35 and alive with an aneurysm, no sob story here

Congratulations to myself for finally taking the time to blog. I think my main hesitation is I did not know what to talk about and if my life is read worthy. Let’s be honest, does anyone really care what I’m doing on a day to day basis? The fact of the matter is I have something in common with many Canadians and Americans in that I’m living with PKD (Polycystic Kidney Disease) as well as a 6mm untreated brain aneurysm.

Since being diagnosed officially with a brain aneurysm in 2008 I searched relentlessly for answers. My immediate thoughts on December 22nd when I was given the not-so-great news is that I was going to die. Who doesn’t think that? I know that I ‘m not alone. For months I struggled with sleep at night wondering if I’ll be a cold slab lying next to my partner in the morning.

I searched the web for answers but found basic examples of what ‘might be symptoms’ or what ‘might happen’ if my aneurysm ruptures. I waited for my newly assigned neurologist to contact me and give me the answers. I wanted relief. I was 33 years old and felt that I deserved some solid answers. I wasn’t told anything I didn’t already know. I have mostly waited in the system for two years, anticipating surgery. Now I’m waiting again to be called in.

Now, at 35 I feel like I have aged 30 years. My unsettled sleeps combined with my frequent headaches has sucked some life from me. Slowly but surely I’m bouncing back, perhaps due to the promise of surgery.

I know that there are people out there that are in the same boat as me, floating along waiting for someone to give us answers. There are so many websites that address ‘after it ruptures’ but very little about living with a brain aneurysm.

Here are some things that I have learned since being diagnosed that you might find helpful remember everyone’s symptoms are different:

1. Sex is okay and your head won’t pop off, even if you think it might.
2. Gag reflex. It doesn’t happen to everyone but it can be embarrassing. It’s one of my favourite symptoms gagging at inopportune moments. (I’ll let you think that one out)
3. You can get on a plane and fly. That was nice to learn AFTER I had already taken over 10 flights
4. Sports even hockey and ball hockey are okay. (My first Neurologist said that I could die in my sleep so why not play sports)…ummm…Jury is out whether or not this is actually okay but my Neurosurgeon said it was.
5. Swimming….apparently ok.
6. The shakes…sometimes you might get shaky after playing sports
7. Headaches …as if I have to write this one down but you might get frequent headaches. Sunny destinations or lying about needing to go to a sunny destination helps!
8. Irritating yourself and others – try to wallow in self-pity even though I’m demonstrating a bit of this by saying I’ve aged. The great news is, you’re alive, make sure to be thankful and look forward your future.
9. You may get really irritated when people refer to an aneurysm as "annie" like it's your friend.
10. Pain behind the eye...in my case this is a frequent symptom and I often feel a sharp pain behind my right eye (my aneurysm is behind my left eye closer to the left side of my head)
11. Sleepy...THIS IS A DAILY occurance for me. I feel tired at around 2pm every day. This might happen to you. I found that getting up from my desk and walking to well lit areas really helps. Taking a walk outside is especially helpful.
12. Drink lots of water just because