I Quit

My labs came back. Some things have improved, which is great, but the Lyme is raging. 

I talked with my doctor. We listed a dozen or more therapies that we have tried the past couple years. "And none of them have made you feel better, except in your guts," she conceded. We both sat back in our chairs and stared at each other, feeling bewildered. 

It seems I am an overachiever in freakin everything I do. 

Guys. This is tens of thousands of dollars we've spent, including loans. And still I lie in bed, a noncontributor to my nuclear family. 

The doctor and I came up with a plan. It felt really right until I was handed the bottom line by the billing girl. There is no way in heck we can afford this treatment, which may or may not lead to wellness. Since then, my husband and I have looked hard at options, even considering selling stuff and moving. 

If we had the kind of money needed to pursue the therapies my doctor and I discussed, I would rather use it to send my husband and kids to Disneyland anyhow.

I thought of other modalities and felt overwhelmed about mobilizing myself toward new things that may or may not work. 

I'm tired of a lot of things. Of the way we live without a functional wife and mother. I fake it less and less all the time. 

If I'm going to suffer, I might as well do it  for free. So I'm quitting. Maybe it's a sabbatical, maybe it's for good. I hereby quit worrying about the options, coordinating my care, getting myself places, and spending the money. 

...at least for today. 

I quit. I'm done trying. I hate this game. 

On Friendship

For many moons, I have tried to maintain friendships and my lifestyle all at once. The natural divergences of life over time (changing interests, location, family dynamics, etc.) have made it so difficult. But I have been desperate for companionship and have spent a thousand hours wondering how to be a friend.

I am not as responsive as I wish I could be. I have passively let friendships slip because I couldn't grip well enough. My mourning has been profound.

The important thing I've had to realize is that any relationship we have here also exists in the spiritual realm. I think of someone I love who was an excellent father until illness took hold of him and changed him in so many ways that he seemed completely altered and unable to function anymore. Yet the bonds he formed with his little children were sacred and still exist. Even if they were to grow bitter, and he resentful, those deep connections would still exist. I firmly believe this. Our relationships are defined in such temporary, earthly ways here...but if we zoom out to look at eternity, the best parts of our relationships still live and breathe.

If you are my friend or family member (ahem, ALL of you), and I have been inattentive, I. Am. Sorry. Will you please forgive me?

What we have once held between us still exists and is precious, even if I can't act on it right now. I still love you, even if I have a funny (or absent) way of showing it.

Don't be afraid to reach out. I'm a spaz, but I love getting your voicemails and love notes. I'll try to be better.

Waiting for Labs

I have drafted about a dozen blog posts that have gone unpublished. I think it's because I've been having a midlife crisis and have felt protective of some of my budding opinions.

Yes. A midlife crisis at my age. I reckon you're allowed more than one.

Today I want to give an update about the lab tests results I'm waiting for. But first, some background...

On Christmas Eve 2014, I had endured three months of IV therapy through a PICC line in my upper left arm. My skin is so fair and sensitive on the inside of my arms that it hated adhesives and skin cleansers and not being able to breathe. By the middle of therapy, I had open, weeping sores riddling my upper, inner arm. It stung around the clock. I went to the hospital every other day to get rewrapped with a roll of sterile gauze--certainly an infection hazard because it wasn't airtight, but simply the only way to keep the PICC line in to finish my treatment. 

The minute I could get the line out that Christmas Eve, I did. I was so sick. My doctor had me rest and recover from the antibiotics and other therapies for three months. We retested my numbers in March, and my Lyme markers had more than doubled. I still felt awful. We hadn't hit it hard enough. I had my second PICC line placed right away to start a more rigorous treatment, but it went in the upper right arm. 

This time, I had a homecare pharmacy deliver my infusions and supplies so I could take care of myself at home instead of 45 minutes away. It worked wonderfully (except when I had a horrible allergic reaction to one of the new drugs--but I'm a nurse, so I handled it). I infused until summer arrived. The PICC line skin issue emerged slightly later than the first time around because we prophylactically tried a wound dressing called a Mepilex instead, but I was wrapped in gauze again before the second month ended. My poor skin. We pulled that PICC out with glee when the three months of four-days-a-week infusions were up. 

Believe it or not, we never rechecked my Lyme levels. It's a $340 test, and I thought if it was hardy enough to have survived those drugs, maybe it deserved to kill me. It couldn't be that tough, not after what I'd poured into my body. I wanted to deny its existence and move on with my life. I wanted to have my body back, be able to drive again, and to not need a wheelchair for outings. It would be all up from there, baby.  

My doctor got me started on the LDI injections and let my system recover from the second three months of IV antibiotics, and boy did I need it. I went to a GI doctor once, and she had me get a bunch of liver tests (including imaging) because it was so shot. I started to feel kind of awesome in August though; I did some house cleaning and some driving and some good mothering. It lasted about three weeks before I began to slump again. 

Thinking it may be hormonal, I hoped I would have a repeat of the good feelings and increased vitality in September. But it didn't come. Not in October or November either. I even tried to fake it. I told people I thought I was getting better, when they asked, because for awhile I believed it. 

This year (2016), it's been bugging me that I am so horrifically fatigued all of the time and just feeling worse, with new crazy symptoms like tremors and migraines and psych issues. The critters may be munching on my brain after all. 

I literally spend all day in bed except for maybe two times per month (examples: I went on a field trip with my daughter's class; we have my sister's wedding coming up; family tradition days or when people in town I drink caffeine and go). I attend church every week. I get out a few evenings a month for this and that. And other than that, I'm really at home. In bed. Trying not to bemoan my situation. 

I have had LDI injections to treat viruses as well as Lyme. The idea is that sometimes a virus (like Epstein-Barr and cytomegalovirus) can weaken your immune system and create a situation for latent bacteria, like Lyme, take over. That is one theory of what may have happened to me. My doctor has treated for viruses as she has hypothesized that my Lyme has diminished with the continued LDI injections (of which I have undergone twenty rounds!). I've agreed with her. The viruses she suspects are fatigue-causing beasts. 

Lately I have had this unsettled feeling that I needed to get blood work done. So last week, I requested it: a follow up on my Lyme numbers, a virus panel, and anything else my doctor felt necessary. I filled several tubes with blood and went home nervous as heck. 

That's how I feel every time I let my mind wander. I feel nervous. 

Possible outcomes of my lab results:

--Everything is negative, and we are left befuddled. More testing. $

--Something unimportant is positive and serves as a red herring we get to chase around. $$

--My Lyme is back with a vengeance, and I get more IV therapy in whatever form, but longer and more aggressive than last time. $$$

"See kids? This is why we can't have nice things."

If the latter is the case, I'm getting a port. A port is a little button that is implanted under the skin of your chest with an IV line that dumps into your superior vena cava, like a PICC line. You access it with an actual needle connected to tubing. The needle stays in your skin for a week at a time, but I'd wager I'll only need it up to five days a week. Swimming and showering and letting my skin breathe will be wonderful for me. I should have gotten a port the first time around, but I didn't know much about the circus I was joining back then. 

My skin can't withstand dressings. My peripheral veins can't stand the scarring. And I can't stand getting myself to an IV center when I feel like death. I can access and deaccess a port from home. It is the path of least resistance, and all signs point to DUH. 

No matter what the labs show, I am already horrified at my prospects. I don't want to be scared. But I don't have the money or energy to pour into chasing illnesses forever and ever. But also, I just want to KNOW. It's as bad as when I waited to see if I got into BYU's nursing program. Bring it!!

I feel exigence to treat myself. It's so real. I can't deny this urgency. 

Another test I'll need soon is a follow up MRI on the cyst in my brain. We just need to make sure it isn't changing. 

There is a lot more I could write about, but if I stop now, I'll be more likely to post. 

It's going to be a weird summer. I hope my kids don't get tired of sidewalk chalk and weeding the garden, because that's going to be their summer thrill this year. They are such good little people. Mom ruins everything!

We Are Cyborgs

I have written at least a half dozen unpublished blog posts since I last blogged. I am so disenchanted with talking in first person, sharing my guts, and keeping up this one-sided, abstract relationship that is me vs the Internet.

Originally, I had thoughts to share. I hoped to put minds at ease as to how I was doing, inspire and help people to smile, and share myself in a way that didn't involve stacking chairs or visiting the needy (can't fill others' buckets if yours is empty, donchaknow).

It's eerie to put myself into the universe without mutual human interaction coming back. It is weird. It is unfulfilling. The Internet is impersonal. These electronic interactions are unprecedented in the history of planet Earth, and I am unsatisfied with them.

If chronic illness wasn't so morbidly isolating to me, I would have done away with these interactions years ago and just gone out to be social with actual humans. But this is how I have often had to see the world from my sickbed--through the Internet. It's also how I've let people know I'm still around.

I am not a good friend because I can't be a good friend. I don't have emotional capacity to help or physical capacity to reciprocate. It's sad. I think about this every single day. So the Internet gives the allusion of "friends," but often they are made of zeroes and ones.

I forget about the the *CHRONIC* in my chronic illnesses sometimes. When I remember, I am disappointed that I can't be normal human who exists to people outside of the Internet.

It would be grand to not validate my life's experience by electronically letting other humans know I'm living. It would be grand to be actually living, instead.

I'm this close to breaking up with the Internet, and to live that reserved, introverted life that my grandmothers lived.

Because there aren't many humans left; we are cyborgs with touchscreens for hands, living in an abstract, cyber world.

Inches

When I lived in Texas, there was this cool kid who proudly went by Inches on account of his size. He was smart: he knew he wanted to be around the ladies from an early age, so he decided to take up the flute. He and I were in marching band together, and he was adored by all of us. We loved Inches. 

That story has nothing to do with this post. 

Really, what I wanted to talk about is growth. We mark a door jamb with our children's heights on their birthdays. Aside from running out of lap and having to rotate their clothes to bigger sizes, their growth is undetectable to me. Yet, when we measure them, they have sprouted inches every year! It's amazing. 

A few weeks ago, my doctor did an inventory with me. She zoomed way out, and we talked about my progress. I thought I hadn't made any since I am still so devastatingly fatigued most of the time. But as we reviewed my supplements, activity level, mood, diet, labs, and overall outlook, I was positively astonished. I have (figuratively) grown inches this year! I was so very, very ill a year ago, and I am clearly healthier than I used to be!

I feel very grateful for this revelation. I am happy that I can care for my children and put dinner on the table sometimes. I am amazed that my organs are doing so much better and that I am tolerating a greater variety of foods. I am thrilled that we do things as a family sometimes, and that I can date my husband. It's fantastic that I don't have to give my only functional hours every week to church, because I often have good hours daily. I have the concentration to read and the endurance to do projects once in awhile. Guys! Do you feel the changes like I do? What a swell deal.  

Someone kindly suggested that I have progressed and am on my way to getting back to my old self, but I stopped holding my breath ages ago. Maybe I don't want to be my old self. I like who I am becoming because of my difficulties. 

Whatever growth I am experiencing, the changes are imperceptible day to day. And that's kind of exciting, am I right? To not know who I'll be in a year? I think it's simply riveting. 

Fire Alarm

Today we had a dress rehearsal for my daughter's upcoming dance concert. This is her seventh event like this; it is old hat for our entire family. Even my son, who tags along for dress rehearsal and performances, knows exactly what to expect. 

The routine may be old hat, but my daughter's group got their own tent backstage for costume changes. All this time, she has had to change with her groups in adjacent rooms, but now she is backstage with all the big girls. Everyone was excited. 

I made sure my son had his school backpack full of books so he would be entertained during dress rehearsal. Because we were in a new place, he had a hard time figuring out where to settle down and read, especially since the tent was rather small for all the moms and dancers to be in at once...and a stray little boy. 

The dancers lined up in front of the tent to go onstage, and we were even more displaced. My son was pushed all the way to the door on the cinder block wall. 

I looked towards my daughter, who was warming up in line, and glanced down just as I saw little five-year-old fingers perfectly follow the instructions on the fire alarm pull. Push in, pull down. 

Too late. The alarm blared.

He didn't realize it was him. "Buddy, that was you!" I said. "I didn't know! I didn't know," he cried. I didn't believe him at first. And then I remembered that my little boy doesn't lie. 

We had to evacuate. I told a stage person that my son tripped he alarm. Dancers shivered in the January outdoors. My son and I went around the corner and sat on a curb, away from the anxious crowd. I felt sick, but my son was simply devastated and bawling. 

"Did you know that was a fire alarm?" 

"No! I didn't know!"

"Remember when we were in church once, and the same thing happened when a kid pulled the alarm, and everyone had to go outside?"

"Yeah."

"That's what you just did. It called the firemen. They have to make sure everything is safe before anyone can go back in."

He broke down with a new wave of understanding. Though interested in the real firemen who came to check out the building, he wasn't happy. 

I wasn't either, but I didn't say so. 

But then I heard a group of moms talking just around the corner. 

"Is this for real?"

"I hope not!"

"This is ridiculous. They're going to get so far behind."

"I hear a little boy pulled the alarm."

"What was he thinking? I hope this blew his ears out!"

I was shocked. I was mad. I wished I could see who said that so I could stomp on her foot. 

We apologized to the owner via email. I offered to pay for the firemen or whatever I could do to fix it. But I couldn't look at the other moms, not with my boy in tow. 

A girl of about nine or ten came up to us, a conspicuous mom-boy couple on the curb. "Do you know who pulled the fire alarm?" she jeered between an awkward mix of permanent and baby teeth. 

"What?" I blinked. 

"Do you know who it was?" she repeated, eying my boy. 

I stared meaningfully at her with widened eyes. "Do you need to know?" I asked. 

This time she blinked. "No," she said, and walked away. I didn't see her again. 

Amidst the jabber and jumping jacks, someone finally made an announcement that I couldn't hear. There was general murmuring. A man near us said, "Ha! They're going to want to have that kid's fingerprints after this." Again, if I'd know who it was, he might have gotten an elbow to the solar plexus. 

It was either a good thing or a bad thing that I kept my eyes down. I don't think my son heard anything.

We fetched my son's backpack and went to the car to wait. My daughter tried to suppress tears so her makeup wouldn't run since I am always there to help her set up a costume change routine. 

She went on stage only nine minutes late, and miraculously they made up the entire delay by the time she was done. She did well setting up her own routine. Thank goodness this is all old hat. 

Meanwhile, my son and I snuggled in the front seat of the car. We texted my husband for awhile. My favorite thing my son texted was the title of a children's book we own: "It's okay to make mistakes."

Then I praise his little broken heart into confidence. 

"You know what I think is cool, buddy? You followed the directions on that fire alarm EXACTLY. Now if there is ever a real fire in a building, you will have already practiced! You'll start seeing them everywhere you go--at church, school, stores--every building except houses. And I noticed they put it right on your eye level, and you could read every single big word on it. The only words you didn't see were the little ones at the top: 'in case or fire.' That's pretty awesome that you can read words so well. If there's ever a fire, I hope you're with me so you can pull the fire alarm, because you're one of the only people I know who has ever done it before!" I went on and on. The tears dried up, leaving salty stains beneath his eyes. The pink blotches that characterize his sad face faded away. He was still shaken up, but I think he felt a little better. 

The person I appreciated the most was this mom with purple hair who stopped me as we evacuated the building. She must have stolen a glance when my son reacted to the initial blare. "Hey, just so you know," she said with a toss of purple over her shoulder, "my son did the same thing a few years ago." Then leaning towards my son, she said, "It makes for a great story later!"

It wasn't reassuring at the time. But I thought of how kind her relatable confession had been as my son and I walked toward our curbside seclusion. 

I vow that if the fire alarm is ever accidentally pulled somewhere and we are evacuated, I will dull the blades of sharp words before they can leave me. I will be the woman who stomps on insensitive jeers. I will elbow petty jokes. I will confess my own experience being the mortified mom of the bawling boy. I will look the mom in the eye and smile. 

And I will never be ashamed with my son. I will keep my eyes up and stay in plain sight, even if my outwardness belies how sick I feel. I'll deal out metaphorical stomps and elbows if I have to, even widening my eyes at rude glances, because my boy doesn't like trouble. He wants to be good and avoid reprimand. He didn't know. 

And I believe him. 

Book Reviews 2016: 1-5

This year, I have a goal to read 52 books (one per week). I am ahead of schedule, but I'm sure it will make up for a dry spell later on. The following are my brief reviews of the first five books I have read this year. 

1) Me Before You 

By Jojo Moyes

This was my first time reading a book by Jojo Moyes. Her wit is so fun. I wanted to put some beautifully-crafted sentences in my pocket for safekeeping. The first-person protagonist was hilarious and sarcastic. This story took place in an English village, and I am OBSESSED with England, so that worked well for me. 

This book deals with a high-power (single) financial prodigy in his mid-thirties who tries to adjust to life with quadriplegia after being struck by a vehicle in the street. A disenchanted underachiever of a young woman takes a job of being his companion during the daytime and, at the request of his mother, keeping the man's spirits up after his accident. Several moral questions follow, such as whether village life is good enough for a young person with massive potential; whether the safety of an unfulfilling, but predictable, relationship is more valuable than confident celibacy; and (SPOILER) the ethics of assisted suicide. Therein lies the struggle. 

Struggle isn't bad; it helped me evaluate my opinion. I feel more confident knowing my views, having read this book. 

I gave this book 3.5 stars, knocking off an entire star for the ten-ish f-bombs I scratched out of my copy of the book, and another half star just because. It's subjective, naturally. There was a lot of swearing and taking of the Lord's name in vain, which made me squirm (leave my Savior alone, please!). 

I'll wait for a glowing review of one of Moyes' books from a trusted friend before reading more of her works, unless I am in the mood for some controversial soul searching and have a scratching pen at the ready. Overall, I am glad I read this book. 

2) The Gifts of Imperfection: Let Go of Who You Think You're Supposed to Be and Embrace Who You Are 

By Brené Brown

This is my first Brené Brown book. Is it self help? Is it spiritual? I don't know. But I highlighted a lot of great one-liners in it. 

I learned a lot from this book. It's a playbook for lay psychology nerds like me, who like to know how we build our stories and process emotions and stuff. I'm making it sound technical, but it's not. There are plenty of anecdotes from the author, admissions of her own folly, and conversations she has had with her own therapist. In this way, I felt like the author, a researcher, did not always seem authoritative on her own subject. But I appreciate her candor in expressing her continuing work toward loving herself as she was made. 

There are ten "guideposts" for embracing one's imperfection. I found these interesting and wanted to study them more. Overall, I feel like the book gave me an extra nudge to heed the inner wisdom I was already sensing, but was afraid to act upon. 

Read other reviews to get a sense for this book because I am doing a rather poor job. But I decided that if I ever take a trip somewhere, this is the kind of book to take with me on the plane. I think I could make it a serious study for a few weeks, no problem. 

I gave this book four stars because I wanted to love it, but things like foul language and select juvenile diction and lack of authority kept it from wowing me. I would still recommend it. 

3) Out of My Mind by Sharon M. Draper

This novel is about a ten-year-old girl whose body prevents her from expressing her inner genius as she is unable to talk or walk. (It is later revealed that she has cerebral palsy, which is what I was sensing.) This girl expresses her frustration at being labeled and being unable to speak for herself. Her intelligence is later discovered, and we get to see what she is able to accomplish with her able-bodied peers. The adjustment is fraught with frustrating difficulties, which I feel is reflective of disabilities in general.  

I really appreciated this book as a look into a perfectly functioning brain within a handicapped body. It made me happy that I have worked with people using the same tone of voice, no matter how old or how intelligent. The girl in this book wanted to be included. Is that so hard to do with people we meet?

The author, a mother of a handicapped child, recommends that when we see someone who isn't, say, usual, that we should say hi and introduce ourselves instead of pretending not to see. This book drilled that thought into me. I hope to look at everyone with more love from now on. 

I gave this book four stars. I really liked it. 

4) The Screwtape Letters by C.S. Lewis

This book is legend, right? This was my first read-through. It was fine.

This book is a collection of letters by Screwtape, a master demon, written to his nephew Wormwood, a newer demon engaged in trying to persuade a certain male, mortal "patient" to get on the road to hell through numerous, oldie-but-goodie-type demon tactics. Screwtape sometimes praises, sometimes chastises, but always closely appraises the patient's status and tells Wormwood how to use Christian strengths to turn the patient from "the Enemy" (Christ) and toward "Our Father Below" (Satan). 

It really was a fascinating two-hour read. If it had been my own copy of the book, it would have been dog-eared by the time I finished. You see easily that Satan, though tricky, is not very interesting with his tactics, though they are successful if one isn't careful. 

I was invested in the well-being of the patient, as war had just broken out after he become a Christian. Would it be too much? Was it all "a phase?" Would Wormwood succeed? I couldn't wait to find out. 

Truly, I had a hard time listening to a demon talk for nearly 200 pages. Maybe it was a negative energy I assumed. Maybe it was a sudden vulnerability I felt. Maybe I was hormonal and tense. But I was relieved when I finished. I gave this book four stars. If I hadn't felt that shift in energy so acutely, perhaps it would have gotten a perfect score and gone in my private collection. 

5) The Dollmage by Martine Leavitt

I only discovered Martine Leavitt's works last fall, and I am forever altered. Every book I have ever read from her just rocks my world, and The Dollmage is no different. It got a perfect five stars and is going into my exclusive private collection of favorites. 

The Dollmage is the village's wise woman and storymaker. She creates people and things before they happen, using carefully selected materials and adding them carefully to her secret miniature model of the village. As she has now aged and childless and her powers wane, it is time to find a successor. On the day appointed for the successor to be born, two very different girls arrive, both with Dollmage power. But the village can only have one Dollmage. Who will it be? Through years of training, the question remains. 

Told by the aged Dollmage as a legal testimony to her people before a village member's execution, this story is told by a deeply flawed character in fascinating prose. I was sitting around the fire with everyone else. 

Leavitt is a gifted wordsmith, and her nuggets of timeless wisdom are poetry. She looks where others will not look and damning insecurities become merciful gifts in her carefully-crafted offering. She somehow turns weaknesses into strengths within her characters. It's really beautiful. 

As is The Dollmage. I don't think it is in print anymore; I had to buy a used copy from Amazon...but the one penny I spent almost represents how priceless this work really is. Highly recommend.