What do you mean, I have a cold?

What inspired me to start this blog was waking up this morning. Not because I woke up, but because what happened immediately after: I sniffled.

No big deal, right? People catch colds every day.

Let me give you a little background as to why this was such an inspiration. Unknown to me until my diagnosis in November 2012, I have been suffering from narcolepsy with cataplexy since the age of 14. (I will be turning 30 in March 2013.) My first real symptom was collapsing to the floor for no apparent reason.

Because I had dislocated my kneecap when I collapsed, and subsequently dislodged a tiny piece of cartilage that was floating around in my joint, I had to have arthroscopic surgery to remove it. The surgeons just fixed me up and sent me home - no answer was provided as to why this happened, or even the smallest indication that they were trying to find one.

This was just the beginning of a long, drawn out fight with a poorly understood, chronically misdiagnosed illness. By the time I separated from the Navy in January 2012, I had been through 5 knee surgeries (3 of which were major tissue and bone realignments to address the dislocations), was taking extended-release morphine for the chronic pain, and was suffering from terrible insomnia and panic attacks.

Nobody could figure out what was wrong with me, and my health continued to deteriorate even as I started my new career as a Department of Defense employee. I began to have sleep attacks at my new job in May 2012. I was terrified that I would lose my brand new job that I loved, so I got a referral to Sleep Center Hawaii. Through an overnight sleep study and a multiple sleep latency test, I was finally diagnosed with narcolepsy with cataplexy.

What I didn't realize was how totally narcolepsy had affected my outlook, health, and even my weight. After the excruciating process of weaning myself off of all the pain medications I was previously prescribed, I began my regimen of Xyrem. Xyrem is the only drug approved by the FDA for the treatment of narcolepsy with cataplexy. It is also very tightly controlled, and comes with a laundry list of contraindications and explicit instructions. I was, quite frankly, scared out of my wits. But I had no other options.

With the support of Narcoleptics in Paradise (a local support group) and my wonderful boyfriend, I successfully started using Xyrem and got a new lease on life! I woke up after the first night feeling more alert and refreshed than I had in years! More importantly, I was totally pain free. Since then, I have been re-learning what it is like to function "normally".

When I started to feel tiny twinges of pain in my legs a couple days ago, along with increased sleepiness, I started to feel doubt gnawing in the back of my mind. Was the Xyrem losing effectiveness? Am I losing all these hard-won battles?

I discovered this morning that I was not losing. I was, in fact, gaining. Gaining an understanding of what it feels like for "normal people" to catch a cold.