Wednesday, September 21, 2016


 As happy as I was to reach the point in my treatment where I could be off antibiotics for two weeks at a time, the addition of Rifabutin to the mix crushed me. Rifabutin is a bright orange diamond shaped pill most commonly prescribed to HIV patients, and it leaves you so nauseated that even water feels iffy going down.

During the first two weeks of this new protocol, I started losing weight rapidly. I’d already lost a little over fifteen pounds since starting treatment in January, a lot of it muscle mass, but I seemed to have leveled out around 125.  Now the pounds started melting away and new bones emerged in my shoulders, my pelvis.

I went to three doctors about my newly enlarged lymph nodes, until the last one told me they weren’t actually enlarged, I just didn’t have any fat to cover them anymore. The barista at the café wistfully asked me one morning what I did to stay in shape. “I try and eat healthy, I run- but I want to look like you.”

I didn’t know what to say. I’ve never been weaker or in worse physical shape in my life.  “A pulsed regiment of Cipro, Omnicef, Septra Double Strenght and Rifabutin” would have been an honest response, but a very unhealthy one, perhaps vaguely illegal. A beautiful young woman with a gorgeous figure longing after the shape of a girl who has been sick for a year felt like a dismal report on society.
One day I stepped on the scale at a practitioner’s office in South Carolina and saw the needle fall below 120. I’ve never seen sub 120 numbers since I passed them on my way up. 119, 117- I was now lighter than I was in middle school.  I started to panic. I pictured myself in an OB office, a doctor informing me that a sudden drop in weight could be responsible for my inability to have a baby.

My theoretical infertility and the inexistence of this theoretical baby was constantly looming in the shadows of my mind, the greatest punishment from a god I thoroughly do not believe in.
There’s something about weight loss, it makes people suspicious. My mother sounds angry on the phone, so does my sister. David remains tight-lipped, refusing to say anything that might endorse this new shrinking wife. Unless you’re sick from chemo, there seems to be this idea that you are secretly in on it, quietly crazy about all the pounds flying off.  If you really wanted to gain weight, how hard could it be? Just eat some ice cream. 

At first my doctors tell me to supplement my diet with even more ‘good fats’. That translates to avocado, coconut milk and almond butter. Unfortunately for me I can’t stomach those things any more, besides it would take an awful lot of avocados to really pork somebody up.

Anything I ate back in the winter and spring when I was severely ill and terrified all of the time taste like rancid medicine to me now. Same with all the powdered maca and random superfoods I ordered off the Internet and now keep in glass jars on exposed shelving in the kitchen. Those powders and infusions provided more than just nourishment over the past year. I became obsessed with them, stirred them into concoctions that I would stage, photograph and upload to an instagram account I’d created just for them. Their powdery promises of miracles soothed me to sleep at night. I perused the Moon Juice website for fun. They became my friends when I was too sick to have real friends. Now they repulse me, they taste sick and sad.  

On the two weeks off from medicine, I pitch my strict diet right out the window. My doctor looks at my charts and tells me to eat whatever I can whenever I can. That evening David and I walk to the ice cream store up the street from us, and I boldly order a kiddie cone. Salted Caramel. I lick it and then I throw it away. The sweetness burns in my mouth.

In the next few days, however, my body begins to steady itself. No more HIV meds, no more Cipro, for two whole weeks. One night, out to dinner with Erich and our friends Cliff and Kate, I order a grasshopper milkshake. It goes down easy. Thus begins a regiment of daily, light green grasshopper milkshakes.

But 2hat about the inflammation? You might be asking yourself, clutching your glass vials of camu-camu. The casein! The sugar, for chrissakes! Fuck it. When you can’t win you may as well enjoy the taste of losing.

I go deliberately off the rails. I seek out desserts around the city even when I don’t really want them. The only thing I avoid is gluten. Long-term antibiotics can make you gluten intolerant for the rest of your life, even if you had no problem with a slice of bread when you were healthy. In ten days I take down a boatload of sugar. It would have shocked the pants off of my new community of autoimmune paleo lyme and MSIDS patients. I would have been kicked out of the club.
 One afternoon I take Whitney to a swimming hole up on the Blue Ridge Parkway. Whitney has been extremely sick for about two weeks, but I know if we can just get her to the water, the cold shock of it will help relieve at least a portion of her pain. It works out, we both feel better. In fact as we are driving home I feel so normal, so vivacious even, that I suddenly find myself daydreaming about an Oatmeal Porter from Highlands Brewery. Emboldened by my moment of good health, I blurt out, “Whit, what do you think would happen if I drank a beer?”

I expect a sinkhole to open up and swallow us down for voicing something so ludicrous. I expect Whitney to shake her head and tell me what a grave, grave error it would be. I haven’t tried alcohol for well over a year. I have the MTHFR gene mutation that makes methylation difficult, meaning I have problems detoxing even the everyday, unavoidable toxins. I spent the past ten months in what felt like one long continuous magnesium-salt bath, trying to rid my body of poisons. Now I wanted to drink a whole bottle of it?

Instead, Whitney says something truly shocking. “Nothing. I think nothing would happen.”
Later that afternoon, I hike up to Haywood Ave and buy myself a six pack of Oatmeal Porter from the Brew Pump, a gas station/bar hybrid that’s become the place to be in West Asheville. I half expected the cashier to stop me – “Woah, not for you!” in the same way that I half expect god will prevent me from having my baby. “Not for you!” But she doesn’t even ask for my ID. I walk home with the sixpack in my hand, cutting through the Tuesday farmers market at the end of my street and ignoring the woman who normally sells me mason jars full of raw milk. I was going rogue.

Back home, I open one bottle and drink half of it. I wouldn’t say nothing happened- I become immediately intoxicated. While preparing my world-famous paleo pizza, I lose control of the knife and slice my finger so deeply that it would still be bleeding the next morning. I felt liberated and terrified. Then I poured a bath and sat in it, waiting for the world to end, or at least the hangover from hell. I had consumed half of a bottle a beer.

In the end, Whitney was right. Nothing came of it. I woke up the next morning and felt fine. Besides my new status as a mega-lightweight and a scar across my fingertip, it was entirely anticlimactic, which is exactly what I wanted. I didn’t want another beer, I just wanted to know that I could pose as a normal, healthy person for a few minutes and get away with it.

In fact, as the days fold forward, I do feel like a normal and healthy person, if perhaps a rambunctiously hungry one. I put on a few pounds and float through a string of miraculously easy days. Life seemed to be marching forward. Then Monday comes around again, with its twice daily handful of capsules. The nausea returns overnight.

“You would have been fine just losing a little weight,” says the stern god-doctor in my head. “But the yo-yoing, the up and down, that’s what’s costing you.”

Sometimes it all feels a little useless.
Click here to see all the posts relating to my Lyme Disease story. 


Mom Starting From Scratch said...

I was so glad to see another blog post from you was up, but man....what a post. I don't even have words for a quippy little sum up. It's not happy/sad/good/ is what it is and I'm glad you wrote it. Keep writing, Melina.

Whitney Herline said...

Sometimes, we do things that are good for our souls, not just our bodies! Obviously, Oatmeal Porter falls into the soul-nourishing category ;) Everything else will catch up and balance out. You are so strong and life is on your side!

Ann Tilley said...

Adam lost about 50 pounds when he was at his sickest -- his his ribcage showed, but it was the first time he wasn't "chubby" in his life. Now that he has gained back most of that weight, he's much harder on his body and wishes to be thin again. Ugh, it's a vicious cycle that too many people are familiar with. I try to remind him that he can still WALK and use his HANDS but body image issues are the worst. I'm glad to hear you speaking up about your own weight issues. I know it's hard but try and remind yourself of the positives, like your FINGERS working and your talented writing brain. Much love, Ann.
PS- THANK YOU for coming to our wedding!! I know you weren't feeling well but we were happy to see you!

Rachel said...

Damn, Melina. Your writing is mesmerizing. I love the great big "fuck you" to nausea and medicines and this awful thing that's had you in its clutches for a year. If I could will you to health, I would. But instead, I'll keep devouring your words and sending good thoughts from Michigan to North Carolina. I so wish I knew you in real life. I think we'd be friends. Is that weird? I just really like you.

Melina said...

@Rachel. Not weird. I really like you too. If you are ever in North Carolina, let's go get a beer, or an 11 dollar super food smoothie, depending on the day. xo

Carley Nelson (donath) said...

I think you are amazing Melina. Sending you love and healing all the way from Montana. Please keep writing, you are an inspiration to me.

Ryan and Katie said...

I can relate. I went through a similar weight loss while being on high doses of steroid to treat my RA. It was hard to hear people say how good I looked when I felt like I was withering away and miserable. And it baffled my dr. As steroids usually have an opposite effect. Thank you for being vulnerable sharing how you cope with your invisible illness. You are inspiring and educating many!