Better

Or something like it

It's been 3 weeks since I saw the new doc. He put me back on more steroids, which seem to be helping. I'm trying to get back into some yoga and light working out so I can feel like less of a blob for Hawaii. (Did I tell you all that we're visiting Hawaii soon? I'm pretty stoked for some sunshine and relaxation. BTW, if you have any good tips for the Big Island, please share.) 

I felt pretty sorry for myself for a while, and angry at the whole situation. I had to talk to so many different people for the new med...the hospital, med reps, nurse ambassador (who I'm pretty sure is Jane Lynch's sister or cousin or something), pharmacy reps, insurance people, and others that I don't even know what they do. It was lucky that we're in a later time zone so I could call them before work, but I got so burned out having to talk to all these people and getting so much information to try and keep straight. I mean I'm still trying to figure it all out.

Anyway I was supposed to get my meds just before Christmas. Luckily I had the day off already but Nurse Ambassador (henceforth known as NA) recommended being with someone just in case I had a reaction...so Soldier took some time off to be with me. We sat around and sat around and...nothing. I got pretty irritated. I thought maybe it was backed up with the holidays, and checked early in the morning, but nada. So, back to the phone. It turned out there was a late flight and it was stuck in Anchorage sooo long story short, I got it like 4 days late. Uh, thanks Alaska.
By the time it came in there was a bit of concern (mostly from me) that it had frozen in transit. There was supposed to be some sort of card or something that told me if it got out of the necessary temperature range, but they weren't there. Real cool. Honestly there was a point in all of this where I just had to kind of laugh, it was a bit of a comedy of errors.

So, the injection pen got to me, that was the big part. Thankfully Soldier was there...I wasn't at all worried about having a reaction, but I wanted to have him there for moral support. The more time I have to think (worry) about something, the more freaked out I get.
I got NA on the phone and got ready to stab myself. Really it might have been better if I had just done it rather than talking through it with her, but it's required for her job...but I'm getting ahead of myself.
I'll cut to the chase. If you've ever seen an EPI pen, that's pretty much what mine looks like. It's spring loaded and just sends the meds right in there. I underestimated it though; the needle is so small that I really didn't expect to feel it a whole lot. Oh also with my swollen and sore hands it was kind of hard to even push the button. That doesn't really add much to it, just that it took longer to even get the injection in since my hands hurt so much.

I finally hit the button. It hurt. It startled me. I pulled the pen away. The needle came out. The meds started spraying on me. Soldier and I gave each other a deer-in-the-headlights look. I closed the pen back over the injection site so some of it might soak in. (I don't know if it works that way at all, but it seemed like a fair idea at the time). We laughed about it afterward.

I do think I got at least a teensy bit of the medicine, and now I know what to expect. On the bad side, I have a small ugly bruise on my tum. I'm guessing I'll get one every time, so that's fun.

I think I'm almost back to being able to wear my rings. As silly as it is, that's been one of the biggest issues for me. I know you're all interested, so I'll be sure to keep you in the loop if anything changes!

Till then, I hope you all have a happy New Year and that your 2018 is magical!

196 Books: Benin

Why Monkeys Live in Trees by Raouf Mama

Benin is another smaller country, this time in Africa:

Summmmarrrry:

This is a book for both young and old lovers of folklore. Why Monkeys Live in Trees and Other Stories from Benin is a rich tapestry of oral tales that come from a wide range of Beninese ethnic groups. They include trickster tales and sacred tales involving the greatest and meanest of mankind, as well as nature and the world of spirits. These ageless tales remind us of the power of love, the perils of greed and pride, and the redemptive virtues of courage, humility, and kindness.

The Western African Republic of Benin (formerly Dahomey) is gifted with a great folktale tradition, one of the richest in the world. As pieces of oral literature and cultural history, these tales shed light on some of the values and beliefs as well as the customs and traditions of the people of Benin.

So one thing I forgot to mention in my last book post (I think) is that, coming across smaller countries, I don't have nearly as much choice in books. So I might have to go with one that wasn't written by a native of that country, or something that doesn't really sound super interesting. That's how I came across the short stories for the last two books. 

The difference? I loved these! They were more like fables or parables than just short stories. Wait, are fables and parables interchangeable? Hmm...not exactly, but apparently this book had both of them. 
Anyway they were super cute and, even though you don't get to "know" the characters so much, they had lessons at the end so it made it worth it for me. And the drawings were absolutely beautiful. 

Um...I know my "reviews" for these ones are really short, but how do you really go over a bunch of short stories? I don't know, so I won't try. On to the next!

Stabby Stab Stab

Forced masochism

I returned from Seattle today. It was...tiring. Mom met me out there because I'm spoiled, but it was so helpful for me to have her there. 

She got to the airport a few minutes before I did, so she was waiting for me at baggage claim. We checked into our hotel and set off to eat. We settled on a place that served Middle Eastern street food and yummmm. After eating we wandered around, found some shops to revisit in the morning, and grabbed a bottle of wine to sit and chat and watch terrible cable with. Honestly, why does cable still exist? It's terrible, most of the shows are terrible, and (worst of all) half of the "show" is commercials. It's bullshit. 

Next morning we went to a place called Biscuit Bitch that only served different types of biscuits and gravy. Not my favorite type of breakfast, but it was decent and the place was fun. Next we did some shopping and I woke up in a Sephora (so many bonus points to you if you get that reference). 

Then it was off to the hospital. Checked in and waited and worried. Saw the CMA who was really nice and took care of the basics. Waited some more. In came the doctor. He was thorough and very nice from the get-go, starting off with asking me to explain what happened when I got sick (which somehow hadn't made it with my other records). Next he checked my knees, ankles, feet, elbows, wrists, fingers (all of which have been giving me trouble in the past few weeks); he checked for psoriasis and issues in my back and other joints. 
He assured me that, though I am a very sick person, he knew how to treat me. That was good news. But there was a catch: it means giving myself an injection every two weeks for the rest of my life. 
It just occurred to me that I really shouldn't feel bad for myself, lots of people have to do it. But I hate it. I hate having this thing that takes over my body and is ruining it. Anyway. 

He told me how he wanted to treat the problem, and then everything went super fast. My head is still spinning. He explained some things to me, then the CMA came back in. Set up another appointment for me and worked on some insurance stuff. Next was the nurse. She went over how to do the injection and some of the medication stuff. She kept apologizing because all of that would normally have been in a second appointment but they were kind of tied with me not being local. Then it was off for blood work. 

The whole thing took 2 hours, which is the longest I've had with one appointment before. In a way it was good, because they made me feel like they were really taking care of me, and they stressed multiple times that I'm not alone; there's a team behind me that's available at any time for any question. It was very reassuring and a bit validating for him to say that I was am quite sick (and that the doctor here didn't give me enough steroids). But it was a whoooole lot at once. I'm really still trying to debrief myself and remember everything I need to do. I actually woke up in the middle of the night last night panicking about some phone call I need to make or some step in the process that I need to take care of.  

After the appointment we wandered a bit (have I mentioned how much I love walking around cities?!) and did some more shopping. Dinner at a brewery and another bottle of wine to go back for talking and bad cable. 

And this morning we left. I was (still am) exhausted, mentally drained, sleep deprived, and feeling sorry for myself. But when I landed I had to stop to pick up my steroids and get a flu shot. It did perk me up a bit to get home and see my Soldier. But it's still a lot. The worst part? Because of my fingers swelling I can't wear my engagement and wedding rings. Sentimental and silly, possibly, but I guess I'm in a good position if that's the worst of it. 

196 Books: Belize

On Heroes, Lizards, and Passion by Zoila Ellis

That's Belize. I'm going to be honest, I thought it was an island. It is not. 

And summary! Go!
Seven short stories vividly depicting different facets of Belize s reality. From the country s rural areas to New York City, we accompany Belizean women and men as they go through the joys and hardships of life. Zoila Ellis demonstrates a refined ability to perceive and reproduce situations and characters, heightening the emotional impact of everyday events and rendering them into fine literature. 

I should have finished this book in like 4 days. Buuut I didn't, and you shall get no apologies or explanations! Bahahahaha! 

So I honestly don't have much to say about this one. I'm a much bigger fan of actual novels than short stories. You can't really go into much detail on them, and I like to feel connected to a story. There's just not enough to a short story for it to get under your skin. 

But, not being a huge fan of short stories, I did enjoy these...they were cute. But I again had a hard time with the Creole, Caribbean dialect. 

So, um, that's about it. Cute stories, short, that's...um...it. 

K byyyye

Hacks and Networks

The health fight

I guess this is the first normal post I've written in a while. It's not really a good one...I'm having another pity party. For most of the time while we've been up here, my body has been cooperating. In June, one of the knees started acting up a little bit, but nothing too bad that I couldn't ignore it. Cause you know how much I'd rather ignore things than go to the doctor, especially up here. (Background: I had been seeing a Nurse Practitioner who didn't completely instill me with confidence. She moved away and they switched me to an MD but I hadn't seen/met her till last week). 
A few weeks ago, the other knee, not to be outdone, started ballooning. So, off I went to the doctor. It...wasn't...great. She just seemed unsure, and kept referring to me if labs/diagnostics/treatments were okay with me and something I wanted to do. To which, multiple times, I told her that she knows more than me in the situation and if she thought I needed it I would do it. So she ordered blood work, Xrays, some steroids, and a referral to a rheumatologist. 

Off I went to get my blood drawn. I also had to do a pee test, and the tech (yeah, I know she was a phlebotomist, but tech is easier) asked if I had already done it. I said no, and she said we'd do it on the way out. Cool, done that before, no big deal. She stabbed me and took my blood...all good. I was washing my hands after the other test and thought my arm felt weird so I pulled up my sweatshirt and...BLOOD. BLOOD EVERYWHERE. Well, everywhere on the gauze. So I went back in and was like "Hey, no big deal, just bleeding profusely teehee." And she was like "Oh no it's cool, this is pretty common!" UMM NO, ma'am, thank you, this has literally NEVER happened to me. And that should not be common! WTF, Juneau! 

So, okay. Not feeling great about the new doctor, but I'm gonna trust her and her knowledge. She ordered 10mg of steroids for 5 days, which I thought seemed like not much, but you know...trust. I started it and they seemed to help marginally and then nothing. 
Next up: referral. It's a bit complicated because Southeast Alaska doesn't have any rheumatologists. and if you remember from previous posts, Juneau might as well be an island. So the options are Anchorage or Seattle, which both require a flight out (spoiler: Seattle). I had Soldier call the insurance company to see what they would cover and of course they'll cover in-network doctors, but not travel.  WTF DO I HAVE INSURANCE FOR. So sure, you pay in on the premise that we'll help with medical expenses, and you're in a position where you have no choice but to buy a plane ticket to get to a specialist, but FUCK YOU. CAUSE WE CAN. Soldier and I are lucky, because we're in a position where we can pay for this and flights are cheap right now. What if we couldn't afford it? What would I do? I'm pretty sure the people who think our health system is great just don't ever need it.

And last step: Xrays. Oops, I mean Xray. One single picture. That's fine, it's fine. Kind of funny even. It was a standing up picture and the tech thought my knee was an inch below my hip, but it's cool, no worries. 
They processed the pic very quickly and called today to let me know that oh there's just some arthritic damage and it's fine, we're not going to worry about it. Oh thanks guys, that's super cool! I'm just not going to worry about the ongoing and lasting damage going on in my (probably) most used joints! During the call, I let them know that the steroids didn't work. I expected them to give me another option, another round, have me come in for more tests, something. NOPE. The doctor decided that more steroids weren't going to work and I should just talk to a rheumatologist about changing my regular meds. OH MY GOSH, THANK YOU SO MUCH INTELLIGENT DOCTOR. 

Things may have changed, but when I started on these meds they told me that the next step in treatment would be chemo. C.H.E.M.O. So if you, as a medical professional, are telling me that my next option is legit poison, you better have exhausted every other fucking alternative there is. Every...single...one. Not just "Oooh...I dunno! Not my problem, good luck! Hehehe"  

I think this is harder because of the treatment I had back home. I loved my doctors. I completely trusted them and honestly believed they had my best interest in mind and knew what they were doing. For the 2 years we've been here I've felt like I've been scraping at the bottom of the barrel trying to get these people to have the smallest bit of concern and expertise in my health and well-being. 

As always, guess what's the absolute worst thing for disease? Stress. But what's a girl to do? I can't really not be stressed by this. And the best part is that I get to wait 3 weeks to see someone who is actually (fingers crossed) competent. But then what? I certainly don't know. 

Oof. I dug myself into a sad, sleepy, vodka fueled sadness. I can't even come up with a witty ending. So...I'm sorry. I guess the good news might be more snarky/bitchy/whiny posts. Yay for you! 

196 Books: Belgium

Searching for Augusta by Martin King

And heeere's Belgium:

Lots of fun neighbors. Aaand summary:
Untold millions who saw and read Band of Brothers can finally know the whole story of what happened to American soldiers and civilians in Bastogne during that arduous Winter of 1944/45. In the television version of Band of Brothers, a passing reference is made to an African nurse assisting in an aid station in Bastogne. When military historian Martin King watched the episode, he had to know who that woman was; thus began a multi-year odyssey that revealed the horror of a town under siege as well as an improbable love story between a white Army medic, Jack Prior, and his black nurse, Augusta Chiwy, as they saved countless lives while under constant bombardment. Based on the recent discovery of Prior's diary as well as an exhaustive and occasionally futile search for Augusta herself, King was at last able to bring belated recognition of Augusta's incredible story by both the U.S. Army and Belgian government shortly before she died. This is not only a little-known story of the Battle of the Bulge, but also the author's own relentless mission to locate Augusta and bestow upon her the honors she so richly deserved.

I'll admit that I erred a bit here: I got so excited when I was reading the summary that I didn't look into the author. He's British, but I'm calling it okay because he lives in Belgium and is a military historian so I think he probably did his homework. 
I really love historical fiction. My only wish is that they made it more obvious which parts or conversations they made up so you can know for sure. 

It was another war book, so there were a lot of things that made my stomach turn. The nazis (no, Google, I won't give them the respect of capitalization) were big old bastards. It definitely blew my mind the level of racism that was still rampant at that time. Some of these soldiers were literally dying but they somehow thought being worked on by a black nurse was worse. Fucking ridiculous. There was a super amazing line about that: "In his opinion the most frightening aspect of any society is the one that regards others, those who are different, as being 'less than human.'" A-fricken-men. I think that's pretty relevant to today's society (well, I guess society always). 

And here's a *spoiler* that's also a complaint: when I read a love story I want the main characters to get together! It was a bummer that they didn't. Although, when the author did meet Augusta a few years ago and she told him how Jack was in love with her, she seemed like she might be a smidge senile. So maybe it wasn't a love story at all. And less love story than war story. Which I guess makes sense for what was going on. It's definitely not for the squeamish though. 

So, that's it for Belgium. Another war story, another history. Sorry not sorry, etc. 
Ok, I know I'm not doing well at these "review" things. I really don't know what to write for starters. Second, I have a huuuuge headache that's making me very cranky, and my knees have been naughty lately. I went to the doctor about them today which always throws me into a big pity party. Alas, woe is me and all that. Maybe by the next review I'll be more chipper. 

196 Books: Belarus

Paranoia by Victor Martinovich

Belarus is located here:

It used to be part of the Soviet Union and is considered by many to be a dictatorship. So that's fun. 

Book summary:
Banned in Belarus two days after it was published, Paranoia is a thriller, a love story, and a harrowing journey into one of the world’s last closed societies. The book never mentions Belarus or its capital, Minsk, but the setting is unmistakable. In his tragicomic prefatory remarks, author Victor Martinovich all but acknowledges the inevitable comparison: "There is no more need to invent ‘1984’: just look around." The state has so penetrated all areas of life—scrutinizing even errant scraps of paper and utterances between lovers—that he must "enjoin readers not to read this book." But for those who do, Paranoia is a timeless story of doomed romance between a young man, Anatoly, and a mysterious young woman he notices at a café. Their whirlwind romance draws Anatoly into a world of privilege and danger, as he discovers that the third party in their love triangle is the omnipotent and omniscient head of state security. A heart-pounding tale of love, murder, and betrayal, Paranoia will appeal to fans of political thrillers. It also offers insight into the frightful workings of a contemporary totalitarian state. Historian Timothy Snyder’s helpful foreword makes explicit, for interested readers, the parallels between politics in Belarus and the rest of the Eastern European region.

It's also worth noting the "description" on the back of the book:
"All the events related herein are fictional: the protagonists have never existed in any reality other than that of the present text. Any unsanctioned comparisons with historical figures or persons alive today may be qualified as a criminal offense punishable under international and national law. To avoid unintentionally committing acts prosecutable (Google says that's not a word) under the Penal Code, the author--fully aware that, essentially, he should never have written it in the first place--enjoins the reader not to read this book."

Where to start with this one? When looking for Belarus, I was stuck between two books: this one and one that was more factual. I kept getting really excited about the description for this one though, so I went with it. Let me start by confessing that I didn't read the foreward (Google strikes again with that one. Either spell check is going crazy or I am). I rarely read them, and I'm kind of glad I didn't in this case. Books like this one (and 1984) are compelling, but they freak me out to think of that as reality. Like panic attack freak out. Part of me wants to know how close this book is to real life Belarus, and part of me is a scared little girl that wants to shut away all the bad stuff. 

So I liked this book just as much as I thought I would. There should have been a disclaimer though...the first line should have been "This book does not have a happy ending." I mean at a certain point you know that it won't, but the love story in there makes you hopeful. There were a few points that really caught me, that I want to point out:

There's a passage about the paranoia: "Sometimes things disappear at home, too. Not very important things but like...gadgets. A postcard from somebody. Or a shoehorn. It's a weird kind of awareness. An awareness of some sort of presence." It reminded me of a conversation I had with Diplomat Sister once about serving the US in communist countries. She said she knew people that did it and they would come home and the police or whomever would have been in their home. They would do things like use the toilet and not flush it...or I assume move/take small things like that. They wanted you to know that they'd been there, that they had access to you and your home and your things. It's such an eerie thought. But I guess that's the authoritarian government. 

Next is a silly thing: pelmeni meat dumplings! He mentions them a couple of times and it kept making me smile because there's a pelmeni place in little Juneau! I had them for the first time a few weeks ago. Everybody said they're amazing drunk food; they weren't lying. 

The last thing I want to point out about this book is that Martinovich had such rich descriptions. Here's one that I absolutely loved: "Then Bach diminished and faded like the last Gothic cross, like a glint of light in a stained-glass window, and Chopin began. He was like his name. His music bubbled with the foam of champagne spilling from a bottle, surging and flowing from side to side across the stage." I could actually picture the Chopin music; it was such a beautiful description. I could feel it. Other descriptions and thoughts were almost dizzy; almost like the paranoia was setting in for me. 

Anyone who likes political thrillers should read this. It's amazing and he's such a vivid, deep writer. Just don't think to much about the reality of it.