We Are the Champions- Even If it Doesn't Feel Like it

Having MS is like a scavenger hunt where the items keep changing, the clues keep changing, the rules keep changing, and just when you think you have finished the list, there’s suddenly a whole list on the other side. And then maybe, just for fun, some items on the list have disappeared (I could have sworn _______ was on there). I was diagnosed in 2004. You would think by now, I would be able to tell the difference between MS symptoms, flares, or something entirely different.

Yet…there are times it’s still a guessing game.

Like the game I’ve been playing for years: Is it MS or Is it Raining. There are new variations that include Is it An Errant Hair or MS, Is it An Allergic Reaction or MS, and Is it a Migraine or MS. One day, I was playing the Errant Hair game, and I looked at my hand to brush off the invisible hair and THERE WAS AN ACTUAL LIVE SPIDER CRAWLING ON MY HAND.

You get so accustomed to ignoring the weird sensations that when there’s actually something on you that shouldn’t be there it almost feels like a betrayal. It’s the rule change right there in your face. Or hand, or leg, well you get the idea.

When I felt that weird pain on my left side by my hip, I thought uh oh. I knew exactly what that was. I called the orthopedic surgeon who replaced my right hip. Two office visits, a couple x-rays, and an MRI later, I have surgery scheduled to replace my left hip. I wasn’t messing around this time.

In another post I recounted the details of my saga leading up to the surgery. I thought I was a strong advocate for myself, but re-reading that story, I was still a tad complacent. I waited far too long to get a simple x-ray which could have shortened my saga by at least a year.

I know, it’s not entirely my fault- I should be able to rely on medical professionals to guide me. And, because MS symptoms can be insidious in the way that rarely do you see 2 cases that present in the same way, it’s easy to throw everything in the MS basket. Still, I could have advocated more insistently (though I tried So. Many. Things. to get relief).

Which brings me to what I really wanted to say: be your own champion. No one knows your body like you do. If you don’t think your doctor is doing everything possible, challenge them. Do your research. Ask questions. Present alternatives. If they brush off your statement without explanation, find a new doctor. It is so important for you and your medical professional to be a team, especially with insurance companies looking at dollars before patient welfare. You need a strong ally to fight with you.

I am so fortunate that my neurologist is amazing and I love her. She’s very practical, level headed, and listens to me. When I am wrong, she will educate me, not lecture me. If she doesn’t know the answer, she flat out tells me that she doesn’t know. One time we Googled something together in her office because she was curious what it was.

I hope you have an amazing medical professional in your life. Even without MS, navigating the things we feel can be overwhelming. Having an understanding, engaged, invested, concerned medical professional can make all the difference. You may not win the scavenger hunt but you might have some guidance to work through it.