Wave of Emotion

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.


Now’s Normal

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.

For My Kids

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.

You can't hear Happy Birthday on the morning of your #9th b-day without a brother squeeze #allhailhala

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… 


Why Do You Blog? The Answer is Magical

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.

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

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.

Pure Michigan Longing


Every so often it hits me like a ton of bricks.

Maybe it’s because I still, mistakenly, call it ‘home’ when I’ve lived in Southern California for 15 years. My children are California natives.

Maybe it’s because my Mom was just here, my brother and father just spent a few weeks there, and my Dad is now here to help out.

Maybe it’s because everyone is talking about the new parody ad featuring Pashon Murry, Detroit Dirt entrepreneur and mistress of awesome.

Maybe it’s because it’s Spring Break time and I can’t help think about how we would escape the cold and drive to my Grandmother’s in Florida, stuffed into the back of a station wagon with my cousins while the weather went from gray muck and sleet to sticky, hot swamp.

Maybe it’s because of March Madness, and my school is playing and we’re all cheering and I’m longing to see that frozen tundra I was forced to walk from Holden Hall to class in East Lansing.

But mostly, it was this photo, part of the website highlighting Murray, that drove me over the edge and pushed me well past the boiling point.

I miss Detroit. I miss metro-Detroit. I miss everything about it and I want to be there to watch it change once again into the amazing city I adore.

I can see the Ambassador Bridge in the background, my gateway to Windsor and Bloody Caesars and shopping and my good Canadian friends.

I can remember those train tracks under the bridge area and how I’d park there, top down on my car, and listen to the Detroit River go by with it’s ‘Frasiers’ (as my brother called them) honking loudly and fishing boats. The stars in the sky, still visible despite light pollution from the factories on the river, and the lack of police- they had better things to do than give a damn about a girl parked in the wrong part of town listening to music by the river under the bridge.

Now that area is part of Detroit renewal. And I long to be more than just an ‘advisory board’ member from afar hoping to help from 3k miles away.

I want to be there, live there, get my hands dirty and say ‘we built that!’

I want to complain about the snow and drive my daughter an hour to horseback riding lessons on I-94. I want to take my son to Eastern Market and show him the locally grown produce and flowers and watch his eyes pop out of his head when he realizes this can happen in a city atmosphere.

I want to take trips ‘up north’ for sledding and fun.

I want family nearby to help when I can’t get out of bed or make dinner or end up in the hospital. And when in that hospital I want to recognize the faces and the friends working to keep me comfortable.

I want my kids to know what it’s like to have roots in Hamtramck – to show them the Catholic Church I grew up in and to have them understand this is their legacy too. They can see the beer tent and enjoy the elephant ears and maybe have some history given when I say ‘and this is where my Aunt gave me this rosary, which I now give to you.’

I want to buy a home in one of the renewal areas and work to build it back up to it’s once mansion like glory.

I want water all around me again, putting out the fires in my heart and mind and keeping me calm. The lake I can see daily out a window or on my drive, the river always there, everything within a walk if needed.

Tis the season for Friday Night fish fries and Saturday morning hangovers. Men leaving to hunt, women laughing at their excuse to go drink in the wood for a day or two.

There is also so much I don’t want, and don’t miss…but I need to be part of this solution in a more tangible way than advising on boards of startups trying to make it in the D. I want so much more.

…but it’s only a dream. My house by the river/lake, my chance to help, my ideas that we’d ever leave California.

Husband’s work is Los Angeles specific. My children are in a wonderful school well suited to our needs and our family, and I can’t imagine something like that exists in the Motor City. And then there is my treatment and my doctor. I’m sure I could find another. But it would be hard. It took me 4-5 doctors to find him. And no, I’m not forgetting the cold and the winters. The gray that sucks the life out of you because you long for the sun and not slush.

I’m also not stupid, I know once the glitter wears off and it’s just life again, I’ll be annoyed we live close to family who probably will just let themselves in the door without knocking. Well, the ones that drive me crazy. The others I will WANT to let themselves in and be grateful they are near would always knock. But then there are the others who will say and do things in front of my children I disapprove of and drive me insane. Giving the kids a glimpse of the reason I left and giving them a reason to leave when old enough.

However if given the chance, if the opportunity were there…I’d lobby to move our little family near where I was born and raised.

In the meantime, I will deal with this gnawing at my stomach that we need the fresh air and cold and water water everywhere. The pit of my stomach churns with the pang of want every time I see Pure Michigan commercials2730188969_92d497aae2_z and I dream of a home built from logs, on the banks of one of it’s purely Michigan bodies of water…small town nearby for necessities but mostly just my family and my loves for the sea. I could heal, I could be calm, I could put the pieces back together and figure out where it all went wrong. I could homeschool. Or try. I could show them such beauty in their own backyard. Oh and the garden we’d have! The joy of seeing Spring peak through the snow and actual seasons.

Maybe someday. In the meantime, I will continue to do all I can from afar. Because I care more than I can put into words what happens in metro-Deroit and the city. I care more than I can put into words about every body of water from the U-P on down. I care about Detroit. I care about Michigan. I care about roots.

And it’s never going to go away.

Betrayed by the President & Obamacare? Try SAVED Instead

My KINGDOM for a $373 a month premium and ONLY $1,500 maximum out-of-pocket in order to take care of myself and the Lupus inside of me!!!

That is what fellow Lupus sufferer Emilie Lamb is complaining about as she blasts President Obama over her new health care plan, forced upon her under the Affordable Care Act. She’s the star of a commercial attacking “ObamaCare” and is giving interviews left and right slamming the President.

Tennessee resident Lamb is one of the few who received one of the now infamous letters from her insurance company, CoverTN, telling her she will not longer be able to keep her plan because it does not comply with the landmark legislation.

But let’s break down the coverage she is so upset to lose, because Lamb is ANGRY at the President, even attending the State of the Union as a guest of Congresswoman Marsha Blackburn.

CoverTN was run by the state of Tennessee. Hmmm, right away I’m raising an eyebrow, as usually those against “ObamaCare'” don’t want “government run” health insurance. Yet Lamb clearly doesn’t have that issue. Good. So let’s move on.

What was the great thing about CoverTN? According to Lamb, “The coverage was perfectly suited to my unique medical condition. It offered me low premiums, a low deductible and low co-pays for my regular trips to doctors and specialists. This plan was perfect for someone with my unique medical condition and limited financial means.”

Yes, Lupus is a unique medical condition and can be very, very expensive for those of us that suffer from the disorder. Lupus has you bouncing from test to test, doctor to doctor and ER to ER.

Lamb says she had low premiums, awesome. How low? $57 a month. WOW. That’s AMAZING. How low was Lamb’s deductible? She doesn’t say. How low were the co-pays? She doesn’t say. Low prescription coverage? Lamb doesn’t say. There is no mention of a maximum out-of-pocket from Lamb. Something KEY to us Lupus patients as most of us hit this maximum every year due to the crazy high costs of all the drugs and treatments we need in order to keep our auto-immune disorder in check. To give you an idea, I have hit my maximum out-of-pocket every single year since my Lupus diagnosis in JANUARY of that year, after my FIRST TREATMENT.

January. I’m not kidding.

Mine was $6,000 for an individual and $12,000 $18,000* for the family under our old plan. We’re saving $2,000 in that category on our new ACA plan and I was THRILLED. Yes, that was a SAVINGS. So to have my maximum be $1500 like Lamb’s…WOW, I’d be crying tears of joy and frankly licking the President’s boots for saving us so much money. I’m jealous.

But, like most Americans, we’re all on a tight budget. So I wanted to figure out just how much more Lamb is paying under ACA and why she’s so upset. She claims she’ll be paying at least $6,000 more per year.

$6,000 was my maximum out-of-pocket so again, I’m jealous.

I know we all have different incomes and an extra $300 a month isn’t easy for anyone. So I headed over to CoverTN to try and figure out what her old plan was all about and why she thinks it was the be all and end all of Lupus coverage. I quickly learned CoverTN was, by far, the scariest type of coverage someone with a chronic illness could possibly have. The only saving grace was it was affordable for those who simply couldn’t afford anything else.

You need to understand something about Lupus patients. We are chronically sick. Like…as in, all the damn time. That means we are CONSTANTLY in and out of the hospital, in and out of the ER, at our doctor’s office, undergoing treatment, missing work, having tests done, undergoing X-rays and MRIs and really weird brain tests to make sure we haven’t lost any cognitive skills. We accumulate thousands upon thousands upon hundreds of thousands of dollars in medical expenses per year. That means we NEED an insurance plan that has things like NO annual caps, NO penalties for pre-existing conditions and NO waiting periods as we get SICKER while we wait and NO lifetime limits.

Guess what CoverTN had? You guessed it, all of those things I just listed. In fact, in announcing they are no longer going to offer the program, they lamented their inability to screw over the chronically ill: “…those that administer the Cover Tennessee programs, can no longer implement annual or lifetime limits, institute a waiting period for pre-existing conditions, require a ‘go bare’ period, or deny an individual coverage due to a pre-existing condition. Insurance companies must also cover preventative services without any out-of-pocket costs to the member.”

But it gets worse for a Lupus patient who had CoverTN, “CoverTN is a limited benefit program that has a $25,000 annual limit.”

HOLY SHIT (sorry, but this deserves a curse word) $25,000!!!!!

Just ONE ROUND OF TREATMENT FOR MY LUPUS COSTS ALMOST DOUBLE THAT. $44,000 is what was billed to Aetna for one round of IVIG for me. That’s what I get EVERY 2-3 weeks!!!! That doesn’t even count the Rituxan I receive every four months or the 17 medications I take monthly or the co-pay every time I go see my doctor or the labs every time I go see my doctor. Just ONE of my treatments ALONE wipes out everything CoverTN had to offer me.

I would hit CoverTN’s $25,0000 annual limit the first week of January. 

I would also hit their lifetime limit. Accrue their penalty for having a pre-existing condition. Have to undergo a waiting period with NO HEALTH CARE  just to QUALIFY and have to pay for basic preventative services of which are ESSENTIAL to keep my system healthy to fight Lupus.

Now, maybe I am an extreme case and Lamb is a minor case. She is, after all, working. She says in the article she’s taking on a second job. My Lupus does not allow me to work.

However, according to information given to me by the Lupus Foundation of America the mean annual direct costs of people with lupus ranged from $13,735-$20,926; the costs of those with and without nephritis ranged from $29,034-$62,651 and $12,273-$16,575, respectively. (source)

That means Lamb’s CoverTN health care was essentially a tiny notch above catastrophic coverage- if that. Her new plan actually will help her should she have a Lupus flare. Except Lamb says, “For me, the impact of ObamaCare is a health plan that is both unaffordable and uncaring. For a law named  ‘The Affordable Care Act,’ this is both backward and perverse.”

For those who don’t know, I was released from the hospital at the end of last week. Lupus flare.

Our new Affordable Care Act plan info was given to the admitting people as I cried in the emergency room, knowing full well I was going to be stuck in the hospital for days. I waited to hear the usual “That will be $500 for your ER copay, your deductible and other bills will follow…would you like to pay now or should we bill you?”

Instead I heard ‘That will be $150 for your ER copay, you have no deductible. Would you like to pay that now or shall we bill you?”

Uncaring? Backwards? Perverse? I shudder to think what would have happened to Lamb if she found herself being admitted to the hospital for a Lupus flare under her old plan.

Unfortunately Emilie Lamb doesn’t see it this way. She went on to say “When you were on the campaign trail, you promised that ObamaCare would help me with my medical problems. You promised that people like me with pre-existing conditions would be better off. And you promised that if I liked my health-care plan, I could keep it. Mr. President, you’ve now broken all of these promises — and not just to me.”

Except she couldn’t be more wrong. She now will be able to receive the expensive treatments to help with her medical problems. She won’t be discriminated against for her pre-existing condition.

However Lamb is 100% correct in that she did not get to keep the health care plan she liked, and I, for one, am glad.

But what of that extra $300 per month? Believe me, I’m not dismissing the extra cost for Lamb. So I took a look at what was available, with the best estimates I could make from what she has disclosed publicly, and plugged it into HealthCare.gov for an estimate on plans she could have chosen for less per month. Even the minimum plans would be a step up from the CoverTN plan she loved. Some of the bronze and silver plans were as low as $137 a month NOT including the tax credit Lamb would qualify for, easily putting her in the $60 range- the same amount she way paying previously with BETTER coverage.

I also spoke with my rheumatologist’s office and they confirmed there are several programs for Lupus, RA, Fibromyalgia, and other patients with auto-immune disorders to help off-set their costs. There are a handful offered through my doctor who partners with various organizations, so I would highly suggest Lamb check with her rheumatologist for similar.

Emilie Lamb, I am sorry you feel betrayed by President Obama. I just hope in time you will see no one is trying to ruin your life by forcing you to give up your bare-bones health insurance. In fact, it’s exactly the opposite.

Should you happen to read this, I am happy to help in any way I can. Something tells me those in the White House you call uncaring and perverse are willing to help too. Whether you realize it or not, they already have.


 *cost of our Aetna plan family maximum revised after double checking the photos I made available of our plans on my original enrollment post & subsequent media coverage 

The Lovers, The Dreamers, & Me

I caught myself tearing up at the Muppet movie tonight.

Kermit opening the drawer and pulling out his torn photo of Miss Piggy. Piggy showing up with her half of the photo. The whole gang singing Rainbow Connection. Had the kids not been in the room I probably would have been sobbing. Yup, that’s where I’m at. Muppets making me cry.

We had Han Solo and Princess Leia on our wedding cake…but I nearly lobbied hard for Piggy and Kermit. Stupidly I didn’t want to be the ‘pig.’ Truth is I’m part Leia and part Piggy, thus making the choice nearly impossible.

My cousins and uncle would make fun of me a lot growing up. I never really fit in with their world, or the immediate world of my blue collar block. Even my best friend called me a hippie all the time and I’m pretty sure hung out with me just to see what might happen next. Hippie never fit, but it was probably as close of a description as one could come up with for my….shall we say…uniqueness back in the day.

I’m not feeling very unique these days. In fact, I feel downright boring. Ordinary. Normal.

For some reason this annoys the hell out of me.

I take too much pride in grand accomplishments I think and it’s my downfall. It makes me one hell of an employee or friend or science experiment, but it probably pains those closest to me. There she goes again, with one of her HUGE ideas that will end up either causing HUGE headaches or HUGE laughs or HUGE pride or HUGE shame. Never in between.

It can make you love me or hate me. I understand.

Now. Well now I’m finding out how to still be me. Funny how you never stop learning about yourself and you never seem to stop trying to be the best of what you remember of yourself after a ‘crisis’ as our therapist keeps calling it. The ‘crisis’ of me being sick. I’d argue it’s less of a ‘crisis’ and more of a ‘shit show’ but…I digress.

It’s hard to maintain the fabulousness of Piggy when you can’t even find clothes you like to wear, and despite hot flashes and sweats from medication you want at least 3/4 sleeves to cover the never ending bruises from IVs and blood draws OR stretch marks on your arm fat.

It’s also hard to maintain leadership over the rebel alliance and a know-it-all determination to fight a war, be it over the checkbook or homework or health care reform, when your body is fighting a battle against itself.

But then again there they were, Piggy and Kermit, reminding me that someday we will find it and I felt like just maybe they were right. Stupid muppets giving me stupid hope thus making me fight back tears as I sat watching with the kids.

Will we find it though? I’m used to the waxing and waning of my disorder now. The spurts of good weeks and the crash when I end up hooked to a leash and fanny pack pumping antibiotics into my system. Or awaking with dread when instead of being able to easily roll over I feel that all too familiar shot of pain from head to toe and realize I’m laying in a pool of sweat, totally unable to get out of bed without grabbing the ends of the sheets and heaving myself over the side until gravity begins to help and tosses me to the ground.

So what do I do? Only what I can. I start school again and hope it impresses as much as some of my more ‘grand’ undertakings…wanting to deck the family out in green and white because it’s all I have to be excited about. The family pretty much rolling their eyes because, let’s face it, it’s NOT as ‘grand’ as they are used to from me.

I get upset they don’t seem excited for me and pout but the only thing in my life making headlines in this house is if I’m capable of taking care of them all or not. Can she cook dinner? Go to the store? Do laundry? Because when it comes down to it, all of those things affect them the most. NOT if I can keep up with two online classes at Michigan State, but if I can get up and make hot cocoa and scrambled eggs or if my husband has to do it. The practical stuff. I do not blame them at all. Those things are hugely important and exactly what healthy families take for granted every single day. Because if Mom can’t do them, SOMEONE ELSE has to. The good thing, if there is one, is the children are becoming more independent. Especially my eldest, who now prides himself on toaster and microwave use. My youngest, being a bit more like me, would rather make her own breakfast anyway because it means SHE did it and SHE is in charge and SHE needs NO ONE’s help EVER…yeah, that’s my fault.

You don’t really ever think about the mundane parts of your life until you can’t do them anymore. At least not reliably or consistently. When is the last time the day was planned around how you acted walking down the stairs in the morning?

One of the things my daughter wanted for Christmas was her room ‘decorated.’ That meant cleaning out her closet and organizing things. It was a lot of work. Each time I came into her room to help the kids would get upset and visibly worked up and worried because I would begin to huff and puff. My face red. Sweat. Lots of sweat. They both asked if I was ok, over and over, and I truly was ok. Just adapting to actually ‘helping’ and bending over to pick things up and MOVING my body. Eventually I began helping when they were busy elsewhere in the house. It was too much for them and they were too upset by my physical appearance. Some days I couldn’t do a thing. Others I could bag up stuffed animals currently out of favor or fold clothes.

NOT a problem Piggy or Leia ever had. To have to do their work away from the prying eyes of others because they were causing anxiety. Granted everyone always avoided Piggy until it was time for her ‘big number’ but that was because she was a pain in the ass.

I liked it better when I was avoid because I was a pain in the ass.

And then comes the resentment. I’ve changed their lives in a way that wasn’t planned and causes their life to be affected. Moms/wives aren’t supposed to do that. We’re supposed to be the ones who help when that shit happens to everyone else. For those who don’t know Aaron had surgery over the holidays and it was almost soothing to have to take care of him. Myself included. The roles felt…I don’t know..normal? Did he need anything? Could I bring him a drink and his pills? Insisting his foot be propped up higher and sending kids for more pillows. Hell, I was HAPPY fetching beer and making him a ‘sammich’ because I COULD. How ‘grand.’ Sigh.

But then again, that’s where those Muppets came in. Piggy and Kermit piecing their wedding photo together after their crisis reminding everyone that anything is possible, that someday they WILL find it, the Rainbow Connection.

We were told the first few years after diagnosis are the worst. All the trial and error and frustration before finding it. Finding the right cocktail, the right life balance, the right mind-set. Finding the Rainbow Connection.

My Rainbow Connection includes a somber victory. The judge’s decision came last week and we’ve succeed in declaring me, by law, completely disabled.


An invalid at 39-Or just making another grand project out of thin air? Remains to be seen. But it has taken some of the pressure off around here. Which was wonderful if somewhat humbling for me.

Leading me straight back to the singing Muppets. Straight back to myself sitting on the edge of the bed trying not to show my shoulders shaking as the tears wanted to roll out. I have to think we’ll find it,  although it probably IS magic. As long as I keep hearing it too many times to ignore it… sometimes hope is all you have.

Crossposted at As Dreamer’s Do