<<Click HERE to vote for Chris as BlogHer's Voice of the Year>>
People get sick. It’s a natural part of living. Colds, flus, an infection here and there, maybe a broken bone or a sprain; it’s all part of the human condition. But what happens when you get sick and it never goes away and how do you make sense of a life so radically changed?
A year and a half ago my gall bladder went on the fritz. It couldn’t be full of stones like a “normal” “bad” gall bladder, making diagnosis easy. No, instead it had simply stopped “squeezing,” rendering it a useless lump of internal organ. So, out it came with an anticlimactic end to my health issues. Or so we thought. In reality, it was just the beginning of my strange trip.
As the months progressed and new and ever more bizarre symptoms popped up, it became apparent there was something seriously haywire with my system. THAT was when the tests began! I was poked, prodded, X-rayed, and MRI’d enough to make a Roswell Alien jealous.
I officially entered what I like to call the Medical-Go-Round phase of my life, where you go from Doctor to Doctor and Specialist to Specialist while they all play Pin-The-Tail-On-The-Diagnosis. This is the part of the diagnostic phase that really becomes completely emotionally and mentally exhausting, not to mention seriously financially draining.
During that first year I was told so many different things, I needed a score card to keep up! The list included; it was all in my head, I had a pinched nerve, irreversible nerve damage from a vertebral compression, possible Multiple Sclerosis(MS), possible Lupus, “it could be” Parkinson’s, and “it might be” Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig’s Disease). In February of this year, I was finally diagnosed with Systemic Scleroderma and Fibromyalgia.
Since February, the blood panels that led to the diagnosis of Scleroderma have been expanded and the name of the auto immune beastie has changed first to Myositis and currently to Unspecified Mixed Connective Tissue Disorder with possible Overlap Syndrome. (Try saying THAT one three times fast!)
What it all adds up to is they KNOW my immune system has lost its mind and decided my muscles are the invading enemy, but they need more information (read as “presenting symptoms”) to figure out exactly why it went loopy in the first place.
Personally, I told them I didn’t care if they called it “Blue-Green Disease” or “Bob,” just as long as they could do something about its maniacal attempts to take over my bod! It would appear the reason putting a name to the beastie is so important is it will determine the course of treatment they use to stop or at least slow the little bugger’s progress.
Do you want to hear the best part? I’m one of the lucky ones! I’ve only been looking for an answer for a year and a half. The average time it takes for a diagnosis is 4.6 years, so I’m way ahead of the curve! (See Ma, I KNEW it’d happen one day!)
Don’t let the bad jokes fool you. It really has been one heck of an emotional rollercoaster ride, but have you ever heard someone say, “It just makes you want to laugh or cry. I’m not sure which.” For me it turned out to be a little bit of a no-brainer. Since I had always used laughter and BAD jokes to deal with difficult situations in my life, I just stuck with what I knew.
Please don’t misunderstand and think I’ve been a shining example of grace under fire. The number of times I’ve gotten frustrated and proclaimed, “I’m done!” with all the tests and Doc visits are too numerous to count. The number of times I’ve cried, thrown temper tantrums, and cried some more? Pfft! When I’m completely done doing these, I’ll let you know.
All joking aside, I’ve come to realize that it’s not who someone was “before” or how they react to the initial diagnosis that can truly tell you what they’re made of. What you decide to do after that initial shock when the World feels like it just dropped away, which fork in the road you choose, that’s the real “show-and-tell.”
On the more practical side, I’ve learned to get copies of everything and carry them with me to every appointment (sometimes Doc’s have a hard time sharing). I keep a list of questions in a notebook between visits so when I’m in the middle of a timed check-up, I won’t get all flustered and forget to ask them. You should also read and research EVERYTHING, not so you can self-diagnose but instead so you know what needs “clarifying” and to help you make informed decisions about your health care.
There are so many things I would LOVE to tell you about listening to your gut, going with your instinct, and not giving up. There are amazing “tips and tricks” I’ve picked up along the way that make life so much easier and tons of resources I really want to pass on, just in case you or someone you know find yourself at this place. But alas, there are finite space limits for infinite information.
So instead, I’ll leave you with this; we all arrive at these forks in the road from time to time. With some things, like auto immune disease, the choice is out of our hands. But for others, which way we decide to turn and how we let it affect the person we are or hope to be is completely up to us.
For me, every morning I make the choice not to waste time mourning the things I lost. I choose instead to get on with celebrating the living and loving with as much laughter as I can!
ABOUT CHRIS: Chris Dean is the wife of an extremely tolerant man, Mom of four fairly functional adult-kids, world-class music junkie, and all around nut job! She began writing Life Your Way! as a way to help keep her sanity while going through the diagnostic phase for an autoimmune disease.
Chris dealt with this speed-bump the same way she’s always dealt with these things, education and laughter. Her mantra has become, “A life without laughter is a life unlived.” And living is exactly what she makes it her goal to do and hopefully inspire others to do as well!