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

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.

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.

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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.

 

Whores & Studs Before They Are Teens

There’s a lot of talk about sexualizing girls way too early.

Many of us have written posts on the topic. Many of us have discussed it over Facebook and twitter. You know, when you are bra shopping for your tween and all you can find are padded, sexy bras. or how some girls are wearing make-up in the 2nd grade. Or how some parents allow their 10-year old to wear short-shorts and thigh-high boots.

Inevitably we talk and talk and blame our culture and society for exposing young girls to the idea they must appeal to men always and even, at very young ages, encourage them to have a boy crush or to smile for the nice men or, in some extreme cases, encourage them to be nothing but wives and trophies for the males of the world.

And while many of us talk to our children about these things, one headline made me realize far too many of us are forgetting the message we are constantly sending our boys:

Young Fan Plays Casanova at Fenway

Yup. That’s the headline you get if you go to share via Bleacher Report the touching story of the awesome 12-year old who gave up a foul ball that came his way during a Red Sox game to the girl behind him. The piece by Ken Chin even ends with “Slick move, kid, you’ve got a bright future.”

But it doesn’t end there. Over at Fanside, Mike Dyce writes, “There is one young Boston Red Sox fan who is showing himself to be quite the stud.” Yup, a 12-year old was just called a stud. Imagine calling a 12-year old girl the equivalent.

I’ll let that sink in… 

On NBC’s HardballTalk we get the headline “Smooth Kid ” and Craig Calcaterra’s commentary, “Everyone’s gonna say stuff like ‘this kid is going to do well with the ladies one day’ after watching this video. But he’s doing pretty well already.”  I encourage you to keep reading for the cougar reference just after. I wish I were kidding.

Sigh.

So as we are using something as simple as a kind gesture to insinuate a child is hitting on another child-not to mention totally cheering on the idea.

But of course with a “wink wink hubba bubba” thrown in because the writers all realize these are kids we’re talking about. But isn’t it just so darn cute?

And that is exactly the problem. The cutesy nudges do not excuse the underlying issues. Just like teasing preschoolers if they have a “boyfriend” or a little “girlfriend” at school encourages the idea they should be on the prowl.

While I almost don’t blame these writers and editors for going for the obvious cutesy jokes, I also wish they would stop and think about how they contribute to the problem.

I’m no prude. I’m not some uptight Mom, holding her babies tight and refusing to allow them to grow up. (ok, maybe a little but not unlike ANY mother) My son is just about that boy’s age. My daughter, just about that girl’s age. I can’t you how many times we’re with friends or relatives or whomever and the minute a boy child stands anywhere near a girl child and they actually play there is an outburst of “awwwwwwwww, maybe they will grow up and get married one day!” All while the Moms of the group start plotting out where they will register the two and which holidays they will spend with which set of in-laws.

I have been so caught up in all of the ways society has been trying to turn my little girl into a little whore, that I’ve entirely overlooked society’s role in prepping my son to step into his role – so much so that I am recalling how just the other night my husband and I were gently teasing my son over a girl (and her family) that we really like at school and how we’ve arranged their marriage.

Guilty and I didn’t even realize it. Just like all these headlines and all these wisecracks.

If we’re going to demand our daughters are allowed to remain children and NOT be sexualized at such young ages, we must demand the same for our sons.

I commend 12-year old Ryan for being a good kid. Way to go Ryan…but dude, no pressure. You were simply doing what everyone should do- be kind, share, and think of others. Way to go.

Ferguson

I, like many, have been struggling with the events in Ferguson, MO.

It’s hard to get the words out, and nothing seems right. So I’m going to first do what is most important right now: LISTEN TO PEOPLE OF COLOR and HEAR their experiences. These are women I know, love, and respect. I think their words really say it all and then some.

Sunset in Ventura

“…it is hunting season for our children and truly it always has been. The world has no love for dark people… Black people. And no matter what I say the truth shows up everyday.”- Babz Rawls Ivy

Kelly Wickham brings our attention to Fannie Lou Hamer. Why? Because Hamer said,
“Is this America, the land of the free and the home of the brave, where our lives be threatened daily, because we want to live as decent human beings?”

Jasmine Banks makes sure that everyone who is “tired” keeps talking and listening…why? Read just a snippet of her status update and then go read more,

When Isaiah came home from Pre-K at only 4 years of age and told me he hated being brown because the little boy he wanted to be friends didn’t like brown people. 

Addison crying because she hates Princess Tiana because she is a frog and not a real pretty Disney Princess.

The lady who looked shocked and asked me if Tobias was adopted because he was light and ‘you kind of look black, but why does he not look black at all?’

How about we talk about how I try to maintain normal life in my very small, very white town? How do I look some of these folks in the eye when I quietly observe their racist and hateful status updates on my newsfeed. ‘Those people are just thugs’ ‘So what if he didn’t have a gun, Black people don’t need to have guns to be dangerous, we proved that with Trayvon.’

You eat our food, listen to our music, and even laugh at the cultural references in our movies. You love the way the feel good storyline of The Help made you feel… you love our stories, as long as they don’t require you to look in the mirror too long, and face the fact that you’ve cherry-picked from our culture the comfortable beautiful parts while we still get to carry the burden of being Black. Still cultural mules to your cultural illiteracy.”

And then Briya, aka Undercovermamma had me sobbing with this,

Last night I called my baby boy just to check in on him. With everything that’s going on, I had an overwhelming urge to hear his voice and make sure that he was okay…and that he knew that I loved him. 
His response was to tell me that I was just being a mom. 
And I said yes. Yes I am. And I reserve the right to be worried because the entire world has gone crazy.

This morning he called me and because I was in meeting I missed his call.
He called Nesto to get my work number and I guess they talked about how upset I’ve been about Ferguson
And how personally I’m taking it because this could happen to him. Or to Nesto. Or to any of the black men in my family.
And then he called me back to reassure me that he was okay, and not to worry.

But I do. Because I love him. Because he matters”

I’m not going to stop talking about Ferguson because it makes many of you uncomfortable. It’s well beyond time we leave our comfort zone in this racial discussion.

 

 

 

Merck for Mothers Will Help Me KEEP HUGGING YOU at Every BlogHer

One of my favorite things about the annual BlogHer conference is being able to physically wrap my arms around women I love. The rooms are filled with blogger after blogger, all of whom I want to just tackle and hold tight when I see them. What can I say? This is what happens when you grow close in a community of women.
Now imagine if in the next 10 years, nearly 3 MILLION of those wonderful women we love- mothers- will lose their lives if we don’t do something about preventing maternal mortality.
That is exactly what the Merck for Mothers campaign set out to do at BlogHer ’14 by bringing a rock star line-up of speakers to discuss just how dangerous it can be to simply give birth in this day and age. Jennifer Albert told her story and it sounded a lot like MANY of our stories… including the one I told you all about before we even left for San Jose. Except hers was even more like the story of one of my best friends and a blogger I LOVE hugging every BlogHer Con… Sarah, from Sarah and the Goon Squad. Many of you may not know that Sarah, like Albert, lost a ridiculous amount of blood after giving birth to our favorite internet twins and we nearly lost her. She could have been a statistic. She could have been one of the many deaths Merck for Mothers is working to prevent.
Imagine not hugging Sarah at BlogHer.
And as we learned, even our wonderful United States is not immune to maternal mortality. You might want to be sitting when you hear what they told us but… the US ranks #64 in the world for maternal mortality. “We’re #64!!!!” doesn’t exactly have a nice ring to it, does it?
In fact, every 10 minutes a woman in the United States nearly dies from complications from pregnancy and childbirth. The three leading causes? Preeclampsia, embolism, or, like Sarah and Albert, Post-Partum hemorrhage. Put them all together and you get Merck’s PEP talk. At the event women in the room told their stories and honestly, I’d love to hear YOURS.
A virtual roundtable for those who couldn’t make it to San Jose.
One of the things that seems to stand out most is we women feel totally off-guard with pregnancy and delivery complications. Many of us agreeing we just don’t have enough info. I also think WE think it’s something that just happens in 3rd world countries. Places far, far away that can’t possibly be as industrial as we are.
Let’s change that.
If you have a birth story to share or not, you DO have information to share that can help save women’s lives.
Take the pledge just like I did and tell me who you will now have a PEP talk with… it might be your sister or your co-worker or your niece. I chose my daughter, because the more she knows now and the earlier she knows it, the better.
I look forward to your stories and who you would choose to “have the PEP talk with” because I want to hug all of you for many, many more BlogHer conferences to come.
My huggin girls
Learn more about Merck for Mothers and follow them on Twitter and Facebook!

Summer Boredom Hits….

My daughter hasn’t gotten out of her owl PJ’s since Monday.

My son hasn’t brushed his hair since Tuesday.

My Goddaughter has binge watched three shows on Netflix.

Yup, we’ve hit that part of summer where it’s not quite time to go back to school, but everyone is a bit bored. I’m in treatment, leaving them at home and me hooked to an IV.

So I’m devising a plan to get everyone OUT of the house and active lest the first day of school arrives and everyone begins to whine that we did nothing and went nowhere.

First of all, if they say we did nothing and went nowhere…they are big ‘ol liars. We were in Michigan for the start of the summer, where the kids took a side trip to West Virginia. The girls and I went up north to San Jose…and…ummm…we’ve done a ton of swimming in the pool.

Ok so the cross country trips were family oriented because of illnesses and very sad goodbyes, not exactly ‘vacations’… in fact the Michigan trip was such a blur to me and filled with so much emotion I don’t remember a lot of it unless reminded. It was hard. Certainly not a vacation, even if the kids were mostly shielded from it all and had some fun.

The San Jose trip was fun, but there were several incidents along the way (allergic reactions, car sickness, and my grandfather passing away) that pretty much shot that as a ‘real’ vacation as well.

So I’m putting in media requests for Disneyland and Universal Studios – and we’re looking at a trip to the Santa Barbara Zoo. ANYTHING to make it seem like we’ve had a ‘vacation’ this summer. I have some points I might be able to use for a hotel. Maybe we can find a suite, bring the dog, and hit the beach and everything. Who knows.

Kids in pjs

And these kids really need to get the heck out of their PJs.

Wish me luck. BTW I wish beaches rented scooters and they were all lined with cabanas. Adding my illness to the mix makes all of these things even more challenging but if there’s a will…there’s a way.

My Grandpa

Sigh.

To say it’s been the ‘summer of change’ could be the largest understatement ever around here. So much has happened in EVERY corner of our lives that I feel an upheaval like never before in my life.

As we drove to San Jose, a week ago today, I learned my beloved grandfather passed away.

It was one of those moments I knew had been coming for the past decade, it seems…yet I was almost unable to process it as I stared at the open road ahead.

I don’t have many words yet to describe how all of this is making me feel. I can say, in all honesty, my Grandfather has only wanted to be with my Grandmother since the second she passed away when I was a little girl. So I’m taking comfort in knowing he is now with my Grandmother. At least I like to pretend that’s where they are, regardless of my beliefs.

So I’m going to just pretend for awhile longer, because all of the reality heaped on us this summer is too much. Good or bad news, it’s all just too much.

Grandpa & Me

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.

Sigh

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.