All I Want is a Garden

Denial, anger, … acceptance? Or is there one between there?

Meh. I’m somewhere between denial and anger as my CDiff has returned despite the over 90% success rate of the transplant I underwent before the 4th of July. We will try another tried a second one, upping my chances to 98%, but that one failed as well. Leaving me in this hospital for 17 days and counting.

17 days of wondering why me.

17 days of worrying.

17 days of continued bad news and frustration and stress.

Here is the thing…all I want to do is plant my tomatoes and veggies. This has been the first summer in 10 years of living in this home I haven’t gotten my garden in on time. While planting now wouldn’t be ideal, it’s also not bad considering our climate has been entirely messed up.

Yes, in this epic, multi-year battle which now includes a fight for my life with a super bug, I just want my garden in place.

My garden in place = normalcy.

My garden in place = hope.

My garden in place simply soothes me and makes me feel as though it’s all going to be ok.

For the first time in all of this I’m honestly not sure how everything is going to turn out. I’ve been sure, over and over again it was going to be ok. But right now there are so many other things going on and so many lives hurting and just so MUCH for the first time in my life, I’m not sure even my superwoman abilities are grand enough to make all of this ok.

So yeah, I sent myself some flowers at the hospital because I deserve them. I remain grateful for family that will show up in 24 hours to help when things go south. But I need to find a solution that doesn’t disrupt everyone’s lives except mine.

I’m still searching.

I don’t know if my garden will be planted. I don’t know if my search will lead to anything I can control. But I am still here. And I guess that will have to do for now.

Dealing With a Load of Crap

Humiliation is laying in a hospital bed, after 10 days of nothing but towel baths, your hair unwashed and crumpled in a bun, your back sweating against the plastic under the sheets…and opening your eyes to feel yourself covered in shit. Someone else’s shit.

The nurses are kind and wonderful. They clean you up and pad you with towels and an adult diaper, reminding you to not get up and to just ‘let it out’ while laying flat.

Cdiff is no joking matter, as much as I’ve been trying to laugh about all of this. It kills tens of thousands of  Americans per year and after two rounds of failed antibiotics I was beginning to worry I’d be a statistic.

My UCLA gastroenterologist Dr. J. had offered an experimental treatment to rid me of my now 2nd bout with CDiff, one I may or may not be open to because of it’s unusual nature.

Erin, I think we should consider a fecal transplant. We get our frozen specimens from the East Coast, they are screened just like any blood or tissue or organ you would receive, and we place the fecal matter into your intestines and allow the new and good bacteria/flora to combat the disease. 

Yes. I had someone else’s poop placed way up into me. Apparently this isn’t anything new. It dates back several hundreds of years in China. But more importantly it has an over 90% success rate and all signs indicate I’m one of those successes.

This could change everything. My entire immune make up.

I want to have hope and frankly, I have very high hopes.

This could change my life.

I’m scared. I’m tired of getting my hopes up and becoming ill over and over again. But this is different. This is huge.

I should keep myself cautiously optimistic. But instead I have huge hopes.

Have them with me…because it’s all I have right now.

God in my Grilled Cheese


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.


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.”


“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??”


“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.



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.


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?


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.


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.


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

So yeah, that


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.




I’ve been wanting to write and write and write and write and write…

I turned 40. 

I don’t feel much different. Or older. Minus my body continuing its march to disintegration. But mentally 40 feels much better than 20. Even 30. I actually like getting older.

We went to Hawai’i as planned and it was amazing, as planned. And, as if as planned, I landed in the hospital upon our return.

I have a really bad habit of going and doing something awesome and then having to spend a few days in the hospital because of said awesomeness. This time I can honestly blame a combination of the shingles and travel. Had it just been one or the other I would have been fine. But… no. That would be too easy.

But back to my awesome birthday in Hawai’i. I fell in love with shaved ice. I finally got myself a Disney Dole Whip (they have them at Aulani… no line… swear to God) And I loved nothing more than sitting on the balcony in the morning and watching the ocean waves. Admittedly I didn’t want to leave.



I even asked a friend to just bring the dog. I told the kids we could make shell necklaces and sell them to tourists. They usually look at me like I have 4 heads so…no worries. I even got into a rather cold ocean at 9am and swam with some dolphin pods and saw some sea turtles. I couldn’t believe how many were just zooming by right under us. To watch the kids go from afraid and tentative to nearly screaming through their snorkels was pretty fun too.

In fact, the entire trip I think I delighted in just about everything the kids enjoyed. Simply because they were enjoying it.

I think that is what 40 is all about. Watching those you love enjoy the wonder of the world around them. Having them burst into the room talking so fast about paddle boarding with Dad you can’t even keep up or hearing about the fish swimming around their feet and the crabs that were snapping their claws just inches from their faces and oh by the way here’s another shaved ice.


Yeah. 40 is much like today. Christmas. Where I love seeing everyone’s face as they open their presents. I love seeing the kids peek around the corner of the landing and then around to the stairs…and watching their eyes grow wider and wider as they realize and recognize familiar sights under the tree.

40 also means the three days in the hospital were painful and upsetting. 40 also means I recovered in enough time to see the kids perform in their school winter program, attend their end of school parties, and then catch a stomach bug that knocked me out for 24 hours.

40 is making it harder to fight. Its not that I don’t want to fight. My age is just making it harder. The recover is a bit slower. The punches I’m throwing back aren’t landing as often. I’m still landing them though, don’t worry. In fact, I’m doing well but no one believes me. I guess it’s hard to believe a woman in the hospital or fighting a stomach bug.

The truth of the matter is despite its hardships, 40 is my favorite so far. I know who I am. I know what I enjoy. I know what I need to do.

If there is one gift I wish I could give everyone this Christmas, it would be the gift of knowing who you are, what you enjoy and what you need to do. If you are younger than 40 I hope you don’t have to wait this long to figure it out and if you are over 40 I hope you’re looking at me laughing because you know how much better it gets from here on out.

Now if you will excuse me, I have a new plan to concoct… something about shells, necklaces…and shaved ice. Lots and lots of shaved ice.

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.


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.


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.