January health progress

yoga

I was reluctant to post another health update because zzzz. But I’ll be glad to have a record of where I was at in January.

December was pretty rotten health-wise. January got off to a very rough start, but I am finally seeing a bit of improvement (insert very quiet and non-jinxy woo-hooing). I went to Utah to see specialists during the first of the month and learned some interesting things:

  • My heart is doing really well. The Gore Helix device placed to close my PFO in 2012 looks great. I had the most thorough echocardiogram of my life (with Bubble test) and while I still have 3 faulty valves, the regurgitation is very slight and not the culprit of any of my issues. It’s a relief to rule out further heart surgery.
  • Non-diabetic Hypoglycemia is something I’ve dealt with ever since I was a kid, but it may actually be playing a bigger role in my health problems than I would have thought.
  • The introduction of sauna therapy is providing a lot of relief with my hives. WHO KNEW. Obviously this wouldn’t work for heat-sensitive Urticaria, but my hives calm down in a sweat lodge environment. My naturopath claims I am sweating out toxins while my mainstream MD doctor just believes getting my body temperature up (especially since I run low anyway) calms down my mast cells and histamine response via degranulation. Whatever it is, I’ll take it. Besides it’s uber relaxing.
  • I’ve also been encouraged to more mindfully and regularly enjoy yoga and meditation. Initially I totally scoffed at meditation. Like, what? Lay around and picture myself on a beach? Not sure where to start I downloaded the headspace app. It’s nice (I appreciate how pretty it is and how cute the animations are) but once you go through the free modules, it’s pretty spendy to subscribe. I’m not able to do my favorite yoga DVDs yet, but I’m super loving Yoga with Adriene on Youtube. She has lots of gentle routines that are perfect for me right now, plus she’s adorable.
  • My endo has not started me on T3 only meds as I had originally thought. Instead he’s been testing and tweaking other supplements and medications and we are watching my low thyroid levels come up. He does not think I have Hashimoto’s! Instead I have what he calls “secondary hypothyroidism” meaning my low thyroid test results and symptoms are being triggered / affected by something else.
  • Among things he’s tweaked, he raised my potassium and iron. I’ve managed to keep my calcium and magnesium levels in the good range, but my potassium is perpetually too low. By tripling my prescription-strength potassium dose, and starting a stronger iron pill, I have seen a HUGE reduction in my fainting and tremoring episodes!
  • Along those same lines, he suspects a possible progesterone deficiency. I am undergoing testing for this. Anyone with experience taking bio-identical hormones?
  • Some new supplements the naturopath started me on seem to be helping as well. A probiotic without any histamine-inducing strains, something called Quercetin, Pycnogenol (don’t ask me to pronounce it), and Copper.

Ta dah. I hope you didn’t fall asleep on your keyboard. If you did, you can blame the comment your cheek left me below on your cat.

steamroom

Hasta la pasta, lovers.

2014 in books (finally)

readingisdangerous-tumblr

My original opening for this post was “Happy New Year, everyone!” because I started this post on the 31st of December thinking I could have it ready to post the next day.

HA. HA. HA.

As has been my tradition in recent years, this is a list of books I read in 2014. I thought it would be super cool to stick the book covers in, linking everything to Amazon for my and my readers’ convenience (affiliate links ahoy, btw). Remind me to never attempt this again. Holy tedious and time consuming. Adding the covers also meant that I had to write a bit more than I normally would about each book so it wouldn’t look weird. Which led me to fretting over consistency (eg: noting recommended ages every time? Only when I thought it was relevant?). I was not consistent. But I am not editing this behemoth post one more time or I shall lose my ever loving brains to madness.

I did try for some level of order by grouping the books by series and/or by author, and I’ve asterisked my favorites. As usual, I’m leaving out churchy books and innumerable picture books I read to Mr. B. Thank goodness, or I would not have finished this post until 2025.

I know nobody cares about these but me, but make me feel better for all the time I wasted spent writing it and pretend like you read it. Especially since all your feed readers are probably janking up all my painstaking formatting. (And let’s ignore the fact that I haven’t updated the sidebar thingy of books in months and months.) Tell me what your favorite book or series was of 2014, K? And send recuperative chocolate. I need a nap.


The Archived*:

This is the first book in the series. It’s quite clever and different, a little dark and spooky at times. The dead are archived in a kind of spirit-morgue, and their disoriented shades can sometimes escape into a dark hallway between worlds. The protagonist (female) is tapped by her grandfather before he dies, giving her a key to that middle place, and her job is to get the disoriented shades back to the archive.

The Unbound*:

Second book in the series. Just as good, maybe better, than the first one. I’ll definitely read the third when it comes out.


Cinder: Book One of the Lunar Chronicles:

I wasn’t sure what I’d think of Cinderella as part cyborg, but I liked it. The author overused the word “flinched” which drove me nuts. Full review here.

Scarlet: Book Two of the Lunar Chronicles:

I was disoriented at first, as I often am, when an author switches the point of view. I still liked this well enough, but I had to air some grievances on goodreads. Even so, I will read Cress when I get around to it. (Update since this post took me nearly a month. I’ve finished Cress. Eh.)


Ballad: A Gathering of Faerie:

This is a sequel to Lament: The Faerie Queen’s Deception, which I read some time ago. I really should have reread it but didn’t bother. Even with my fuzzy recollection of its predecessor, this book stood on its own.


The Disreputable History of Frankie Landau-Banks:

If you asked me what I thought of this book and I answered you without looking back on my Goodreads review, I would have gushed about the book and told you how much I loved it. I’m surprised that in reality I only gave it three stars. Huh. Well, I suppose I make good points in my review, but still, the book has sat well with me long term and I’d recommend it, especially if you like YA but are getting a little tired of the tripe.


Angelfall (Penryn & the End of Days):

This book has a lot of five star ratings; I am firmly in the minority though, because I hated it. It was genuinely ridiculous. You can read all my eyerolls in my review here.


The Girl Who Fell Beneath Fairyland and Led the Revels There:

I absolutely adored the first book, The Girl Who Circumnavigated Fairyland in a Ship of Her Own Making, and this one did not disappoint. I have not read the third one yet, The Girl Who Soared Over Fairyland and Cut the Moon in Two, though I plan to. Miss K. loves these as well.


Gone:

When this YA dystopian fell flat for me too, I started seriously questioning whether or not I’d finally grown out of the genre. Full review here.

Hunger: A Gone Novel:

Tried to give this one a chance, but things just got more Lord of the Flies-ish and a whole slew of new characters were introduced where the originals were already kind of hard to keep track of. I speed read it and wished I hadn’t bought it. I read the rest of the series synopsis on Wikipedia and called it a day.


Left Neglected:

I took a departure from YA and read this at the recommendation of my mom, I think. It’s another I’d probably tell you I really liked, again I’m surprised I only gave it three stars on Goodreads. I’m glad I write this stuff down, because I’d forgotten all my beefs.

Still Alice*:

This book is similar to the above in that explores a similar theme (this one is early onset dementia). I was nervous to look at my review, because I remember this book fondly as well. But I really did like it, hooray. I’ll be interested in seeing the movie.


The Dirty Life: A Memoir of Farming, Food, and Love:

I read this on my friend Kat’s recommendation. We both have farming dreams and the people in this book have made that dream a reality. Full review here.


Dark Triumph: His Fair Assassins, Book II*:

This is a sequel to Grave Mercy: His Fair Assassin, Book I, which I read last year and enjoyed. I was a bit nervous to read another YA book, but I really liked this. I found this book even better than the first, and I will absolutely read the third one. Full review here.


Call the Midwife: A Memoir of Birth, Joy, and Hard Times*

Call the Midwife: Shadows of the Workhouse*

Call the Midwife: Farewell to the East End*:

I loved these books. I watch the PBS series, too. Chummy is my very favorite and I’m still in fits over losing Jessica Raine.

The books provide an extra depth and insight you don’t get in the show — though the show is very, very well done. The glimpse you get into the workhouses and the tenements is incredibly eye opening, and of course I love all things midwifery. Highly recommend.


(Grouped by author; these books are unrelated, and are not a series)

Stardust*:

I’d seen the movie, of course, but never read the book. This was my first Neil Gaiman and I fell in love. It’s quite different than the movie!

Coraline*:

I haven’t seen the movie as I thought it looked a bit too creepy for the kids to enjoy, but I really liked this book! I am a die hard Gaiman fan now.

The Graveyard Book*

I really had fun with this book! It was completely unexpected since it’s written for children, yet I found it quite gripping… I think some of my kids would be afraid at certain points, especially the beginning when the murders occur, but really well done and would be fun for the older child who isn’t easily frightened / prone to nightmares.


UnEnchanted: An Unfortunate Fairy Tale:

I’m very sorry to say that I completely forgot about this book. It was a Kindle Freebie, I think it’s self published. It had some editing errors, but what I can remember I thought the author’s premise was a good idea, it’s a fairy tale rewrite and I’m fond of those. The main character is a descendent of the Brothers Grimm.


Gilded:

I’m a privileged white lady, but the white-washing of a tale set in South Korea was kind of disappointing; it could have been great. The interesting mythology and Korean setting made a colorful and vibrant backdrop for a story that should have starred characters just as cool. I was initially excited to have a part-Asian female protagonist with some serious defense skills. But then the love interest was a white bread American kid. Who spoke better Korean than the protagonist. And also did all the saving. Harrumph. I’m not the target audience, I’m sure teens will like this, but I constantly read and hear about the under-representation of cute Asian boys in our YA literature. With the perfect set up, why on earth couldn’t he have been Korean?


(Grouped by author, these two books are not related to one another)

Ella Enchanted:

I read this with a little apprehension because the movie is so cheesy (though my kids really liked it), but of course it was much, much better than the film. Some of the plotting felt a little weak, but I think it’s spot on for the target audience. Miss K gives it two thumbs up.

The Two Princesses of Bamarre:

Goodreads review: I liked this one quite a bit more than Ella Enchanted and again think my daughter would love this. Miss K. has this on her Kindle now.


Timebound (The Chronos Files):

I went in with low expectations and was pleasantly surprised. It is very clear the author did a lot of plotting and planning to get all the mind-bending time travel right, and after a slow start I found myself engrossed.

Time’s Echo: A Chronos Files Novella:

I usually ignore mini novellas between books, but this one was interesting. It gave some additional background to one of the main characters. I don’t think it’s necessary to the overall story though, just kind of fun.

Time’s Edge (The Chronos Files Book 2):

I started this (free for Kindle Unlimited subscribers) before the end of the year so I’m adding it here, but I didn’t finish it until this month.


Brightest Kind of Darkness:

I didn’t love this, but the books have a pretty strong fan base, so maybe you’ll love it? It has an interesting premise – a girl dreams every single night how the next day will go. It allows her to be a very good student and star athlete without trying. There’s an Edward Cullen type. Ending was a little confusing.


Remembrance:

This book has some problems; it’s the author’s first attempt. The author seems very nice and I’m sure she’ll improve, so I think that’s all I’ll say about that.


Stained:

Oh dear. Okay, I tried to be nice with the last two, but I have words to say about this one. Right in the beginning, our protagonist watches her house burn down. With her loving foster parents inside. Her whole life, up in flames. People who loved her, took her in, cared for her, gone. Dead. There’s some kind of freaky grim reaper hovering over the house so she tails it to a warehouse and meets another angel of darkness. Who is totally hot, you guys. So hot that she forgets to mourn her foster parents. She’s such a great person! There’s another hot angel. Our heroine has some kind of birthmark that means the hot angels are supposed to kill her, but don’t of course because hotness… oh sorry, I have to go wipe up the liquified brain that is leaking out of my ear and staining my pajamas. Be right back.


The Near Witch:

I liked The Unbound and The Archived by this author, so I gave The Near Witch a chance. It was quite good — I think if you like Robin McKinley stuff (and I do), you’ll like this. Creative, different, and clever, while at the same time feeling like a very old tale.


Pollyanna:

I watched Disney’s Pollyanna many times growing up, and couldn’t believe I’d never read the book. So I did. It’s better, because of course it is. Pollyanna is a Mary Sue, but you can’t help liking her anyway. Who knew she got hit by a car rather than falling out of a tree? The aunt’s storyline is sweeter and she softens towards her little ward much earlier in the story.


Little House in the Big Woods:

I bought the Laura Ingalls Wilder full-color set back in 2011, fully intending to read the books aloud to my kids. We read the first one this year, and got partway into the second, but we stalled… and it’s mostly because I was kind of appalled. There are very racist attitudes towards the Native American Indians, which, I know, that was the climate of the era, but it’s harder to read than I remembered. We had some good discussions about those issues, but it ruined my memories of the books. Maybe we’ll come back to them when everyone is older. Right now I have a hard time reading “The only good Indian is a dead Indian” to my 5 year old.


The Thief*

The Queen of Attolia*

The King of Attolia*

A Conspiracy of Kings*

Pam recommended Megan Whalen Turner’s The Queen’s Thief series to me ages ago. All I have to say is WHAT TOOK ME SO LONG?! This series is AH-MAZING. If you haven’t read it yet, do it. It’ll take you a little bit to get into the story at the start, but please, stay with it.

This is not a perfect comparison, since I think Turner is in a class of her own, but the books have a similar feel to the best of Robin McKinley, Catherine Fisher, and Sherwood Smith, all authors I love.

The best part is that the entire four-book series is wonderful. There isn’t a weak book, and it’s such a great, epic story. The world-building is fabulous, and still very real and vibrant in my mind, even after months. The characters are rich and admirable, and the magic and intrigue is just right. Turner handles the politics between kingdoms with aplomb and it never gets boring.


The Runaway King:

This is the second book in this series. I read the first book, The False Prince last year. I came across a blurb comparing these books with The Thief series above. I read the synopsis for The False Prince to brush up on the background and dove into this. I gave it a harsh review on Goodreads here. I probably would have been kinder without the Turner reference?


The Age of Innocence*:

I’ve been meaning to read this for years and finally did. As an Amazon freebie, there’s really no excuse. One should read the book that won the first Pulitzer Prize for a woman, no? Seems like a general must. More from my Goodreads review here. Recommended! Read the book before you watch the movie.


Janitors, Book 1:

I read this one hoping it would have more crossover appeal for a grown up. I thought maybe it could be a series we enjoyed together like Fablehaven, but it was a little too young for me and I wasn’t motivated to finish the other books. My big boys and my daughter have read them all, though and love this series.


Gaining Ground:

I listened to this after my friend Kat recommended it to me. This sits a bit better in my memory than it apparently did right after I finished it. Slightly critical (though I think fair) review here on Goodreads. I’d still recommend it for anyone nurturing farm / homestead type dreams.


Salmon Fishing in the Yemen:

I saw the movie (I have a crush on Emily Blunt) first, and that colored my feelings about the book. The book a freebie if you have Kindle Unlimited, so give it a shot. I think you’ll like it more if you read the book before you see the movie. Full review here.


(I’ll group all the Francis Hardinge books, designating the ones that are a series. Hopefully it’s not confusing.)

A Face Like Glass*:

Five hundred million stars. I can’t remember how I stumbled across this book, this first foray into the wonderful world of Francis Hardinge, but I was hooked. This is a stunningly written story with incredible world building like nothing else I’ve ever read. Poor comparisons could be drawn between this and The City of Ember or the Gregor the Overlander series, only for the similarity that the world building takes place underground. Here’s my glowing review at Goodreads. I’ve read all her books now, and this is still one of my favorites. It’s a stand alone novel, no sequel.

Gullstruck Island*:

I cannot figure out why Francis Hardinge is not getting more buzz. It can take a little bit to get oriented in the beginning of a book, but once you do it’s totally worth it. Confusingly, this book is also known as “The Lost Conspiracy” for some reason (UK vs. US releases?) It’s a stand alone novel as well, and it’s gorgeous, too. Really cool world with interesting tribes and races, adventure, and eventual triumph. Short Goodreads review here.

Fly by Night*:

Mosca Mye makes a wonderful and admirable protagonist. Taught to read by her rebellious father before she is orphaned, she’s one of very few who can in a world where reading is banned. Plucky and resourceful, her adventure takes place in another terribly interesting world. A world which grows even more interesting in the sequel below. Full review here.

Fly Trap (Sequel to Fly by Night)*:

I was able, of course, to get into this storyline more quickly since I was already acquainted with the world and the delightful characters. Mosca Mye is one of my favorite protagonists, and all the supporting characters are just as interesting. There’s a slight steam punk flavor to this? Hardinge left the series open for future books, though it’s not a frustrating cliffhanger. Full review here on Goodreads.

Cuckoo Song*:

I was scared to read this at first. I’m not into horror and it was classified as such when I first took a peek, plus the cover is kind of creepy. I was afraid it might give me nightmares. But I read the reviews, and finally took the plunge. I am so glad I did! This is a wonderful story, sort of a reverse ‘changeling’ tale, told from the point of view of the changeling. That does NOT do it justice. It’s marvelous. Read it. More gushing here. It’s a stand alone, no sequel.

Verdigris Deep:

This book is also known as “Well Witched” – again, maybe due to the UK / US release differences? It’s my least favorite Hardinge book, but it’s still quite good and has a lot of interesting elements. The world building isn’t the same, as the story takes place in a regular, modern town.

All in all, I cannot wait for her to write more, she is cemented as one of my all time favorite authors.


The Complete Harry Potter Collection*:

I was really sad all the Francis Hardinge books were over. I downloaded a few samples of different Goodreads suggestions and they all fell short. So I re-read the whole Harry Potter Series, including the short (800 words) snippet Rowling wrote of the maurauder days.


Half Magic*

Magic by the Lake*

Knight’s Castle*

The Time Garden*

My mom started reading the first book in this series to the kids when she was staying with us at the onset of my POTS symptoms. I finished it up, and read the rest. We all really enjoyed them — since the children in the books magically time-hop, there were lots of springboards for various homeschool history activities, too.

Eager is charming and has a way of writing that engages kids without talking down to them. My children loved the ‘twist’ of the last book. Really delightful. We need to add his other books to our read-aloud list.

FYI see my note on Magic by the Lake, there’s some racism that needs discussing if you’re reading aloud or letting your kiddos read these on their own.


(I’ll group all my how-to write type books together.)

The Forest Through the Trees:

This was a re-read for me. I’ve read this for the past couple of years, I think, to gear up for National Novel Writing Month, but I’ve cherry picked in the past. This year, I read it straight through and took better notes. She has good advice. I particularly enjoy her descriptions of different types of readers and why some of us (ahem) who perpetually feel like we have novels banging around in our heads fail to get them written down.

On Writing: A Memoir of the Craft:

This book is constantly recommended to wanna-be writers. Folks say that even if you aren’t a Stephen King fan, you’ll love his thoughts on writing. I am decidedly not a fan of his work, but figured I could listen to his memoir on a road trip. My full review is here. In short, I don’t know if I can recommend the book as emphatically as others. I think I’d recommend it mostly for King fans who want to know a lot more about his life.

Second Sight:

It’s not really a book that flows from chapter to chapter, it’s more a collection of talks and blog posts.  Written by the editor who served as J.K. Rowling’s continuity editor in the states (I think for the 5th, 6th, and 7th books).  She repeats herself a little, from talk to talk, but I enjoyed it.  She has some good, practical advice, and offers some tools for editing and planning your characters and plot.

The Writer’s Guide to Fantasy Literature: From Dragon’s Lair to Hero’s Quest:

This was another re-read, and honestly, I read it again mostly because I was still in my post-Hardinge mourning period, and because I felt like I ought to continue reading something proactive to gear up for November’s Nanowrimo. It too, is a collection of essays, and it’s a bit outdated. Funny how 2002 feels like it should have been just yesterday, but was really quite a long time ago.

A Writer’s Guide to Harry Potter*:

This is a re-read too. I have zero (less than zero) desire to be the next Rowling, but this book is insanely helpful in studying the structure of a successful novel. The author examines the Potter world under a microscope and it’s so much more help than books that do the same thing with works I’ve never read or seen.

Screenwriting Tricks for Authors*:

Recommended by my internet soul sister, Jessica, this one is a game changer. It has the potential to ruin movie viewing and book reading forever more, but explains the structure (and the why!) behind a good book or screenplay and it’s pretty much the most helpful book on writing, ever. I’m even going back over it and actually doing the assignments.


The Mysterious Benedict Society:

We picked up this audiobook from the library to listen to together. It’s probably not fair of me to claim it as a book I read, as I missed chunks of it, but what I did hear was adorable and charming. I want to get the actual book and start over. Maybe we’ll tackle this series as our next read aloud.


Champion:

This is the final book in the Legend series. I liked the first two books, the first especially was a strong debut novel. I’m a little lukewarm on the finish but I’m definitely not the target age for the book, so take that with a grain of salt. It’s recommended for grade 7 and up, and has strong reviews from boys (the books have both a strong male and female protagonist).


Mistborn:

My brother recommended this to me. I thought I’d give it a try; see if regular ‘high fantasy’ type books held some appeal (since I’m getting a little tired of the YA scene). I don’t know if it was the best book to try genre leaping with, though. It had some good things going for it (interesting metal-burning magic), but overall it fell a little flat for me. It felt like an awful lot of time was spent on explaining how the magic worked, and that dragged down the pace.


Quiet: The Power of Introverts in a World That Can’t Stop Talking:

Kat recommended this book to me, it was pretty life-changing for her. I think it provides really good insight into the introverted personality type, though it’s a little heavy handed with work-force anecdotes which got a little tedious for me since I couldn’t relate. It also assumes all introverts are highly sensitive people, and I am not. I definitely prefer quiet alone time, but I’m not the type to get my feelings hurt very easily. Full review here.


Magic City:

Edward Eager, author of the Half Magic series above, pays tribute to Edith Nesbit in each of his books. Nesbit’s books are a little tricky to find (this one I’ve linked to is credited to PG Wodehouse (??) even though it’s her book.) We’re actually not quite finished with Magic City, but I wanted to include it anyway. It’s super cute, and even my now 6 year old likes listening.


Seven Realms Series*:

I love this series. I’m reading them aloud to the kids (we’re on the last book) with just a bit of censorship on my part (they’ve got some grown-up scenes and themes more suitable to older teens). The 6 year old isn’t captivated by them, but everyone else is (ages 9 – 13) and me reading even trumps tablet or computer time.

I cannot fathom why these books don’t get more press / swooning / fangirling. They are pretty rad with strong female and male protagonists, richly developed secondary and supporting characters, really vivid and robust world-building, action, magic, conflict, and romance.


Goodness GRACIOUS. I’ve made it to the bottom of the list. That calls for a dance party, no? I’m queuing up some Meghan Trainor and I’m going to carefully boogie in my bedroom. Have a super great Martin Luther King Jr. Day, folks.

2015: Everything is awesome

everything is awesome!

Well. That was a first, I think. We actually accomplished all of our New Year’s Day goals for 2014. It helped that we were aiming low, but still. Here they are, pasted in from this total downer post, crossed out because BOOYAH:

  • Finish the master bathroom (we really are, finally, THISCLOSE).
  • Do the rest of the junk on the sell-this-house list: hall bathroom countertops, kitchen countertops. WE CAN DO IT!
  • List the house with a realtor. I’m over this DIY sell your house yourself garbage. I’ve found one I liked and we should be signing soon.
  • Sell this baby and MOVE. Downsize and rent something tiny and cramped for a while. Figure out if we can really build or buy something old and slowly fix it up.
  • Figure out our work / income situation. Am I going to work full time permanently? If we could get into a smaller home, we could switch roles again or maybe do a part time / tag team type thing.

I remember typing that post. 2013 felt like a kick in the shorts, and I thought if we could get over the major-feeling hurdle of selling the house, things would be looking up.

Tout est tellement génial !

And? Even though my health has been disappointing this year, I cannot deny the joy and relief of selling the house! And being able to quit web design! It’s good, y’all. It really is.

So what if I have a couple (million) hives? Everything is awesome! HA HA HA.

Tout est tellement génial !

My goals this year are pretty humble:

  • Hasten healing. I’m stealing this phrase from Tracy; it’s great. It gives a frustrating process a proactive word. This means continuing on in trying to get good, regular sleep; regularly taking supplements / meds, working towards the POTS exercise protocol; adhering to the recommended diet; charting my vitals; working with my doctors (and, if necessary standing up for the care I need); reminding myself to be patient and kind to myself and my body; and to be accepting of of the situation.
  • I want to maximize quality time with my family. I know. It sounds so cliche, but we sacrifice a lot because of my health issues. I want to make sure that good days and good moments are spent well, and that even on bad days I make sure to connect with my loved ones.
  • Regain financial footing. We are debt free now that the house has sold, and I am so grateful that E has found good, steady work (with stellar health benefits, oh my goodness!). I want 2015 to be a year of careful budgeting and saving. I don’t know if we’ll be able to purchase land or build a home this year, but I want to be working towards that by living frugally and growing our savings.
  • I’d like to prioritize my creative interests. I worked towards that somewhat this year: I tried to make good use of bed-ridden days by taking a novel writing class and starting a portrait drawing class as well. I want to remember to give myself a break from reading medical journals (and, let’s be honest, drowning the blues by reading junky celebrity gossip) to do these things I love.

That’s it.

The LEGO Movie

I’ll be ever so grateful if 2015 brings even a modicum of health improvement (die, hives, die). I wish for us and for you an extraordinarily bright year of prosperity and good health.

Cheers!

p.s. Awesome Lego images aren’t mine, click through the photos for credits.

Caring and being cared for

A few days ago I had some very bad episodes of fainting and tremoring / seizing. It was a really rotten morning, complete with two men trying to lift me to get me to the car and me completely blacking out in the most dramatic of ways. It scares everyone to see me go completely limp, arms swanned out, head back… like a rag doll.

It'd be nicer for those around me if I were all tiny and petite!

Good thing you aren’t really tall and weigh more than 7 stone, or I’d get a herniated disc, darling.

Following a recovery period, I felt well enough to try to walk to the car, to get to where we were supposed to be hours ago. But those around me felt like this was a bad idea and urged me to lie down and rest more.

After repeated requests to try walking, and getting told no over and over, I figured I’d just frightened them all too much and I’d need to show them I was capable. Or, at least, capable enough to get to the car. So, I got up, tested my shaky legs and showed them I could walk. However, I did not convince anyone and they continued to insist I lie down and rest.

Can't you see I'm completely capable?

No really. I can walk!
Can’t you see I’m totally ready to run a marathon?

Still sure they were just frightened I decided to just walk to the car myself. I thought that would leave no doubt that I was really ready to go.

I made it to the car. But! It upset my husband. He felt I had been stubbornly dangerous and inconsiderate of his feelings. After all, he was trying to care for me, to protect me, to keep me from worsening symptoms. Why couldn’t I just rest for another hour?

What on earth does she think she's doing?

What on earth does she think she’s doing?
I don’t know, but it’s kind of painful to watch.

I was shocked and felt terrible. It was not my intention at all to trample over anyone’s feelings, and I am very appreciative of anyone willing to put up with me, let alone care for me. So I tried to explain: I was just following standard protocol. He’s often away at work when these sort of things happen so perhaps he’s not as used to them as I am.

I told him about having an episode at a big box store: When I went to the store several weeks ago I found there were no beep-beep carts available. I only had a few things I needed, so I leaned on a regular grocery store cart and tried to get the items on my list.

My body had other ideas though, and soon I found myself shaking violently on the floor. Despite the uncomfortable and embarrassing surroundings, I did my best to rest, get some salt water in me, and embrace the cold, dirty linoleum for a while. As soon as I felt able, I got up, leaned on the cart, and got out to the car. I rested again for 30 minutes in the car, and drank more salt water (drink of champions). As soon as I felt like I could get home, I went.

This story was not helpful. All my loved ones hear is: Holy crap, she should never go to the grocery store again.

Don't ever do that again, you hear me?  Never!

Don’t ever do that again, you hear me? Never!
But we really needed cat food, and we were out of bananas!

I can understand that response. If someone I loved was seizing on the floor in aisle 6 at the grocery store, I’d be offering to run all their errands, too. However, I don’t think I can adequately explain how not trying feels. Like you’re giving up. Like this thing has won. Because POTS gives you opportunities TO try. It gives you good days or good minutes that feel miraculous. If you don’t seize those moments to feel alive (even at risk of failure!), depression sets in.

So all of this begged a question:

What is the role of the caretaker? Are they just there to help you try to do things that they feel are foolish or unnecessary? Do they not get a say in what they think might be best for you? If you and your caretaker disagree, does the disabled one always win by default because feelings?

It’s a really good question, and I’m afraid I don’t have a good answer, though my husband and I had a good long talk about it (and nobody’s upset or hurt anymore).

Tracy had been planning for YEARS to climb an insane mountain for her 40th birthday. When she injured her hip and found it would not heal, she still had hope that she would be able to climb the mountain. She even tried to make plans with us, because it was so happening.

We, her friends, felt like this was a very bad idea and told her as much, but still, she intended to try. Her diagnoses and injuries continued to pile up including Ehler’s Danlos / Hypermobility Syndrome type III, and POTS. The EDS made her a very bad candidate for surgery to repair her labral tear in her hip socket and she developed an allergy to the prolozone injections that were helping. It became obvious to us that climbing her mountain was not only a bad idea, but a truly dangerous, even impossible one.

Alfalfa and Buckwheat are like, "Stop, don't climb that thing, lady."

Alfalfa and Buckwheat are like, “Stop, don’t climb that thing, lady.”

Though it was very hard for her to give up this dream, she eventually faced facts (broken foot, more injuries, etc.) and realized it wasn’t going to be possible in the immediate future. I’ve learned valuable things from this:

  1. Climbing the mountain was deemed foolhardy / impossible / dangerous many months before Tracy arrived at the same view. It was easy for those of us who were healthy (me included at the time) to roll our eyes and be all, “Oh sure, uh huh, that’s so cute of you.” When in reality the letting go of the dream and the intense desire to make it happen was extraordinarily difficult.

    A caretaker needs to appreciate the strength of the desire to do the thing. Even though NOT doing the thing is the obvious and rational choice to the caretaker, it will take time for the disabled person to see it in the same light.

  2. If Tracy had determined to try to climb her mountain anyway, we would not have been able to stop her. She would have gotten herself there with or without us and given it her best. Maybe she would have pulled it off. Maybe she’d have needed paramedics to bring her down the mountain in a stretcher. But it was still her choice.

    The patient is allowed to make decisions just like the rest of the planet. They might be stupid decisions, or decisions fueled by the delusion that if we just tried a little harder, we could get better, but they are still our decisions.*

* I realize this can only be true to a point. A person can be disabled so far as to be incapable of making decisions, but I don’t think either Tracy or I fit that description, though we can both get very incoherent and garbled if we’re passing out a lot. So in fairness to our caretakers, it is sometimes impossible for them to hear us or our decisions on a matter. (eg: “Put me down! I’m going to pass out!” came out as “Gurphurggle own! Immaona fish oo!”)

* I also realize that from a caretaker’s point of view something we look even fairly capable of doing some days (eg: driving a car) causes worry and concern. We insist that we get pre-syncope warnings and can pull over, but those around us fret and chew their nails. What if one time we don’t get the warnings? What if we just spontaneously black out at the wheel while we are carrying precious cargo?

I have an irrational fear that I'm already a nutter.

I’m going to walk to the car anyway, Mr. DeMille.

As someone struggling with disabling symptoms, it feels like I’m at war. A war between what makes me who I am, and my body’s new and frustrating limitations. The war is sometimes also (though rarely!) between me and those around me. I don’t want to be viewed as self absorbed, stupidly stubborn, or dangerously willful. And yet, it feels like if you give in and just allow yourself to be handled with kid gloves, or rolled in protective bubble wrap, you will lose everything that remains of who you are as a person.

And even when you admit that it’s a bad day, or a bad week, or a bad month and all you are capable of doing lying in bed, it can feel like the only thing you have left is your voice.

Many people with long term debilitating symptoms find themselves divorced and friendless. It is hard to take care of someone in constant need of care. And it is, I imagine, very hard to try and protect that person from additional pain or hardship only to have that person attempt to climb that mountain / run that race / walk out to the car anyway — over and over, and then watch them suffer more because of it. I don’t fear my family or friends leaving me, but I do worry about making sure they feel loved, appreciated, and heard.

My call to walk out to the car was a good one, I didn’t hurt myself, and the rest of the day went well, but sometimes I do misjudge my abilities and I can’t have anyone looming over me saying, “HA, I told you so. You’re too broken to do this thing!” Because that is not going to help anything at all. Not that anyone ever has said that (other than the voices in my head), but you know, I think it’s good to talk about.

silent-movie

My cousin AJ was in a terrible car accident and is a “Para Plus.” (A paraplegic [waist down paralyzed] with additional paralysis in his chest, arms, and hands.) He can move his biceps, but not his triceps. Meaning he can get his arms up, but gravity has to take them down again.

During his occupational therapy (therapy designed to get him more independent) they were working on him getting his own shirt on and off. When I was talking this over with my family and friends, I used this as an example and asked, “Why would this be something they’d work on? His mom is always there, she can help him get dressed and undressed. Why should he expend any of his limited energy on something as frustrating as getting a shirt on with unresponsive arms and hands?”

Oops, I'm not a black and white photo.

Oops, I’m not a black and white photo.

Because! If he can do this small thing, that is a small thing he can do by himself. It gives him a little bit of autonomy in the middle of a life-changing-event where he is suddenly largely and often humiliatingly reliant on others.

Being able to master this is valuable for his mental and emotional state, as well as good for his physical rehabilitation. Could he give up? Could he say “This isn’t working, help me get my shirt on.” Sure. Might he some days? Absolutely. But should anyone stand in his way if he wants to get his shirt on by himself? Tell him they don’t think he looks capable and refuse to hand him his shirt? Absolutely not. And no one for certain should never scoff while he tries to get that shirt on and then roll their eyes and tell him “I told you so” if he fails. (Again, not that anyone ever has!)

AJ is dealing with far more difficulties than I am, but the principle is the same. I need to try. I need to be allowed to try, and I need to be heard when I’m telling you I want to try.

So. Back to our question:

What is the role of the caretaker? Are they just there to help you try to do things that they feel are foolish or unnecessary? Do they not get a say in what they think might be best for you? If you and your caretaker disagree, does the disabled one always win by default because feelings?

I still don’t have a good answer. I know what I feel like I need, but how do I help prevent burn out and frustration of the various caretakers I’m lucky enough to have? I like to think I listen to advice to take it easy. I like to think I give them a say and consider their words, but in the end it needs to still be my decision, right? (For the record, nobody is telling me it isn’t… I’m just overanalyzing tonight.)

The last part of that question is so hard. Especially if it’s over something as small and simple as walking to the mailbox or combing your own hair, because what’s it going to hurt? Let me try this small thing and let’s see how we do. (Again, not that anyone has ever tried to forbid me from doing either of those things, they’re just examples).

It gets stickier if it’s over something bigger.

It's probably the small pox epidemic. Don't worry, Diana; I'll never forsake you. I'll nurse you back to health. Please stay until after tea.

It’s probably the small pox epidemic. Don’t worry, Diana; I’ll never forsake you.
I’ll nurse you back to health. Please stay until after tea.

I’m trying to look at this objectively by recalling the days when I was doing really great and Tracy wasn’t. Tracy was going to try and continue to teach gym classes to a large homeschool group despite her many issues. It was partly a financial decision as they needed the income the classes brought in, but it was also Tracy making a stand. She was not going to let her disease(s) beat her; she was going to continue doing this thing she loved.

Tracy would promise her worried friends that she would lay on a cot during the lessons and allow her assistants to do most of the teaching, but inevitably she’d have a good moment or a good day and would step in to help a child do a back flip or a handspring and something would go wrong and she’d injure herself badly (easy to do when your ligaments and tendons are made of silly putty), which would then trigger a whole bunch of fainting and shaking episodes.

Anne is all, "But Gilbert, if you would only stop teaching gym.  You'd get better!  And we could marry and live happily ever after, and people would make sequels about us that have nothing to do with the original books."

Anne is all, “But Gilbert, if you would only stop teaching gym. You’d get better! And we could marry and live happily ever after, and people would make sequels about us that have nothing to do with the original books. Like, seriously, nothing.”

To her loved ones this was beyond frustrating. Because, of course, the solution to the never-ending stream of worsening symptoms and injuries was: QUIT TEACHING GYM. One of our dear friends got quite cross and asked me, “Can’t her husband do anything about this?!” Well of course he couldn’t. He might say he thought teaching was a bad idea, but could he or would he even want to force her not to try?

(She’s still teaching gym.)

And I’ll probably continue to try walking to the car when I feel ready.

But I’ll still be asking these questions while I do so and trying to work out the answers.

p.s. Happy New Year!

Notes of a Christmas

Christmas Light Rage

This Christmas season was weird, y’all. I couldn’t decide if it was because we were in a new place, or because my health problems were janking up life in general, or if it was because this city had absolutely zero festivities going on, or because the layout of this rental makes decorating strange, or what, exactly. It was probably all of the above. Plus, no snow — though we did get one of those magical White Christmas storms on Christmas Day.

White Christmas

We put up the tree and hung the stockings, but a lot of my other holiday stuff is lost in a box somewhere, maybe stored at Kat’s house. I did have the outdoor lights, though…

One day when we had E home, I was like, ‘Hey, so… it’s a pretty nice day, and I found the outside lights, do you think maybe…?’ and then he, like, collapsed into a puddle of goo on the floor and died. RIP husband who hates hanging Christmas lights.

Christmas Lights

See, it’s normally my job. Early on in our marriage I learned that I’m the only one who cares and if I wanted lights hung outside (and also on the tree), it was going to be me on the ladder hanging them. And that was totally fine. (E is super easy going, I get my way in almost everything, it’s totally okay that he takes a stand on like three things: hanging Christmas lights, never hand-washing dishes ever, and the particular way he likes his underwear folded [I fling mine, unceremoniously, inside-out, into the drawer].) So for years, I hung the outside lights. They weren’t like, award winning or anything, but they made me happy.

However, I started passing out and getting on a ladder or even a step stool seemed like a really terrible idea.

E knew this, and he also knew that putting lights up would be a really nice thing to do for me. So he pulled up his big boy pants and took the box of lights outside. Well. You know that part in A Christmas Story when the dad goes downstairs to swear at the boiler and comes upstairs in a cloud of black coal smoke? That is E with lights. Even a really manageable one strand to just, you know, hang around the garage door. He just gets all sweaty and frustrated and tangled and pretty much wants to murder all the Christmas lights in the land.

coal-boiler

The big boys went to his aid, and between the two of them (while E banged around in the garage ostensibly looking for step stools and duct tape and light clips) they got the lights hung themselves. A for effort, E. I won’t ask you again *heart emoticon*.

Aimless Christmas Eve

In the past we’d established a breakfast-for-dinner-by-candelight tradition on Christmas Eve but it didn’t feel quite right here. In fact, the day sort of loomed, big and empty. I searched in desperation for something – anything – to do in the community, some kind of light display, or caroling, or a church offering a candlelight service, or even a Catholic midnight mass or something, but came up empty handed. Seemed like everyone had celebrations earlier in the month.

white-christmas-movie-still

We watched a couple of Christmassy movies, but it felt like we were watching holiday movies in March or something. I made pancakes for dinner that I couldn’t eat on my keto diet, and when E. got up around 9 after working the night shift the day before, we took a stab at acting out the nativity, but all the boys were in kind of a goofy, farty sort of mood and it was pretty much a disaster.

But, it was a good sign that kids were getting wired and silly. That actually helped it feel more like Christmas and not just ‘let’s play-pretend holidays.’ It was hard to get them to settle down and we… er, Santa, had to wait until after 2am to get presents set up.

I still think my way is awesome

E grew up in a house where the kids woke up at some horrific hour and crept downstairs to bask in the glow of the tree and shake presents. I grew up in a completely different household where Christmas morning was an Event. My parents hung up a curtain in the doorway to the family room, and you were not allowed to peek — I don’t think any of us ever did. When we woke up, ever before 7am (my family is a family of not-morning-people), we would gather in my mom and dad’s room and wait for dad to get completely ready for the day – shower, dressed, hair combed, everything. I don’t think he owned pajamas or anything, and he’s just kind of like that. All buttoned up and tucked in, you know?

Then we’d pose for pictures on the stairs with a sign displaying the date, and then pose again with our heads peeking around the curtain — dad always wanted to capture the look on our faces when we first saw the presents. Finally, we’d be opening presents maybe around 10am? It was a very neat affair, we had to throw our wrapping paper away in a big trash bag before we could open another present. As we got older, we got tired of waiting for dad to get ready so we’d just sleep in and our parents would wake us up late morning to open presents. I think – mom, correct me if I’m wrong – there were even mornings where we ate breakfast first.

Christmassy tree

I fully concede this is not normal, but I long for that kind of relaxed non-frantic morning every year. E says the kids can get up and shake presents like normal children and wake us up as soon as it is light. I say they should sleep in until noon and wake me up at 1:30pm at the earliest.

I lose this debate every year of course, but this year, even though I think all the kids were up at 5, they watched The Grinch with their dad, ate some cereal, and let me sleep until 8:43! Best.Gift.Ever. And also, holy cow, that is some serious delayed gratification. They said it was kind of fun to think that for all the other kids on the street Christmas was OVER, but for them it hadn’t even started yet. I feel guilty about it.

The rest of the day was me and E in the kitchen making feast goodies. Ham, turkey, mashed potatoes, roasted carrots, salad, pies… We still managed to grab a nap, but next year we’re going to fill up some of that “What on earth should we do today” Christmas Eve-Day with the big feast and then enjoy leftovers on Christmas Day. This should allow for a lot more napping since I’m going to let them wake me up at early-o-clock next year.

Anyhoo

That was us this year. Looking forward to getting down to UT to see and hug various grandparents and parents and aunts and uncles. I haven’t mailed any loved-ones their cards stuffed with obligatory kid-photos because I’m afraid if I did it would be too easy to just stay home.

Hope your holidays were/are merry!