inanbitly to open the drawer in my desk fast enough? It’s not as if I was rummaging through papers for 15 minutes, wasting everyone’s time. I KNEW they would need these things, so I put them in the top drawer and right on top of the pile. It took me all of 20 seconds to get them. Unless you speed count like Danielle.

But let’s think about this from another perspective. What if I had needed my cane that morning? It might have taken me longer to get that 6 feet to the desk. What if I needed my wheelchair? What if I left them on the downstairs counter thinking I was going to make the call from there, instead of upstairs?

Click. Sorry sweetheart. Call back and wait on hold another day. THAT is what would have happened.

Instead, politely as possible.. I gave the woman on the other end of the phone ALL of the info she asked for and in the manner in which she requested it- as politely as I could possibly muster I even offered additional information.

Then, she finally asked me, what was the nature of my call. I could hear her tone. I could tell she hated me, for presumably being poor and needing benefits for my kids. Or maybe, just maybe, she was having a bad day? I was about to find out.

Yes, I’m calling because my children are not in need of MediCal, we have private insurance…

Oh, you pay for private insurance?

It was as if she didn’t believe me.

Yes…my husband and I …

…Oh well in that case Ma’am, Mrs. Vest, you need to call this other number. I’m so sorry but we don’t handle those in my department. Let me see if I can get you connected right away. I’m so sorry you had to wait, and I apologize for my shortness with you. It’s just that we get many calls per day with people trying to, you know, get things.

Suddenly she was Miss Mary Sunshine. And I went from feeling humiliated to feeling complete RAGE…yet my jaw was hanging open. I was knocked entirely speechless.

All because…we pay.

We’re weren’t those people.

The people I was not 10 seconds earlier that had her COUNTING DOWN before threatening to hang up on me. That had her, like a nasty robot from Jerk-Planet, speaking with such a tone I was sweating and fumbling with paperwork and feeling about an INCH HIGH while trying to simply give her information.

This. This is how we treat those in need in America.

This is how we treat those who are the least fortunate – a mother with a disability/deadly disease and kids in need of insurance – as far as she knew- THIS is how we go about treating them.

As if they are a burden. As if they are a total waste of time. As if they are undeserving of any kindness, compassion or even simple curtsey in a phone conversation.

Yes, I learned a lot in the hour-plus as I waded through SSDi, MediCal for my kids this week and I was left feeling sick.

We have to do better. WE MUST do better.

Those who are most in need are the ones also most in need of your smiles, your warmth, your COMPASSION.

Even if it’s a simple phone call attempting to iron out eligibility.

I feel sick to my stomach as I am typing out this story to you, because this woman made me feel not like a mother or woman while on the phone with her, but like trash. Like whatever situation I was in, requiring my children eligible for MediCal, it was most certainly my fault. I most certainly could do something to make it better, and she looked down on me worse than any of those snotty Moms at the Grosse Pointe pool when my Mom would take me along with her to meet up with friends she had who lived in that city.

As I continue to get healthy I am determined to change so much of what I have seen to get to where I am. And when I AM healthy enough to take on some of these challenges, Lord help people like Danielle…because there will be training and re-training and if you can’t get it, eventually job loss. Because you WILL treat everyone you encounter with respect, no matter their reasons for being in the situation the are in.

Our country as a WHOLE needs to learn this lesson, but…baby steps.

Those of us who are in current need have paid into the system and have every right to take it out, but we also have the right to DIGNITY while doing so.

To those of you currently in the system and doing what you have to in order to feed your family, provide them with health care, whatever it is you are doing…know that I believe you are amazing, hard-working, and I am so sorry this is the sort of treatment you encounter.

I promise you we’re going to make this better…make them SEE what it’s like to be us, to walk a mile in our shoes.

They’ll never count down, threatening to hang up on us, again. Ever.

Filed Under: #suckit, #SUCKITLupus

I’m Over Being Ashamed & Voting NO on Prop 46

September 28, 2014 by Queen of Spain 10 Comments

I landed myself in the hospital against this week. Despite feeling relatively well. Ok, that’s a lie. I’ve been doing much better lately.

I just hate to jinx anything.

But as we all have learned with this jerk of a disorder, just when you are lulled into feeling hopeful and happy and excited there is light at the end of this jerk tunnel…your get a dull ache in your lower back and then you start bleeding profusely out of your butt.

What? You thought I’d spare you the fun….oh no, you must be at the wrong blog for that my dear. I have never pulled any punches with my sweet pea readers and don’t intend to tone it down for you all now.

Now remember, I am on some heavy, duty drugs for pain…just my EVERY DAY PAIN. So to have a dull ache in my back makes me a bit concerned. And when it ramps up and becomes doubled over in pain, pain….I get SUPER concerned.

So I had to break down and do what I absolutely HATE to do, and avoid at ALL COSTS…I had to head to the Emergency Room. It’s a Sunday night, my rheumatologist was in Europe and my pain doc was only going to be able to help me feel better if I were in a bed hooked to an IV. My regular doctor would just defer to my rheumy and well, I just had no choice.

There are several reasons I HATE going to the ER or urgent care, not the least of which is the toll it takes on my family, but next would have to be how difficult it can be to get help and pain relief.

You see, being chronically ill means I am on a lot of medication. Like… A LOT OF MEDICATION. More than I am comfortable with and to the point where I have to take medication to help with the side effects of the other medication. Yup. That much.

But understand something, because this is really important: I am treated like a criminal every time I see a new doctor and by just about every government agency around, simply because I am chronically ill and in constant pain.

I jump through so many hoops on a monthly basis to “prove” I am in need of narcotics, that it makes me feel ashamed when they don’t work and I need to change them or I need a higher dose.

SHAME. THEY MAKE ME FEEL SHAME TO TALK TO MY DOCTOR.

And there is a Proposition in California on the November ballot that would add yet ANOTHER hoop to jump through in order to get the medication every single doctor agrees I need, and it SCARES THE HELL OUT OF ME.

On it’s face, Proposition 46 seems like a good idea. And I agree, it was born of a good idea- to raise the cap on one of the medical malpractice limits. All of the other limits are … well, unlimited. If something were to happen to you or yours, you could sue for unlimited amounts. Except in the “pain and suffering” category. That one has been stuck at $250k for a long time and has not been bumped up for inflation. So yeah, it seems reasonable to responsibly raise that limit, at the very least, to keep up with inflation. It seems reasonable to do it in a manner that won’t screw over the small clinics or orgs that, for the most part, help women and children.

Except Prop 46 didn’t go this route.

Instead of putting forth a simple bill that would raise the cap, the powers-that-be put forth a bill that raises the cap immediately and without any clauses or delays built-in for those clinics who will need to absorb the costs (or people or doctors or whomever) AND it tags on TWO MORE huge health care issues-random drug tests for doctors (whaaaaa?) AND a mandate forcing doctors and pharmacists to check the “CURES” database before handing out any hard core drugs for the first time. (Again…whaaaaaaa?)

Of course this dealing with health care, and my condition, I immediately have to check this out and find out how these things will affect my life. What can I say, politics is personal.

Turns out, as happens with MANY of these elections, one of my friends is working on the No on 46 campaign. Odds are if it’s happening in the world of politics, I will know someone working for the candidate or the campaign or the grass roots org or something. This was no exception.

So we chatted and quickly I was sitting down at my kitchen table with Teri Holoman, who is consulting for No on 46. The more I learned, the more frightened I became. And it’s also why I told you the ER story to start this post…because I need to walk you through exactly how all this will go down the NEXT time I go into the ER if 46 passes (please no please no please) and what I ALREADY go through in California as as safeguard for those who are “doctor shopping” or “drug seeking.”

You know, the way I’m treated already every single time I see a doctor who is unfamiliar with me or my case. Which, when you have nights and weekends in the world and a chronic condition, happens way more than you’d think.

Ok so now you are thinking…what could be so bad Erin? It’s to protect people, and kids, and small fluffy kittens….so it can not, possibly be bad. You’ll still get your meds if you really do need them, after all if you had nothing to hide it won’t be an issue for you..plus some big name Democrats are on board and you are a Democrat so what gives?

I’ll tell you what gives. The next time I’m doubled over in pain and I end up exactly where I was, I may end up admitted (without it being entirely necessary) just to get the pain relief I need or I may not leave with the medication I need to get me through the pain until I can see my regular doctors. OR I may get the script and then the pharmacist may deny me the meds I need to get me through the pain until I can see my regular doctors. All of these probably landed me admitted to the hospital to keep those bills coming to my mailbox.

All of these are real possibilities. Because despite what the other side says, or how this may have all started out as a really good idea from a very honest place, the language of the proposition is very clear. It says doctors must “ACCESS AND CONSULT” or be “HELD NEGLIGENT” and get this, the damn CURES database doesn’t even FRIGGING WORK ALL THE TIME and the guy running it says it will basically crumble under the weight of Prop 46 and all these new docs and pharmacists using it rendering it useless and rendering me STILL IN PAIN and with a doc or pharmacist stuck between a rock and a hard place…give me the meds or “be HELD NEGLIGENT…” for not checking the database because it was down or not working and giving me the meds anyway. Let me calm down and be more technical…the state staffer in charge of running the database has called CURES “not sufficient.” Testifying before the California Medical Board, he said that he himself gets kicked out of the database when trying to run inquiries. What’s more, he testified that inquiries into the system can take “anywhere from moments to never.”

Now listen…I GET that this is supposed to protect people from all those folks addicted to prescription meds. I GET IT. But do you have any idea how many OTHER laws are in place to “protect” people from us horrible pill poppers?

Let me tell you exactly how I get my usual meds, maybe that will shed some light on things.

First of all, my regular doctor and my rheumatologist won’t give me anything stronger than my Xanax (which actually falls into this category…) or Toradol injections. If they were to give me the narcotics I need over a prolonged period of time they would have to register me and a bunch of other stuff that goes with me (like, all the proof I need these drugs, etc) with the DEA. Mind you, the DEA gets all of this ANYWAY and even if they do it short term…but regardless, we have me going to a “Pain Management Specialist” who takes care of all these things. It means my other doctors don’t have to deal with all the red-tape and potential lawsuits, and I am in the hands of a professional who can help me as I go on and off being physically dependent on these drugs.

Fast forward to my every 2-3 week (depending on how I’m doing) appointment with my Pain Management Specialist, Dr. Kumar.

It started, long ago, with all of my lab results, hospital records, rheumatology records and general practitioner records being sent over to Dr. Kumar. On top of all of that, and despite all of the very clear diagnosis he was given, he sent me for his own tests that included several very costly MRIs.

Once it was determined I really was sick and had some very severe health conditions, he agreed to be my pain doc…and I his patient.

Now, back to my usual appointment…it starts with this:

Because if he sees I’m on anything other than what is prescribed, or the DEA sees it, I get cut off. Or sent to some treatment program. Actually, he would know we have issues.

When I decided to try medical marijuana to see if it would help, the office manager had to scan in my certificate stating I was legally able to have medical marijuana and it was noted in their records and the DEA’s (again) too…along with the State.

Because my rheumatologist prescribes my Xanax (1mg 3 x per day to counter act the prednisone) this too must be noted and shown in each record, because my pee will show it.

Then he goes over all my recent labs from all the other doctors and we talk about my pain. Currently, because of a recent flare, I’m on a higher dose of the narcotics (methadone, precoset) than I had been on. We had been slowly pulling me down.

After our chat I leave with a hand written script:

…which is copied and noted by the DEA, the State, and each of my doctors. I have to take the script to the SAME pharmacy each time, or else it sets of red flags in all the systems and I get nasty letters saying I might be an evil drug seeking, doctor shopping, pharmacy shopper and the insurance may not pay any longer and big mean government guys may come check me out to make sure I’m ok and don’t need help, or throw me in jail…whichever. I’m paraphrasing but you get the idea.

Now…should I lose any pills, drop any down the sink, have my purse stolen…doesn’t matter. I don’t get any more. I also can not go in a day early, or two days early for my next appointment. I can not be seen by the doctor until the very day that script runs out…if I’m going on vacation, I have to show him my airline tickets and he will post date a script for the exact date I will run out.

So you can imagine when I land in the ER the first thing my husband or I (if capable) always do is hand over the cards of Dr. Kumar and Dr. Caro, my rheumatologist. We ask they be called IMMEDIATELY by the ER doc so they can be told of the extreme circumstances of my illness and my PAIN and know right off the bat I’m not a drug seeker and I’m not doctor shopping.

Some ER docs call my doctors. Some ER docs do not. Some urgent care docs call my doctors. Some urgent care docs will not. They want to see test results first or they believe they know best and will give me “a little something for the pain” to help while we wait for said results.

In California emergency room docs can only give 1ml IV of dilaudid total no matter how long you are in the ER or the equivalent dose of morphine. Because of the amount of medication I take, my tolerance is very high. Morphine doesn’t do anything for my pain and Dr. Kumar, when I’m admitted for pain management, orders me 2-2.5ml of dilaudid every TWO HOURS to get me back under control. That’s on top of my methadone, my lyrica, and percoset for breakthrough pain. That basically means it takes a lot to make me comfy – you know, the dose your average elephant would get- yet the ER doc usually comes in with .5, 2xs, before he finally sees a test result or TALKS to one of my doctors, realizes I’m not kidding, and finds an admitting doctor to give me the correct dose. Notice I said “admitting” doctor, which means I can’t go home. Now you know why I avoid the ER unless it’s truly so horrible I’m worried about my life and my organs and things that are super serious.

Should I end up in the exact same position as I was this week, where it was concluded inflammation (surprise, surprise, this is what LUPUS DOES) was making my lower back hurt and pushing on my also inflamed semi-colon (that’s what we loving call my colon, because Lupus took half of it in 2010 along with a bunch of other organs riddled with inflammation) thus causing the blood to come out of my ass. It was then the doc in the ER realizes he would either have to admit me in order to get the right amount of pain meds to help me NOT CRY, or he might give me what he can in the ER, then take a look at the CURES database he’s now forced to check, if it works, and SEE what I am on and conclude that IV meds plus a script for home (remember Dr. Kumar had been lowering my dosage because I was doing well) will do the trick…but now he’s seen the database (maybe) and doesn’t want to be liable for letting me leave with more narcotics via a script…OR he might check the database, talk with my docs, and realize it’s entirely the right thing to do and hand me the script and let me go home, where I’m much more comfortable and subject to less germs with my compromised immune system. (The last scenario is what happened on Sunday/Monday morning because I begged to not have to be admitted, knowing my immune system is low and he had disclosed he had several cases of MRSA in the ICU and it was a bad time for infectious disease at the hospital…he agreed the hospital was a horrible place for me right now, and if we could make me comfortable at home, that was the goal)

But it doesn’t end there.

I left the ER at 3am Monday morning. The only place open by us at that time is a 24-hour CVS, where the pharmacist would be forced to check the database as well…which may or may not be working…and then he/she gets to either give me the meds as prescribed OR deny me because that’s not my normal pharmacy and holy crap the database says I’m on a TON already…because what pharmacist would want to be liable?

See…that’s when Erin finds out this proposition that started off with good intentions is actually a huge scam by trial lawyers to make more money. They make money by raising the cap, they make money by suing the hell out of the ER doc and the pharmacist and anyone else who gave me a script. They make more money by drug testing doctors, hoping to catch the one bad apple. And they didn’t even get the drug testing part right! They claim to have modeled it after how they drug test pilots…but, um…no. Not exactly. They left out some huge things, that, of course, benefit the lawyers. The idea is to protect people from doctors who are drunk or high, but the prop calls for them to test AFTER an incident has occurred. Uh, how does that protect the patient? AFTER the patient has been screwed? As for those doctors, they screw up just as much as the rest of us, getting hooked on drugs or having a drink too many. The same lawyers fighting for this proposition have allowed themselves health insurance that includes addiction help that remains anonymous, but refuse to allow the same for the doctors. You know, so they can sue them.

Oh as for those big name Dems who have endorsed the proposition? I personally think they should recuse themselves from endorsing either side due to spouses & other family members who are medical malpractice attorneys or just plain old trial lawyers.

This proposition is actually so bad, it’s got political foes agreeing NO is the only way to vote. I’m talking the ACLU and the California Chamber of Commerce AGREEING. Maybe this is the beginning of a new, bi-partisans era in California? With all of us rallying together? Hell bent on defeating this proposition?

I will be 100% honest with you, had this just been a prop about the cap I probably would have voted “yes.” But instead they got greedy. They got greedy and they got sloppy. This thing appears to have been drafted by children. The wording is that convoluted and it’s meaning lost within the addition of drug testing and mandatory CURES checks.

I will PERSONALLY OFFER to help draft NEW legislation that will raise the cap in a responsible manner, which is what the grassroots of this Prop want. I will reach across the aisle and I will make sure this coalition of strange bedfellows remain bedfellows for the sake of those who deserve all they can get if their family or loved ones have been wronged by a medical malpractice. I want this done responsibly, for the right reasons, not by trial lawyers who took this over to make money. That’s not the spirit of this prop and it has become the spirit, thus taking what was a good idea and turning it into a big mess that hurts more people than it helps.

But I will not stand by and wither in the corner, in pain, looked down upon like a junkie by every new doctor I meet simply because they looked in a broken database. I will not give up constitutional rights, even if I’m not a doctor, because my doctor went home on a Friday night and had a drink, or took his legally prescribed Xanax or pain pill after a day of work, and THEN gets a call he must submit to a drug test or be ASSUMED negligent.

But most of all, I will not continue to suffer because I feel shame asking my doctor to HELP ME out of the pain I feel.

No. No. No.

No on 46.

Filed Under: #SUCKITLupus, Feeling YaYa

Wave of Emotion

September 19, 2014 by Queen of Spain 2 Comments

It’s been a rough time around here lately.

I’m still grappling with the death of my Aunt and then the death of my grandfather. Two events that just won’t leave my mind for a second.

Because I spent a lot of time in Michigan this past summer, I’ve even found myself calculating my disability checks and bills and wondering if Aaron could or even would quit his job and move the kids and I back there.

Of course it’s an insane thought. But it doesn’t stop me from looking at real estate on Lake Huron.

The kids and I have started back up at school again and while I crammed in treatment and they adjusted to their new classes, my husband had surgery (for the second time) getting a brand new toe, making it pretty impossible for him to get around.

Then the kids both sucked in all the new school germs and contracted pneumonia and I received terrifying news regarding another family member (but at least this time it’s not looking too bad now…thank goodness). All of this while I work to take care of my three loves, keep up with my own classes, and try and keep the house somewhat in order while trying very hard not to break down and run to the water.

It’s what I do.

From the minute I got my driver’s license I would head down Lakeshore Dr. in Grosse Pointe to just think. I would drive all the way downtown and find a spot under the Ambassador bridge, park, and just look out a the Detroit River. It brought me peace.

When I lived in Dublin I found a bus that would take me up to these coastal, Irish cities. The waves would crash into the rocks and the local would get me drunk on Guinness and everything was ok…because I could see the sea and breathe.

When I moved to Florida I would drive to the coast in-between every shift at work, and after every bad date, or bad memory, or when I just needed to work things out in my head…I even found the one topless beach where I could find a secluded area, sunbathe, and inhale the sea air while I listened to waves, lulling me into knowing everything would be ok.

And then came my home, California. Nothing compares to the relief that washes over me when we finally hit that stretch of the 101 where ocean is visible. It’s as if it puts me back together after falling apart. Somehow making me whole.

There are just so many things I can’t work out right now…from trying to do what the therapist said and concentrating on ‘my’ life to mourning for people and a past that will never be the same.

And I don’t have the freedom to just take off and stare at the Pacific what with LA traffic and all of the above. So instead I bury my head in books and try my best to smile when really I’m hiding in the bathroom daily to let the tears flow.

There are so many things I just want to put back the way they were. So many. And not a single one of them are under my control or even slightly up to me. The more time I spend on myself, as recommended, the less connected I feel to everyone I love. I don’t think that’s how it’s supposed to work.

Yes, my illness seemed to put all of this in motion. So being ME I blame myself. Which is just about as nuts as convincing Aaron to move to Michigan on my disability checks. But emotions make you do nutty things.

So in lieu of running away to the water, I move on to plan B…the other thing I do. I plan. Oh boy do I plan. In fact, I plan to the point of lists and charts and budgets and speeches.

Right now my plan has added a second major to my never-ending quest to finish my degree. Now I’m Journalism and Political Science, Pre-law. The plan being when my body can finally find its way to remission I’ll use my skills to add that extra step to my resume making me unstoppable and ready for world domination.

It will either help with those things I can’t control, or put me in a position to make the landing softer. Because of course I think it’s all my fault and if I can just pay off the house, pay off our debt, buy my parents a house…everything will be just fine.

Why does it always come down to money? Money shouldn’t matter. It really shouldn’t.

I don’t want money to matter. But it does.

I just want everyone around me to be happy. I want them fulfilled and doing what they love and to feel love and be in love and surrounded by love. But I can’t control that…no matter how much I support or give or push. I can’t fix it, I can’t fix others. I can only fix me.

Which usually means staring out into the sea, taking a deep breath, and hoping beyond hope there is light in the darkness and hope in that glorious horizon where the colors blend and bend and the water and sky touch.

Where you can hear the waves in constant motion, yet so rhythmic and soothing.

For my 40th birthday we’re going to Hawaii. I want nothing more than to just feel whole surrounded by the ocean. To put pieces of my life back together. To make things as they should be. Because I’m 40 dammit, and by 40 my life SHOULD be what I want it to be- not what anyone expects it to be or thinks it should be…but what I want.

And what I want, more than anything, if to feel love with sand in my toes and peace given to me from the only element on earth that seems to affect my mood and quiets all the voices in my head.

Maybe it’s because I’m always seemingly panicked or anxiety ridden and rushing around as if the world is on fire…and only water can douse the flames.

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

Now’s Normal

July 22, 2014 by Queen of Spain 3 Comments

Caregiving isn’t easy.

I watched my parents take in my Grandfather years ago. Things changed dramatically.

I watched my Mom care for my father. Things changed dramatically.

I watched my cousins and uncle care for my aunt. Things changed dramatically.

I watch my husband care for me. Things continue to change dramatically.

Chronic illness has many different side effects. But I swear the very worst may be what it does to everyone around the person who is chronically ill. It’s not just the sick person who’s life changes. It is everyone in their family. It is everyone they know. And it’s not a ripple effect…it’s a tidal wave. The kind that pulls everyone put to sea and everyone has to work hard to paddle back to shore.

Sadly, not all make it to the sand.

Of course this adds to the stress of illness.I worry less about my own health and worry more about my family. You don’t want to be a burden and you don’t want their lives to changes, however everyone’s lives change dramatically.

My therapist calls it the ‘new’ normal. I loathe the term. Mainly because I don’t want a ‘new’ normal. I want my old normal back. I want everything the way it was before. Of course that’s impossible, however my goal is to at least get as close as I can to what life used to be like. Becoming healthy enough to return to work, to walk a theme park, to be able to take the kids wherever they need to go and actually participate in any activity a normal parent could engage in- from a walking field trip to just helping in a classroom, filled with all those kid germs.

I want to meet my husband for drinks after work, go out on the town. Attend a concert.

So many things that I could go ahead and do now but would require a ton of planning and accommodations for the ‘just in case’ scenarios that come with chronic illness.

In fact, later this week I’ll be attending BlogHer ’14 in San Jose- but I will have to very carefully plan my days and evenings. The drive alone will be tiring, and I won’t be able to medicate myself until we arrive. Then I will be attending an event at 3pm- which means I will most likely be exhausted and absolutely need rest- rendering any evening actives null and void. Then depending on how tired I am when I awake, we’ll see what we can do. But odds are it won’t be much.

When I think about this ‘new’ normal I do get a bit upset for all those times I never considered how lucky I truly was to not have to be able to worry about a thing- to travel at a moment’s notice and not have to worry about making sure I was rested, making sure all of my medications were packed and ready…making sure I hadn’t just been released from the hospital for the 4th time this year. However I’ve learned over the years to not get angry.

I’m not in control of this disease, all I can control are my habits. So my new normal has meant pool exercise. Eating well. And making sure I’m on top of all my medication.

Of course just when I can see a difference and FEEL a difference, I get thrown a curve by ball an urgent care doctor who is adamant I be sent to the hospital for migraine symptoms that could be a mini stroke. It’s times like these I feel like I’ve failed my family and myself. What did I do wrong? What should I have done after getting a classic migraine, like I’ve been getting since puberty…especially headed to treatment where I knew I might get a little queasy?

Apparently spend the night in the hospital just to be sure all was well.

Every test came back fine…minus my cholesterol which is now high, apparently. Oh, and my potassium which was low, apparently. But the MRI, the CT, the PT, OT, Speech Therapist…all fine fine fine.

So with nothing you can do, you sit in a hospital bed and try not to worry or be upset and accept the ‘new’ normal that disrupts everyone’s lives. The husband that once again has to take off time from work to help you. The kids who will once again act out in some way because Mom was back in the hospital.

If I could make a deal with the devil to rid my life of this…I would. But not for me, all I did was lay in a bed and injected with good drugs. I would, however, take this away from all those around me.

Now I know full well I would go to the ends of the earth for my husband and kids. For my entire family. I’d let them disrupt every day if they had a ‘new’ normal we couldn’t control. It is a no brainer. I just want to acknowledge everything they go through for me…I love them beyond words.

And I hope we settle into this NOW normal and eventually just think of it as normal, with or without Satan.

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

For My Kids

May 7, 2014 by Queen of Spain 1 Comment

Sometimes you just have to tell your doctor some things are more important than staying away from germs, despite your immune system being entirely compromised.

Sometimes you just have to sit down with your husband and discuss the ramifications for your family if you open your mouth on an important issue, knowing full well it’s brought death threats and hate to your door before.

Sometimes you just have to say BECAUSE EQUALITY MATTERS – and say it standing up, not in a wheelchair, without your cane, and hope they are paying attention when it is your turn to speak. Because you are standing up in tremendous pain so they can see your face, and you do not want their pity or their prayers. You want them to LISTEN. You spent the day having lifesaving drugs pumped into your body, and you know some of those starting down from their place on high think are a ‘taker’ unworthy of life because God is certainly punishing you for your wicked ways.

Sometimes you have to cry because any of it is necessary in 2014, two years after a law has gone into effect, that you’re not treated like a second class citizen, that LGBT friends and family are not treated like second class citizens, that STUDENTS are not treated like second class citizens and that your children’s peers are not taught disabled or LGBT American heroes simply do.not.matter. by your local school district.

Sometimes you need to go to a school board meeting and speak your mind.

To be continued…

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

Why Do You Blog? The Answer is Magical

April 17, 2014 by Queen of Spain 9 Comments

So why are you still blogging?

Are you hoping to make money? Become famous? Gain followers? Fans? A book deal?

Are you blogging because you want to share your family with relatives scattered across the world? Are you blogging because you found a community with which you relate? Are you blogging because you need to vent about life, family, friends, kids, partners, exes, bosses, or other bloggers?

WHY are you blogging?

It was a question posed by former-NFL receiver Donald Driver at Disney’s Social Media Moms Conference this past weekend-and it sort of knocked me off my chair.

(The kids enjoying family time at the conference on Main Street U.S.A. at Disneyland)

I haven’t thought about WHY I blog in such a very long time and it has changed over and over again.

At first I was blogging for something to do, to connect with other parents, to find my ‘tribe.’

Then I was blogging as an activist. Political posts ruled the day.

Then it was a smattering of parenting and politics and life.

Then I got sick…and everything changed.

I didn’t know what to blog for a long time. So I just kept people up to date on my health. Until I broke down and began blogging about just how hard it all can be, about just how affected the kids and my husband were by my illness. I began blogging for myself, to just get it out.

Driver spoke to the crowd this past weekend about the motivation behind our blog posts, our tweets, our Facebook posts, our photos. His message was so simple, yet one I fear I have forgotten in the past 10-years as the industry has grown. Are you using your voice for good?

Those of us who have been around the social media block have watched the metamorphosis. We started out as just hobbiest looking for community. Sharing our ups and downs like friends do. As our voices became more powerful some of us just kept doing what we’ve been doing all along, others took the $$$ path to try and cash in on their new found attention. Starting new sites, trying to bring in the big traffic numbers. ‘Monetizing’ was the word everyone loved.

Sure I put ads up on this blog, but I lost out on a lot of opportunities because I wouldn’t write sponsored posts on this site. For me, it just didn’t fit. It still doesn’t. This is my space to share and talk about my kids, my life…not products.

However, with Driver’s words still ringing in my ears, I am wondering where Queen of Spain blog goes from here. I want to make a difference. I want to help people. I want to continue to share the ups and downs of living with a chronic illness.

I am inspired to DO MORE with this space I’ve been given and have cultivated over the years. I’m inspired to make the most of what I’ve been given-and just asking myself the question this big ‘ol football player so easily stated really changed my mindset. WHY am I blogging?

I know the answer:

I’m blogging for myself. I’m blogging for you. I’m blogging to change the world we live in and hoping to bring others along for the ride.

I’m determined to bring back the magic in blogging and the honesty, the transparency, the REAL stories of life and love and loss. Not the ones conjured up for traffic, products, brands, or sponsors.

This space is where my soul and my heart connect with others and I give you all of me- the good and the bad. And I still believe there is a place for that in the industry.

Let’s get back to basics. Let’s get back to storytelling. Let’s get back to connecting with one another just for the sake of connecting, not because it’s required to fulfill a contract by a pr company.

Let’s get back to blogging.

*I was invited to attend the DSMM Celebration. I paid my own conference fees and received gifts during the conference. All opinions, experiences and thoughts are my own.

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

Erin Kotecki Vest on Al Jazeera Talking Obamacare-Why? BECAUSE IT MATTERS

April 3, 2014 by Queen of Spain Leave a Comment

Matters so much I had to speak of myself in the third person!

Seriously though, go check out my interview. Please. Hopefully it will make a difference for someone, somewhere. Enrollment starts again in the Fall.

Filed Under: #SUCKITLupus, Feeling YaYa

40

When You & Your Dirty Kids Are Just Another Number

I’m Over Being Ashamed & Voting NO on Prop 46

Wave of Emotion

Now’s Normal

For My Kids

Why Do You Blog? The Answer is Magical

Erin Kotecki Vest on Al Jazeera Talking Obamacare-Why? BECAUSE IT MATTERS

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