Anyone who has daughters knows it can be challenging especially in the teenage years. Fortunately our two daughters have grown up to be accomplished, lovely and responsible adults despite the baffling push-pull dynamic that so many mothers and daughters experience. I remember a time where our daughter was horrified at the thought of me coming to watch her cheer, afraid that I would embarrass her if I tripped and fell in front of all her friends, always a very real possibility when you have MS. I didn't take it personally because most of the other mothers I knew were going through the same issues with their adolescent daughters. I read many books on the subject including, "I'm not mad, I just hate you" by Roni Cohen-Sandler and Michelle Silver which helped me get through this difficult transition.This weekend was a full circle moment for me though when rather than be ashamed of her mom's disability, our daughter was begging me to stay late and dance at her best girlfriend's wedding reception. I needed my scooter that night so I bowed out but was sincerely touched that she still wanted me around, not caring what anyone else thought. Although this disease has impacted our family in many ways, I'm ultimately grateful that we've raised resilient and compassionate children and oddly enough, I have MS to thank for that.
As I sit here at the Infusion Center getting my first full dose of Ocrevus, the newest disease modifying medication for MS, I’m cautiously optimistic that I’ll be feeling much better soon. I’ve been running on empty all summer, in need of a tune up. I always tell my husband when he complains about the money I spend on self care and my health, I’m like an old, classic car that needs constant maintenance to keep running properly. I’m definitely out of gas right now and am hoping that these new meds will make me feel like myself soon. Just like a vintage automobile going to a car show, I have places to go, people to see and although I may look pristine on the outside, what’s going on under the hood is just as important to running smoothly for years to come.
I've always had a love/hate relationship with prescription medications. When you have a disease like MS, pharmaceuticals are unfortunately a necessary evil. There are currently 15 disease modifying drugs (DMD) approved for this disease and I have tried many of them only to develop unbearable side effects every time. One week from today, I get my first full dose of the latest DMD, Ocrevus. I have mixed feelings about this twice a year infusion, excited to be doing something to keep this disease at bay but nervous that I will have a bad reaction. It's a real Sophie's choice but ultimately I have to face my fear, trust that this medicine will help and deal with any side effects as they come. Everyday is a fight to get and stay healthy but I've never shied away from a challenge because I am an MS warrior.
After our youngest went off to college, my husband and I seriously considered downsizing to a smaller ranch style home because stairs were getting difficult for me to navigate but after this last busy holiday weekend, I'm once again reminded how nice it is to have the extra room. From July 4th through yesterday we hosted family and friends from near and far for what seemed to me like an endless celebration. There was family in from out of town to attend our daughter's wedding shower so there wasn't a room or couch in our home unoccupied at one point. It's eerily quiet today as I write this but in a few short days, the house will be buzzing again with excitement and we wouldn't have it any other way. I have a sign in the bathroom that reads "LOVE makes our house a home" so my hope is everyone who visits here will always feels that love.
Although there are always so many fun parties and events in the summer, it's my least favorite season of the year. The heat always zaps my already limited amount of energy making all the outdoor activities less enjoyable and more stressful. This summer has been an especially hot and humid one and always on the weekends or maybe that's just when I notice it the most. I end up staying inside the air conditioned house while everyone else enjoys the outside festivities. The 4th of July is always a party around here because it's my husband's birthday so there will be family and friends in and out all day and night until after the fireworks show down the street. I have to remind myself of the advice I give to anyone else who dreads the excessive heat, stay hydrated, cool off when you need to and enjoy this time because you'll never get it back. Happy birthday to my husband and the good ole U.S.A.
Hello World. This is a blog we created to give any one affected by MS in any way a constructive way to communicate with others going through the same challenges.