A couple months ago, I wrote my first article about how I use humor as a coping mechanism for having chronic illnesses. At the end of the article I said,

"There are times, unfortunately, when I can't laugh it off. When my body hurts too much, when the doctors don't know enough. I can't always make a quip or a pun that makes people believe that I am okay when I'm not."

This is one of the times when I can't laugh about it. I'm too tired to tell myself everything is fine. Getting strenuous medical tests with no answers...again. It's so frustrating that all they can tell me is "I don't know." I am, quite literally, sick and tired of being sick and tired.

Let me explain the latest round of testing. I have had horrendous nausea nearly every morning for over a year. It starts almost as soon as I wake up and can last until I go to bed. There's no correlation to show if it's related to what I'm eating or not eating, it isn't related to anxiety as it started before situations of last year. It isn't even every single day but it is often enough that it is a problem. As well as rib pain that I have had on and off for years but the severity of the pain increased this year for no reason! Just no idea what's going on. Hence, a new doctor to add to the list and medical tests!

So, the doctor had me come in for a CAT scan, which I've had three times now. I figured it wouldn't be too bad.

I was wrong.

Just my luck, I woke up the morning of the CAT scan extremely nauseous. I nearly passed out on the way to the appointment. Plus the roads were very rough and winding from my house to the appointment. Additionally, unlike previous CAT scans, I had to drink two bottles (about the size of a water bottle) of contrast. Sure I was able to choose my own flavor (vanilla) but when you're feeling like you'll throw up at any moment, drinking something that at best can be described as a slightly watery milkshake with a burn like alcohol is NOT the best thing to do. The nurses felt so bad they said they'd be fine if I managed to get down one bottle.

Of course, why have one medical test when you can have more!

The endoscopy was actually one of the easiest procedures I've ever had. (Yeah, I have had enough procedures to be able to compare their difficulties, yay.) They put me under anesthesia before sticking a tube down my throat so I figured it'd be a nice nap and then go about my day.

Again...wrong.

First, I woke up nauseous again. Not quite with the same intensity as on the day of the CAT scan but enough that I had to blast music in order to distract myself from the feeling. Again, having to traverse the same rough roads to get to the appointment (someone really should've planned those better).

Then, they nearly forced me into an undesired pregnancy test until I made it quite clear it'd be a miracle if I'd gotten pregnant. So, they offered to give me a waiver to sign instead which CLEARLY said I could refuse to take a pregnancy test. There had been no mention of this waiver until I explained just how impossible it'd be for me to be pregnant. I get that they're just trying to do their jobs but seriously?

As I had thought, the procedure was still pretty easy because I was unconscious for the important part. Unfortunately, I ended up groggy and tired for (at the time of writing this) two days after the procedure. Once the IV and blood pressure cuff were removed, I discovered that my wrist and arm were fairly bruised by the devices. My body is a painful hot mess most days and now unnecessary bruises? Joy.

To top it off, want to know what both procedures showed? Absolutely, nothing that would cause nausea or abdomen pain. There were some abnormalities (like a condition he said usually occurs in people 50 year old or greater, not in people in their twenties) but they were not things to worry about apparently. That doctor thinks it's a muscular issue and I should talk to my neurologist or my rheumatologist (a word that spell check doesn't recognize but I have one) about it. So more appointments need to be made in the future.

Post-endoscopy picture because other people have my ER pictures.

I don't even know why I go to these appointments expecting anything different. I've had blood drawn for tests so much that I have a vein too scarred to be used anymore. The doctors have induced muscle episodes (exceedingly painful muscle contractions that can last between fifteen minutes and six hours) by having me tighten and release muscles quickly because until they see it, they don't believe me. Doctors will then repeat tests such as the EMG (here's a description of it, TW: needles) which have been painful and inconclusive every time. I am blessed to have had very few doctors tell me it's just in my head (few...and that's just doctors). But when I was seventeen, the best diagnosis I was given was

"We don't know what it is, but we don't think it's going to kill you yet."

Great! That gives me so much hope for the future! (The sarcasm is strong with this one.)

I have had "friends" who think I'm lying or over-exaggerating when I try to explain what my body does. Even if they do believe me they've mocked my conditions to my face (not friendly teasing, I don't mind that). At public eating establishments, a "friend" would take salt out of my hands and say, quite condescendingly, "That's enough for you!" as if I were a small child. Yes, having too much salt is a contributing factor to my muscle condition but I need more salt than most people or else I have severe dizzy spells (it's a fun thing to figure out a balance for). This "friend" even got upset with me when I finally got mad after telling this person multiple times to stop doing it.

As a college graduate, I want to get a job and work towards paying off student loans even though my parents are helping but I can't apply to jobs with much physical labor or anywhere near foods. I thought I could handle a part-time retail position but even with just working one four-hour shift a week, I would have severe muscle cramping. My parents had to be ready with at least four Advil and a bottle of water when they picked me up after a shift. Then, I'd need at least two days to recover. My parents finally told me I needed to quit because it was destroying me. Reluctantly, I did and the other workers actually really tried to put me on light work for my remaining shifts after I explained why I needed to leave. Unfortunately, even light work still made my body go haywire but I truly appreciated that they tried.

As I explained in a Twitter rant around the time I left that job, "I wish it wasn't looked down upon for someone with a chronic disorder to talk about how they feel." Because it's so true! If you have conditions like mine, you either talk about it like you're the strongest person on the planet or you should say nothing. "Things could be worse." Yeah, but things really suck right now too and they really won't stop sucking. There's no miracle cure for just about any chronic illnesses (mental and physical alike) yet. No medications, no amount of "good attitude". I can't just put on a happy face and make my muscles stop locking up at a light breeze. It doesn't work like that.

So screw not talking about it. It hasn't done much good to anyone! I'm not saying you should obsess over it or let your conditions have more control than they already do. But explain to people what life is like for you, dealing with whatever it is you've got going on. Have a soothing rant on social media about what's been making your life difficult. Find people who have similar stories and talk about it. My cousin and I have similar conditions and we have chats about how we want someone to fix us or ER stories. It doesn't make either of us less sick but it does make us genuinely happier rather than slapping on a smile and telling ourselves the mantra of "it could be worse". Find connections like that.

I am exhausted and frustrated by all of this. I just want to have a body that doesn't try to mess up everything I want to do. Exercise like people are supposed to? Forget it! If you managed to dance for more than ten minutes at a time, trying to do more physical stuff is just being greedy! Trying to wash dishes? Hahahaha! You've got about twenty minutes tops before some part of your body starts to feel like it's being twisted or stabbed. Go!

Want to see friends? Wild card time! Let's see what a migraine mixed with needing Benadryl for that cinnamon allergy does...hallucinations! How about an allergic reaction and a muscle episode? Ahhhhh paramedics that won't listen to you or three other people and lead to you overdosing on antihistamines the day before classes! Valentine's Day? Well, how about a muscle episode and the triage nurse tries to accuse your godsend of a roommate of abuse ("Is there someone hurting you? That you can't talk about?" Staring at one of my favorite humans to imply who she thinks it is.) even though there's quite a bit of documentation that you have a muscle condition. (Yes, those situations all occurred...second semester of sophomore year was a fun time. Bless Kris.)

Can you see why I am pretty miffed?

I know I'm not the only person who feels like this but that's really hard to remember that when the president-elect has been known to mock people with disabilities. It's hard to remember that when there's very few shows showing people with disabilities who actually have disabilities (both looking and not looking at you Glee) and even the ones that do exist get things wrong (see this post by marauders4evr about Speechless...and look at several other ones while you're at it about disability advocacy). It's extremely hard to remember that when I have to force myself out of bed and struggle to sit upright most days because I'm in pain somewhere and/or nauseous and/or dizzy. When i have to go to my therapist about anxiety and go to several doctors trying to prove that the anxiety has nothing to do with what my body is doing. When I have to explain myself to my friends and family that between the anxiety and my body's bad days I don't know what to do besides smile while I hide my shaky hands and winces of pain. Because, like I said in the Twitter rant, "I don't know how to be okay with not being okay."

So, please, if you have a condition, talk. And if you don't, listen.