My name is Alayna. I live in Southern California. I have two rare syndromes, along with chronic pain, that like to join and conquer my body. I have POTS (Postural Orthostatic Tachycardia), DSPS (Delayed Sleep Phase Syndrome) along with chronic pain coming from my herniated L4-L5 disc and spinal stenosis in the canal. I'm starting this blog as a way of kind of keeping my cool when I get frustrated and need a good rant. This may also end up partly as a journal. But the things I really hope to accomplish is making some friends that may or may not share these disorders, and I want to spread information because so many people don't know about these disorders.
All this started when I was in a production of Pirates of Penzance at my community college. This was over a year ago, when I first found out my disc was herniated. I'm on my laptop, thinking it's just another night until I have to scream. The pain just started. I got rushed to the ER, where the doctor want to run tests for a herniation, but not thinking I had one because he's never seen one in a woman of my age. (I'm 21 at this point.) So they give my Dilaudid twice, then gave me Benedryl after the second because it now happens that I'm allergic to Dilaudid. So Morphine for me! Luckily I was only there for a few hours, and I could walk out of the ER to the car by myself. Yes. You read that right. Two doses of Morphine later and I can still walk. I have some weirdly high tolerance for all medicine.
In the meantime, I was having horrible heart palpitations and was diagnosed with POTS. I was lucky. Some people wait years before getting their diagnosis. I got it in months. POTS is a really odd syndrome. It can affect your body for years, and until it gets to the heart, it's basically undiagnosable. Basically, it means that the regulation abilities of my body are compromised. The most obvious of these symptoms is when I stand up. I get up, my blood pools at my feet. My blood pressure bottoms out, my heart rate skyrockets, and then I faint. Fun eh?
On to DSPS! I've always had trouble falling asleep. All the doctors thought it was just insomnia, but the medicines they gave me just don't work. I had sleep studies done, where they wire you up, with electrodes on your head to measure your brain waves, on your chest to monitor your heart rate, and on your legs to see how often you move your legs. They then stick something up your nose to monitor your breathing and then expect you to fall asleep. Of course it takes forever to fall asleep, and then they wake you up at six in the friggity fraggin' morning. They then tested me for narcolepsy, which I didn't understand because my problem is falling asleep not staying awake. Blah blah blah. Many months later and many doctors later they diagnosed me. DSPS basically means my sleep cycle is switched around. I want to sleep during the day and stay up all night. Not conducive to a student lifestyle, especially when they offer your class at one time a day. And it's always in the morning. There is supposedly a lot of options for this, but none of them work when yu have a bunch of other crap going on with you.
So basically those are my medical problems. Hopefully next time I can tell you about the more important things in my life. Things that I love, not things the mess with my daily life.
