Confessions of an MMA Patient Part 1/?
I haven’t written about my recovery in a while because I have been more than slightly embarrassed about where I seem to be in terms of progress, but in hopes that what I share can help someone else, I’m going to spill…
I am big. To start, I was anywhere between 143-148 for a good number of years post college. I might dip above or below that from time to time, but I always kind of rounded out at the mid-140’s point and for the most part, my wardrobe fit me. That is no longer the case. AT ALL. At the moment I have halted my furious weight gaining and for the past month have hovered just under 160 pounds. Stop this crazy thing!
A few years ago, when I was misdiagnosed with Narcolepsy, my (then) doctor prescribed a medication ONLY available to people with Narcolepsy. It was called Xyrem. It essentially puts you in Delta sleep, the slow deep sleep that people with Narcolepsy don’t get much of. It helps to eliminate EDS (excessive daytime sleepiness) from which I suffered, and so when I began taking it, I believed it was working. I was not as tired as I had always been in the past. I was waking up in the morning and getting out of bed upon arousal, not hours later as was the norm. I had another drug called Provigil which also contributed to my waking world and seemed to help me concentrate on things that previously would have (literally) put me to sleep. Paperwork was one. Driving was another. But even with these two drugs, things were not exactly working as I’d expected.
First of all, people with untreated OSA (Obstructive Sleep Apnea) are not supposed to take sleep aids because really all those do are relax your throat muscles even more and can potentially cause more “events” (full blockage of the airway). Therefore, when I started using Xyrem, which threw me into virtual hibernation in 3 hour increments, although my “sleep” seemed better, other parts of my life were suffering. The first thing I noticed were the HUGE dark circles under my eyes. The second thing I noticed was that weight seemed to be evaporating off my body like water from hot asphalt. I was waking up absolutely DRENCHED in sweat, and my nightmares were worse than they had ever been. I mentioned the first two symptoms to my doctor (since I figured the nightmares were due to outside stressors) who replied, “You look fabulous. Wear concealer.”
Being female, vain, and any number of other things, I took her words with a kind of biggish grain of salt and powered on through 1 year of treatment, over which time I lost a couple friends to their discomfort with my sudden new hyper shaky skinny persona, and my unwillingness to admit that PERHAPS this wasn’t normal. To these people it seemed I was “on drugs”, which of course I was…just not the kind they suspected. I also lost 30 pounds. I went from a 10-12 to a 4-6.
At the beginning of my treatment, I sprained my ankle. 6 months later it was still sprained and the damage done to my bone marrow didn’t seem to be repairing. I bruised if you looked at me funny, and I was extremely clumsy and still prone to several daytime naps. I also still got very tired while driving, and if I got lost, my brain turned into a virtual bowl of jello and I couldn’t find my way anywhere without calling someone (usually Court) sitting in front of a computer to beg for directions or at least guidance and a friendly voice to 1. help me get home and 2. help me not fall asleep.
I chalked it all up to this incurable disease called Narcolepsy and probably would have died sooner than later if we hadn’t relocated to the Peninsula for Court’s work, which put me spitting distance from the Stanford Sleep Center which I decided to visit before my COBRA ran out, and ultimately saved my life.
I hate long blog posts so I’m going to walk away from the machine and try to get some shut eye. Until tomorrow…sleep well. “I’ll most likely kill you in the morning.”<—Princess Bride reference. Sorry. Couldn’t help it.