So I have had this debate going on in my head today about whether or not one of my first posts should be about the other side of me. Considering that I am having a very “syringo” day, I decided that I might as well go ahead and tackle it.
I have a condition known as syringomyelia. Well, now, that’s a mouthful. It even gets a squiggly red line saying it is some spelling gone horribly wrong. It does…really…try it on your computer! Anyway, It is pronounced (sear-IN-go-my-EEL-ya) and it sucks sour lemons. Except that I like lemons, so let’s say it is not a fun summer walk in the park.
According to the National Institute of Neurological Disorders and Stroke (NINDS) Syringomyelia is a disorder in which a cyst forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying a portion of the spinal cord from its center and expanding outward. As a syrinx widens it compresses and injures nerve fibers that carry information from the brain to the extremities. Damage to the spinal cord often leads to progressive weakness in the arms and legs, stiffness in the back, shoulders, arms, or legs, and chronic, severe pain. Other symptoms may include headaches, a loss of the ability to feel extremes of hot or cold (especially in the hands), and loss of bladder and other functions. Each individual experiences a different combination of symptoms depending on where in the spinal cord the syrinx forms and how far it extends. Signs of the disorder tend to develop slowly, although sudden onset may occur with coughing or straining.
Mine is from an injury, but that is a long story. And, while the NINDS is a very smart group of folks, there are a few things they don’t tell you when you get this word handed to you with a shake of the head is that there are a symptoms that kick you on your butt. Regularly. With Passion.
So here is a list:
Progressive weakness and pain in back, shoulders, arms, or legs. Which is not so bad unless you want to lift more than say 10 pounds. That’s my limit. Do you know that many textbooks weigh more than that? Also, no repetitive motions. Gee, as a media specialist, I don’t do that at all when I check in/out books or shelve books.
Inability to feel hot or cold normally. HA! This is a funny one. “Abnormally intense reaction to hot or cold” should be inserted here. You know how if you are actually ironing a shirt (instead of chunking it back in the dryer with a damp cloth and hoping for the best) and you swipe your hand over the area you just pressed. Yeah. Don’t. Ever. Do. That. Searing pain all the way to the middle of your back. Also, put a Koozie on that soft drink can. Yes, soft drink or water glass. *Alcohol is a no-no considering all the medications that I take. Not a problem for me, I didn’t imbibe anyway. Ironically, I don’t like the feeling of being out of control that alcohol gives you.
Difficulty in walking. Let’s just say that I have been presumed drunk on more than one occasion. (*See above) Standing can also be an issue. You know the DUI test walk? Yep, I’d fail big time! NO BALANCE! It is actually quite comical. Fortunately for me I have a really good sense of humor and laugh off the majority of the leanings, falls and sideways walks.
Vertigo. Add this one on a regular basis to the one before and you REALLY have everyone thinking you are a drunk!
Neck pain. Severe. However, I have grown accustomed to it, so for me it is just a part of waking up every day.
HOW DO I DEAL WITH THIS?
I go to the doctor. A LOT. I have a neurosurgeon, a pain specialist, an endocrinologist and a general practitioner. My pharmacist and pharmacy techs are on a first name basis. I take enough muscle relaxers (3 different types, 3 times a day, alternately) every day to stop a horse. However, for me, it is just what it takes to keep me upright. No, they don’t make me sleep all the time. Chronic pain apparently causes the body to react differently to medications. I also wear a pain patch that leeches an opioid into my body every hour.
WHAT ABOUT ADDICTION?
Nope. People who suffer from chronic pain don’t generally become addicted. Our bodies use the medications for purposes other than the euphoria that addicts hope for. Trust me, there’s no euphoria here! ;( If you don’t really believe me, check out this link for emedicine health.
So today as I contemplated writing this post, I have a new issue. An electrical shock sensation emitting from my spine. Hmmm. Another call to the neurosurgeon. It could be an inflammatory issue somewhere, or it could be something “else.” Tomorrow I will call to check with her. I see another MRI in my future. This will be my 7th in four years. Oh, and did I mention I’m severely claustrophobic? Another post maybe…