mask on the airplane. i often pretend i'm subzero from mortal kombat. other passengers staring seems less annoying then. also, fyi, a mask is a great way to get a whole row to yourself.

tuesday night, i went to bed with the sniffles. “why do i have post-nasal drip? why does my throat hurt?” i kept asking my partner (yes, i probably sounded like a child. what of it?).

“that’s what always happens to me at the start of a cold,” he said. i drank emergen-c, took more zinc, had some throat coat tea and echinacea, and went to bed praying that it was just allergies and not a cold virus. seriously, i was on my knees begging god, the universe, the cosmos, whomever or whatever to not let me get sick, because unlike normal, healthy people, when i get sick, i’m down for the long count. a simple cold can (and usually does) last 2- 3 weeks and turns into a full-body infection that leaves me unable to get out of bed. over the years, i’ve become an increasing germaphobe, even leaving new york city (in part) because i was unable to protect myself from the contagion of millions of commuters. most of my years in the city were spent dousing myself with hand sanitizer, wrapping scarves around my mouth and nose on the subway, physically moving away from anyone with so much as a sniffle and still getting sick all the time. i started wearing surgical masks when traveling on metro north or flying on a plane. anyone who comes to my house has to first wash their hands. you’re really not supposed to come up if your sick. house rule (i earned myself the nickname “rules” this year…). but if you do come sick or get sick once you’re here, i either resent the hell out of you for being in my sanctuary with your bugs, or i’ll ask you to wear a mask. this must sound crazy. it was. it is. but a quick glance at my lab work, any blood work from the past 13 years, will show you just how weak my immune system has been. i haven’t had the ability to fight off anything. i’ve had more bouts of bronchitis, strep throat, pneumonia, and other illnesses than i can remember or count. one result of this, was a growing paranoia about germs. it wasn’t irrational but it was seriously impeding on my life. during the winter months, i have been afraid to travel anywhere, for fear i’ll get infected. see, for me, once i’m exposed to the germs and they get into my system, there’s almost nothing in my body to fend them off. my immune system, because of all of my autoimmune diseases and the medications i take to treat them, is all but non-existent.

so, last night and the night before i went to bed feeling miserable- ear aches, sinus pressure, florescent goo (gross, i know. i’m sorry.), headaches, stuffy, runny nose, etc.. all the trimmings of a terrible head cold. i had trouble sleeping on account of how hard it was to breathe. needless to say, i went to sleep last night assuming that i was going to feel awful in the morning. my first thought when i opened my eyes was something like, “i don’t want to get up yet.” and then i had my second thought, “i feel better. holy shit! i feel better!” this feels like… a miracle. part of my decade+ illness has included symptoms that mimic the start of the flu. these have affected me 4/5 of the time, so to wake up and notice that i feel considerably better feels incredible. it feels like real progress. while i’m still really quite sick and don’t feel great, i feel like i’m on the up and up and this is such an unbelievable relief that i had to share. do you have any idea how much easier it’s going to be to feel under the weather and to believe that it’s not going to evolve into pneumonia? i don’t. but i’ll keep you posted.

since i started treatment for my lyme and babesiosis, i’ve noticed a lot of changes (which i will get into in another post). but this one, while still a bit early to call it, has the potential to be the most immediately life changing. i haven’t actually had a cold or the flu since i started taking massive doses of antibiotics. i think it’s been about 2.5 months. this is a record for me. and having a cold for a couple of days and then starting to see an improvement? that’s unprecedented. and now that i’ve told you all about it, i’m going to stay in bed until my magical, little zojirushi rice cooker finishes cooking my breakfast amaranth.


good days, bad days. today falls under the latter. my bones are hurting, maybe from the endless rain. my ribs are inflamed and it’s painful to breathe. with swollen glands and a headache, i feel like i might be coming down with something. when i woke up this morning, my ears and the surrounding skin was swollen, hot, red and painful. but this is all kinda par for the course. i’m not complaining, not really anyway, because since i started treatment two months ago, the bad-to-good ratio is starting to shift. the bad days aren’t usually quite as excruciating as they were before. the good days, while not pain or symptom free, are significantly better than i remember them being. my brain feels a little clearer. my headspace is calmer. i think i’m improving. i hope i’m improving.

a few weeks ago, i realized that i was going to run out of my antibiotics before my appointment with my lyme doc. i called her office to try to get in ahead of schedule. “she’s out of town,” a receptionist told me. “you’ll have to wait until she comes back.” i went ahead and slotted myself in for a date immediately after her return and then told the secretary that i was going to run out of meds. i asked if they could call a refill in to my pharmacy. i was told they would do that. a couple days later, i got an automated call from walgreens telling me that my prescription was  ready. since i still had a few days of medication left, i didn’t rush to pick it up. by the time i did, thursday night before labor day weekend, i discovered that the prescription waiting for me was actually methylprednisolone, a steroid i’ve been taking for years that, due to a contaminated batch or a supply shortage (depending on who you talk to), has been unavailable for months. i asked the pharmacist about my zithromax (an antibiotic). nothing had been called in, she said. my partner and i were leaving town the next day to go to a wedding in michigan. on friday morning, i called my doctor’s office as soon as they opened. the receptionist promised to have a doctor call it in right away. a few hours later, i called the pharmacy- still nothing. i called my doctor’s office… again. this time i spoke to a receptionist whose daughter has lyme and is also being treated by my physician.

“this is for lyme, right?” she asked me. i told her it was. “they don’t call this stuff in,” she said. “they don’t want to get involved with lyme cases, but i’ll try to get someone to do it. i wouldn’t expect it though.” i expressed my concerns, told her i’d been feeling better. i didn’t want to find out what would happen if i ran out. she assured me that if she could help, she would.

in the end, my lyme doc’s colleagues did not help me. three times i was told that the prescription would be called in, but each call i made to the pharmacy to find out if they’d received the script proved otherwise. i needed a back-up plan, so i called my primary care doctor. he returned my call at 9 pm on friday night.

“you want what?” he laughed into the phone. “in all my years of practice, i have never heard of someone taking azithromycin for this long.”

“i know it’s a bit unconventional, but my doctor is specifically trained in treating tick-born illnesses. i don’t need much. just a few pills or a z-pack to get me through until i see her on wednesday.”

“do you feel better?” he asked.

“i feel better than i have felt in thirteen years,” i said.

he laughed and asked me if i was serious.

“absolutely,” i told him. he agreed to call in a z-pack.

a few minutes later, his receptionist phoned me and said that they had tried to call it in but the pharmacy had closed at 9 o’clock. i should call the pharmacy in the morning and if they hadn’t received the order, call my primary on his cell phone to remind him.

i spent the better part of saturday on the phone, halfway to panic, trying to get someone, anyone to get me this prescription. it was, perhaps, one of the more frustrating tasks i’ve been set to in a long time. one person i spoke with told me that we had a bad connection, she couldn’t hear me. i was pulled over on the side of the road next to a soybean field. i asked specific questions like, “can you hear anything that i’m saying to you right now?”

“yes, i can hear what you’re saying right now,” she said, “but i can’t understand you.” i hung up the phone swearing and hating on her.

if i ran out of my meds, it was only going to be for five days, but like i said in the beginning of this post, my days are better. sometimes that improvement is small, but it’s still an improvement, and no way do i want to slip backwards. the mere idea of having to sit in the car for 12 hours on my way back to new york in the kind of pain i generally experience was more than i could bear- at least not just because i ran out of my medication.

i got the script. it was a huge favor from someone and i was/am unbelievably grateful for this person. but seriously, it’s not like i was calling around trying to get some crazy controlled substance. i wasn’t asking for painkillers or benzos. i didn’t want a blind script for some dangerous or nefarious drug. i wanted a five day refill of one of the most commonly prescribed antibiotics and i exhausted all my resources before i finally got it. if you could have overheard my phone calls from thursday to saturday night, you’d have thought i was asking for an unlimited supply of fentanyl patches. god, love the system. i certainly don’t.