More Medical Tests

Well, it's about time I started getting the medical tests done. I've been putting them off for way too long. It's been over two months since I've gone and seen the specialist so maybe it's about time I do something.

I would have done it sooner, but I've been busy and lazy.

My computer has a vice-like grip on me.

First on the list was the blood tests. I don't mind needles too much, except when the people sticking them in me are terrible at their jobs. I have massive veins, they have been described as "you could drive a truck through them". So if you can't get the needle in on the first try, you probably should get a new job.

This applies to the terrible nurses I had when I had surgery in the hospital, and some technician at some other clinic drawing blood for some tests.

Luckily I got someone good and after drawing 7 tubes worth of blood from me I was allowed to waddle off to the bathroom to urinate in a cup. Yep, turns out I needed a urine test too.

Yay.

An x-ray clinic was above the clinic where I got a blood test and I have some time left over so I took the elevator up to get my x-rays too. I laid down on a hard, cold metal bed which was exceptionally uncomfortable because I'm way too thin. My hip bones kept me balanced at the price of bruises.

I understood why they needed to take different photos of my lungs, but I'm not sure why they needed spinal x-rays too. Luckily it didn't take too long and I was off on my way.

But that leaves one last thing, the genetic test questionnaire. Started off good, just personal information, nothing I can't answer.

And then the questionnaire needed me to start gathering information about my family members and extended family members.

I barely know anything about my Dad's side of the family.

Some of you will wonder why this is an issue for me. How hard is it to ask your parents for some information? Any of my regular readers will recall that my parents have no idea that I've been visiting the doctors and getting these tests for over a year now.

To approach them with this genetic test questions would finally reveal all of this. And again, some of you will wonder why this is a problem. Simply put, my parents would start worrying nonstop. There's no proof that I have any of these medical issues but there's no point in having them worry unnecessarily while I wait for the results.

Also, as I've gotten older, I've begun to hate the "interrogations" that I get from my parents. They might mean well, but I they're not helpful to me or them. When I got the call from Recruiter B the other week my Mother began questioning me nonstop, asking why I would be even interested in a "marketing" job, would be as "lowly" as my other marketing job, how much did it pay, didn't I want to be a psychiatrist at one point, why didn't they contact you sooner, etc. etc..

This is exactly why I don't share details of my life with my parents anymore. If something bad happens, they won't know about it. If something good happens, they can't really bombard me or question my decisions.

You might care a lot, but the way you're showing it isn't the greatest.

So I need to find a clever way of either getting information or completely forgoing the genetic test. The chances of me having Marfan's is pretty slim already so maybe I can just ignore this.

I've also booked another appointment with a sleep clinic. I'm going to get another sleep study done sometime in July after my little trip to Vancouver. I want something more conclusive as to how bad my sleep apnea is.

The Specialist's Diagnosis

I've discussed in previous posts how I might have Marfan's syndrome, a genetic disorder that I appear to have many of the symptoms of. A few months ago my doctor booked an appointment with a specialist to see if they could make a more conclusive diagnosis.

And remember, even if it turns out I have Marfan's, there is NOTHING they can do for me. There is no cure, and all they can do is manage the symptoms.

Kind of like how there's nothing they can do to make this cat look less ridiculous.

Let me begin by saying I hate the public transit in my city. The buses are rarely on time, the online trip planner is inaccurate, construction on the roads creates congestion and moves stops around, the people on the buses are usually really questionable.

Oh wait, I think I've described public transit in almost every city.

My point is, I hate busing. And I refuse to tell anyone in my family about these appointments because my Mother is just going to worry non-stop over something she has no control over so let's keep her out for now. But this means I can't get a ride to the specialist and I need to go at times where I can claim I'm on Campus or something.

And if I miss my appointment, it's going to be another few months until another opening pops up that I can take. I need to catch all the buses, at the right times, in the right order, etc. etc..

Or chase after the stupid thing.

Luckily, I somehow managed to get all the transfers correct on the first try and made it to my appointment with time to spare. The specialist examined me, asked a ton of questions, examined me some more and gave the following diagnosis:

"Inconclusive".

Turns out, the only way to definitively know if I have Marfan's is if I get a genetic test done. But only 2 people in my entire province can do it, they're heavily booked, and if they don't think you have a good enough case to perform the test, they'll just turn you down.

But here's where it gets a bit more interesting. Another reason why the specialist said things were inconclusive was because I might just have a disorder that's similar to Marfan's. There's a name for these class of disorders but I can't remember it.

But because I have such a range of symptoms that partially match up with various disorders there's only one thing they can do, more tests. He sent a letter of recommendation to see if they'll consider doing the genetic test on me. In the meantime I'm going for more x-rays and more blood tests.

Oh, and the funny thing, one of the possible disorders I have might be lupus.

House would be amused.

So, off to get more tests, wait for the results to get back, and we'll go from there. And I don't mind going for blood tests, I just hate nurses and doctors who suck at taking blood and need to stab me 50 times to get it done right.

Happy Easter!

I hope everyone's enjoying their Easter long weekend. I know I am, and by enjoying I mean I get to sleep in and sit around being unproductive. I wish I could have had more chocolate but I think my Dad ate all of it already. Or maybe I did. It's hard to say, we're both kind of notorious for having a sweet tooth.

Or you know, I could just wait until the end of the the holiday and then rush to buy all the discount chocolate I can get my grubby hands on.

No one is safe.

In other non-Easter related news, this weekend I'm finally getting around to upgrading my computer. EVA has faithfully served me for nearly all of my years of University, and her hardware is starting to show its age a bit.

And yes, I name all my computers (my Mac, for example, is called Commander Fabulous, he has a pink case, my first laptop was named Lappy) and I'm considering renaming EVA to CABAL. For anyone wondering where I got the names from, they're the names of the AI from the once great RTS series Command and Conquer: Tiberium Sun. Back in the days before Electronic Arts ruined the series.

EVA stands for Electronic Video Agent whereas CABAL is Computer Assisted Biologically Augmented Lifeform. CABAL was also the more powerful AI which is why I was considering the name switch.

Wait, CABAL went rogue and tried to kill everyone. Maybe I should stick with EVA instead.

Nah, he looks safe to me.

Also, my specialist appointment is coming up. It's time to see if I have Marfan's. I want to say that I feel nervous but again, even if I have it, nothing that can do. So why bother worrying?

Finals are around the corner, so I'm going to try and rest a bit more while I can. Enjoy the rest of your weekend everyone.

Marfan's and Me

I really didn't expect anyone to correctly guess the potential genetic disorder that I have. But well done Lizzie, most of the time I've given you shout-outs because of recipes that I've tried to copy from your blog. But today, it's because you were the only person to guess what health problem I might have.

The rest of you get a gold star for effort.

Or an A if you want.

But what is Marfan's? Basically, it's a connective tissue disorder. Tissues that support various organs in the body may not form or develop as they should. Some people get faulty skeletons, others get hearts that don't work as efficiently as they should, and unsurprisingly I think I got stuck with defective lungs.

There were numerous reasons why I was suspected to have Marfan's. Fairly tall, thin, with elonganted fingers, small chest indentation, narrow face, the collapsed lungs and lung cysts, sleep apnea, general fatigue, poor blood circulation.

It's not surprising that my friends are dubbing this "Slenderman Syndrome".

Close enough.

But as most people would guess, it's the inefficient heart that are the killers in this disease. Weakened heart tissue and valves are not something to be taken lightly. This is why I went for the echocardiogram the other day, to see if my heart has any problems yet.

Lots of people generally go for heart surgery to try and fix things up. The technician for my echocardiogram was telling me how she had a friend who had Marfan's, and said friend needed the surgery so she could give birth safely.

However, I still think the scariest thing about Marfan's is that I could be dead by 30. 30.

Remember, I'm only 22, turning 23 later this year. 

Did I mention that Marfan's has no cure?

Luckily, there's heart medication for me (if I should need it) and that'll extend my lifespan to about 70. Not optimal, but still a huge improvement.

My doctor also didn't seem too worried, because a lot of the health problems I have are could simply be due to being so tall and thin. And again, not much they can do for me anyways even if I am diagnosed with Marfan's besides what I'm already doing. Which is dealing with the symptoms as they appear.

I'll have something more concrete in April when I see that specialist. My doctor hasn't called back about the echocardiogram yet so I guess that means everything is fine?

I hope.