Okay, so when I went to the doctor least week I expressed concern that my lungs weren’t lung-ing the way they should. (I’ve officially decided lung-ing needs to be a term.) I know I talked about the doctor saying my lungs were constricted, with the right side definitely having a harder time than the left. I left confident that my issue was simply inflammation, and I wasn’t catching my guy’s (note: this is how I’m choosing to refer to him, for now…the term is definitely going to to change because we’re casual, so the references will be too) cold.
Now, here’s the thing about having a chronic illness…you’re always sick. Seriously. I will never wake up and not have Bechcet’s. My dad is never going to wake up and not have Lupus. We may going into remission from time to time, but when you have a chronic illness, it’s *shocker* chronic. I have accepted this fact, but it’s made acknowledging when I’m actually sick (like normally people sick) difficult.
I spent Monday night at the guy’s place, after getting a new inhaler and thinking my problems were solved, but woke up on Tuesday with a brutal sore throat. I called my doctor, and he felt it was probably thrush, or the start of thrush, because I wasn’t rinsing and spitting after using the new inhaler. Fair enough. He says to call him on Wednesday if things get worse. Well, Tuesday evening I have to go to a mandatory meeting at work. The meeting was pointless for me, because none of my concerns were addressed. I’m pretty I sure they’re working on a way to fire me, and I just hope they don’t make me come into the office to be fired. I work from home, an email would suffice. “But they can’t fire you for being sick!” Theoretically that’s true, but anyone with a tendency to get sick, a lot, knows that employers find other legal ways to let you go when your illness becomes a burden.
In any event, I started coughing so hard before the meeting, there was blood. Yeah…tell me I’m not dedicated to my job when I show up wearing a mask, coughing up blood, and then go totally ignored when it comes time for suggestions.
Wednesday I call my doctor’s office as soon as I get up. I can’t breathe. The pain in my right lung that was in the lower portion, is now the entire lung, and I know I have bronchitis. This is how it goes with me. I have a day where I think maybe I’m getting a cold, but then bam, it’s in the lungs, and it sticks. I haven’t had just a cold in years, but bronchitis? This is my second bout this year alone. I show up for my 2:15 appointment, and I am winded. I’ve been hyperventilating pretty much all day because I can’t take a deep breath. Walking to and from my car is exhausting. My oxygen saturation is good, which isn’t shocking, because I’m doing my best to breathe however I can. I woke up that morning with purple nails, and I’m trying not to get back to that place.
Problem 1: my doctor is terrified of me. He’s a nice man, a good doctor, but I think having an immunocompromised patient terrifies him. Most of his patients seem to be rich older residents of the fancy community where I live, with a couple younger patients thrown in. Rare autoimmune condition patients? Not his strong suit. His medical students love me, but everyone seems to be fascinated and scared all at once. He is worried because of the Humira, that I may actually have pneumonia, despite the vaccine, or that I’ve partially collapsed the lung, or even have a tension pneumothorax. Basically, he’s freaking out. He wants to give me a shot of antibiotics, and order an x-ray, and the thought of having to walk to the adjacent hospital actually makes me want to scream…if I had air to scream with. He then decides he’s too scared when I tell him it’ll take me a while to get there, because I can’t go more than 10-15 steps without having to pause to breathe. This earns me a ride to the ER in a wheelchair courtesy of the medical student.
Problem 2: everyone fears you have tuberculosis. I don’t even know where I would get TB, but because I’m on Humira, and I’ve coughed up blood in the last 24 hours, and been losing weight, I am repeatedly begged to keep my mask on. Now, ER staff usually don’t worry to bad about the mask when you’ve got a cough, some do, some don’t, but I got my own room (bonus given the number of people there for GI issues).
Problem 3: I’m my best doctor. I get chest x-rays, and a liter of fluids which I begrudgingly accept since I definitely needed them. Between the time I got to my doctor’s office, and my discharge from the ER, I’d wasted over 4 hours…and I had a homework project that was due the next day, an extension I’d already been granted, but now would probably not be able to meet. Aggravated is an understatement, I was downright pissed. Worse? I didn’t want (or need) the antibiotics my doctor ordered, and I have no intension of taking the cough syrup with codeine unless it’s absolutely emergent. What I needed, and didn’t get, was a nebulizer.
I spend all day Thursday, dripping with sweat, trying to finish this project for school. I got so close, but I just couldn’t muster the strength to finish. I had the photos done, but the actual Power Point and photo log were a mess. I was shaky, feverish, nauseated, and my lungs were screaming for air. I told myself I wasn’t doing this anymore. I needed a nebulizer. I had a viral bronchitis that was working its way towards becoming pneumonia, and the only thing that was going to stop the freight train was a nebulizer. Plus the amount of oral steroids the doctors wanted me to take was asinine.
Friday morning I call my doctor and leave a message for his nurse. At this point I have to pause every 4-5 words to take a breath, because breathing has become that much harder. Granted I’d just woken up, so it was at its worst point, but I thin the message made an impact. The doctor called me back, and was shocked to hear how much worse my breathing was. While my service dog isn’t trained for respiratory illness, he was definitely unhappy with my breathing rate. He couldn’t figure out if I was having a panic attack or losing consciousness, but he was stuck to my side, and really not sleeping fully just in case.
All the pharmacies were out of nebulizers. Seriously. They either didn’t carry them, or were out. Winter illness woes. Luckily the community pharmacy was sweet, she called around and found a medical supply company who would sell me one for $40. Seriously? If I’d known they were that cheap, I’d have bought one ages ago! I rush to the supply store, mask on face, breathing terribly, and buy the machine. Then I manage to drop my rent off (five days late…oops), and get my steroids for the nebulizer. I return the steam machine I’d purchased for $50, effectively saving $10…but getting actual medical equipment. (Have a WTF moment, trust me I did.)
Get home, start to work on the project because now it’s like 5:15, and I need to turn it in. I wasn’t explicitly given another day to work on it, but I wasn’t told my time was up either. I accept that handing it yesterday instead of the day before may have cost me a letter grade, but whatever. I realize, hey, I can’t breathe, so I hook up the machine, and begin the breathing treatment.
Spoonie Moment: hooked up to your nebulizer, in pajamas soaked with essential oils, hair a mess, dark circles under your eyes, while typing furiously to finish a graduate school project, and simultaneously wondering if you should at least attempt to log in and get some work done because you’ve been MIA from your office tasks for days
Maybe I’ll get in trouble for having missed work, but you know what? I was honestly at a point where getting up to go to the bathroom was taxing. People have been calling out left and right at my job for stomach bugs and strep throat…even though I work from home, it’s possible for me to get so sick I can’t work. I also missed the start of a new class, which sucks, because that means I’m spending today and tomorrow attempting to play catch up.
Do I regret taking care of the guy, since I undoubtedly inhaled his germs, and my shitty lungs decided to cling to them? No.
Here’s the thing…
I could live life in a bubble, but I wouldn’t be living life. I take the precautions I can, with what I can. My roommate is amazing. She washes her hands the moment she gets into the apartment. I wouldn’t take care of him if he had a stomach bug, because I have a history of literally almost dying when I catch any type of GI illness. (I’m not exaggerating. For some reason I get ketoacidosis really fast, and things go downhill. I’m usually hospitalized for at least 5 days, and my kidneys and liver tend to nearly shut down.) I’m not saying if you’re my significant other I wouldn’t toss some fluids and soup your way, I’m just not hanging around the den of death to cook it for you.
I have realized I need to change a few things. For starters, the school needs to know that I have a chronic illness. My program is fast paced. One class at a time, each four weeks long, with the exception being longer classes for thesis type assignments. (Undergraduate was Capstone, graduate will be a Thesis.) I have one “F” on my undergraduate transcript that haunts me to this day, even though I graduated with a 3.34. I wanted to graduate with honors, and I didn’t. I was sick, I missed a ton of class, and when I changed programs, the unfinished coursework went to an “F” instead of an incomplete. Sometimes spoonies live in denial. We want to be as normal as possible, and we forget that it’s okay to have limitations.
Sometimes it’s hard to have an invisible illness, especially if you’ve been forced to act like you feel fine for a good portion of your life. I was raised in a family where, “You’re fine,” was uttered countless times, often when I really wasn’t fine. Plus we have so many relatives with autoimmune disorders, we tend to just pile it on ourselves and hold ourselves up to the standards of those around us, without stopping to assess our own abilities to function. I’ve watched my father nearly die because he pushed himself too hard, and I’ve had to realize that part of having an invisible illness, is recognizing when it’s time to make it visible.
The first night I spent over the guy’s place, I dumped my meds out on the table without thinking. I then had to explain that I’m not a drug addict, I have an autoimmune disorder. Being a science nerd, he asked which one, and I knew he wouldn’t know Behcet’s (rarely does anyone say they’ve heard of it) so I tell him I’ll tell him if he promises not to Google it. (The photos are terrifying.) Then I tell him if he does Google it anyhow, not to freak out, because I’m not as bad as the photos, and my symptoms are relatively in check.
Now they aren’t, and I think it’s time to do another dating with disease blog…so I’ll end this here and start another. Two for one day!