Friday, July 29, 2016

Field Games

Thank you for helping me to win this battle against Neuroborreliosis. Here is how to help, and here is how I am saying thank you.

Halfway through family night last Friday, I hit the ground. The tile in the kitchen is cool and hard, two thing that are remarkably comforting when you're overwhelmed with nausea. David's been in the shower for forever, it seems, so Erich brings me a pillow and a bowl to throw up in. I've already prepared all the fixings of my world famous paleo pizza, but since I can't get off the ground to assemble it I try and tell Erich what to do.

Erich tells me he's an adult and he's made a pizza before. I tell him he needs to listen to me because I have to explain my patented multi-stage cheese-as-glue-for-toppings assembly process. He ignores me. David comes out of the shower, sees me on the ground, and turns on his heel to run me a bath.

It's sweet, but I think he just wants me to get out of the kitchen. As the water fills up the tub, I watch as he ignores the rolling pin and starts hammering out the dough with the heal of his palm. I say, "what's your friggin problem with kitchen utensils? Why can't you just use them?"

I am banished to the bathroom. I stew inside my bath. Then I throw up, and immediately I'm hungry for pizza. I have to eat it on the ground, with my back against the wall. "Do you want to come sit with me?" Asks Dave. I say, "No." The austerity of the floor feels good. I don't bother to explain that.

Erich has been on the West Coast for a few weeks, and we are ecstatic to have him back home with us. He crushed his medical boards, and David passed his national real estate exam, so I suggested a family night to celebrate all their accomplishments. We would have pizza and then go out to see Swiss Army Man at the movie theater.
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In the morning I checked my color coded medication schedule and dutifully swallowed four Coartem tablets. And sometimes around the pizza assembly stage, they kick in.

Things start to get worse after dinner. I lie down on the porch floor. The dog hovers her big, curious face over mine, then wanders off to find someone less pitiful to scratch her. I'm too nauseated to speak, which is something that you completely forget about when you're not nauseated, and then when you are, it's tough to explain, because that would require words.

Dave is mad that I've exploded the kitchen making the pizza and then he has to clean it up because I'm suddenly too sick. After a year of this, you might be angry, too.
Something is wrong with Erich's knees and he's in a terrible mood. Dave turns the porch light on and needs to know where the dog's eye medicine is. His voice is too loud. The light is too bright. He leaves to take the dog on a walk, leaving the light on, and suddenly I'm angry that I've thought to have a pizza night (and what fun it is) to celebrate their accomplishments and yet there's no pizza party for me having finally finished my fifth and (I wrongly assume, final) round of my Biofilm and Babesia Part B protocol. Tears start to stream down my cheeks. Erich goes into his room to talk to his girlfriend.

Before bed, I debate swallowing another four more Coartem tablets. I can't stand the thought of feeling this way for a minute longer, but I have to take them. I swallow them and head to my bedroom inside a little cloud of misery.

Dave has set up some blankets on the floor for me to sleep on, and dropped some peppermint oil into the diffuser,  which helps. Erich sticks his head in the room and says, suddenly jovial, "This felt like a real family night!"

And then we laugh, and laugh, and laugh. Erich sits down next to David on the bed above me, I swallow my sleep cocktail and drift away, holding David's hand, feeling very cozy and skinny.

Everybody that I know is getting pregnant. I knew this would happen, but there's no preparing for it. Nothing kills my mood like a cute little announcement, always precious, sometimes coy, always involving a pun. Two bags of ice and an ultrasound: Ice, Ice Baby!!!! Two pairs of grown-up shoes flanking a tiny little pair of baby moccasins. You know what I'm talking about.

Of course I'm thrilled for my friends. I'm not a monster. But it isn't easy. Each announcement reduces me to a child at an amusement park, the one who is still too short to get on the roller coaster and already a little sick from chewing an enormous wad of cotton candy. Why do they get to have what they want? Why is it so easy for them? So instantaneous! Where is their struggle? These are the sorts of enlightened questions I pose to a God that I do not believe in. Why not me? 

The answer is the same, every time. Delivered from the puppet mouth of a Monty Python-esque God in the clouds - beard, robes, staff, booming voice: Because you want it too badly. That's why.  

My doctor, I'll call her June because she looks like a June, has a different answer:

"Because you are currently battling the fight of your life against an insidious bacteria that has been living inside of you for a decade. Because Borrelia is congenital. We see 20 week miscarriages. Stillbirths. It's passed through breast milk. Babies born with Lyme are a tricky situation. Mothers too sick with Lyme to care for their babies is a tricky situation. Every medication you are taking is designed to kill. Because you are halfway there and you need to stay the course. Because I Want It Now is not a good enough reason."

"Shall I go on?" June asks, looking at me directly in the eye, as she always, always does. "Because it's your decision."
If you've been wondering where the most happening place to be is this summer, let me tell you: it's the Asheville Eye Associates Medical Square Park location at 8:15 in the morning. The line was already out the door when I arrived. My appointment was thorough and included three hours of reading charts, poking at dots of light, and having many people in white coats shine bright lights into my pupil. I've never been to an opthamologist in my life. I received an A+, 20/20 vision, and no sign of 'current or previous optic neuritis.' I went home weak with relief and instead of my nice blue eyes, I had two big black circles inside a little ring of white. To celebrate, we drove up to Boone and played flashlight tag, which, looking back on it, was a strange choice.
Uncomfortable as it was to have a flashlight pointed at your dilated eyeballs, nothing could beat the joy of camping out at a Christmas Tree Farm with a gaggle of ten year old girls and a few of our best friends. We played capture the flag and freeze tag between the rows of trees. There were clear skies and a bright full moon underneath which we roasted hot dogs and the girls stuffed their mouths full of marshmallows until they, too, threw up in the tall grass behind the fire pit, and everybody was happy.
I had been careful to ration a few of my pain pills for this outing, and as a result I felt very close to normal, with one exception: my heart was beating so hard you could see it pounding through my T-shirt. A combination of babesia herx plus the sudden spike of energy it took for me to dash from my side of the field into enemy territory to grab the bandana during capture the flag was enough to take me down. Flag in hand, I dropped to my knees and crawled over to where the cars were parked, and then I slid my body beneath a truck and waited there, talking to my heart as if it were a horse.

Woah, girl. You're working so, so hard. It's time for you to just calm down, there. Let's give it a minute.

About twenty minutes later, I emerged from beneath the truck and crawled slowly and sneakily back to my side, where I triumphantly tied the flag to the Christmas tree- victory!- only to discover that the game was long over, we'd lost.
I had an appointment with June yesterday. I told her how I felt like I was in the last 10% of healing, and how I have to explain to Dave that the last 10% of healing is harder than the first 90%. She just smiled at me, looked me in the eye and said, "You're halfway there, Melina. Halfway. And you're doing so well."

Then, after hearing about my heart beat and air hunger, all signs of a persistent Babesia infection, she put me on one more round of Lyme Biofilm and Babesia Protocol Part B. This time I won't have to take the Coartem, because they made me too ill, but it's still one more month of Mepron, that $3,000 bottle of poison. You know what I wish I could do with that 3,000 dollars? Furnish a nursery and buy one of those stellar celebrity strollers that plug into your telephone. But there I go again, pitching a fit at the carnival. I must have eaten too much candy.


Mollyjane said...

This was so well written Melina. You perfectly put into words how completely disfunctional & spontaneously rocky this road is. Thank you for sharing so well. Sending love to you, from one poison taker to another ;)

Sri said...

It's so so hard when you want something and can't have it! Sometimes you know why and sometimes you don't know why - either way there is no baby and I was that person not very long ago! As I went through this pregnancy I realized that we all have various versions of the same battle towards the same end (a healthy baby) and some peoples journeys are short and painful and some are long and painful (and the rest of those lucky bitches who are fertile have completely different struggles) 😬 Appearances are very deceptive and lot of shit went down and I refuse to fully believe it until I have a baby in my arms and few months go by and I know he's ok for now (we all know how fast that can change). Still it feels like progress. I'm sure you will get there too and it may or may not look "normal" or"conventional" in the end but our generation is lucky we have choices and people who will support those choices.

Sri said...

Congratulations to you for making it half way through treatment! And congrats to Erich and Dave! You are allowed to wallow it's a right 😀 And someday there will be a quiet realization that you feel better and are getting better that will feel much nicer than a pizza party on the floor with a barf bag 😀 We are waiting along with you for that day!

Mary Thomas said...

Dear God the struggle is real. I spent my time in the baby wanting prison, or of course that's how it felt. Saying awkward things to my new-parent friends from my little window with bars on it. Those bars helped keep me from baby snatching, so. Years down the road with my two sweet kids in their beds I think- thank GOD/the universe/ the powers of wind and rock and what have you that pain ends. That struggle has mountains and valleys. I don't even care if I keep encountering struggle if it's a different struggle. So grateful for the ruthlessness of change. Sometimes. Spiritually squeezing your nauseated, brave little hand while you reach for the next rung on this awful motherfucking ladder of healing.

Pam said...

I look so forward to your writings, rejoice when they arrive and then the discomfort in my chest starts as I read all of the awful things that are happening to you. So glad you are half way through your journey and hopefully the second half will be less of a hell. Thank you very much for sharing it all with us. Sending prayers to help you on your way. Take care.........

Lisa said...

I truly have no idea why the medical community is divided over Lyme.....ultimately why insurance won't cover some or all of the treatment. I know "they" also deny it isnt present Down Under yet Aussies have Lyme. If you ever feel up to educating me/us ignorant readers I'd be keen to read your explanation. Regardless, just keep swimming! Literally and figuratively! All the best from Oz.