So it’s been a few weeks now since that whole “Parkinsonism” snaffoo (which I cannot technically refer to as a snaffoo because that would infer that it was all a total mix up and that hasn’t been established yet and the drugs are actually rather helpful but it just makes it easier for me to call it that and put it in air bunnies because there is a certain detachment from it when I do that which I need to cope holy crap run on parenthetical sentence). So you’ve probably gathered from that train wreck of an opening sentence that in those few weeks I have not fully accepted what the neurologist had to say to me.

I feel that instead of focusing on acceptance and all that zen crap I am irrationally bundling up all of my hatred for whatever disease I have and all of my frustrations towards having this unnamed disease into a perfectly personified thing and that thing is the doctor. But don’t just think it’s from this one appointment. Oh no, this story began many years ago.

It all started five or six or seven years ago. Probably six. I had a pain in my eye that was excruciating that was paired rather complimentarily with an intense feeling of pins and needles in my arms and legs. This brought me to a medical clinic where I was rushed in to see the head doctor (not head as in brain and face, head as in The Man in Charge). Let’s call this doctor Dr. F. Dr. F. proceeded to shine a very bright light into my pupils and then gasped at my pupillary response. “What could this be?!” demanded Dr. F.

Dr. F. quickly ran into the hall to fetch the resident medical student. Dr. F. just HAD to show this med student what my eyes did because he hadn’t seen it before.
“Oh, good,” I thought, “that puts me at ease.” I asked what IT was that he had not seen. But Dr. F. was too busy showing Med Student my pupillary response to light to answer me. Tumour, I thought. Some sort of eye tumour. DEATH IS UPON ME! 

All Dr. F. could tell me was that my left pupil reacted the complete opposite way than the right pupil when he put that bright light towards it.
He rushed me off to the opthamologist down the road to get it checked further.
I was shaking in my booties when I showed up at this eye doctor clinic and saw a bunch of blind people. I’m not actually afraid of blind people, if that’s what I somehow seemed to imply. I was just afraid of going blind. I had enough trouble adjusting to twenty-something-hood with full vision let alone attempting it blind.

I was sent through a battery of tests that involved me pressing buttons when I saw red dots and other things I can’t remember. I just remember it taking a really long time and I had walked past a Tim Hortons to get to the clinic so all I could think about the whole time was that this was the only thing standing between me and a Honey Dip donut.

I don’t know if I passed the tests, but the person administering them kept saying things like “Interesting…hmmm…” and then gave me a condescending pat of reassurance on the back when I was done. I DON’T NEED YOUR PITY PAT, THANK YOU! I thought. I said, however, “thank you very much have a nice day I like your fingernails they are a very interesting colour.”

After the tests I made it to the final round. I felt like I was in some sort of Optic Olympics. That final round ended in a chair in an office that was empty save for a vision chart on the far wall and a few tools. The doctor came in without saying hello, walked up to me, dropped a few eye drops into my eyes, heard his phone ring, picked it up, discussed when tee time would be tomorrow with a friend, left the room and closed the door behind him.

“Good afternoon to you too,” I sneered.

I patiently waited a few moments for his return. I impatiently waited another few moments. When it seemed he had been gone an excessive amount of time I got bored and reached into my pocket for my cell phone to text Best Friend and tell her of my new found medical crisis. When I looked at my phone to construct that text message I realized that I could not see anything on it. I could see that it was a phone, barely, but the screen was blank. I could not make out letters.

HOLY CRAP WHAT IS HAPPENING?! I thought. I blinked a few times and then looked down at the phone again. Still nothing. THE TUMOUR HAS PROGRESSED SO QUICKLY! I thought. More blinking. More nothing. More panic.

It got to a point where I realized that if I held the phone very far away from me I could make out words so I did that long enough to text Best Friend something akin to “AT EYE DOCTOR. HE HAS BLINDED ME. I AM SUING!”

After sending that text, and receiving a response along the lines of “baby I’m sure you aren’t blind,” I noticed the vision test poster on the far wall. I was not wearing my glasses at this time and realized I could see everything on that poster, down to the minuscule letters on the very last line, perfectly.

But still when I looked at phone I saw nothing.

I was about to have a full blown panic attack. My brain could not wrap itself around what was happening to my eyes. Right before that panic attack came out in full swing the doctor opened the doors again (let me emphasize now that this was between 25 and 30 minutes after he left me) and he walked towards me.

“Having trouble seeing yet?” he casually asked me.
“YES I AM. YOU KNEW ABOUT THIS?” I asked. I felt like I was being Punk’d, because Punk’d was still a thing back then.
“Yes, that is what the eye drops did. They enlarged your pupils so I can see inside them.”
“Oh. Thanks for the heads up.”

We decided then and there that we did not like each other and we did not try to fake nice to each other. He looked into my eye, he said “Inconclusive,” and told me to leave.
As I fumbled towards the door, barely able to see, he called out to me “I hope you have someone waiting to pick you up and I hope you brought sunglasses.”

Thanks for the heads up, Dr. F. No, I did not in fact have any of those things. So I took out my phone of Nothingness again and held it comedically far from my face and found my cousin’s number in it. She was my roommate just a block away at the time.

“Cousin. I had a weird eye thing. They put weird eye things in my eye that make it hard to see. Can you come get me and bring some sunglasses?”
“I don’t have a car,” said cousin, confused.
“I need you to walk me home. Like I’m a dog,” I responded.

So I somehow managed to find my way down 3 flights of stairs outside of the clinic. I can only imagine what it must have looked like to passersby. I am sure I resembled a gazelle. But screw them, I did it and there before me was the light at the end of the tunnel, Tim Hortons. My cousin showed up just as I made it to Tim Hortons and she stared long and hard at me.

“You look like one of those demons on Supernatural,” she laughed, and then took a picture of me. Exploiting me when I’m down. And that’s why I like her.

So she put some shades on me to keep me from scaring small children or perhaps to keep the Supernatural fangirls from dousing me in holy water, bought me a box of donuts from Tim Hortons, and walked me home like I was a pet. I then ate enough donuts to feed a medium sized family, but anytime I started to feel gross or ashamed I thought “oh well, I might have an eye tumour, I will eat as many donuts as I see fit.” Apparently that number can be quantified and that number is 6.

The next day I returned to Dr. F. because I was very curious as to what I was “inconclusive” for. Was it inconclusive whether or not I had an incurable eye tumour? He told me no, silly, he was testing me for optic neuritis. What is that? I asked. He told me, and I didn’t understand any of it but I nodded politely. He said “You probably have MS. It’s okay, lots of students here have it. It’s manageable. Here’s some info on it.” And then he got up and opened the door giving me my cue to leave.

So all of this lead me to my neurologist for the first time. She looked over my chart, asked me a few brief questions, did the bright ass light into my eye thing and then said “you just have migraines goodbye.” Angry Birds was the popular game of the time so I assume she dismissed me so quickly so she could play Angry Birds back then.

Migraines eh?

Fast forward to five or six, probably six, years later (I feel rather perturbed by the fact that I can’t remember the exact date that this significant situation occurred on but there it is) and there I am, back in her office sitting on a hospital bed. This time she looks over my chart, stares up at me and says “Wow, you’ve really gone down hill since the last time I saw you.”

Joidjgaokmeoigjeaiogjvoieaklngvokaenvoiejgofijeaoijfioadnvoa;ehgfoieajf. For those of you unaware, that is how people convey frustration over the internet.

It took everything out of me, when she told me it was probably some form of parkinsonism, not to respond with “Some migraine, eh?”

But instead I was nice and smiled and didn’t even punch anyone, not even a little bit.

I took the moral high ground and now when I’m up late and mad about some nonsense related to my health I do things like write posts like this which is kind of like my way of punching doctors but with words. And by punching doctors with words I’m really punching MS or something with words. Geez, I’m so deep.

Disclaimer: No doctors were hurt in the making of this post. I don’t actually punch people. Mostly because it would be too physically demanding. But also because I don’t care for real life violence. Unless it’s a fight in a hockey game. I like those. Also I think some doctors are kinda cool and I don’t want to punch them. And yeah sure I understand how hard it can be to diagnose certain chronic illnesses because symptoms are so similar for certain things and blah blah blah but you just don’t care about those facts when you’re going through something like that.

3 Comments on Waiting for a diagnosis is frustrating!

  1. The Hook
    January 29, 2014 at 3:09 pm (4 years ago)

    On the bright side, I bet you were the best looking demon in Supernatural history…
    Humor is my fallback. Sorry.

    • lisermarie2013
      January 30, 2014 at 3:17 am (4 years ago)

      Ha…most demons on Supernatural are hot shit.

  2. Carly
    February 21, 2015 at 7:52 pm (3 years ago)

    Hi, I discovered your blog through hellogiggles and can totally relate! I have been sick since the day I was born but it took 14 years for me to be diagnosed with fibromyalgia and chronic fatigue, 21 to be diagnosed with general dysautonomia and inappropriate sinus tachycardia (rapid heart rate), and almost 25 to be diagnosed with a rare (in the US) form of autoimmune vasculitis called Behcet’s which is essentially like having Lupus, Arthritis, Crohn’s, and MS (to varying degrees) all at once. I celebrated each diagnosis, many of which I didn’t include above, because it meant I wasn’t crazy, faking it, or a hypochondriac. Now I’m just frustrated because I know what is wrong with me yet my body isn’t responding to medication, and most medicines I have tried have made me worse. This whole being chronically ill thing can be a huge pain but I’ve never been “healthy” so I don’t really know the difference. I hope you can eventually figure out what you have but just be warned that the frustrations don’t end with a diagnosis. Oh and you might want to look into behcet’s since it is super hard to diagnose and is often misdiagnosed as lupus, MS, and crohn’s plus neuro behcet’s can cause some parkinson’s like issues, but be warned the images of skin and other ulcers (not everyone gets them despite what the internet says) can be super graphic and unsettling.


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