So, What's Up With That Face Leash?

Us, being silly out on a movie date
Us, being silly out on a movie date

Today marks my one year anniversary of being on 24/7 supplemental oxygen. It’s been a frustrating, humbling, and boring year. At home, I have an oxygen concentrator (about the size of a large suitcase) with a 50+ foot tube that connects to the cannula on my face. When I’m out, I have a 2.5 ft oxygen cannister on a hand cart that I take everywhere. It is amazing what a short, fat woman on an oxygen cannister can get away with. No one turns you down. Everyone (except snippy medical personnel) helps you out, whether you want it or not. And that’s the humbling part. I’ve always been the one to help others but this past year and more I’ve been the one needing help, from my husband, from family, from friends, and from total strangers (like all the awesome medical personnel I have met this past year+).

The most exciting things to happen to me this past year have all been medical. Oh, and we finally got fiber optic internet which is so fucking amazing! It’s great to watch Netflix or Amazon movies without the internet stalling out. I can stream music, download an audiobook, and watch trashy TV all while checking email. I feel like I have truly entered the 21st century.

Anyway, as I’ve mentioned before Bill and I travelled twice to Denver to the National Jewish Health Center (known for their expertise in respiratory ailments) earlier this year so that I could get properly diagnosed. My New Mexico doctors had thrown their hands up in the air back in March, essentially saying they didn’t know what the fuck I had. Turns out I have CTEPH which can be caused by a few different things. But for me, it means that my body had been throwing small blood clots towards my lungs for some time, piling up in (and partially blocking) the pulmonary arteries (the veins from heart to lungs). They then hardened, like blood will do to form a clot. A year ago, I thought I was simply fighting a bout of pneumonia and asthma. Turns out I don’t have asthma at all, tho the two illnesses share many of the same symptoms.

For me, the CTEPH has caused a moderately high degree of pulmonary hypertension, which will be fatal in 6-10 years if I don’t have this big surgery to remove the blood clots. Pulmonary hypertension is basically pressure within the heart. My heart is enlarged and the right side is pumping inefficiently (quaintly referred to as right-side heart failure). Essentially, my heart is a pump under back pressure, and like all pumps in that situation, my heart will eventually fail…. unless I remove the cause of the back pressure (those pesky clots).  There’s only a few places in the country that will perform the surgery. So later this month we travel to the nearest and supposedly the best medical center to have this PTE surgery – San Diego, California.

It’s a huge pain the ass but it must be done. Through family we have house sitters, having cats and dogs (we rehomed the goats, donkeys, and chickens back in September). I have to get all my medical equipment ready for the trip. There’s bits and bobs of paperwork to do as well. I have 4 days of pre-surgery testing, after which the medical staff will give me my own tailored mortality rate concerning this surgery. Yep. Never a phrase you want to hear.

If all is as we expect after the testing, I’ll have an 8-10 hour surgery on Ground Hog’s Day, February 2, 2017. My sternum (breast bone) will be cut in half, my heart and lungs will be put on bypass, and then my body temperature will be dropped to a chilly degree I wouldn’t want to experience naked even in the best of circumstances. Then, when they are ready to remove the blood clots, they will actually stop circulating my blood for 20 minutes at a time. I will need at least 2 such sessions to remove all the clots (they circulate my blood in between to keep my brain functioning).

If you watch the video above, then you get to see these whitened, hardened blood clots they remove. They look like weird sea creatures, don’t they? I hope they take pictures of mine and that I get copies of those photos.

Anyway, once they put me back together, I’ll have 10-20 days of in-hospital recovery before they will release me to some responsible-looking adult. I won’t be allowed to drive, lift more than 10 lbs, lift laundry, etc. for 6-8 weeks afterwards as my breast bone heals.

All my doctors have told me how fortunate I am to be alive. In fact, some are rather gleeful at having a CTEPH patient. I’m told we’re rare, especially in the lightly populated state of New Mexico. They say things like: CTEPH is very difficult to diagnose… in a living body; I was lucky the pulmonary emboli (blood clots) were small and didn’t kill me outright; we have this incredible surgery to remove the clots, curing me of CTEPH and pulmonary hypertension. It took me a while to realize how lucky I was because it took so long to decline to this state, and then even longer to be correctly diagnosed.

Bill making me laugh
Bill making me laugh

I’ve had to give up quite a bit due to this illness. All my volunteer activities. My home business. My social life. My physical well being. Yet more than all that, this illness and my inability to carry my load has affected those closest to me. Bill’s work schedule has suffered. Our house has been a perpetual mess. We’ve given up the farm animals to make life easier (and they deserved better from us). This surgery could give me the ability to get back to my life. With that, I look forward to it.

2017: In the Beginning, Challenges Were Made

Here we are in a brand new spanking year. My husband started it off with a kidney stone. Yeah. Poor dude. So we’ve been binge watching a lot of TV and I have been lazy about posting.

I’m sure some of you have noticed the new look. What do you all think? I’m loving it! Jess from The Audiobook Worm did all the grunt work and she did a fantastic job of interpreting my nebulous requests. Thanks Jess!

VintageScifiBadgeSo, 2017 holds many challenges for me. First, I want to participate in Vintage Sci-Fi Month which is hosted by The Little Red Reviewer. I love Vintage SF Month but I wasn’t a good player last year due to illness and this year may be the same but I’m going to give it a shot anyways. Anyone is welcome to join and the only requirement is that the SFF be 1979 or older (books, movies, TV, radio dramas, whatever).

I’m also going to try an audiobook challenge this year. 2017 Audiobook Challenge is hosted by Hot Listens and Caffeinated Book Reviewer. They also have a GoodReads group for this challenge or you can keep track of everything on your blog or both. I like this challenge because there’s only 2 check-ins throughout the year, so it’s pretty low maintenance but you can put as much effort and socializing into it as you want. I already know I listen to a lot of audiobooks, so I’m aiming for the Marathoner level (50+ audiobooks for the year).

Next, there’s going to be some year-long reading challenge on the Lazy Day Library Reviews FaceBook group. I didn’t participate in last year’s challenge since I was hospitalized in the first part of January 2016 and felt like crap for several weeks afterwards, so all sorts of stuff just got shoved to the side. But this year I hope to participate. The particulars aren’t set yet but the host is running a little contest, taking suggestions for goals for the challenge.

Clementine being cute.
Clementine being cute.

I hope to finish out the Terre D’Ange Cycle (by Jacqueline Carey) Read Along this year. We’re currently on Book 7, Naamah’s Kiss and will be wrapping that up this month. But then I have to go do this major surgery thing (PTE surgery for my CTEPH) in early February out in San Diego (two states away), so I’m not sure when we will resume with the next book as my in-hospital recovery could be up to 20 days. I have never read the final book in the series as I was saving it for something special. I expect other people have done this odd thing – you know, when you don’t want the adventure to be over so you put off reading that last book…. So, that’s what I’ve done and it’s finally time to read it and it would be great to do so with the on-line group that’s gone through this series with me. They have been wonderful folks and have provided so much insight for one of my favorite series of all time.

What are your bookish goals for the year?

The Best & Worst of 2016

2016 is finally over! It was a tough year for me, even right up to the end where I caught a nasty holiday bug. I did read a lot of great books last year. According to my Goodreads profile, I read 208 books, nearly 100 less than the year before. I blame my new found love of Netflix bingewatching for that. Here are my favorite 11 books of the year, in no particular order (no counting rereads).

Red Rising by Pierce Brown

BrownRedRising

 

Ready Player One by Ernest Cline

ClineReadyPlayerOne

Skin Game by Jim Butcher

ButcherSkinGame

Cemetery Lake by Paul Cleave

Tofu will help me hide the bodies.
Tofu will help me hide the bodies.

Anne Manx on Amazonia by Larry Weiner

WeinerAnneManxOnAmazonia

Chapelwood by Cherie Priest

PriestChapelwood

The Green Children by Domino Finn

FinnTheGreenChildren

Dragon Gate by Gary Jonas (Jonathan Shade #3)

JonasDragonGate

Zaria Fierce and the Enchanted Drakeland Sword by Kiera Gillett

GillettZariaFierceAndTheEnchantedDrakelandSword

You’re Never Weird on the Internet (Almost) by Felicia Day

Chupa being weird.
Chupa being weird.

Cthulhu Armageddon by C. T. Phipps

PhippsCthulhuArmageddon

I did some rereads this past year – The Dresden Files by Jim Butcher (yep, from the beginning), Terre D’Ange Cycle by Jacqueline Carey (I’ve been reading with a great group of on-line friends and we’re up to Book 7 now), Dune by Frank Herbert (just because it’s awesome), Babel-17 by Samuel R. Delaney (I read this in paperback some years ago but now it’s available as an audiobook and it is incredibly well done).

Here are the top 3 books that didn’t do it for me:

Lover Eternal by J. R. Ward

WardLoverEternal

A Hunger Like No Other by Kresley Cole

ColeAHungerLikeNoOther

Hair Power by Piers Anthony

AnthonyHairPower

I also joined a romance book club. I’ve never really enjoyed romance novels. I don’t mind if a book has romance in it but the main plot has to be something more than finding true love or getting laid for me to really enjoy it. So, I thought perhaps I was wrong in binning romance books all together and pretty much ignoring them. With that in mind, I joined this lovely group of people and gave the romance genre a real shot at winning my heart. We read several paranormal and urban fantasy romances, a few contemporary romances (some with suspense and one with BDSM), and 1 historical fiction romance. In general, I was underwhelmed. Some of the books did exceed my expectations and for romance novels they were good, but none of them made it into my top 50. Let me slightly amend that. I had the opportunity to host twice, which means I picked the book we read. Both times I picked books I had not previously read and one of them was Darkness Haunts by Susan Ilene. There is no romance in this novel. There’s a spattering of flirting, but that is all. While several people enjoyed it (including me), it does not count as a romance novel. Obviously, I’m not a good host for a romance book club but the group was great about it.

Also here are some of my notable firsts for 2016:

My first Stephen King novel – 11-22-63

King112263

My first Star Wars novel – Heir to the Jedi by Kevin Hearne

Guess which side of the Force Chupacabr is on?
Guess which side of the Force Chupacabra is on?

My first Podiobooks audiobook – Marker Stone by Paul J. Joseph

JosephMarkerStone

My first Kurt Vonnegut novel – Cat’s Cradle

VonnegutCatsCradleTofu

As 2016 ends, I am looking forward to a better year in 2017. I spent all of 2016 sick and most of it on bed rest. It took quite some time and many doctors to get diagnosed. I now know that I have CTEPH and in February I will be in San Diego having PTE surgery to hopefully correct the issue. It’s a major surgery and I could be in the hospital recovering for up to 20 days. So if Dab of Darkness goes dark between Ground Hog’s Day and Valentine’s Day, it’s just me laid up in a hospital recovering. Life should get better after that surgery and I’m just really looking forward to being on the other side of it. 24/7 supplemental oxygen makes life rather boring, as I can now attest to.