So, I was MIA for a while last year, and I never really explained what was going on. There were some intense health issues (even for me), and I spent way too long in the hospital after a trip to the ER I was sure would end with an Rx for an antibiotic and the instructions to follow up with my family physician. ...which I couldn't do... because I didn't have one... because I didn't have health insurance.
Anyhow, last summer I suddenly became very sick and had to make what I assumed would be a quick visit to the ER. I had been running errands all day, and with each successive stop, the foot that had been hurting me and did indeed look slightly swollen when I'd left home that morning was looking to be about 2 times its normal size, was a nice deep shade of plum with white spots, and seemed to be one giant pulse point. No, I hadn't sprained my foot. I also had a fever of 103 degrees, nausea, and dizziness. I spent several hours turning down optional pain medications and wishing I could sprawl out on the hospital bed (but knowing I couldn't because I have those obnoxious allergies to things like unfamiliar fabrics, dyes, and detergents), alone. Good times.
I had been taking daily hour-long walks around the neighborhood all spring and summer with my beautiful Dachshund (Alter Ego) to try and do the whole exercise thing, and, despite consistently wearing soft, clean, cushy white socks and orthopedic sneakers, I'd developed a nasty and unrelenting callus on the bottom of my big toe. I used the pumice stone on it daily, and also applied scrub on a regular basis, but it was stubborn. And then, one day, I was walking around barefoot inside, as one does during 94 degree weather, and the edge of the callus got caught on the edge of the little metal strip designed to cover the flooring seam betwixt the kitchen and the living room, and I had enough momentum that I pitched forward, ripping the entire thing off in one fell swoop. There wasn't even any bleeding or anything. I kind of shrugged, picked up the callus and examined it (partially out of curiosity, and partially because Alter Ego looked at it a little too interestedly, as if to say, "You gonna eat that?"), and then I went into the bathroom to check out my foot, where new, soft, normal-looking skin on the bottom of my big toe was newly exposed. I cleaned it with peroxide just to be safe, and then went on about my life.
That's when bad things started to happen.
(Or, as I found out later, they'd already been happening for some time, but that's when I became cognizant of the war going on within my body.) My foot appeared a little more swollen and tender each day. It took on kind of a pinkish-reddish hue, with the darkest parts concentrating on the area of the newly un-callused toe. Much to Alter Ego's dismay, I put our daily walks on pause AND still did not allow her to eat the callus. But I did notice that she spent a lot of time sniffing my foot and staring at it. I thought she viewed it as a vending machine and was attempting to will it to dispense another one of what she suspected would be a tasty new snack.
I kept my foot clean and elevated. At the same time, I lost most of my energy and felt hot and dizzy constantly, but I wrote off those symptoms as having been caused by the summer heat and the apartment's woeful lack of sufficient air conditioning. A sore started to develop where the callus had been, and I covered it with antibiotic ointment and a band aid, changing my sock frequently to make sure things stayed clean and dry. I also cleaned it with alcohol and peroxide a few times a day, but it was angry and persistent, and after a few days, not only was it not showing any signs of healing, it began to emit a foul odor that I immediately identified as a smell something everyone else with a faulty immune system will both recognize and dread: infection. I did my best to keep it under control by continuing with the bandaging/cleaning efforts and staying off of it as much as possible. I planned to visit an urgent care clinic with money I didn't have and couldn't afford to lose, but would be able to afford in the next few weeks. I was just trying to hang on.
But, as I waited alone in the ER for what ended up being a total of 6 hours, with many different medical professionals coming in and examining me and running tests and asking questions, I began to realize that I never would've been able to hold on for the ensuing three weeks, and that something much bigger than an infected foot was happening here. I was hooked up to an IV of fluids, and offered Morphine, which I declined because 1) I have a very high pain tolerance, and 2) I still thought I was going home sometime that evening and I didn't want to be too drugged for when that time came. Alas, my body, as it does all too often, had other plans.
My Mom was out of town visiting family at the time, and I called and left her a very calm cell phone message to the effect of, "I'm in the ER and I think I have an infection, but I'm just going to try and get a prescription for an antibiotic and then get out of here. I'm fine. Don't freak out. I might need a loan to pay for the prescription, though. Love you. Bye."
After a blood sugar check (900: the highest the ER blood glucose monitor would measure, and this was about 7 hours after I had last eaten), and an Hemoglobin A1-C test (23), (neither of which they told me they were doing) I was told thusly: Grab your stuff, you're being admitted. You are Diabetic and that's why your foot is infected. We're going to pump you full of antibiotics and insulin so you have a chance to keep your life and also maybe your foot.
To say that I "had some questions" would be understating things, but I had some questions. Most of them went unanswered for unacceptable amounts of time. Some are still unanswered. I immediately responded with, "Uhhh, what do you mean MAYBE I can keep my foot?" and also "I'm confused. I thought you couldn't become Diabetic all of a sudden as an adult." Doctors: That's correct. This has been going on for years. You've had high blood sugar which has been damaging your body for quite some time. Me: How do you know? Doctors: Because nobody has an A1-C number that high out of nowhere. Me: But I get my free birth control at a clinic for low-income women where I have to come back every 3 months for tests including a pregnancy check, STD tests, and a Diabetes screening in order to get more pills. I've been doing this since 2011 (this was 2014), and I've always been told my results were normal. Doctors: Huh. Could you fill out this form so we can talk to them?
Over the course of my inpatient stay at that hospital, we found out some interesting things: 1) I had suddenly become a brittle Type-1 Diabetic in less than 3 months, 2) They suspected this was probably because of Lupus, as was evidenced by my having experienced 12/14 of the symptoms on the Lupus symptom checklist and having a positive ANA protein test result, 3) I had some allergies to different types of insulin, which resulted in anaphylactic reactions, yes, several, because we had to keep trying new types of insulin despite the previous allergic reactions because we had to get my blood sugar and therefore infection under control somehow, so their solution was to pump me full of hospital-strength antihistamine all.the.time. and then wonder why I was never awake for meals or tests or anything they wanted me to do 4) If a nurse loads you up with insulin for the first time because your blood sugar is 900 and you have a raging infection in your foot, and then the hospital food service workers don't deliver your meal because they decide that the form on which you have listed all of your food allergies means they can't feed you, things will get dicey, 5) Moms tend to cut their trips short no matter how much you tell them over the phone, "It's okay. I'm fine. It doesn't even hurt. My pancreas is just pissed off at having become a snack for the rest of my body. Stay and enjoy your trip." 6) Watching House whilst checked into a hospital for what are ostensibly Lupus complications is especially disconcerting because Hugh Laurie always says it is never Lupus. 7) There are never enough books.
So, yeah, after staying in the hospital waaaay too long and finally getting discharged with a bill that was more than my income for the past year times about three and no health insurance, and adorable new twin diagnoses of Lupus and brittle Type-1 Diabetes, which is insulin-dependent, I needed to seek some intensive health care despite not having the means to do so. This meant that, for the next 13 months until I was able to get insurance, I spent untold hours each week sitting in the basement of a local Catholic church waiting to be seen at a free clinic for indigent Hispanic people needing health care they couldn't seek within "the system" because they were mostly undocumented and afraid of being deported and also unable to afford even basic care. Despite my being whiter than mayonnaise on pizza (yes, Pizza Hut has committed that atrocity), looking substantially more privileged than I am, and only speaking a pathetically small amount of Spanish, the kind nurses, doctors, and other volunteers at Clinica Madre de Dio provided me with regular health exams, medical attention, prescriptions for medication I needed, free medication when samples were available, supplies to treat my new raging case of Diabetes, and--the ultimate lifesaver--free insulin even though their clinic is so ridiculously under-funded that they are in constant threat of shutting down, and they struggle to have sufficient doctor volunteers to show up and actually treat the patients. So, thanks to them, I wouldn't have to choose between grocery shopping and paying rent vs. staying alive long enough to eat the food and live in the apartment.
If you're a long-time reader of the blog, or if you know me IRL, a quick inventory will remind you that I now have life-threatening severe allergies (since age 5) and the accompanying allergy-related asthma, migraines that regularly disturb my vision or completely obliterate it on a frequent basis (since age 12), chronic ear infections/sinus infections, and a generally craptastic immune system (since 6 days old), and now Lupus and brittle Type-1 Diabetes. But, yeah, I'm ineligible for disability. The day I was born, there was some panic because I had wrapped the umbilical cord around my neck and it was knotted there. I feel my instincts were spot-on with the choice to hang myself. Obviously, I knew in that moment what I would be getting myself into, had I proceeded with my journey out into the world. Unfortunately for me, the attending physician was more of an optimist, and didn't realize that a child who would eventually be allergic to most flowers and unable to eat candy due to Diabetes was about to be born on Valentine's Day.
Also, I abhor pink.
Photo by Nerdcon: Stories, not by Meg.
Despite all that, or maybe because of it, I was rapt.
Puff levels were high, but they didn't hold my attention, because John Green's speech dove rather immediately into an area to which I could relate all too well: using books to escape the reality of your body. "I am stuck inside this body," John Green said. "You likely have a similar problem."
Okay, pause reading, and click here to see the video of this speech, because it is awesome, and if you don't, you are totally missing out.
And, though I was seated in the front row, I was relieved to be somewhat off to the stage-right side of the auditorium, because I did not want to distract people (including the illustrious speaker himself, should he be able to see any audience members despite the bright lights shining in his face) with the fat tears rolling down my cheeks as I listened to the author of some of the very books I've used to distract myself from the sinking ship upon which I'm trapped talk about his own personal struggles, and how he too uses fiction to escape his body.
Just as a sidenote: I do not cry in public.
I really wanted to approach him at some point after that and say how much that speech meant to me, and how much him showing up despite the challenges going on in his own body and his constant willingness to be so vulnerable mean to me, and how I identified with what he said more than possibly anything anybody has ever said, and, just, thank you, because when you hurt all the time, and you're pretty sure nobody can fix it or even understand, it's easy to forget to be awesome. Lately, it has been a struggle just to BE. And also when he said something in a recent vlogbrothers video about the new book he's working on, which has to do with what it means to be a person, I just sat there thinking that, really, am I even a person? I sure don't feel like one much of the time. I can't drive. I can't be alone. I probably can't procreate. I can't obtain adequate medical care. I can't participate in a conference for an entire day. I can't fast and pray all day on Yom Kippur. I can't make promises, because I don't know if my body will let me keep them. I can't have a job, so I can't support myself financially. I can't do the things humans do, so it feels like I'm not one of them.
...but I also wanted to give him his space because I suspected that coming to a conference full of your fans when you're in that fragile a mental place was difficult enough, and I didn't want to come across as a fangirl with no personal boundaries who thinks of famous authors as public property.
And maybe he would've appreciated the affirmation, or maybe I would've been just another person who was trying to take another piece of John Green when he had far too little left to give.
So, I refrained, because I too have far too little left to give, so I get it.
I wish I didn't, and I wish he didn't either, but it's comforting that he does.
~Meg
