I’m home sick—”normal” sick. I have plump yellow and green stuff building up, breaking up, and making its way out. The “normal- sick” sensation remains one to rejoice over. I didn’t experience this for a couple of years—something about Lyme making it impossible for my immune system to work enough to fight common infection—I don’t get it. But what I DO get is that yellow stuff equals normal infection and that’s the kinda thing I’m after. So, hooray, right? Well, not quite.
A couple of weeks ago, I received an emergency phone call from my immunologist. I’m on Medi-cal. For the most part, Medi-cal doctors do not emergency- phone- call me—I’m lucky if they know who I am, can find my files, or call me back after I leave a 911 message. It’s been one of the most frustrating things about being sick: bad doctors, poor treatment. But as the most unpleasant of pleasant surprises, a couple of weeks ago, I got two emergency phone calls, one after the other, “Jacqueline, we need you to come in first thing in the morning to review your recent blood work and get the process started for the IVIG.It’s very important we get going.” I know what my numbers are (I’ve been following them closely and consistently telling the doctor that I need to get started on the IVIG) but still the phone call scared me. It must be bad if the doctor is going out of his way to call, I thought.
Ian took off of work and came with me to the appointment. He was immediately kicked out of the consultation room due to HIPAA laws. It was all a new experience. No one has ever been kicked out of a consultation with me before, and I have had many friends come to appointments with me. Ian was sent away because he is not my “husband.” Of course, I immediately perked up, wondering, “Hmmm will this make him propose?” I can’t help it. But the doctor pulled me out of that fantasy with all of the scary annoying information that I’m constantly being dealt.
ME: “Can we wait for Ian so that he can absorb all of this information you’re giving me? That’s why he’s with me.”
Doctor: “How much schooling do you have? Are you educated?”
Me: “excuse me?”
Doctor: “Did you go to school? Can you absorb information?”
Me: “I went to school. Some college. And longer training in my field.”
Doctor: “Ok so you don’t need Ian to absorb this information. You’re smart enough.”
What a dick.
He had on one of the most blatant toupees I’ve ever seen. I wanted to rip it off his head and do mean things with it. Him and his stupid toupee.
Ian signed some paperwork and made it back in time just to hear one last thing. The old toupee’d doctor shook Ian’s hand and said, “Just make sure she doesn’t get sick. Because if she gets sick, what we are worried about is that her immune system can’t fight infection so she could get pneumonia and die. You two have a good day.”
You’d think that they would have rushed to get my IVIG figured out considering the threat of death they kicked us out the door with but no: They still haven’t even submitted my file to the infusion company. COOL.
So, while I’m slightly rejoicing over the magical feeling of ‘normal’ illness, I have a little voice—no a giant voice—shouting “don’t get sick. Too late. DEATH awaits.”
Also on a much less dark/devastating note, I am bored as fuck. I am bored, slightly depressed, and lonely and wondering how in the ever-loving fuck I did this for two years!? I stayed in bed, at home, walking from the kitchen to bed to the bathroom for two years. It’s been 24 hours and I feel like a lunatic.
I’m amazed by what we can tolerate as humans when we have no other choice.
February 13th was my first day off in a while. It wasn’t even a day off. It was just the morning and afternoon that I had off. Another miracle! I used to have everyday at home and now it’s so sparse that I sometimes crave days to stay at home. In fact, the truth is that on February 13th, I had to cancel plans to stay home so I could pee into a bottle for six hours in “Peece.”
Let me explain: I have this new amazing doctor in New York (that my mother generously paid for) and he suggested/ordered a heavy metal pee test. That’s not what he called it. He used more pro lingo like “urine sample.” I was grateful for the test. It’s the first time in my illness that I feel ready to deal with whether or not I have heavy metal toxicity. Yes, I got my amalgams removed, and took ALA, and ate lots of cilantro, and took loads of charcoal and detoxed like a mofo so it’s not like I wasn’t already taking some actions, but, all of this time, I didn’t have the emotional or physical capacity to find out IF I was actually toxic—I was in NO position to chelate so it didn’t seem constructive to find out IF I was toxic. But now I’m ready.
I received the kit. It was a cardboard box equipped with a giant plastic bottle, a plastic cup for you to pee in and then transfer to the bottle, and then a small test-tube vial to eventually send off. You also have to keep your cherished pee in the fridge all day as you add more and more. YUM. I have a slight— or maybe major— obsession with my pee. It’s like a competition I have with myself everyday: How clear can I urinate today? How hydrated am I? Am I acidic or alkaline? It may seem ridiculous but these are the things that get me through. I was uncannily excited about seeing what a giant jug of a day’s pee would look like, and, I’m here to tell you, it looked FAB. A slight yellow tint but otherwise just hydrated perfection.
I NEEDED to show Ian and my roommate. I needed to brag about my ph levels and my pretty piss. Ian got grossed out and I got mad at him. We often fight about things like this. I think it’s OK to pee in the shower; he thinks it’s disgusting. I think it would be fun to cross streams in the shower; he thinks it’s disgusting. I think it’s hilarious to pee on or near each other when we’re in the ocean; he, again, thinks it’s disgusting. OK, fine. We agree to disagree.
But it only seemed fitting that for Valentine’s day, I would need his help dealing with my urine specimen. I wasn’t going to be home to hand over my specimen to the FedEx guy so he needed to do it. What a man: he rushed home from work and the handoff was successful. That was, for sure, the sweetest thing he did for me on Valentine’s day: passed my beautiful urine to a total stranger.
On the topic of romance, last week Ian and I had a terrifyingly vulnerable “chat”—maybe it’s classified as a fight? But we don’t really fight. He talks, I talk, I cry, we hug, we have sex. We weren’t exactly disagreeing or raising voices—is that what classifies a fight? I don’t know. I grew up with very real fighting so maybe I’m nt the best to ask.
Regardless, near the end of this “talk,” I was scrunched up, sweating, and nauseous and he was standing against a door frame. He said, “I guess all I really want is for you to be happy. I just want you to be happy. Sick or not.”
QUIET. TEARS. SWEAT.
He thinks I’m unhappy? Am I unhappy? After we made up and moved on, I had to do some investigating. No one has ever looked through me like that and accused me of being an “unhappy” person. I’m smiley, and sparkly, and joyful and also…moody. That night, I thought (and haven’t stopped thinking), what is happiness? Happiness is short- term. It’s a state of mind that comes and goes. I don’t even want to walk around happy all of the time: How boring, how false, how inauthentic. Still, it was painful to finally admit to myself: I am not happy; I am hopeful. The last three years of illness have taken a toll on me. I have, truth be told, been more sad than happy. But I certainly don’t need to berate myself for this—I have compassion for myself, AND I’m ready to outgrow some of what has held me down. But still, the more I thought about it, happiness is not the end goal. Too much pressure. I know enough now to know that I have no idea what life has in store for me—there will be joyous times and shit times. I think being “happy” is a bullshit blanket statement. I almost wanted to take that word right out of my vocabulary. I was so mad at it. I wonder how many people feel pressured to be happy? It’s not what I want.
I want PEACE. I want an inner peace so sturdy that it can hold the joy and the sadness—the ups and downs. What a freedom to not be striving for happiness. It lands me right in the present moment. Peace. When do I feel most peaceful? When I am most connected to something bigger than me. When I am helping others. When I am present. HERE, doing the next right thing. Whether that’s peeing in a bottle, drinking lemon cayenne water to bust my mucous, watching Schitt’s Creek, getting on the stage to perform, writing, having sex, talking to friends, and the list goes on. Peace is possible. I’m excited to have something new to strive for everyday. I feel free.
Other things I wrote/ am offering this week:
with fun and love and peece,