#SUCKITLupus

The Tale of the Mommyblogger Who Is No Longer a Mommy

March 16, 2016 by Queen of Spain 1 Comment

I’ve started and stopped this post about a dozen times over the past 8 months. Not from writer’s block…no, that hasn’t been the issue. Not because of my health or needing time to really concentrate.

I’m a mommyblogger that is no longer a mommy. The kids, they call me Mom now. Usually with an eyeroll, a groan, or a shoulder shrug and sigh.

When they called me mommy I was enveloped by little arms and sticky hands for a hug that would last and last. They would last so long I carried them and rarely put them down.

I’m a mommyblogger who is no longer a mommy and it hurts.

A photo posted by Erin Kotecki Vest (@queenofspain) on Jan 29, 2016 at 7:07am PST

Now when I write about the kids, I ask their permission first and they get final review with a clear cut ‘yes’ or ‘no’ when it comes to hitting the publish button. Having lived their entire lives in front of my audience, they remain used to me sharing so they rarely say no. But that doesn’t stop the guilt. If they do say yes I still pepper them with questions to make sure they are cool with what I’m posting. This is their life. They deserve a say. They deserve to have their voice be heard in my piece and they deserve total control over what I do or do not disclose to the public.

We’ve entered the next phase of Mommyblogging where our kids now have blogs or vlogs of their own. They have joined online communities in Minecraft and Roblox and Animal Jam. Some of their in world homes rival the castle I once inhabited in Second Life. We had fun in SL, throwing dance parties and changing our avatars’ skins and hair and clothing. So you can imagine how it feels to watch your daughter decorate her den in Animal Jam, change her avatar to a wolf and proceed to shop for new boots and sunglasses. She then invited her other Animal Jam buddies over for a dance party.

How quickly things change, yet oddly stay the same.

I’m trying to work out where I fit in the Mommyblogging 2.0 world. I left to tackle politics yet kept most of my writing parent centric. I got sick and blogged about my health. And somewhere between all of that my kids went from blog fodder to bloggers themselves.

I still want to write about life. Our family’s life. I’m picking topics and ditching topics because I wonder what my kids will think. What if I write something, feel I really need to publish, and they ask me not to?

I know I’m not alone. Many in my community of Mombloggers have changed their focus in the past few years. Some starting businesses that began on their blogs, others continuing their writing yet taking more review gigs for income.

Me? I just want to write. I want to write like I always have written. If my daughter is consuming my thoughts on any given day I want to type. If my son has me thinking well into the night I want to type.

When I first began blogging I didn’t have two people over my shoulder, I had two in my lap nursing and playing while I typed.

If I can’t be my authentic self to you, I can’t do this anymore. I believe I can still be that authentic blogger you once knew, but she’s finding her way back slowly. With some new rules. With some new boundaries.

Thanks for sticking around for so many years to hear about my life, my family, my passions.

I hope you will continue to come on over and read as I start this new journey. Maybe it is more like an old journey that’s story isn’t quite done yet.

-Erin

Filed Under: #SUCKITLupus, Feeling YaYa, Stepford Crazies

CDiff: The SuperBug Being Defeated By Poop

August 15, 2015 by Queen of Spain 1 Comment

Clostridium difficile commonly known as “C. diff,” is a germ usually occurring in people taking antibiotics that can cause diarrhea and death. However there is an experimental treatment raising eyebrows and the hopes of those suffering from the disease.

Fecal transplants* (yes, fecal) are being used more and more with an astounding success rate to eradicate the very stubborn germ. According to the Mayo Clinic, fecal transplants boast a 90% cure rate.

While the Mayo Clinic’s fecal transplant program has patients use family as donors, UCLA’s program uses a donor bank on the East Coast in which the fecal matter is carefully screened before being implanted in the patient via colonoscopy.

With a success rate of over 90% fecal transplants are being recommended by many gastroenterologists across the country, however they are having trouble billing insurance companies and creating nationwide protocol for the procedure. Currently the transplant is being billed as a colonoscopy including a ‘biologic,’ however doctors and administrators are working on a better way to provide the lifesaving procedure to patients across the nation without the hassle of red-tape.

*author Erin Kotecki Vest has undergone three fecal transplants, performed by UCLA doctors in their experimental program after battling CDiff for several months in the summer of 2015. Her 3rd transplant was a success and she is currently CDiff free.

Filed Under: #SUCKITLupus

All I Want is a Garden

July 23, 2015 by Queen of Spain 4 Comments

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.

Filed Under: #suckit, #SUCKITLupus, Feeling YaYa

Dealing With a Load of Crap

June 25, 2015 by Queen of Spain 6 Comments

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.

Filed Under: #SUCKITLupus, Feeling YaYa

God in my Grilled Cheese

March 3, 2015 by Queen of Spain 9 Comments

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.”

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.

Filed Under: #SUCKITLupus, Stepford Crazies

Ashes

February 19, 2015 by Queen of Spain Leave a Comment

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.

Filed Under: #SUCKITLupus, Stepford Crazies

The Fairy Godmother and My Glass Slipper?

January 27, 2015 by Queen of Spain 11 Comments

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.

Filed Under: #SUCKITLupus, Feeling YaYa, Stepford Crazies

So yeah, that

January 24, 2015 by Queen of Spain Leave a Comment

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.