Saturday, June 29, 2013
The difference a year makes..
It's been a year. What seems like maybe indeed the longest year of my life, a year none the less.
It started on May 22 with some weird tingling in my toes after a rather long ride in the car. I have back problems from a former car accident and just assumed I had been in the car too long. By the 24th the numbness and tingling had traveled up my body taking more and more of my feeling with it. I went to the ER that day, scared to death that something really really bad was happening. I posted this on facebook that night:
"at Athens Regional Medical Center, being admitted for who knows how long. Saw neurologist he seemed worried but didn't know just yet what to say. MRI and other various tests in the works...ps. scared to death"
I don't even know if Brian knew how truly scared I was, and I don't think I'll ever truly know how scared he was.
I went through MRI scans, heart monitoring, a failed lumbar puncture, a lumbar puncture under fluoroscopy, and finally on June 29th a diagnosis. Relapsing Remitting Multiple Sclerosis
Multiple sclerosis (MS) was first described by French neurologist Jean-Martin Charcot in 1868. Yet, after more than 140 years of research into the disease, much remains a mystery. There is no known cause, and as yet, no cure. However, there are treatments that can slow the progress of the disease and manage the symptoms, and new research is expanding our understanding of this unpredictable illness.
What is MS? for the quick explanation think of an electrical cord that has been chewed by a dog. The plastic coating has been damaged and while some of the wires are exposed the lamp works but the light may flicker but still sorta works, then once you wrap it up with electrical tape it works better and maybe only flickers when it's moved or messed with. Your nerves have a fatty coating called myelin and it protects your nerves. MS means multiple scars...your immune system attacks the myelin and exposes your nerves causing nerve damage. As the myelin heals it scars up and then protects the nerve again. It doesn't make the damage go away but can make some of the symptoms lessen. When you over exert or get too hot or too cold it can make symptoms re-surface or existing ones worse.
The course of the disease varies greatly from person to person. It is impossible to predict the severity or progression in any given individual. To better develop appropriate management plans, MS is divided into four classifications:
MS comes with a whole slew of symptoms and they all pretty much suck.
I currently exhibit fatigue, neuropathy isolated to my arms and hands, tactile and sensory issues, and some cognitive and emotional dysfunction.
If you have questions ask me.. if you have judgements, flippant remarks, unkind words, or general snarkiness please leave those things at the door. I did not do this to myself, being overweight didn't cause it, drinking diet anything didn't cause it (FYI I don't' drink diet anythings, they taste gross and make my throat feel funny). I know I need to loose weight, eat better, exercise more, those things don't happen over night. It's not OK to hurt feelings so sometimes your "good intentions" or things you say "out of love" really hurt. If you don't understand how it works, can come about etc ask! I may not have an answer and I may need to try to search it out but I'd much rather questions then judgements.
I know it's hard to deal with a disease that will not get better, and in fact over time will only get worse. It's hard to process what life will be like, at least for me that is the case. It's hard to think about all the what if's. What if I loose the ability to walk, talk, see, use my hands all together? These are all very real things that could happen. Luckily for me I have a fantastic spouse who helps to keep me grounded.
I have recently decided to try to go to school. My passion is photography, I wavered assigning that as my major because I got a case of the what if's. He told me to do it any how, even without MS I could loose the use of my hands or even my life at any given time Heavenly Father decides to call me home.
So this coming year I hope to be working on my degree, strengthening my family bonds, striving to be the best mother I can be, to be a better wife, and most importantly to not dwell so much on the what if's of life and just LIVE.
My life is forever changed, but it is NOT over and I will do and be all that I can until I am called home to my Father in heaven.