Skip to main content

Facing Uncertainty


I finally caved today.

There is so much uncertainty revolving around me at the moment that I finally just had to pack up all my stuff and do what I'm best at... find a quiet spot at the closest Starbucks and sit down and figure it all out, surrounding by people who don't know and don't care.

There's something surreal about a coffee shop on a Monday afternoon. Most people are quietly typing away on their computers. Maybe their working on a paper for their English class. Maybe their straightening out their resume. Maybe their navigating spreadsheets and decided that even though they work at home, they wanted new scenery today. Maybe their just like me.

I mean whats to say that the girl sitting next to me isn't also taking notes on section 11 of Social Security Disability Benefits. What's to say she isn't also trying to locate a billion different medical records from copious amounts of doctors who don't take as great of notes as they could.

Did you know you have to submit down to the date a record for each appointment related to your medical condition going back as far as you can find for you disability application?

I do now.

I've had so many doctors at this point, I can barely remember all of their names. I certainly don't have their addresses, phone numbers, and dates of services provided memorized.

So, here I am. Gathering all of this information.

What's to say I'm not just like every other college student sitting in here?

It's kind of refreshing to be honest. Even though I'm engrossed in "all things wrong with Alex" not a single person in this place knows that. The barista isn't casting judgement. The people around me don't care. They don't have to. No one is asking me questions. No one is interjecting their thoughts and opinions into what I'm doing. 

But, in the time I've sat here. I've received 8 calls.

8.

Apparently, informing the referral office at my neurologists that I've already had my initial appointment sent my referral into a lost land of the medical industry. So, I was contacted to set up a visit with a doctor in a whole different network. And then I had to be called back every time my regular doctor found more information.

They found where it went wrong.

They notified each location of the error and made sure no more calls would be made.

Then my doctor called to reconfirm everything that just happened.

And finally, a nurse contacted me because the results from my blood tests are in.

They want me to come in. 

Ever stop breathing in a coffee shop? I did.

If tests come back normal, they don't want to see you in the office to discuss the results.

They just don't.

So, tomorrow I get to face my doctor.

Social security benefits and qualifiers are one thing.

The idea of having a viable diagnosis with a set in stone treatment plan? That's a whole new level. That's something I can't even begin to comprehend.

I could have Celiac Disease.

It's funny. Chronic Migraine doesn't scare me anymore. I already know so much about it. I understand the limitations. I understand the risks. I understand the given uncertainty and that most of my doctors won't ever be able to tell me something I don't already know.

But Celiac Disease?

Let's be honest, I'm the last person that knows what to do with this.

I mean, I laugh at people who demand gluten free as much as people who push their veganism onto everyone.

But to have to be gluten free. Because gluten is trying to kill me?

That's a new one.

Hell "gluten-free" could solve all of my problems. This discovery could literally give me my life back.

Or it could just add itself onto the growing list of "everything that's wrong with Alex Tomlinson" because to be frank, that's just my luck.

So here I am.

I got a ton done today. I spent hours on the phone straightening out financial aid issues. Then waiting on hold to be told that unless I've submitted my disability application, I just have to have a "walk-in" appointment. I opened a new bank account. I've requested information from my doctor to get my insurance switched properly.

I've sat and narrowed down exactly which articles of the social security disability requirements fit my case, so that I can sit down and present them to my less than willing doctor in order to make my case.

But now I'm one bad thought away from a mental breakdown in the middle of a coffee shop. All because of a singular phone call that I've been waiting on for almost a week.

Is there gluten in a cappuccino? Hell probably.

Thankfully, Voltaire always knows what to say...

"Uncertainty is an uncomfortable position. But certainty is an absurd one." 

A.

Comments

Popular posts from this blog

I Know I Look Fine

Let's all take a moment to be very honest with ourselves. If we looked the way we felt 99% of the time none of us would look all too great. This isn't something that is specific to my condition. This is something anyone can deal with. Got arthritis? Got a UTI? Getting over a cold? No one is going to proudly display the dark circles under their eyes, and lots of makeup companies have perfected concealer to hide just that. But I'll put up with your looks. Your confused faces. Your attempted sympathetic "well I hope you feel better" as I rush away from work. Why? Because there's no way you can ever SEE the pain and the symptoms I'm experiencing. Sure my pupil is literally taking over the entire blue part of my eye... but hey I'm probably just stoned or something. I don't know how you'd be able to see that my body is saying hey if you don't get into a dark room right now, lay down, and try and consume some food I'm goin...

You See What I Show

You see my hair done. You see my makeup. You see my blemish free skin. You see a healthy glow. You don't recognize the tired, strained look in my eyes, because you've never been exposed to a truly "healthy" version of me. Forgive me for putting on the show. Forgive me for pretending that everything is fine. Forgive me for not looking sick. Forgive my negative outlook. Why? Because you don't get to see what this condition is. You don't see that I haven't slept in days. You don't see the bruises lining my legs because the heat has caused a rash on my skin. I understand that its a hard thing to wrap your head around. I mean I get it. I stood at work with a pain level 9. And as I walked around the store, it felt like someone was pushing from the inside of my skull down onto my eyelids. I had to forcibly hold back tears because the pain was so intense. I'd accidentally wander into an area where the sunlight was bouncing off of s...

It Hurts

To say I feel less than human, is probably a bit of an understatement. But I do. I've been home for a week. I've managed to pretty much lay in bed in agonizing pain the whole time. I had a half-assed attempt to see a friend that resulted in me rushing home as the nausea and aphasia set in. I successfully made it to massage therapy today. Which meant even after sleeping for roughly 2 hours, I got up at 7:30 and sat in traffic for hours to get to a less than expected appointment. Mind you, my previous massage therapist was so wonderful I'm most likely spoiled to other techniques. This lady was late, she sat in the same god awful traffic I did. We spent more time going over the woes of her morning, than we did discussing why I was there and what I hoped to achieve through various massage techniques. The massage room wasn't dimly lit, and even as the massage started, lights were still on. I found this odd, but decided to just keep my eyes closed. Then she started ...