God in my Grilled Cheese

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

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

Hang on, let me back up.

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

Catholic, I guess?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Point Team Chaplain.

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

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

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

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

“Would you like communion today?”

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

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

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

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

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

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

Bring it. 

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

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

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

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

Dramatic pause.

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

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

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

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

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

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

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

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

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

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

Sweet Jesus FINALLY!

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

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

…and out the tray goes through the door again…

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

Point Team Flying Spaghetti Monster.

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

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

Devilish grin creeps over the Chaplain’s face.

Point Team Chaplain.

We both laugh.

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

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

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

Point Team Flying Spaghetti Monster.

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

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

Point Team Chaplain. Bastard!*

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

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

Then my son and husband arrive.

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

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

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

Okkkkaaayyyyyy.

“Did anything MORE significant or miraculous happen?”

Seriously? Did he just say that?

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

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

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

What.The.Hell.

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

Game. Set. Match. Team Chaplain.

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

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

 

Ashes

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

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

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

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

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

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

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

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

Why?

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

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

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

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

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

The Fairy Godmother and My Glass Slipper?

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

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

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

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

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

Cinderella: Miracles?

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

Cinderella: Magic wand?

Fairy Godmother: That’s strange I always…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So yeah, that

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Three hospital stays since returning from Hawaii. Not entirely how I envisioned the past 6 weeks.

I’m coping. I’m trying hard not to fall into that dark place and I’m taking solace in words from the neurologist during my last stay…things will change, and this time, next year, I could be a very different woman.

This is chronic illness.

How are the kids and husband coping? Sigh. Can you hear the wave of guilt hitting me as I type that sentence?

I thought, instead of dwell, I would just say that I’m ok. We’re ok.

I will know more Monday and I will know if that promise…that hope…that doctor really can change this life of mine.

In the meantime, go check out our December vacation where, for at least a short while, I felt like I was whole.

Well, almost.

Getting there.

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40

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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.

 

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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.

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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.

When You & Your Dirty Kids Are Just Another Number

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.

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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.

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.