Monday, January 04, 2016

Where do babies come from?

Now I lay her down to sleep, but first...

We finish the Lord's Prayer. 

"Mommy, what means trespasses?"

"Trespasses are sins. When you do something wrong. Mistakes. We ask God to forgive our mistakes. [I know she's already thinking of her own mistakes because she said her low of the day was when she forgot she shouldn't say "you're mean" because it hurts my feelings, so we had to talk about it again and she had to lower her clip one color on the behavior chart. I explain more.] We all make mistakes. We're all sinners and God loves us anyway. Just like I love you no matter what. Nothing could ever make me stop loving you. You could never make a mistake that would make me stop loving you."

"Mommy, where do babies come from?"

I stare at her. Oh. My. God. Seriously? I'm not ready! She's five! Why are we having this conversation right before bed?!?! I know it's a little because it puts off sleep when we're trying to go to bed early on the last night of winter break, and a little because she really has these questions, and a little because we do things like say the Lord's Prayer and talk about our highs and lows of our days and she puts it all together. I decide to go with something she already knows.

"They grow in mommies' tummies."

"Yes, but where do babies come from?"

"What do you mean?"

"How do they get there? Who puts them there?"

Ugh. I can't just say the stork brings babies. I can't imagine discussing eggs and sperm right now. At bedtime. Alone. While Justin's at work. I can't... So I just say, "Mommies and Daddies put them there."

"But then how did the first human get made?"

I stare at her for another moment, but I give a little guffaw-type of laugh and can't help but smile big at her. "People have been debating that for years."

"Well, how..." she follows.

Great. Where do babies come from and evolution. Because it's bedtime. Bedtime is always when the best conversations happen. Where do I go with this? I fall back on honesty again.... in my tired, nervous, caught of guard, sleepy jumble of wondering what Justin and I thought we were going to tell her and when and why I didn't already know the plan for that.

"Mommy and Daddy believe that God made the world and the dinosaurs and everything. And humans came from a kind of monkey that evolved and became humans over a long period of time."

"I'm sleepy. All I remember is 'Mommy and Daddy.'"

"Perfect. That's really all you need to remember. I love you."

Thursday, November 19, 2015

Chemistry

In high school I was so bad at Chemistry that my parents got me a tutor, so as not to mess up my junior year GPA, or my reputation as a good student, or my chance at a successful future, or something like that. Even though a young college student came to our house once a week and sat with me at our kitchen table with my chemistry book open and that carbon paper workbook (remember carbon paper!) getting filled with numbers and letters, I still didn't understand it. Despite this tutor, I got another bad grade on a test. Honestly, it might have been a C or a C- (I don't remember)--could have been a D, but A's were always the goal.

I do remember, though, that I felt crushed. Chemistry made me cry. A lot. I'd go into my next class crestfallen. I'd go into the band room at lunch (such a nerd!) and sit in despair. I'd go to Mr. Brouhle's class at lunchtime--he was the math teacher whose own high school-age kids went to our school--and he'd help anyone who came to his classroom with their math questions while we ate. I went there a lot--Algebra II was no friend of mine, either.

We got one of our tests back on the Friday that the marching band was having our annual holiday party--who knows, in 1990, we may have still called it a Christmas party even though my best friends in the band were Jewish. I'd gotten that terrible grade and made up my mind that I simply could not go to the party because I should stay home and study until I finally got it right. I delivered all of this news--the bad grade, cushioned by the fact that I knew exactly how to punish myself and what I deserved and what I had to do to fix it--to my parents that evening. It felt like aliens had invaded our house. My mom said I should go to the party. She insisted. I remember standing in the bathroom watching her curl her hair while telling me we could work on the chemistry tomorrow, but I should not miss the party. (Who was this woman?!?! This valedictorian?!?!) My fourteen-year-old brother was getting dressed up and ready to go the mall with my mom. Neither of these people have ever liked shopping. There's no way in hell my brother would ever dress up to go shopping, leave alone without arguing about it. They were going to go. My dad would drive me to the party. I had to go. My brother, a freshman in the band, would meet me there. I begrudgingly got ready to go. At the party, which was in a rented room at a community park, my dad insisted on walking me to the door.

"No, Dad. I can walk there from here! You can just watch me walk across the grass! I'll be fine," I plead as he looked for a parking spot.

He parked.

When I opened the door all of my friends and my mom and my brother jumped out and yelled, "Surprise!"

I almost missed my surprise 16th birthday party because of chemistry.

Chemistry.



I drove down to San Diego last Wednesday to see my psychiatrist and see if she could somehow make my brain stop ruining my life.

The best thing about having my psychiatrist in San Diego--about an hour and a half or two hour drive from where I live--is the drive. That, and the fact that she is brilliant and sought after and there is no way I'd give her up after having had three or four psychiatrists that were not able to help me. I won't look for someone closer to my house until she tells me she can't see me anymore for some reason or another.

I listened to an audiobook, focused on the road, and spoke to no one.

Dr. S. listened to my description of life as I know it. The crushing sense of dread squashing my chest. The few steps from the brink of tears. The inability to keep a thought in my head that was affecting my ability to hold a conversation--even with strangers, around whom I'd like to sound competent. The way I so-much-more-than-usual could not remember why I walked into a room and what I wanted to do now that I was there.

I was so afraid she'd say, "Old Scary Medicine it is!"

But she didn't.

Turns out it's possible that the first med adjustment we did might have actually made things worse in a way. I never like to name my medications because all people are different and what works for me might not work for someone else. So, I'll say this: We upped medicine A so that it could support medicines B, C, and D that I'd keep taking as usual.  Turns out more of medicine A may have indeed done what I'd hoped--increased my sense of motivation to get off the couch and DO laundry rather than just lie on the couch and STARE at it. But, a side effect may be the inescapable, overwhelming feeling of dread.

Because of course. Side effects.

I was ordered to increase medicine C that night and reduce medicine A the next morning.

The dread subsided the next day.

So, now, back to our regular scheduled programming of deep sadness and melancholy. At least there's that.

Wednesday, November 11, 2015

Sand and Water and Foam

It isn't working.

The medicine that kept me steady for six or so years is not working.

I've done everything I can do (or is there more?) to try to fix it. I got a new, local therapist, after having kept my first therapist for eight years even though I moved more than 100 miles away from San Diego. I've seen my psychiatrist (still in San Diego) and done a med adjustment. I've gotten out of bed. I've eaten food every day. I've exercised. I've gone out in public when I'd rather stay in bed. I've taken care of Ella when I'd rather stay in bed. I've taken her to school, swimming, ballet, Girl Scouts. I've gone to the grocery store and Target and bought whatever we need and a few things we don't. I've done the laundry. I've thrown a party (a ray of light!). I've stood at school waiting to drop Ella off or pick Ella up and made small talk. I've responded to emails, but not taken phone calls. I've done dishes. I've taken bedding to the dry cleaner. I've helped with a kindergarten Star of the Week poster and various other assignments and crafts. I've bought, wrapped, and given birthday presents. I've been a mom. I've been a wife. I've been a friend. I've been a daughter.

I have been so depressed.

I wish I'd seen it coming and warded it off. I wish I'd known this could happen again. (But it's not again! It's different this time! It's not as bad! I'm out of bed! I'm off the couch! I'm not hospitalized!) With so many basically stable years, I think I believed I'd always be stable. I took my medicine, I saw my doctors, I did everything right. (Was it everything? Was there something more? If only I'd...)

I did believe I would always be stable. I did not know. I did not understand that a relapse could happen even if I worked hard at staying out of a deep depression. Even if I worked hard at staying me. Even if I tried.

And now this.

My heart is filled with dread. You know that feeling when you're about to do something you know you have to do, but you don't really want to do it? Maybe it's the dentist visit? Or the mammogram? Or the speech in front of a big group of people? Or meeting your significant other's parents for the first time? Or going to court? Or flying? Or taking a math test? Or doing your taxes?

I've walked around with that weight on my chest all day today. All. Day. All day just a few steps back from the brink of tears. One deep breath at a time.

I just want to lie down.

Everywhere I go.

But I can't get to the kindergarten pick-up area in front of the school and just stare into space until Ella comes over to get me to take her home. So I stand and I chat and I smile and hooray-here-she-is-let's-go.

I've been getting by like this for six weeks, so far. Some days are better than others, but not in any particular order. Just whenever. One day I think, "Oooo! It's working!" and then a bad day happens.

My new therapist is a gem and only a fifteen minute drive from home. She's been asking me how fast I cycle (I'm Bipolar II, you know, so every up has a down, but maybe I had my up (I'm only hypomanic... it's mild) and we missed it because I was just getting a lot of stuff done, or maybe it's on the horizon, either way we're watching for it). She reminds me of all of the things I tell other people about having a mood disorder when I'm stable. (I said these things in August! Where did that Me go?) It's like having diabetes or high blood pressure, you take your meds but sometimes they need to be adjusted and it's not your fault, it's just your body chemistry doing its own thing. You're so brave and smart and strong for getting help. There's nothing to be ashamed of. You caught it early (it could have been earlier!), you might stabilize faster. You have so much to live for. People love you. You will get better. No one is judging you. (Which is fine. I do the best job of it, anyway. I've been well-trained in judging. (Maybe second best.))

I don't believe her. I want to, and maybe I do, but still... there's just so much deep breathing and praying happening over here.

On Wednesday, Veterans Day, I go back to San Diego to see my psychiatrist. It's been four weeks since she tinkered with my doses and I'm afraid she's going to have to tinker again. She's so good. She knows what to do. But, when I sent her an email saying I needed to see her, that things were not good, her first thought (which she knew I'd hate) was to give me a medicine that I had an adverse reaction to the first time we tried it six or seven years ago. It made my legs so restless I literally could not sit still. At first I just felt a little squirmy, like I couldn't get comfortable enough to sleep at night. But it built up, until one day Justin was driving us home from the grocery store in Redondo Beach and I could not stop moving. I felt like I had to pee. The seat belt was holding me down while I shifted my body around, frantically trying to get comfortable. Or at least still. Fortunately, he was a newly graduated medical doctor doing his residency in Emergency Medicine, so he knew what to do. I took Benadryl and went to bed after calling my psychiatrist. She said I was doing the right thing by taking Benadryl and that it was a possible side effect--another possible side effect is a twitching face. For some people it never goes away. Needless to say, we changed to a different medicine.

She says they've made a better version of that drug. She says it is the most likely thing to help. She might have one other trick up her sleeve that we can try before going to that option. That scary option.

My therapist says there have been a lot of triggers recently that can cause people to fall into a depression even if they don't have a chemical imbalance. There are people who feel a sense of loss when their children move into elementary school (or out to college). There are people who have a tough time transitioning when their spouses move from day shifts to swing or night shifts and their daily routines are thrown off. There are old wounds made new. Those are environmental factors--situational, experiential factors--that have impacted my mood. That feeling of sadness around those moments, that's environmental. The feeling that I can't get out of bed and shower, but that I know that it would make me feel better, but that I just can't muster the energy to do it, but that I hate myself and feel worthless because I don't do it and then I still don't do it, and then when I finally do, I don't know why it took me so long to just do it, and so I judge myself for that, too. That's brain chemistry. Having that crappy brain chemistry while also facing some life changes... that's what brought me to this hell.

The good news is that, though I don't think this first med change we're trying is spot on, I have managed to function a little bit better than I was functioning in late September. Also, I still remember there was a time when I was a better person, a better version of me, and I still cling to the hope that I can be that person again. Soon. Maybe soon, please God, please?

I take those pills every day. Everyday, looking at them in my hand with a wish and a prayer that they will work. That they will keep me stable. I've done it for almost ten years. My therapist thinks it's great--a good sign, at least--that I never stopped taking them because "I thought I'd be OK without them, now that I was OK," like so many people do. At least I haven't messed with my brain chemistry a lot by going off and on my meds, thus making them less effective for me, she said. I laughed and told her I wasn't an idiot, that they're my lifeline. But bipolar people are notorious for stopping their meds when they're feeling good. Justin sees it in the ER with all kinds of diseases--diabetics who stop taking their insulin, blood pressure patients who stop taking their pills; so many people feel invincible at some point and just stop medication, then end up almost dying because of it.

I do not do that. I did not do that. It is really not fair that I have fallen so hard.

My therapist compared it to cancer. People who have cancer can relapse. No one blames them for not staying cancer-free.

It's a disease.

I did everything that I was supposed to do and I still crashed.

I feel like I'm dying.

You know when you go out into the ocean to play in the waves? And you've ridden wave after wave in and swam back out to catch another? And it was so fun? Now imagine that big wave. The one that pulls you under, and you see the sand and water and foam swirling all around you and you know that you have to get up to take a breath, but you're tumbling. You finally make it up and gasp, but the next wave sucks you back down and swirls you around, and this time you've only got that little sip of air in your lungs, so who knows if you can make it last until you see the sky again.

It doesn't stop.

Those waves just keep coming and coming.

I've had a few breaths--we went to Disneyland and I had fun (I almost didn't go, so having an OK time there was an accomplishment (if also a lot of work)). We had a Halloween party and I really thought it had put me back on track. (We love throwing parties!) But then there was a mini-crisis and I went back under. Still, I have had a few moments of respite. The ability to feel happy for even a moment is a very good sign.

But for right now, there's only the waves and the churning sand and the teeny tiny breath that God-willing will sustain me until it's fun to be alive again.

Saturday, August 22, 2015

What happened to her eye

Ella got five stitches on the corner of her right eye on Sunday, and I haven't had a chance to write an explanation until just now. For those of you who have been asking, this is what happened:

Our church building is a huge, beautiful Spanish style building that was once brimming over with Lutheran families in Long Beach. Decades ago.

When Justin, Ella, and I joined there were maybe two, perhaps three other families with young children in the congregation. The church sanctuary and chapel stand on the corner of a neighborhood street, with an office, school, and gymnasium/auditorium surrounding a courtyard. There's a preschool and infant daycare there now, and most of the second story has been used as storage, though the sign on the doors say "Junior High."

Now there is a good contingent of families with kids ranging in age from newborn through middle school, so some of the moms and dads have claimed three of the upstairs rooms and a kitchen as the Sunday School and Youth Rooms.We're decorating--buying furniture and fixtures, painting walls, cleaning carpets.  Making it look like home.

Sunday after church, a few of us stayed to do some work. We took a lunch break and some people had to go home, but Ella and I and one other mom and her toddler son returned to work for the afternoon.

The mom went downstairs to unload supplies from her car, while I stayed upstairs with the kids. They were watching a sign language video, then Ella switched to looking at paperback books from the Sunday School book rack. I was planning what to paint on canvases to hang over the couch.

There was a horrible, loud, crashing sound. Like someone had just slammed a heavy book onto a table, or dropped a weight straight down onto the ground.

I turned to see the boy still watching his video and Ella across the room on the ground.

I'm one of those moms who says, "Nice one! Shake it off!" Lots of times I don't even go over to check things out and make sure she's OK.

This time I looked. She started to cry, I'm almost entirely certain it was immediately (which means she didn't blackout). I ran over, in my practically white, khaki A-line skirt and floral blouse, and saw my girl lying face down somehow between a child-sized large classroom table and a wire, turning paperback bookcase. I turned her over as she was trying to get up. I saw a bruise on her shoulder, which I assumed had hit the table on her way down.

Then I saw her face.

Her right eye was already swollen and black and blue. For a second there was no blood. And then it started pouring out of the outer corner of her eye. There was so much blood, so suddenly. Her lower eyelid filled with blood. Blood was coming out of the tear duct side of her eye and flowing over the bridge of her nose toward the left eye.

I was not calm. I was not hysterical, but I was not calm. I had scooped her into my arms already, so I laid her down on a table and tried to stop the bleeding with my skirt. Where was the other mom! Where was her kid? I'd seen him start walking, and I knew there was an open door and that we were upstairs. I called for him. I couldn't see him. I should look for him. I scooped Ella up. Without pressure, the blood pours forth.

"Can you see? Can you see?"

So much crying. "It's getting dark! I can't see!"

Oh my God. She says she can't see! She says it's getting dark! What am I going to do? She's losing her vision! Please God, please God, please God...

Where was there paper towel? Where was there ice? Was there another cloth I could use, so that I could carry her and put pressure on the wound at the same time? Where was I going to carry her to? Should I call 911? What was I going to do?

I screamed down to the parking lot where our cars were parked, "I need help!"

I found a pretty, new dishtowel hanging in the kitchen. Such a nice touch. It was part of a set. I grabbed it and ran back to Ella.  Had I really left her on the Sunday School table? Good thing it's a big table! Good thing she's too scared to move! She's screaming so much. Screaming! Screaming! "Shush, shush, shush. It's OK. It's going to be OK. It's going to be OK."

I ask my friend if there's ice anywhere. She's got keys to the building, maybe she can get ice. No. She runs down to the coffee shop next door--carrying her son, whom I was relieved to see had not fallen down the stairs in the chaos--and returns with a bag of ice.

I took photos of her eye and texted them to Justin. All four or five at once. I called him. He answered. I NEVER call him at work. I have never in all our years called him while he's at work. I text if I have a question. Sometimes he texts back "busy" or "intubating" and I know that the life being saved is more important than what he wants for dinner or if he wants to spend his next day off with friends or just the three of us. I'm OK with that. It's true.

He answered right away. I spoke over Ella's shrieks of "It hurts! It hurts! My eye hurts!"

"Ella fell and cut her eye and it's bleeding."

He wanted more information and I didn't have any. "I don't know what happened. She just fell." All of this in a very panicked voice.

"No, her eye's not dangling out of her head. It's just bleeding. A lot.... Yes, I sent you a picture.... No, I don't think she passed out; she cried right away... Did you get the picture yet? No? Should I send it again? It says it's sending it.... OK. I'll hang up and try emailing it."

Again, I sent all of them at once. Who thinks about bandwidth when their child's eye is bleeding?

I called him back. "What should I do? Do you have the pictures yet? Where should I take her?"

At some point, my friend asks if I know where the urgent care is nearby. She probably knows--she lives in the neighborhood. But, no, I will not take my child to an unknown urgent care on a Sunday afternoon. I think we might be sort of near a good hospital in Long Beach. Maybe I should go to that ER.

Justin tells me I should bring her to his work. I wonder how I am supposed to bring my child to the ER where her daddy works 20 miles away from church. I think of another ER-doctor-friend-mom that I know who lives a few blocks from church. I tell him, "I can call her! Maybe she can come and look at it....I don't know why.... because she's near here and she's a doctor and she can tell me if she thinks I need to take her to the ER." I was still hoping maybe I was just overreacting and the ER was unnecessary.

He's gotten the photos and shown it to friends and everyone agrees I have to bring her in. My ER friend's husband doesn't answer his cell phone (I don't call her, knowing if she's at work in another ER.... yada-yada....). My friend offers to help by carrying my things down to the car. I tell Ella she has to hold the ice on her eye while we drive to Daddy's hospital.

"I want a grown up to hold the ice!"
 
"We don't happen to have a spare grownup sitting around, so you'll have to do it." My friend has to pick up her other son from somewhere, she's got the baby, we don't have two car seats... I can't even hash out a plan to make that work. But I have this idea. "Minnie Mouse will help you. We have that Minnie Mouse pillow on the backseat, that you use for naps. You can hug the Minnie Mouse pillow and lean your face on the ice to hold it on."
 
My friend gathers my purse and our water bottles and our church bulletin and Ella's Sunday School art project. I tell Ella she has to hold on tight to me while I carry her down the stairs. She is 40 pounds and 45 inches, and I have a back so painful that I've had an MRI and a bone scan and do physical therapy three times a week. We need not to fall down the stairs.

"OK. Now we just need to strap you in and we can go."

"But I want a grown up with me!" I've already considered my parents, but they live at least 30 minutes from where we are and I can't think--nor do we have time--of someone else to call.

"You have to do this. You don't have a choice. You can do this." I buckle her into her car seat, give her the twin-bed-sized Minnie Mouse pillow, and place the ice between it and her face. "Hug Minnie Mouse. Just hold her. She'll help you. We'll get there. I'm going to ask you how you're doing every couple of minutes and I need to hear you respond, so that I know you're OK."

I drive away from church, offering Ella classical music because I know she loves it and might find it soothing.

"No!"

"Yeah. I don't really want to listen to classical music either. How about Indigo Girls? We need strong women music." She says she wants silence, but I tell her I need music and put the CD in anyway, since the silence is filled with whimpers and sobs.

"How are you doing back there?" I've been reaching back and putting my hand on her leg. "You OK?"

 The momentary silence is broken with more tears and a "yes," but it is better than letting her fall asleep. She cannot fall asleep.

As I drive, I remember that at lunch I'd realized I'd left the important contents of my wallet at home.  My drivers license, military ID, ATM and credit cards (save one that's rarely used), and insurance cards were not with me. I thought to stop at home to pick them up, but it would add at least 30 minutes to our drive. I decided that if a cop pulled me over, I'd tell them to lead me to the ER. I decided that the ER would know that we're good for our insurance--I'd been a patient there, Justin works there, it'll be fine.

I called Justin when we got off the freeway, so he'd know we were close. He said everyone knew we were coming and to just tell them who we are when we walk in.

I am flustered as I give the valet my key, unbuckle Ella, pick her up, cover her face again with the ice wrapped in a bloody towel. As I move toward the sliding glass doors, I see the grandmother and mother in a Hispanic family waiting for their car look at me with sympathy and horror, saying something kind in Spanish, and I dart past them, past security, past triage.

He said they knew we were coming! He said he'd meet us at the door! Where is he? Don't they know? I'm walking back like I know where I'm going.

I hear voices behind me, at triage, "Excuse me, ma'am?"

"I'm Justin Anderson's wife. This is my daughter. They know we're coming?" I say, sure that I sound crazy, feeling eyes on me from the waiting room, the patients in triage, the staff. Then I see through double doors: his smile, those dimples--I almost start to cry. "Oh, thank God. Look Ella! Daddy's here! It's going to be OK now, it's going to be OK. Daddy's here."

He takes her in his arms and I walk behind them, holding the ice against her face. I see our friends and his coworkers and I'm overwhelmed with grief, and fear, and relief, and knowing that I made it there, and that it would be OK, and that maybe it wasn't going to be that OK, and that we must be a sight with the screaming child, and the blood on my skirt, and the doctor/daddy and what felt like an entourage of smart, useful, kind people who led us to a room. A friend put her arm around me and asked how I was doing. I could hardly speak. I composed myself again, so that when Ella next looked up she'd see a strong, not-scared mommy with her.

There were some questions about what happened, and then questions for her that I started to answer before realizing it was a concussion exam. She followed the doctor's fingers with her eyes while I chatted with her (you remember this mommy, right? From the Frozen birthday party? Her little girl turned 3?).

Justin floated in and out to hold our hands. He had several critical patients, if there were a code blue somewhere in the hospital, he was the one who was supposed to go, but he was there. I was sure that was better than being alone at a children's hospital with her. Daddy was there. Right there.

Our friend-the-physician-assistant came in to do the stitches. (You remember this mommy, right? We saw her at Disneyland? And they were at the Frozen birthday party, too?) Justin wasn't there at the moment. We hadn't said he had to be--I said it didn't matter. I was just thinking I wanted it done and over with and I didn't want to have to wait for the perfect moment in the ER where everyone I needed available was free. I held Ella's hands and watched. A nurse held her head still. Ella had her eyes closed. They said they were using water to clean it. A syringe went in and out all over the area. Justin came back into the room. More shots of "water." Then the stitches. Blue. With a needle that looked like a fishhook. I'd look at Ella's eye and then look at the ground. Her skin tugged and pulled and pink and bruised and cut so deeply. The ground linoleum white and moving. The blanket. The flesh. Her hand. Justin's hands. Her eye.

When everyone else left the room, Justin asked me how I felt.

"I'm going to need to sit here a minute before I drive her home."

Saturday, November 15, 2014

It's not nothing. It's not no big deal.

The results everyone has been waiting for came in about two weeks ago. I took the call when I was shopping in Target for birthday presents for a bunch of Ella's friends, standing in the scooters and trikes aisle of the toy section.

It's not cancer, rheumatoid arthritis, lupus, or some other weird autoimmune disease that could kill me. The oncologist/hematologist said that he didn't think it was necessary to take a bone marrow sample to do further testing because none of the blood tests indicated a need for more research. He's pretty sure that one of my psychiatric medications is medically lowering my white blood cell count. Basically, my leukopenia is a side effect of managing my mental health disease with drugs.

My brain chemistry problems are causing my blood chemistry problems.

To the general public, I imagine this sounds like a quick fix. Good news. Nothing to worry about.

Not really.

Let me explain.

When I went to San Diego to see my psychiatrist on October 22, I had not yet heard from the oncologist. So some kind of blood cancer was still out there as a possibility. It was an unlikely possibility in most people's opinions, but it was still very real and stressful and worth worrying about.

She explained that she had reviewed my chart, which includes seven or so year's worth of medications and blood tests. She had also done some reading and recalled one or two other patients who had been diagnosed with leukopenia and corrected the blood condition by changing their medications.

She was willing to start working with me to titrate (slowly lower until it was zero) the amount of the medication she suspected was the culprit (let's call it L, for the sake of simplicity and because I don't like to name my meds because everyone reacts differently to different meds).

I became very uncomfortable as we discussed the option. Like viscerally uncomfortable--palms starting to sweat, heart beating faster, dry mouth uncomfortable.

"Can we wait? Because we still don't know for sure that it's the medication. It could be something else. It could be cancer. And if it is, and we're messing with my meds, I'll have two problems instead of just one. And I'll be messed up as it is; I don't need my meds to be messed up and have my brain messed up, too. I'll have enough to deal with."

She agreed we can wait.

"It's going to be the meds, though, isn't it?" I said. "Which isn't really better. Other stuff can be fixed."

Tears sprang to my eyes, "I mean, I already almost died from this!"

It was the most bizarre conversation, gallows humor, weighing the differences between a chronic blood disease or cancer v. chronic depression and mania.  Bipolar II--a milder version of Bipolar I (so, not what you see in movies), but still bad enough that I was going to kill myself. Still potentially lethal. Still chronic--as in lasts forever, doesn't go away, long term problem.

Given that I have recently lost a young student and friend to cancer and have a college friend with Stage 4 metastatic breast cancer who is my age with kids, it feels weird--bad--to make these comparisons. But we had to. Some of them were silly--like I said, gallows humor.

"People just don't know what to do when it's depression. If you have cancer, people send you flowers! No one sends someone with depression flowers!" she said. I thought of the people my mother had sent flowers who had cancer. True.

So, I feel bad that I haven't posted. I know a lot of you have been worrying about me, and by writing about my leukopenia diagnosis and testing, I made myself vulnerable to you. I'm grateful for everyone's concern and sorry that not knowing has been tough enough for you to call my mom to ask about me or to give me those concerned looks and ask me--really ask me--how I'm doing. I do so  appreciate everyone's concern and especially the offers to help with Ella if I need it.

I want to be jumping-up-and-down happy that I don't have cancer, but I just can't.

I've been stable for almost eight years. Stable--meaning I haven't wanted to kill myself; I haven't been unable to get out of bed or off the couch; I haven't been unable to hold a job (during Justin's residency, when I was employed in LA, I never had to call my doctor to get a note to my employer saying I simply could not work anymore because I was sick); I haven't been unable to care for Ella; I haven't been unable to take care of the house.

When I'm told that part of what is in my formula for stability might have to be taken out, it is reasonable for me to worry. I can't take it lightly. It's not, "Oh, big deal. It's just my meds."

It's not, "At least you won't die from that." Or "At least no one dies from that." Or "Great! So it's no big deal then." Or "Great! It's nothing to worry about, then." Or, "Cool! It's a simple fix."

It's more along the lines of, "Holy shit. That really sucks. I hope you don't die from that. Let me know how it's going and if there's anything I can do to help. I know things could go really wrong and it could be hard on Ella and really hard for Justin to deal with because he relies on you to take care of her and he'll worry so much and he can't just take time off work to take care of you (and Ella!) if you get really sick."

So, I'm sorry I haven't written. I know everyone's wanted to breathe a huge sigh of relief and I've been holding out on you. It's just that I'm still really kinda scared. Sure, I'm glad I don't have to face a new demon and fight a new fight and learn a new method of survival. But I know this disease. I know what it can do to me, I know what it has done to me, and I know what it's like to be dying.

That's what suicide is. It's dying. There's so much said about it being a choice, or people who kill themselves being quitters, or selfishly not caring about anyone but themselves, or being cruel to the people they leave behind. Or no one seeing it coming. Or it being a sudden decision.

But suicide is the ultimate result of a person's brain being ravaged by a disease that does not relent. Suicide happens to people who don't seek help, but it also happens to people who do seek help. It could have happened to me, and I had family and friends who loved me (even if I didn't believe it then), I had private therapy, group therapy, Cognitive Behavioral Therapy (CBT), two psychiatrists working together--one in the CBT Outpatient Program and one private), and pastoral counseling. I also had a very detailed plan for how and where I was going to die. Even after months of all that treatment, even though I didn't have a plan at the beginning, in January 2005, just a deep, inconsolable sadness, I got worse and worse and worse and by April my thoughts of death became so serious that I was hospitalized for eight days.

Yes, I am glad I don't have two chronic diseases. I'm just not liking the idea of messing with the one I currently have under control.

Here's the glimmer of hope. The oncologist doesn't seem too concerned about my low white blood cell count. He and my psychiatrist still have to talk to each other about the best course of action for me.

Am I at greater risk of illness or death from physical or mental illness? It's hard to say.

A quick question before you go: Do you think I have cancer?

I realize that I haven't posted in a while; my apologies to anyone who's been worrying about me and waiting for an update. I'm just going to go in chronological order here, starting with a post from early October that I wrote but forgot to "publish."

 From early October:

The upside to having an ER doctor for a husband, is that when he's had a couple of drinks and he's heading out the door to walk over to a friend's house to hang out and watch the rest of the Angels game, you can slip a medical question casually into conversation.

"Oh, hey... before you go... when the doctor called and said that he hadn't contacted us about the blood test results yet because he was waiting for the fle...cyt... what was it called?"

"F----." (He's not here, and I don't remember, so F---- will have to do.)

"Yeah, that. He said that was the one that checks to see if I have leukemia or something like that. But he said the other tests seemed normal. But didn't he already say that cancer wasn't really a concern? So how important is this test? Does he think I might have cancer?"

"No. You don't have cancer. He can't give you your test results until they're complete. So he can't really say anything yet."

"So I might have cancer?"

"No." He's smiling and looking reassuring and also having those laughing eyes that say I'm so cute and he loves me even though I'm being neurotic.

"Are you just saying that because you're my husband and you're being protective?"

"No. I really believe you do not have cancer."

"Are you just saying that because you want to believe it or because you know it's true?"

Those laughing eyes again. "I believe it."

"So I might have cancer? Why is that one test taking so long to get done?"

He explained that it basically magically separates my blood cells and they go through a tube and they can see what each one looks like. If any of them have cancer.

Something like that.

"So why is it taking so long?"

"Because it's a hard test to do."

"Not because..."

"If he saw something to be concerned about in the other tests, he'd have called."

"Alright, fine. Go watch baseball."

I'm not really worried. I can't possibly have cancer. I don't think it takes them that long to figure that out. And something would have been weird about one of the other tests, right? So it's not that.

Which means it's going to be my meds.

Because it sounds like the other tests ruled out lupus and rheumatoid arthritis or something like that. So then it's some kind of cancer. Or my meds.
 

Tuesday, November 04, 2014

Voting Day: Age 4


Ella's first election, age 5 months

Ella's second mid-term election, four years later--age 4

Ella's first election was on Tuesday, Nov. 2, 2010.

She still has those dimples and that crinkle nose smile, and this year--four years later--we spent the evening watching the returns while she was asking me questions.

Looking at the screen packed with head shots and stars and stripes: "Are they ours?" "Is ours the boy or the girl?" "They're both girls." There's three boys." "Did we vote for them?" And cheering.

"Are they presidents?"

"No, they're Senators."

"What's a Senator?"
 
I explained that there were teams called Republicans and Democrats and that we were Democrats. (Though I do expect that she can make her own choice one day, I think we can do the corporate We for now.)

It was the best returns party I've hosted thus far.


For her story at bedtime, I began, "Once upon a time, there was a fairy princess and she and her mommy and daddy went to the polls to vote for the Line Leader, and the other people that would be leading them all. Because they knew that there were millions and millions and millions of people and they needed a few people to be their leaders and help them get things done...." I told her this whole story about the voting process and winning and losing and learning to work with each other even if we didn't vote for them. When I came to a point where I could say "the end" (not really believing I'd gotten away with it), she wanted "one more story like that."

"Once upon a time, there was a group of friends..." and I named all of her six classmates. "They had a Line Leader, and a Snack Helper, and a Supplies Helper, and a Teacher Helper."

"That's just like my school!"

"Yes, it is. They all had their jobs to do. The Snack Helper made sure everyone had enough to eat, and the Supplies Helper was supposed to make sure everyone had what they needed so that they could create things together." I started listing off school supplies, and she added a few I had missed.

"The problem was that the Supplies Helper wasn't sharing."

Oh, her eyes! How can they possibly get so big at the very idea?

"Everyone could see that the Supplies Helper was piling up the pencils and not giving them to his friends when they needed them. The Line Leader, Snack Helper, Teacher Helper and Teacher talked about the problem and decided that they should ask the Supplies Helper why he was doing that. He said it was because he was afraid that if he shared the pencils, then he wouldn't have a pencil to use when he needed one.

"'That's silly!' said the Snack Helper. 'I share my food with my friends and I still have enough for myself.' After a while they were able to convince the Supply Helper that if he gave pencils to other people he would still have a pencil that he could use. He let them have pencils, and then they were all able to work together with the supplies that they had and they made a beautiful house with the paper, cardboard, tape, glue, stickers, crayons, and scissors. Everyone was happy and the Supply Helper realized that he still had a pencil that he could use, too. The End."

Monday, September 29, 2014

Groggy v. Nervous Wreck


Justin got home from work at 2 a.m.Sunday morning.

I'd been tossing and turning so much that the covers were rolled into a giant ball at the foot of the bed.

For days we'd been discussing the availability of taking my anti-anxiety meds, and I was planning to let myself take half of one the next time he was home and I didn't have to drive anywhere.

2 a.m. seemed like a good time to give it a shot. With him here, I didn't have to worry that I wouldn't hear or respond to Ella if she needed me in the night.

I slept solidly until Ella woke up at 7 a.m. (God forbid a kid who is grumpy when awoken at 7 o'clock school three days a week for preschool sleeps in on a day that we have no where to be.) Justin had to sleep until noon, since he had to work another swing shift, so it would be a true test of my anti-anxiety-medicated parenting skills with backup in case things just weren't going well.

When he woke up, he asked how I was doing, and I said I felt much calmer. That it was such a relief to be awake and not feel so on edge all the time.

I told him that I'd been so worried about not being there for Ella if I were groggy, that I'd forgotten that I was not really present for Ella when I felt so anxious, either. I realized that she'd be much better off with me groggy than me losing my mind.

Because that's what anxiety is. It's losing your mind. I was being sucked back into so many bad memories, analyzing them and wishing they'd gone differently.

I was getting out of the car in the garage and flashing back to memories of my teaching days, when there had been conflicts with students, or teachers, or administrators, or friends. I was angry or disappointed with myself for what I'd said to people in 2004 or 2005. This, while I was unlocking the garage door, getting Ella out of the car, unloading the groceries.

It's called ruminating.

I was getting irritated with Ella for being four--fellow parents know what that's like, but I was feeling worse about it, having a shorter fuse, and hearing her say things like, "Why are you rushing me?" when I was trying to get her buckled into the car and all I wanted was for her to put her arms through the harness part of the seat belt so that I could get out of the 90 degree garage and into the air conditioning.

People were asking me how I was doing, and I was saying, "Fine," but not remembering to ask them how they were doing in return. I know I was saying "fine" in a strained voice, and I could feel the vacant look in my eyes, the I'm-lying-but-you're-not-really-asking-and-we've-just-run-into-each-other-so-I-can't-tell-you look. It was Target, church, the greenbelt, the park. No one really wants to know the truth when they ask that question as courteous greeting; the truth is not the courteous response.

Justin told me he knew, that he could tell by looking at me over the past week that I'd been struggling to hold it together.

My heart sank. I'd hoped I'd been doing a better job of getting by. I'd hoped the only sign he'd seen was me actually using the words to tell him that I felt "so funny," "so weird," "so off," "so anxious."

But of course he knew.

The night before, at a church pizza dinner with other families, the one friend whom I'd told about the leukopenia diagnosis and ensuing anxiety asked me if I'd gotten any more news. I told him no. He asked me how I was feeling, and I said, "Not good," shaking my head and feeling the tears almost surface, hearing the catch in my voice. 

"I can tell," he said.

Oh, no.

So, Saturday night I took half a pill and slept for five solid hours.

It was like pushing a reset button. I have now survived two days without my heart racing, without my palms sweating, without my throat tightening, without feeling like I am doomed to falling into a relapse of clinical Major Depressive Disorder and Anxiety. 

I put my head down for a minute while I was folding laundry and Ella was with Justin in his office and I fell asleep. I let her play on the iPad while I closed my eyes on the couch for a rest on the couch. (Remember, she had a fever, so she legitimately had to stop dancing around and rest, too.) 

Justin's off today, but when he works later in the week and I'm solo-parenting with Ella, I'm not going to feel guilty for letting her watch an extra episode of Mickey Mouse Clubhouse or have time on the iPad. 

Ella will survive extra screen time unscathed. It won't ruin her childhood. She won't remember that time she was free to zone out with electronics and feel sad about it.

If I am clinically depressed or anxious, it will be a lot more damaging to my relationship with her. We'll remember that time I was mean to her. We'll remember that time I made her cry again and again. We'll have a harder time pulling out of these hard times together. It wouldn't ruin her entire childhood, but it wouldn't benefit it either--that she spent less time in front of a screen and more time with me frustrated with her. 

This is the way it is, for now. 

The upside is, now that I'm not crazy with anxiety, I don't think it will be this way forever. I'm still very worried about the leukopenia. The doctor said, "I trust you won't be letting people cough in your face," but I'm a mama with a low white blood cell count attempting to stay healthy while parenting a kid who isn't always covering her cough and always needs help with Kleenex when the sneezes are just too gross. I'm scared (and pretty sure) that he's going to tell me to switch up my meds, which means I'm less worried that I have cancer or a chronic blood disease in addition to my chronic mental health disease, but still very worried. 

Changing my meds means changing my brain chemistry, and til all this started happening, my brain chemistry was working just fine. Changing my meds is like telling a diabetes patient that she has to change her insulin dosage, even though her blood sugar has been level for years. It doesn't sound like a great idea.

Luckily for me, I have a psychiatrist who sent me an email on Sunday evening just to check on me. She'd reviewed my chart and seen a possible correlation between my meds and my white blood cell count. She planned to work with my hematologist/oncologist to fix this problem. 

There's hope. Which is nice, after feeling hopeless for so many days. 

In the meantime, I haven't taken another anti-anxiety med since 2 a.m. Saturday--36 hours or so--and I can already tell I'm going to need one soon. Fortunately, Justin is off today, so he can do the driving while I get through another day without losing my mind.