I bet my doctor thinks I'm stalking him. Seriously. Apparently, I've got this Wash, Rinse and Repeat mindset with my health. Yet another month and I'm spending another Saturday night in the DHMC emergency room. I'm getting good at it. I have charged batteries, the computer, change for the vending machine, and a foot with toes that look like little sausages. Fortunately, it is warm so I can rock my Vera Bradley flip flops. Well, at least on my one foot. I do have a slip on sneaker on the other one. And I have a matching pair of the mismatched shoes in my backpack. The good news? We now know it is not related to my TM or MS. It is a Gout like condition. (you've "gout" to be kidding me....) Hydroxyapitite crystal disease, to be exact. Just another Latin phrase for my collection. Fortunately, it is treatable, but it still hurts like a son of a snickerdoodle. (My kid friendly curse word.) I think Lilly thinks they are dog treat "Snausages". She keeps licking my toes as if she thinks they look tasty. Good grief! (Do they still make those? I can still hear the crazy voice from the commercial saying it in my head.)
5 hours in the waiting room. 2 in the actual ER made for a full day at the end of my full day. My doctor assures me that he knows I am not stalking him. In fact he called me a trooper. I liked that. I think he felt badly that I hadn't come in sooner when he saw my puffy, painful toe sausages, but I assured him he rocked. He does. He's the best. But I digress. I was released at 2 AM. When you live 1 1/2 hours away that causes a conundrum. Too late to justify the expense of a hotel, but still late. I opted for drive as far as you can and stop if you get tired, or if it starts to rain with temps at 32 or below, which ironically occurred about the same time. I believe the thought process went something like I'm too tired to deal with driving in this crap. I was delighted that the next exit was a rest area. Sold! I was tired enough that with a bag to curl up on I slept for a solid 3 hours, awoke to daylight, was home by shortly after 7 and slept until after 11. Toes are slowly improving. I continue to work on my patience. I am now banned once again from Olympic competition or professional baseball with my steroid use, but I guess I have no choice.
Nor does it seem I have a choice about starting my new "count every calorie and write it all down diet" brought on by steroids, and a smidgen of stress eating and too many alcoholic national holidays. I played. Now I must pay. This increasing weight gain will NOT be a victory these illnesses claim! (Remind me of that if you see me in Shaw's looking at cookie dough....) I just read tomorrow is National Kaluaha Day. Not good. I try to be Patriotic. How many calories does it have? Never mind, again, I digress...
This is how it all began. Once again I had to make the decision to drive to the hospital alone. Third time's a charm right? Or is it three strikes and you're out? I did make it safely. And the journey proved to be an enlightening one. On the way down I couldn't find anything I liked on the radio, so I hit shuffle on all 616 of my offline songs. What followed was an amazing journey of songs new and old from every conceivable genre. What struck me was that sometimes you just have to let the universe throw out the songs for you to listen to. Some were encouraging, some just fun, all were worthy of singing along to at full volume. I sang loudly to distract myself from the pain. The more it hurt, the louder I played the music and sang along. It was loud, but I think I was pretty good. At least there was no one there to tell say otherwise, so I think it helped.
As I was belting out one of the songs, the thought occurred to me, This is fun! Fun? Really? My toes are swollen like little plump-when-you-cook-them-sausages. There is shooting pain when I try to walk on them, and sometimes just for fun when I'm laying still. I'm on the way to the ER and you are having fun???!!!
Yes. I was. I realized two things at that moment. The first was This is what it means to live in the moment. There were a lot of reasons for me to be unhappy at that moment. For the third time in 5 months I was driving myself to the ER alone. The hospital is an hour and a half away and the wait is always long. We didn't know it wasn't TM or MS related until after I saw the doctors and they ran tests, so the journey was important for me to make. When you choose to be alone, that means sometimes you have to be alone. I have at least three Latin names that I have collected during that 5 months, and I'm guessing there is at least one more to come. Still, at that moment in time, when I was belting out "I'm on top of the world" by Imagine Dragons, I really was. The speakers were great, the sound awesome. It wrapped me up in the experience, and that moment WAS great! I need to appreciate the value of the This moment is great more often. To not only seek them out more, but to learn to identify them. I know they are all around me, and I merely take them for granted. This is a great moment! Notice them. Savor them a bit more. They truly are Life is Good moments. Regardless of the external (or internal) circumstances waiting to bring us down again, search for, find and appreciate your This is great moments.
The other lesson that I am continually reminded of is how powerful music is. It is healing, It is cathartic. It is energy. It is love. It is grief. It is life. The power of music to touch and impact our lives is all around us. When I was a child and I was mad at my parents when I couldn't get my way, I would blast and sing along to a Mr. Rogers song "What do you do with the mad you feel". As a teenager, Foreigner's "Cold as Ice" became the angry song. As a hurting wife, there were several Phil Vassar songs that fit the bill perfectly. There were songs to cry to, Barry Manilow's "I made it through the rain" was a particular favorite in high school. The last three years as I have tried to reinvent my life in a more positive way, I have accumulated several play lists of upbeat "Be Strong" songs with genre's from Classic Rock, Country, Broadway and Pop. When I listen to them, the transformation is amazing.
My cousin recently sent me a play list filled with almost 100 songs to lift my spirits. I cried happy tears when this kind and thoughtful gift arrived, and just in time for Valentine's Day. She is a peach. Some were old favorites I had forgotten. I was as delighted to reconnect with them as I would be with an old friend. Some were new friends that I was grateful to meet. That's 346 minutes of encouragement sent from across the county. That's a lot of encouragement!
So my encouragement to you is this: Crank up the music! Don't wait until you are in the car or exercising to enjoy the music. Be as we were as children, when we let the music fill our whole being. Now I confess, sitting here in the waiting room as my feet throb (Yes, the other one has started too), it is not quite the same experience as I had in the car. But as soon as I power down the computer, I'm going to dig out the headset, hit shuffle and get engulfed in it as much as I can in a waiting room full of people who might take issue with me belting out a song. (Or maybe not, you never know, lol) I know we can't sing away every painful moment or spend our whole lives hidden in it (unless that is your career, lucky you!). Still, find your corner, choose your music and live in that moment. Find that moment of good, and then another. and before you know it you may have strung together a complete happy memory.
Once again this whole experience has reminded me to not be defined by my circumstances. What appeared on the surface to be a pretty lousy day, actually held several precious moments that brought me joy and taught me lessons. You just have to look for them. They are there.
Kristen is a former kindergarten and special education teacher with two wonderful grown children, two precious fur-baby dogs and a mischievous cat. Diagnosed with Transverse Myelitis in September of 2016 and Multiple Sclerosis in December of 2016, and Optic Neuritis in January 2017, life has changed in a big way in a short amount of time. But HOPE springs eternal as she rediscovers and reinvents life along the way.