Tuesday, May 30, 2017

Busted Mayo, disappointment oozes

The thing about having a rare medical thing happen to you is that you're often left in limbo as doctors figure out what to do with you. I'm lucky to have a really great team of doctors here locally, and I feel like they genuinely are trying to do the best for me. They all have said that most everyone dies during an Amniotic Fluid Embolism and those who do survive have such a variety of things to deal with in the aftermath so there isn't anything for them to look at as a guidebook on what to do for a patient.

As for me, the things I'm currently diagnosed with are:

  • hypopituitarism 
  • secondary adrenal insufficiency
  • low thyroid
  • depression
  • anxiety
  • adjustment disorder
  • PTSD
  • OCD
  • suicidal ideation
  • migraines
  • Raynaud phenomenon
  • hypoxic encephalopathy 
  • Sheehan Syndrome
  • Secondary Amenorrhea
  • Diabetes Insipidus
So, it's a lot. I'm trying to juggle all of it and I'm really having a hard time keeping track of not just my medications and what is for what, what each thing is supposed to be doing for me, and how do I know if it is or isn't working, but I'm having a hard time keeping track of my physical symptoms and what each one is associated with. Some days I feel like I almost need a health professional here to just keep track of it for me. And when I have an issue? Who do I call? Do I call my primary care? Do I call my endocrinologist? Do I call my neurologist? Or do I need a different doctor? 


Last week I had my three month follow up since my last appointment at the Mayo Clinic in Rochester, Minnesota. I wasn't totally sure what the point of the appointment was because they didn't tell me, so I went in not knowing what to expect. I knew I was going to have a lot of lab work and then my appointment, so I was there for an entire day. Nothing in my paperwork told me not to take my medication, it only mentioned not to take a multi vitamin or any medication containing biotin, which I don't take so I was in the clear. I even asked the lab technician, and she said I was good to go, which is great because if I don't take my medicine in the morning I am really nauseous and dizzy, just generally unwell. So I give my blood and I'm off to wait for several hours of waiting. I brought a book so I was OK with that. Had a small lunch in the cafeteria because I didn't have much money, and off to wait on the 18th floor. 

At my appointment the doctor informed me my labs were a total waste of time because I had taken my medication, which I should have just known to not take. Apparently she told me this three months ago and as a stroke victim with memory loss, I'm supposed to just remember this. 

(You're right, you're sensing a little sarcasm there. By god the ol' gal still has it.) 

I start telling her my symptoms: extreme exhaustion, nausea, feeling like I have a fever and the worst flu of my life though I have neither, dizziness, my hands/arms/feet frequently go numb or feel tingly, and when I do any kind of activity (like walking a few blocks) I feel like I've been beaten with a bat. I walked for a few blocks a few weeks ago and for three or four days after I could hardly move, I mean, hardly move and I'm not exaggerating. Every muscle and bone in my body hurt. There are some days I get out of bed and I really can't even lift Lucy anymore, let alone carry her down the stairs- I have to rely on Olivia to get Lucy and Penelope down the stairs in the morning. 

I'm detailing this to her, she's typing on the computer (I'm assuming she's documenting all of this), and she says to me, "Well, as long as you aren't dealing with nausea and fever, dizziness, that kind of thing..." 

Um... are you kidding me? Did you hear me? Did you seriously not listen to me? I just told you all that? 

So then I say it again. I go over it all again. I show her my emergency sheet where it says the 'warning signs of adrenal fatigue' and I explain to her that's how I feel EVERY DAY. Even if I take an increased dose of hydrocortisone, I still feel like that, what should I do? No answer. 

So I do what I absolutely hate, I absolutely hate because it's weak and it's not me at all. 

I start crying. I start crying because I'm confused, I'm overwhelmed, I'm frustrated, I don't know what else to do. I feel like, again, nobody is listening to me. Like I can't explain my situation well enough. That 10 months ago this would not be happening to me. That I would be able to explain how I was feeling and get my dilemma solved. But now? Now I feel like I'm speaking in a foreign language and nobody understands it. 

Overall? The appointment felt useless. I left there feeling like I wasn't heard, like none of my issues were worthy of being fixed. I honestly don't know if it's worth my time (or money) to go back. I have a message into my endocrinologist here in Duluth so hopefully he'll have some ideas for me. I also have one in for my primary care doctor too because maybe she can help me with the numbness and tingling in my hands and feet since that's relatively new. 

The most frustrating thing is every doctor wants me to lose weight, which I agree, I want to as well. I'm the heaviest I have ever been. The problem is that they all acknowledge that being on a steroid forever makes that difficult but to do the best I can. But every time I do any kind of exercise I'm in so much pain for days... what do I do about that? I can't be left immobile. I have to be able to move, be able to get out of bed. People keep asking if I have Fibromylagia and I just don't know enough about that. I've read a lot of articles and it's split 50/50 down the middle of it being real or not. I do know that I don't want to be on pain medication and I absolutely cannot afford another medication. Even if it does bring relief, I just can't afford it. I'm already worried about being able to afford what I have come January once my deductible starts over. 

So I'm going to keep plugging along. I'm still seeing my therapist every other week, and my psychiatrist who I feel really sorry for because I feel like he's really working hard to help me, and my myriad of doctors. I am having a sleep study done in June because the pulmonary doctor said my exhaustion could be my adrenal insufficiency, but it could also be me sleeping like junk at night. So we're going to do a sleep study to either rule one of those out. I'm kind of nervous about that because while some people can do a sleep study at home I have to do mine in the hospital because I tick off enough things that they want to be able to monitor things more closely. So that will be an experience, I guess. 

It's kind of strange to think I'm quickly approaching the one year anniversary and I feel no different. I feel like I haven't healed at all, I've not improved in my health, and I still feel like I'm in limbo. It's been such an awful, strange year. 

Tuesday, May 23, 2017

Please be kind to me this week.

Last week was rough. There just isn't any way to sugar coat it. The week before it wasn't kind, either. I am really struggling with my memory and it becomes a snow ball effect, it just gets worse and worse once I notice that I have forgotten something. I get frustrated with myself. I feel like, at almost ten months out, I shouldn't be this much of a mess still. I'm angry that I'm not any better. Granted, I'm not completely helpless but I don't feel like I'm any better. I'm still struggling. I'm not anywhere near functioning where I used to be. MY normal. I feel like I'm suffocating and nobody cares. Nobody gets it.

Last week I discovered that I booked my hotel room for my visit to the Mayo Clinic (which is this week) for the wrong day. I didn't panic right away, I figured I could change it. I called down, but I was out of luck. Not totally, they were still able to get me a room at the cheap rate, but I was out of luck on not being charged because they need a 24 hour notice. I was calling on the same day that they thought I was checking in. And from a business stand point? I totally get it, they could have booked that room in a heartbeat, that place is busy. I can't get angry at them. I'm angry at myself for being so stupid. For not double checking what the hell I was doing.

The next day our refrigerator died. Approximately $200 worth of groceries? Garbage. I mean, thank god my dad was in town and my parents are amazing because they went and bought us a refrigerator that day and got it installed, no question. Matt was at work, I'm at home crying my eyes out as I'm throwing away food I can't afford to replace and still haven't, and my parents are out buying me a refrigerator they can't afford to buy me either. Then I go to my psychiatrist appointment, who informs me, in great detail that I just can't remember that I'm basically brain damaged. The stroke that I had during my AFE damaged a crucial little chunk of brain and that's why I'm struggling with life. So bottom line, I will always be on a cocktail of anti-depressants, mood stabilizers, etc.

And I don't know why, but that is really upsetting to me. I don't know why I'm OK with being on something for blood pressure for life but tell me that I need something for my head for life and that is just completely unbearable.

But he increased my dose of Topamax, which is our plan for awhile longer to see if it makes a difference. I will say there is an improvement with this compared to the Cymbalta, which was totally useless. The other perk is I hardly eat at all while on Topamax, so maybe in time I'll stop looking like I'm seven months pregnant? Though the endocrinologist said, sadly, that is a side effect to being on steroids- you get the distended stomach and there isn't a whole lot you can do about that. So that's exciting. I'll always be fat, apparently.

As you're reading this, I'm wandering around the Mayo Clinic campus in Rochester, Minnesota. I'm there for my follow up appointment for Endocrinology. I'll have labwork in the morning and see the Endocrinology team in the afternoon. I don't know really what they'll be doing, but I'm kind of nervous. I have some questions, most of which I don't know if they can answer for me. I've been so tired these last few months and honestly, I'm wondering if it's adrenal fatigue? I can't even go for a short walk without feeling like someone has hit me with a car. Surely this can't be normal. I mean, is this just how it's going to be my whole life? What kind of quality is that? How do people function like this? I carried Lucy to the park (just across the street) about a week or so ago and I'm not kidding, my back hurt so bad for days I could hardly move. Like you hit me with a bat. It's really frustrating and it's hard to plan my life. I should be able to go for a damn walk without feeling like I'm on death's door the next day.

I'm trying really hard to stay positive. Sometimes I feel OK and then out of nowhere, I'm upset. I'm hearing a voice in my head and it's just this never ending loop of why everything is crap, why I'm crap, why I'm a terrible mother, wife, daughter, sister, friend, person, why I should just end it all. I think paranoid things that, in the back of my head I know aren't true but then I have to keep telling myself that. I feel crazy. I feel like I am actually going completely crazy. This is the worst feeling in the word. I can't even explain it. I feel like I'm not making any sense. It's just a really tough road I'm on right now. But I'm trying. I don't know why, it doesn't even feel worth it to be honest.

Monday, May 22, 2017

Same Beach, Next Year (review)

*I received an ARC in exchange for an honest review; however all opinions are my own. This post also contains affiliate links that I may earn commission from.*

I have a feeling this is going to be a rough week for me, just as last week was and I'll talk about that tomorrow, but I'm going to start this week with a book review. And not just any book review, a review from an author that is the epitome of summer- Dorothea Benton Frank.

New York Times bestselling author Dorothea Benton Frank returns to her magical Lowcountry of South Carolina in this bewitching story of marriage, love, family, and friendship that is infused with her warm and engaging earthy humor and generous heart.

One enchanted summer, two couples begin a friendship that will last more than twenty years and transform their lives.

A chance meeting on the Isle of Palms, one of Charleston’s most stunning barrier islands, brings former sweethearts, Adam Stanley and Eve Landers together again. Their respective spouses, Eliza and Carl, fight sparks of jealousy flaring from their imagined rekindling of old flames. As Adam and Eve get caught up on their lives, their partners strike up a deep friendship—and flirt with an unexpected attraction—of their own.

Year after year, Adam, Eliza, Eve, and Carl eagerly await their reunion at Wild Dunes, a condominium complex at the island’s tip end, where they grow closer with each passing day, building a friendship that will withstand financial catastrophe, family tragedy, and devastating heartbreak. The devotion and love they share will help them weather the vagaries of time and enrich their lives as circumstances change, their children grow up and leave home, and their twilight years approach.

Bursting with the intoxicating richness of Dorothea Benton Frank’s beloved Lowcountry—the sultry sunshine, cool ocean breezes, icy cocktails, and starry velvet skies—Same Beach, Next Year is a dazzling celebration of the infrangible power of friendship, the enduring promise of summer, and the indelible bonds of love.

I feel like I say this every time I read and review one of her books but it's true- it just isn't summer until I have the newest Dorothea book in my hands. I can't lie to you and say that I have them all, but I have quite a few and I love them. I think in one of my posts from last week I mentioned that it's my dream to go to a book festival? Well it's also my dream to do an entire vacation around the Lowcountry settings of Dorothea's books. I can't help it, of all of the books I have ever read, I think the setting of these books is perhaps my absolute favorite. The way she describes the area, the homes, the people, the food, and the lemonade- it makes you want to grab a chair and head to the beach. Even if it is hotter than the bottom floor of Hell. HA! My second favorite thing about her books are always the characters. There is always at least one loon in the bunch and in this book we have Cookie, but Clarabeth is a close second. (And if you're a mom who has been stuck watching The Mickey Mouse Clubhouse for hours on end, you'll appreciate her because I kept saying her name as Clarabelle and picturing that character in my head and it made her even better. You're welcome.) 


So in this story we have two couples, Adam and Eliza, and then Eve and Carl. Way back in the day Adam and Eve had a bit of a first love fling that neither ever talked to their respective spouses about. Fast forward to present day when they run into each other, on vacation in Lowcountry. Adam invites Eve and her family over for drinks and Eliza- the good wife that she is, though annoyed, goes along with it. This begins a 20+ year friendship which, though awkwardly strained, is valued because of the longevity. They vacation each year together and Adam and Eve secretly pine for each other. Eliza deals with it because she knows Adam loves her, appreciates what he has. 

Until Carl and Eliza walk in on something. Adam and Eve swear up and down it isn't what they think. Is it? Isn't it? Nobody knows and everyone needs to cool down, gain perspective. Everyone takes some distance, takes some time to look at their own relationships for what they are. Is the grass greener on the other side? Can young love be rekindled? 

Overall? This book comes in at just under 400 pages and I finished it in one afternoon, that's how much I enjoyed it. One sitting, lambs. Perfect summer read. I have a hard time finding fault with books by this author because I really enjoy her writing, her stories always feel like you're sitting at the table getting the gossip from your friends and that's just what this story is. I was starting to feel like Eliza was a little harsh with Adam and I wasn't sure how the author was going to turn it around but when Adam get sick.. perfect. The ending? OK, that's the fault. Can I just say I feel like Max could do SO MUCH BETTER? So much better for a wife?! Ugh. I feel like he's going to end up just like Carl and it makes me sad for him. That's my only gripe. I'm definitely giving this book 5 stars because even with that gripe.. I loved this book. The fact that I couldn't put it down all afternoon is worth that extra star. Absolutely. 

Tuesday, May 16, 2017

Novel Destinations (review)

*I received an ARC in exchange for an honest review, though all thoughts are my own. This post also contains affiliate links that I may make commission from.*

I know I already gave you a post today about Penelope's second birthday, but I also have a book review. It's a bonus post, but this (finally) puts me on track with my Goodreads reading challenge. I was so behind there for awhile and now I'm on track again. Phew! I can't get cocky about it because I have to finish another book this week to keep up otherwise I'll fall behind again.

Follow in the footsteps of much-loved authors, including Ernest Hemingway, James Joyce, Virginia Woolf, Mark Twain, Jack Kerouac, Jane Austen, and many more. For vacationers who crave meaningful trips and unusual locales, cue National Geographic's Novel Destinations a guide for bibliophiles to more than 500 literary sites across the United States and Europe. Check into Hemingway's favorite hotel in Sun Valley, or stroll about Bath's Royal Crescent while entertaining fantasies of Lizzie Bennett and her Mr. Darcy. The fully revised second edition includes all of the previous sites with updated locations plus color images and an expanded section on all things Bronte. The book begins with thematic chapters covering author houses and museums, literary festivals and walking tours. Then, in-depth explorations of authors and places take readers roaming Franz Kafka's Prague, James Joyce's Dublin, Louisa May Alcott's New England, and other locales. Peppered with great reading suggestions and little-known tales of literary gossip, Novel Destinations is a unique travel guide, an attractive gift book, and the ultimate bibliophile's delight."

If you know me at all you know I absolutely LOVE a road trip. If I can somehow incorporate a literary stop on a road trip, even better. The only bummer about this is that a lot of this book features things that are abroad... as in places I most likely will never get to see in my life time. So that's a total bummer. But don't fret, pets! There is still a ton of stuff in the United States for you to see!

Let's break down the book though because the book is two parts: travel by the book and journey through the pages. In the first part there are author houses and museums (my favorites were southern comfort and vampires, ghosts, and ravens), writers at home and abroad, literary festivals, tours, and more (this was my FAVORITE part of the entire book), literary places to drink, dine, and doze. The second part of the book, Journeys Between the Pages, was more of like a dedicated vacation. Clearly the one that would be up my alley was the Island Time: Ernest Hemingway in Key West, Florida only because I am a Florida girl through and through. But there was also a California Dreaming: John Steinbeck in Monterey and Salinas, California that I kind of thought would be fascinating.

Another section I really enjoyed was the "Libraries Worth Checking Out", but I have decided I really, really, REALLY want to go to a book festival. WHY HAVE I NEVER BEEN TO A BOOK FESTIVAL?! Have any of you been to one? Sigh. The other cool thing is that if you are going on a little trip and you've got some time, check out the index on the back for the state that you're visiting, there is a good chance it's mentioned in the book and you can make a quick day trip to a literary landmark! We are driving to Florida at the end of June and I'm hoping I can convince Matt to squeeze a stop, or four, in. They are practically on our way so it's not like we're losing time. Surely someone will have to go to the bathroom and I can just take a quick peek!  Right? Of course I'm right.

I totally loved this. It's such a fun, nerdy book to page through with lots of fun facts, lots of things I didn't know, it gave me lots of ideas for future trips (maybe not family trips but definitely trips with my friends!) and it's just an enjoyable read. Who doesn't love a good non-fiction book every now and then?!

You can find this book on the National Geographic web store and also on Amazon.

Penelope is two. The terrible two. Surely you've heard.

I used to always say that two had nothing on three. Two was EASY compared to three. You could still reason with two, you could bribe a two year old, you could still pick a two year old up even when they took the limp noodle tactic in a parking lot.

But you haven't met Penelope.

Penelope is a beast all her own.

When I got pregnant with Lucy, my grandpa jokingly said that one in four become a serial killer. I don't know if that's true but at the minimum, Penelope is the one to put your money on if you were placing wagers on which one of my children will grow up to lead a prison gang. I'm not saying I'm giving up, I'm just saying that you can nurture all you want but genetics have gone wrong I think. Most mornings we start the day with her whipping her door open and screaming at us that she's "happy". She goes to bed almost every night in full tears screaming that she's "happy" as well.

It's really awesome.

But, our little darling has turned two and despite not feeling up for anything, we whipped together a really haphazard party. Fortunately enough, our local PBS station had their Kids Club Circus event the same day as Penelope's birthday so the plan was to do that in the morning, poop her out enough for nap time, and then party for dinner and hopefully have a decent bedtime.

She got to meet George. She loves George, not that you'd know that by her obvious lack of enthusiasm.
Lucy was totally excited.
Penelope played games. And when I say "played games" I mean she blatantly cheated and demanded prizes.
My niece Adriana was able to come up for the day, so that was really fun. Her and Penelope are only a few months apart so I thought they'd have fun playing together. Adriana mostly had a great time playing with the big kids.
Penelope had more fun showing the characters her new Rosita stuffed animal than taking pictures.
She didn't like Nature Cat touching her but she did look to see if he had a tail.

Fortunately all of the running around and jumping DID get us a solid nap from both Penelope and Lucy, so that was nice. I had underestimated how exhausted I was going to be so by the time the party started I was kind of over it. I was pretty grateful I didn't invite that many people and of the few I did invite, some couldn't come, because I was pretty tired.

I had purchased this bounce house thing on Amazon on some one day super sale for $40 months ago and it was basically all I had planned for entertainment. Unfortunately, it was absolutely freezing so the kids didn't get to play in it for too long.
Just long enough for me to get only one picture, but not of all four.

Matt grilled up burgers and hot dogs, Matt's mom had helped us with food and his sister brought fruit and veggies.
If you know Penelope at all, you know she's all about a meal.
She's also all about dessert. I bought cupcakes and little ice cream cups- which basically was the greatest part of her day. She would have eaten "cream" all night if you let her.
Then, of course, presents.
All kinds of presents.
She got a tricycle, which she enjoys sitting on and wants you to push her on, but she doesn't totally get it.
And this phone... oy. Lucy gets a turn every once in awhile with it! She also got an Elmo that talks (and says her name!), some Play Doh, new bed sheets, a big Poppy doll for her bed and a Troll blanket, a stuffed bunny and a cool kickball, a Minnie Mouse with snap on outfits, lots of cute new outfits for summer, and I got her a new book. Not a bad haul for being two.
It's hard to believe this kid is two. Already. She's got all of the personality in the world. She is SUCH a handful, but she's such a love bug, too. She says lots of words, can identify some colors and some letters, loves to read, her favorite movie is Trolls, her favorite show is Super Why, she loves to rub soft things in her ear for comfort, loves the color purple, she runs 100 mph, she's bossy, sassy, hilarious, loves animals, and has big feelings. She's going to be the one to give us a run for our money. That's for sure.

Monday, May 15, 2017

American Gods (review)

*I received an ARC in exchange for an honest review, but all thoughts are my own. This post also contains affiliate links that I may make commissions from.*

A bit spoiled today with two book reviews, but tomorrow you're going to get a non-book review post from me so that's a bit of a teaser for you. 

American Gods - Neil Gaiman

Locked behind bars for three years, Shadow did his time, quietly waiting for the magic day when he could return to Eagle Point, Indiana. A man no longer scared of what tomorrow might bring, all he wanted was to be with Laura, the wife he deeply loved, and start a new life.

But just days before his release, Laura and Shadow’s best friend are killed in an accident. With his life in pieces and nothing to keep him tethered, Shadow accepts a job from a beguiling stranger he meets on the way home, an enigmatic man who calls himself Mr. Wednesday. A trickster and rogue, Wednesday seems to know more about Shadow than Shadow does himself.

Life as Wednesday’s bodyguard, driver, and errand boy is far more interesting and dangerous than Shadow ever imagined—it is a job that takes him on a dark and strange road trip and introduces him to a host of eccentric characters whose fates are mysteriously intertwined with his own. Along the way Shadow will learn that the past never dies; that everyone, including his beloved Laura, harbors secrets; and that dreams, totems, legends, and myths are more real than we know. Ultimately, he will discover that beneath the placid surface of everyday life a storm is brewing—an epic war for the very soul of America—and that he is standing squarely in its path.

I didn't even know about this book until I heard it was going to be a show, and then of course I don't have cable because I'm poor so I wanted to read the book! Then I saw it was on the list for possible review and I got super excited and thought for sure I wouldn't get picked, surely by the time I responded everyone else would have jumped on it but no- I got picked. What is wrong with all of you people?! 

The thing about Neil Gaiman books that I love so much, and this is going to sound bizarre, is that I have no idea why I love them. I know, I know. I usually finish the book and I wonder to myself why I even finished it, and why I even liked it because there usually isn't anything about the book that really stands out about them but oddly enough it all comes together and it all just... it just fits? This book was kind of the same way, it's full of traditionally bizarre characters and a story line where it constantly feels like something big is going to come but it never really does but yet... you don't end the book unsatisfied. It also has really weird dream sequences, which I didn't know where dream sequences at first and I was SO confused and I found myself re-reading passages a few times. 

Needless to say, this is a really difficult book to read if you are a recovering stroke and brain injury patient. FYI. 

I also really struggled with some of the story lines and keeping track of them, to the point where I actually considered starting a little stack of notes next to me but then I figured if I have to do that, I am done with the book because no book is worth that kind of time. I have an entire shelf of books to read and very little time and my brain is slow. It's hard to write a review for a Gaiman book because I can tell you what this book has in it: it has the weird cast of characters, it has coin tricks, it has a road trip of sorts, it has a man with a dead wife, but the dead wife kind of visits him as a ghosts, there's a guy kind of swallowed by a vagina, there's a buffalo man, the book is creepy and totally weird, but even with all of that, it doesn't tell you what any of it was really about? If that makes any sense? It's Gaiman's strange little love letter to America. It's easily the strangest book I have ever read in my life. Hands down. 

Of course, you're going to have to pick this up for yourself and you can do so on the HarperCollins website, or on Amazon. Don't forget the show is airing on STARZ, and of course I can't watch it so I'm hoping eventually it'll make it's way onto Netflix or something. Crossing my fingers!! 

My Lovely Wife in the Psych Ward (review)

*I received an ARC in exchange for an honest review, but all thoughts are my own. This post also contains affiliate links that I may make commissions from.*

When I got the opportunity to review this, I actually knocked one of my children over on my way to the computer so I can email immediately back and say, yes! Yes, absolutely get me on this tour, please tell me I'm not too late. I am willing to beg for the opportunity to be on this tour because I'm currently too poor to buy books because everything fun is out of our monthly spending plan but I fear that I am Guilia. That I might be her soon and I am scared of that more than anything. I wanted to know what to expect and this book... I cried. And I am so scared. 

A heart-wrenching, yet hopeful, memoir of a young marriage that is redefined by mental illness and affirms the power of love.

Mark and Giulia’s life together began as a storybook romance. They fell in love at eighteen, married at twenty-four, and were living their dream life in San Francisco. When Giulia was twenty-seven, she suffered a terrifying and unexpected psychotic break that landed her in the psych ward for nearly a month. One day she was vibrant and well-adjusted; the next she was delusional and suicidal, convinced that her loved ones were not safe.

Eventually, Giulia fully recovered, and the couple had a son. But, soon after Jonas was born, Giulia had another breakdown, and then a third a few years after that. Pushed to the edge of the abyss, everything the couple had once taken for granted was upended.

A story of the fragility of the mind, and the tenacity of the human spirit, My Lovely Wife in the Psych Ward is, above all, a love story that raises profound questions: How do we care for the people we love? What and who do we live for? Breathtaking in its candor, radiant with compassion, and written with dazzling lyricism, Lukach’s is an intensely personal odyssey through the harrowing years of his wife’s mental illness, anchored by an abiding devotion to family that will affirm readers’ faith in the power of love.

I have always dealt with a bit of depression, my whole life. Right after Olivia it was at its absolute worst, and it was the first time that I felt like I had to medicate myself. I felt shame and absolute humiliation. After about eight months I felt nothing at all so I wanted to get off of them so I just stopped. About a year later our marriage hit a major bump in the road and I thought for sure we were getting a divorce but the day I went to file I found out I was pregnant, so there I was, my husband was jobless, I was pregnant with an almost two year old, and I had divorce papers in hand, cue mental break down. So I was put back on an anti-depressant that was safe for pregnancy. I cried all of the time but I felt nothing at all so I don't know how helpful it was. As soon as I could get off of it, I did. I went several years with no medication, I had bouts of feeling down, but I managed it with diet and exercise. I tried to fill my schedule with fun things so I didn't give myself the time to go into the hole. 

Then we had Lucy. All hell has broken loose. Since then I have struggled with mental health. A lot. Enough that I am seriously considering checking myself into a three month facility, anywhere that will help me, that can focus on trauma and depression. I don't know if I'm fixable but I know I can't live like this forever. I know that there is a real quality versus quantity argument in my head when it comes to me as a mother and the mother my children had before Lucy is gone, she is not ever coming back. The mother they have now is terrible. She's mean, she's not present, and she doesn't want to be here. It's the worst feeling in the world, so I identified with Giulia so much in this book. But it also made me feel guilty because I bet my husband Matt could identify with Mark in the book because I know immediately after Lucy's birth Matt felt helpless and had no idea what to do. I imagine that's the spot he's in now with my depression but I can't help him because I don't know what to do either. 

This book follows the story of Mark and Giulia. The meet in college, fall in love, get married, and start their lives in the most idyllic way we all hope to. It's perfect. They start their careers, they both have plans, they get an awesome dog named Goose, and all is well. Except things start happening with Giulia. It starts with a lack of sleep and ended in a terrifying first psychotic break. Her first hospital stay was confusing, terrifying, They both soon learn that the mental health system in America is essentially is a guessing game, nobody actually knows how to diagnose or treat you, it's all about treating you with medications and messing around with dosages and hoping for the best. Everyone responds differently and what works for you for awhile, might inexplicably stop working and you're right back in the hospitable. I identified with Giulia's frustrations and her anger at losing her independence and her inability to feel heard- that's how I feel so often. But at the same time, I understand Mark's frustration because as a parent your child's safety and well being as to come first. I can understand Giulia not wanting to be on medication long term, a lot of them make you feel absolutely awful and the side effects are no joke. 

I want to share one of the passages in the book that really spoke to me. I have had a really hard time trying to describe what my AFE and Lucy's birth has done to me and to Matt, but our marriage, too. Everyone keeps telling us how lucky we are to have each other and it's all I can do to roll my eyes and not punch them in the face because I feel so angry. But this. This is what it's like: 

"It's like you've survived a tsunami, Mark. I'm sure you've saw the footage from the tsunami that hit Indonesia. Entire buildings wiped out. People swept away. Horrifying stuff. It's not hard to imagine you and Giulia on one of those beaches. You were in bliss together, and then the wave hit. You grabbed on to a tree and each other and held on as the waved pushed and pulled and tried its damnedest to rip you apart, but you kept holding on. For nine months, you held on."... 

"Exactly!" I said. "Which should feel good, right? So many people don't survive. Families are torn apart by mental illness. Ours wasn't. People kill themselves every day. Giulia didn't. So why don't I feel happy?" 

"Look around you, Mark," my therapist said. "Look at the carnage: the demolished hotels, the uprooted trees, the crumpled cars. The realization that not everyone made it. The worst is over. But the way you once knew it, is gone." She was right. Nothing was the same. Nothing could ever be the same. Our bliss, our puppy love from college, our charmed lives, it was all gone. Giulia's psychosis and depression would color the rest of our relationship. Maybe even my own happiness wouldn't come as easily as it always had. I would have to work for it and have the courage to do the work."

And that is what scares me. That my depression is going to color everyone else's happiness. It's one thing for it to change the rest of my life, one thing for me to be the one to actively have to work at it but for everyone else in my family to have work at being happy every day because of me? To me, that is unacceptable. I am not OK with that and that really upsets me. This book also shows you, in heartbreaking detail, that the vows "in sickness and health" are difficult to adhere to and shouldn't be said flippantly but often are. So often young couples stand at an altar and just say their vows without really thinking about what they mean and give up so easily on marriage. When things get hard, or they don't know what to do, they get divorced and hope the next go round is easier. Mark and Giulia are proving that while it isn't easy, it isn't without rewards. They may have difficult times but they have good times too. 

And just... my heart goes out to you guys. I'm terrified of my own journey because I'm cognizant enough to realize that I'm not getting better. I don't know what's wrong with me but I know I'm not dealing with simple depression anymore and I know I'm not going to be able to be flippant about my medication anymore and I need help and I am terrified to be hospitalized. I'm grateful that Matt hasn't thrown in the damn towel because I know I am a nightmare to deal with right now. But this story is just everything. I devoured it this weekend, I cried. It's no coincidence that it's Mother's Day weekend, I was an emotional hot mess and this book was everything that I needed. Five stars. Easily. You need this in your life. 

If you, or someone you love struggles with mental illness I highly encourage you to read this book. You can purchase your own copy on the Harper Collins website but you can also find it on Amazon. 

Thursday, May 11, 2017

Dirt (review)

*This post contains affiliate links that I may make commission from; however, all opinions are my own.*

If you know me in real life you know I'm not just passionate about adults reading, I'm passionate about children's literature as well. I know first hand all it takes to turn a child into a life long reader is finding them the right book at the right time. Oddly enough that was an R.L. Stine book for me. I was a reader before then, but R.L. Stine and his Fear Street series was what turned me into a voracious reader that essentially devoured books faster than my school library could keep up. So I get really excited whenever I have the opportunity to read books geared towards younger readers because I like to share them with my friends at Bryant Elementary, where my children go to school. I know that if I can get just one kiddo as excited about a book as me, I've opened up their entire world.

And this book? This book is a must have.

Dirt - Denise Gosliner Orenstein
Things are hard for eleven-year-old Yonder. Her mother died and her father has sunk into sadness. She doesn't have a friend to her name . . . except for Dirt, the Shetland pony next door. 

Dirt has problems of his own. He's overweight, he's always in trouble, and his owner is the mean Miss Enid, who doesn't have the patience for a pony's natural curiosity. His only friend is Yonder, the scrawny girl next door.  
So when Miss Enid makes the cruel decision to sell Dirt for horse meat, Yonder knows she has to find a way to rescue him. Even if that means stealing Dirt away and sneaking him into her own house. What follows will make you worry, will make you cry, and will ultimately fill you with hope, love, and an unshakable belief in the power of friendship. Especially the four-legged kind. 

An ARC for this book came to me by surprise and I almost just set it aside into the "maybe I'll get to it" pile but something about the book pulled at me. Maybe it's the obese Shetland pony eating a shoe on the cover, maybe it's the main character's unusual name (Yonder), or maybe it's the story of the little girl desperate to feel love that pulled at me. I'm not sure, but the fact that it came in around 215 pages guaranteed it was going to be a fast read, and I had an afternoon set aside for reading, so I picked it up. 

And could not put it down until I was done. 

The story absolutely pulls at you as a parent because I think if we all look hard enough, we all know a Yonder. At every school there is a child that is in desperate need of love and attention, who is overlooked by the adults who should know better, and the adults who do step in don't recognize the entire situation, only what isn't right. I teared up a few times because I just... I wanted to take this poor girl in. She loses her mother, her father becomes an alcoholic because of it and he really does try to do the best for Yonder. After her mother's passing, Yonder seemingly loses all ability to speak, which her father isn't equipped to deal with and the people at school don't even try to help her, they just get frustrated. She's bullied horrifically and teachers and staff are oblivious so she decides she's not going back. 

Cue the entrance of a one eyed, morbidly obese, and filthy Shetland pony. Yonder is convinced that this pony understands the things she says in her head and they become fast friends. One day Yonder discovers that the pony is up for sale, basically for horse meat, and she is absolutely horrified. He may be a total nuisance but this pony deserves a better fate than this. So Yonder crafts up the idea to not only steal the pony but let it live in her bedroom and safe from slaughter. She eventually names him Dirt, discovers he will eat anything, poops a lot, and is terrified of garden hoses. It's like they are kindred spirits that nobody wants around, which explains their connection. But all good things must end, and when it's discovered she not only has a pony living in her bedroom but that her father is barely taking care of her, is an alcoholic and their living conditions are deplorable, combine that with Yonder missing a lot of school because of the bullying she can't tell anyone about because she doesn't speak, it's decided that Yonder must go to foster care. All Yonder can focus on is Dirt, he's her only friend and she knows that without her, Yonder will be mistreated or worse, slaughtered. 

I can't give you any more because you need to read it for yourself. But I'm telling you- amazing book. This absolutely would make a FANTASTIC book choice for a Battle of the Books competition and it would lead to so many great classroom discussions for students. And as educators, it encourages you to take a deeper look at the children who are "problems" or difficult to get to. There is always a reason, we just have to figure out what that one thing is to get a student to open up. In this case it was animals, Yonder felt a connection with animals she couldn't make with humans but it showed that she is capable of compassion and caring. She has an interest and that interest gets her excited about something and moves her beyond the sadness of her mother's death and her less than ideal home life. 

*I received an ARC in exchange for my honest review. All thoughts and opinions are my own.*

Wednesday, May 10, 2017

AFE Day and meeting my birth team

So way back on March 27 was AFE Awareness Day and since it was my first one I really wanted to acknowledge it in a special way with the hospital staff that not only brought Lucy into the world but saved my life. It ends up being a little complicated because I don't actually remember my birth team and I have no actual record and it's not like you get sent home with a list of names. All I have is the name of one nurse I know personally, the name of another floor employee I have since friended on Facebook since having Lucy, and a vague memory of a really nice nurse in the middle of the night helping me with my pee bag, and then a really nice blonde nurse walking me out of the hospital on my last day. And of course, my own McDreamy, who is the best anesthesiologist in the entire world as far as I'm concerned but I remember him because I had him with Penelope. I'm convinced I could have another stroke and recognize that man.

But that's basically the only memories I have of my entire week long stay, so not a whole lot to go on.

I put a lot of thought into what I wanted to do for the hospital and I kept coming back to it being something tangible that could be on display. Amniotic Fluid Embolism is something I had never even heard of, and this was my fourth delivery and I would consider myself to be highly educated when it comes to maternal health. I took ever prenatal class offered during every pregnancy even if the information was redundant, I researched new developments and standards with each pregnancy, I kept up with pregnancy books and magazines, I weighed my options over different types of births, even. If you remember for a hot second I thought about a home birth with Penelope and I even thought about hypnobirthing but then contractions happened and I was like, yeah.... I'll be taking that epidural because modern medicine hasn't come this far for nothing and who am I to piss on science?

I wanted to ultimately give the hospital something that they can display that would maybe have a woman ask the question, what is an AFE? Could it happen to me? But also to reassure them that yes, St. Luke's Hospital in Duluth, Minnesota is absolutely, 100% ready for you and you are in good hands.
This is what I came up with. I found a company online where you can make customize plaques and I know that while I was giving birth to Lucy they were under going a major remodel, so I wanted to make sure it was something fairly modern looking, so I went with a glass plaque. It's not a wall mount, it came with a little piece to set it into so it could sit on a table or counter, and because I can't read the print and I can't remember what it says, it essentially says that St. Luke's and their excellent providers saved us from an Amniotic Fluid Embolism, that we are one in 40,000.

I have no idea if it's displayed or not, if anyone will ever see it, but the thought was there. And it's pretty. I also included one of the first pictures of me holding Lucy after I was out of the ICU. Not that I remember that moment at all, but Matt said that was pretty much the first time I actually had gotten to hold her myself, even if it was just for a minute.

The really cool thing was that in order for me to present this to the hospital I wanted to meet my birth team. Part of my therapy is working on the PTSD and anxiety I have associated with Lucy's birth and I really felt like I wanted to just take the bull by the horns and see if I could handle being on the floor again. I wasn't even sure if it would trigger anything, considering the remodel, and I wasn't sure if I'd have any kind of feeling about it either way. I didn't want to call the floor and sound like a complete moron so I send a random email through the patient advocate email and figured it might get routed, it might not, but it would be worth a shot.

It actually worked.

A few weeks later, long enough that I had forgotten all about it, I got a call from the Labor and Delivery floor manager (whose name I have forgotten because my memory is that horrific and I cannot find my notebook, which defeats the purpose of taking notes) saying she got my email, she remembers me, and kind of gets the idea of my visit and she'll send an email out to the team. We picked a day and she said she couldn't guarantee everyone could come but she was sure some would.

I went into it thinking maybe one or two would come.
There were more than this but some had to duck out because they were working, but so many came. Some faces I knew, many I didn't. The blond nurse who walked my out (far right) was there, my delivering OB (behind me with glasses) was there, the Occupational Therapist I apparently yelled at and called a quack and told to "get a real job" was there (guy in the way back in the black) and yes, I profusely apologized and explained that I actually had a stroke and I didn't mean what I said and I don't think he's a quack and if it at all makes him feel any better, I absolutely probably should have had OT before I went home and when I came home and he was right and he should feel better because I never admit to being wrong and I was wrong. (It's even on the Internet, now!)

I was fairly emotional and I wish I had asked more questions, but I only managed to get out one and that was, did I say anything before I went for surgery? And I can't remember who answered first, but a couple of people said the same thing, just that I absolutely did not want to go, I was adamant I didn't want a c-section, I didn't think I was going to come back, that I was crying, and I was very scared. But it was emergency, they just rolled me away and I fell asleep with tears on my face.

I did tell them that I had a premonition my entire pregnancy that something was wrong this time around, I didn't know what but just that something was very much off. I also told them that I had seen a psychic afterwards and, not telling her anything of my story, she told me I wasn't supposed to be here and I was meant to die in August. That brought kind of an eerie quiet to the room.
And of course, my rock star McDreamy Anesthesiologist, Dr. Jeffrey Speer, who is amazing. It's really this guy that is the reason I'm still here. If he hadn't paid attention in school, and in the one conference where they talked about AFE and this combination of drugs that might work, and if he wasn't totally paying attention to me and my vitals like a hawk, I would be absolutely dead and gone. All of my friends who came to visit me in the hospital who saw him there have all asked me if he's single, I don't know and I did not ask. But he is just the nicest person ever and I can tell you right now he gives the BEST epidurals ever and he will make sure you don't die should you ever have an AFE.

The greatest part of the visit was learning that they had seen an AFE before at the hospital and that woman had also survived, so that was cool. I also got the name of another local woman who has had one and I friended her on Facebook and our schedules have both been crazy but my hope is to connect soon so we can talk about our experiences and just compare notes. She's nine years out from hers so she can potentially be an invaluable resource for me and I'm excited about that prospect. The other interesting thing was their questions for me. They were pretty interested to hear how I was doing and I guess I didn't really expect that? I felt, in hindsight, kind of bad not to be able to tell them how amazing I was doing because I think ultimately any medical professional wants to see their patients go on and do amazing things and lead great lives. Instead I was pretty honest and I talked about my struggles with mental health as a result of the trauma and brain injury of this, but also just the medical repercussions of the trauma my body sustained from the AFE event itself. They were happy to see Lucy, and hear that she suffered no negative effects from the AFE, because in some cases babies die or have mild to severe impairments. In our case we're lucky that the AFE occurred literally seconds after she was officially delivered so she was just fine.

The other really cool thing I learned? Is that because of Lucy and I, St. Luke's now has this (there's a technical term that I can't remember) box in the labor & delivery rooms ready to go in the event a laboring woman has an AFE. In my case, had I tried to deliver Lucy on my own on the delivery floor, I would have died right there from a hemorrhage and organ failure and there would have been nothing they could have done. It is by an absolute fluke that Lucy turned her face at that last second prompting an emergency c-section, which landed me in the emergency room, and because I was there, I was already in surgery was I able to be saved. In any other scenario, I would have been dead. So now this box is there, ready to be hopefully not be used. It can save a mother's life. Every hospital should have this, but most don't until it's too late. I am so grateful that the hospital that I have always trusted my health, and my children's health, to is ahead of the pack. Their staff is hands down the best, they treat you like family and they give you the best care. One of the strongest memories I have from that week is how much I did not want to leave. I knew I couldn't do it on my own and I felt so safe, and so cared for. I trusted these people implicitly and I was so scared to go home because I knew how impaired I was. And it's not just the Labor and Delivery floor, literally every clinic, every practice, every doctor, every nurse I have encountered on this journey has made me feel like I wasn't crazy and they actually are trying to get me better.
It means a lot. To both of us. Thank you.

Tuesday, May 9, 2017

The Day I Died (review)

*This post contains affiliate links that I may make commission from; however, all thoughts are my own.*

Since having my AFE in August, I have really done a lot to try to reconcile what it means to die and come back.

The Day I Died - Steve Sjogren
"The cold voice of the anesthesiologist recited the typical 'count backward from 10' cadence. Darkness closed around me before he got to 7. That's when I found out what it's like to die--and to come back from the dead."

It was a beautiful winter's day, showing no signs of what was to come. Steve Sjogren, pastor of one of America's fastest growing churches, went into the hospital for routine gall bladder surgery and died--twice. What began as a tragic medical accident led to Steve's encounter with death, an experience of unimaginable peace and some surprises, with comforting words from God, a meeting with an angel, and seeing those who had died before him.

If you, or someone you know, are fearful of dying, curious about heaven, or simply desiring to live life to its fullest, this encouraging book could change how you view life and death.

I really struggled with this. Since my experience with death and coming back with it I feel almost obsessed with reading about other people's experiences and comparing them with mine- did they have the same premonitions as I did? Do they feel the same way I do afterwards? So I am admittedly purchasing books left and right without really reading reviews beforehand, I want to go into them with an open mind.

When I read this book I was pretty disappointed because this isn't so much about his actual medical experience but more his life lessons for us on what kind of person to be. He's saying he died so he could come back and be the better husband, father, friend, person, etc. Which... I suppose that's all lovely, but tell me about your experience. What did you see? What did you experience in your medical coma, do you have memories of it? Did you have any odd feelings going into surgery? He actually shared so little of the actual event that by the time I got to the end of the book I didn't even remember what the medical event was. I actually wasn't even going to finish the book but then the last chapter is about Terri Schiavo and that... that hits home for me. I had an uncle who was in an almost identical situation at almost the same time not far from where Terri was and I can tell you right now, that is a diminished quality of life. Nobody, absolutely nobody can tell you that anyone would want to live out their last days immobile and unable to communicate, or do anything for themselves. Just shy of a vegetable. That's not life. If you wouldn't leave your family pet to live like that, you shouldn't leave your loved one like that. And I could go on for days about this, I really could. I could also go for days about the authors almost.. anger at his doctors for wanting to declare him brain dead at one point. He makes it clear from the start of the book that he was clearly at a not great hospital and that every box you can check off under the "It's going to go all wrong" list was checked off for him, and honestly? That's on him. We all put our trust that the hospitals and doctors we trust our bodies and health to know what they are doing. When you think of ALL of the information that these simple human beings are required to know at any given second, at the drop of a dime, at the turn of any catastrophic event, look around every corner and predict any number of things that can possibly go wrong and you know what?

Shit happens. It does. It happens, and it's unfortunate. Mistakes happen to good people. Doctors can make mistakes but all they can do is give us the options based on the information they have on hand at that very second.

Overall? I pretty much hated the book. I felt like the author was angry, a little arrogant, and I can imagine he would be that nightmare asshole patient a doctor would dread having, to be honest. For as much as he claims to be a man of faith, and as full of compassion and love, and how he tries to live life as God intends, this book doesn't come off like he's doing that well. 

Monday, May 8, 2017

The Compassionate Achiever (review)

*I received an ARC in exchange for a fair and honest review. This post also contains affiliate links that I may be compensated for; however, all opinions are my own.*

If you are new to my blog, I invite you to read Lucy's birth story to understand kind of the back story to why I immediately jumped on this book tour.

The Compassionate Achiever: How Helping Others Fuels Success
A powerful, practical guide for cultivating compassion—the scientifically proven foundation for personal achievement and success at work, at home, and in the community.

For decades, we’ve been told the key to prosperity is to look out for number one. But recent science shows that to achieve durable success, we need to be more than just achievers; we need to be compassionate achievers.

New research in biology, neuroscience, and economics have found that compassion—recognizing a problem or caring about another’s pain and making a commitment to help—not only improves others’ lives; it can transform our own. Based on the most recent studies from a wide range of fields, The Compassionate Achiever reveals the profound benefits of practicing compassion including more constructive relationships, improved intelligence, and increased resiliency. To help us achieve these benefits, Christopher L. Kukk, the founding Director of the Center for Compassion, Creativity and Innovation, shares his unique 4-step program for cultivating compassion.

Kukk makes clear that practicing compassion isn’t about being a martyr or a paragon of virtue; it’s about rejecting rage and indifference and choosing instead to be a thoughtful, caring problem-solver. He identifies the skills every compassionate achiever should master—listening, understanding, connecting, and acting—and outlines how to develop each, with clear explanations, easy-to-implement strategies, actionable exercises, and real-world examples.

With the The Compassionate Achiever everyone wins—we can each achieve success in our own lives and create more productive workplaces, and healthier, less violent communities.

Before I had Lucy I had really struggled with people. I was that mom who volunteered at every opportunity at my kids' school, any time a friend needed help with something I immediately offered to help out. I took on far more than I should have onto my plate and there were many nights that I would stay up far later than I should have getting things done for other people. I felt tremendous guilt saying no to someone, even for minor things, because I knew what it took to ask for help so I assumed if someone was asking me it was because they really needed it. I hated to let someone down. I did this for years. I felt so unappreciated, unrecognized, unacknowledged, and frankly- abused. It got to the point where I started actually resenting the very things I used to enjoy doing. I wanted to be helpful and now I hated it. I hated being dependable. I hated being organized. I hated all of these things because now people just expected me to take care of it all. 

Then I died. And the world stopped. And crisis happened. I had no idea any of it was happening, but all around me, people rallied. They rallied small and they rallied big. People I did a lot for, people I did nothing for but who recognized that I had done a lot for others. But they rallied all around me and my family and they helped us get through a really horrific event. 

My act of dying reminded me that compassion is still out there. People still have it. It's maybe not practiced every day, or maybe we just aren't seeing it anymore, but it's still there. Somewhere in all of us compassion sits, waiting to be reached. Which is why when I saw this book I immediately jumped on it because I am absolutely convinced all of the positives that have come to my family in the aftermath of Lucy's birth don't have much to do with a greater power but more so in the fact that I am a good person. Matt and I are good people. We do good things for people as often as we can. We don't ask for repayment or recognition, we just hope that someday if we ever need help you'd be willing to help us- and it actually worked. 

As I went through this book I was pleased to find that it isn't just business speak that you read, nod your head, and then it sits on the shelf in your office totally useless. It gives you practical uses. How do you pull compassion from people? How can you turn conversations, that could easily be heated and uncivil, to calm and reasonable? How do you get each side to see each other's point of view, not necessarily to agree, but to actually listen to all points. The book talks about how compassion isn't just a great quality to have as a human being but how it actually improves a work place (or a school environment) and the quality of life in a community. I was reading this thinking this would actually make a great textbook in a humanities class in college but why wait? Why not have this as part of a high school curriculum? As part of a social studies class? I know compassion, and empathy, are things we should be teaching at home but let's face it- we're asking parents to teach something they themselves don't have. The book mentions how compassion starts to really dip in the 1990's but that we are at an all time low right now, so that means those kids of the 90's (me, for example) are now parents- no wonder it's at an all time low. We're asking people to teach and pass on something that they themselves don't have. This book gives us a four-step, totally easy, common sense program, to do that. You can do it with your kids, your friends, your co-workers, or the people you supervise. It's really such a great book to read for anyone because there are so many ways to use it in your life.

The book is available on Amazon of course, but you can also find it on the Harper Collins website, as well. If you want more information about the author, Chris Kukk, I encourage you to follow him on Twitter and on his website