(Impatiently) Waiting…

I had a bunch of tests done a few weeks ago (doctor’s orders) – like seriously, everything under the sun. I figured if these tests don’t get me some of the answers I’ve been searching for, then it might be time to give up.

My healthcare providers have an online thing called MyChart, which means I get to see my test results as soon as they’re posted! Good? Bad? I’ll let you decide. Anything out of the “normal” range gets posted with a big red ! next to it. Cue the anxiety. And the googling. What do I have?!  What does this mean?! What do I do about it?! Why hasn’t my doctor called me yet?!

So I know that I have a bunch of tests that came back “abnormal” but I have to wait for my appointments with my respective specialists to figure out what these results mean!! HELP!

Advertisements

Searching for Answers

I can’t remember the last time I felt good. Yes, some days are better than others, but for the past….10? 15?… years of my life I have generally suffered through each day with some sort of ailment or another that the doctors could never figure out. They seem to be *kind* of connected, but not enough so for an obvious diagnosis. As a kid I always had random aches that were explained as “growing pains” and my parents often told me I was like the princess and the pea (meaning I was too sensitive and dramatic, for those who don’t know that story).

My daily headaches began when I was in middle school, probably around age 11 or 12. I tried countless remedies but nothing made a difference. In my middle school and high school years headaches were just a normal thing for me. I never went anywhere without my Excedrin, a water bottle, and some snacks. I was always tired during the day, but wide awake when it would be time to fall asleep. Waking up in the morning, I would literally wonder if someone had drugged me – that’s how awful I felt!

“I want you to get a sleep study, I think you might have narcolepsy.”
yeah…right…sure I do… [I thought my doctor was crazy]
but it turns out I actually did.

So I thought I finally had my answer. But after taking my sleep medications for the past 2 years now – I’m still sick. I’ll always be sick. I’m still trying to get used to the fact that I am going to have to be on medication for the rest of my life. Then there’s also the question of which symptoms might actually be side effects of my various medications. Too many questions – not enough answers! It doesn’t help that I’m so indecisive. Yes, I am functioning better than I was, but I still truly believe there is something the doctors are missing. I’m sure some of my doctors think I’m a hypochondriac (as do my parents) but the symptoms are real to me and therefore have to have an explanation of some sort, right? Especially because I tend to downplay my symptoms. I don’t want people to feel bad for me. I’m tired of explaining things over and over and then having people not believe me anyway. It’s often a cycle of me trying to stay strong until I get so tired of being “sick” that I break down crying. I need to stop hiding behind my shields I’ve built over the years.

try to remember:

I need to focus on all of the answers I have already found! I’ve made a lot of progress in my quest to solve my health issues. I’ve also accomplished A LOT despite all of my challenges. I have a tendency to downplay my accomplishments… almost like I attribute them to a fluke thing. When I stop to think about it, I should be proud that I was able get through high school and college with great grades, while looking back having undiagnosed/untreated narcolepsy. I should be proud that I pushed through my headaches and made it to classes, events, and everything I was possibly able to. I have a lot to be proud of. I need to focus on the good things rather than dwelling on what can’t be explained.