Gratitude and Frustration

After I posted my update yesterday, so many comments, messages, and phone calls came. Everyone is so supportive, and I'm so grateful for that. It's so good to know I have a support crew to depend on if I need that over the next while.

What has been frustrating me--and I wasn't able to express it until I said it out loud on the phone a few minutes ago--is that everyone thinks "all the tests came back normal" is good news. I know you all mean well, and I know it's a good thing that I don't have, say, a malignant brain tumour. But it's not good news.

"All the tests came back normal" simply means we still don't know what's wrong. I may or may not be having seizures. So we try a seizure med (which may or may not result in mood changes, suicidal ideation, blood/marrow problems, allergic reactions, etc.). The seizure med may or may not make a difference. If it does, yay(?) I have epilepsy. If it doesn't, it's back to trial and error with a different med. Maybe more testing.

Best case scenario(?) this first med works and I get diagnosed with seizures/epilepsy and potentially lose my licence. But life will go on and I will manage that.

Worst case, I continue trying meds and tests and doctors for months or years. Some people go through all of this and never find out what was wrong.

This is why I was so upset last night, and why I'm not sure how to respond to all the "this is good news" comments. To me it's not good news.

But, I'm not dying. And like I said, I am super grateful for all the support. I don't want this to come off as rude or ungrateful... I just feel the need to express why I'm not happy about "all the tests came back normal". :/

In any case, I know I will be ok and that you all will be there for me in the process. :)

Now excuse me while I go take out my frustration on a punching bag.... :)