,I wanted to participate more in all the Memorial Day festivities this past weekend but the record breaking heat prevented that unfortunately. As with most people with compromised health, I am incredibly heat sensitive meaning that all my symptoms become worse. When I'm overheated, my heart races and my body tingles all over which might sound like I'm falling in love but I assure you, is not the case. The fear of feeling worse keeps me from truly enjoying outside bbq's, swimming and all the other fun summer activities at times. I watch the weather closely and plan accordingly but don't want to miss out on all the excitement so I push myself out of my comfort zone and into the blazing heat as much as possible. I know summer has not even officially begun but I am already looking forward to the cool, crisp days of Fall.
I've talked about the importance of exercise before but this new, groundbreaking research is yet more proof of how critical it is for people with MS: https://sciencesources.eurekalert.org/pub_releases/2018-05/f-lei051718.php.The findings in this article pose the age- old question of what comes first, the chicken or the egg? In the case of people like myself whose MS impacts their leg strength.: Is my weakness due to not enough weight-bearing exercise or has MS caused my legs to atrophy to the point where I've lost critical muscle mass making it much more difficult to do enough leg exercises to regain my mobility? I've always equated this disease to hard-hitting ocean waves....you can be floating along on the surface for awhile keeping the symptoms at bay but then another wave comes along leaving you gasping for air. The lesson here for me is that I need to keep paddling regardless of the undertow if I don't want to be pulled under the water.
I never quite understood why people say that I am an inspiration to them but now I finally get it. I don't believe that I'm particularly heroic in any way because I take what life has given me and make the best of it but then I met a special woman last week that takes my determination and tenacity to a whole new level.. She has MS and is completely wheelchair bound unable to even transfer by herself but she doesn't let that slow her down in any way. She had just come back from Florida where she waterskied and did other outside activities with some accommodations of course. What impressed me most though was her positive, can do attitude toward life. Even with all her medical issues, this woman was determined to stay involved and active. She stays too busy and engaged in life to wallow in self pity. Positivity is contagious and this woman inspires me to not let disability stand in the way of anything I want to do.
This has always been my mantra and a trait I really admire in others. Basically I believe that talk is easy but actually living the life that truly reflects your beliefs is a much more difficult path. One of the best examples and role models I have is my sweet Aunt Donna who has a birthday today. She is selfless, kind and sees the good in everyone.always.. She has a strong faith exemplifying what it means.to be a Christian by her daily mission to help others in whatever way she can. Life has not always been so easy for her but you would never know that by her sunny disposition. Most people want the world to be a better place but Aunt Donna walks her talk spreading love and joy to everyone lucky enough to know her.
It's been almost 8 years since I jumped out of "a perfectly good airplane" for a Skydiving for MS fundraiser my friends Dave and Ceil Perez organized and hosted every year. Each time I get scared about some medical procedure or about some other silly thing that I have no control over, the memory of this day comforts me. I figure if I can propel myself off a plane at 10K feet up, I can probably do just about anything at this point. There's a video of me somewhere out there where the interviewer asks me after I jumped if I was afraid of skydiving and to paraphrase, I say "This doesn't scare me as much as the day to day unknowns of living with MS." I still believe in this sentiment today but it's nice to have this recollection in my back pocket for the times when fear threatens to derail me.
Motherhood can be lifetime of aggravation , worry, sleepless nights and in my case, yelling, but the pure joy and pride your children bring you is worth everything and anything they could ever throw at you, in my opinion. Our kids are all grown up now but that doesn't mean I don't still think about them just as much as when they were little. In fact, I have a tendency to obsess even more today as a mom because I don't see them as often as I'd like. I know I'm blessed because they all turned out to be such amazing, responsible and caring adults. Our oldest was already 18 when I was diagnosed with MS so her upbringing with a young, workaholic mom is totally different than the life her younger sister and brother experienced. But our kids all have one thing in common which I wish they didn't; the pain, fear and uncertainty of seeing their mom deal with the daily challenges this disease can bring. My Mother's Day wish this year and every year is that there will be a cure for this disease soon so a whole new generation of children don't have to go through what they did.
Yesterday was the annual NMSS WALK MS in St. Charles and although I didn't get a chance to fundraise this year, I did get up very early to volunteer at registration. It turned out to be a gorgeous day to be outside made even better by being around so many people working towards the same goal, to end MS in our lifetime. Once again, I’m reminded that MS is something that affects the whole family as my daughter and granddaughters were out there pitching in right next to me. It's always a humbling experience to be surrounded by both loved ones and strangers dedicated to making a difference in the lives of those of us living with this disease. I am so grateful for everyone who raises awareness and money for the National Multiple Sclerosis Society as it is critical to funding important research for the future while providing important resources for the day to day challenges so many with MS live with.
As I'm finally getting over the jet lag from our recent trip to Italy, I can't help but be so incredibly grateful for this once in a lifetime opportunity to experience a totally different culture. Three years ago we hosted an exchange student from the very southern Italian province of Monopoli on the Adriatic Sea and have been anxious to visit her since she left but a trip of this magnitude takes so much preplanning when you have a disability. My husband made sure our accommodations were accessible and had air conditioning and the car we rented would fit my scooter and all the luggage we brought but other than that, we weren't sure what to expect. The first obstacle we encountered in Munich was that the plane to get to Italy would require me to climb many stairs. I suppose they would've carried me if necessary but I was determined to be as independent as possible. Once we landed in Bari, Italy, the next challenge was finding our rental car and navigating our way to Monopoli not understanding the road signs or the rules of the road which we quickly discovered were nonexistent. There are stop signs, speed limits and merge signs but no one seems to pay any attention to such arbitrary authority. Our first goal was to make it to our final destination in one piece and thanks again to my husband, we did. We had rented a nice, new 2 bedroom apartment with a large balcony overlooking the sea. Once we got settled we went to dinner with our Italian exchange student and her family. We quickly discovered that cena doesn't start until at least 9 or 10 at night and with 5 or more courses, can go until way past midnight and way past my bedtime. We spent the next day seeing all the local sites including the beautiful apartment our Italian daughter lived in. The views of this historic Italian town on the sea were breathtaking from every angle of her 4th floor walk up. The elevator was tiny so I couldn't have taken my scooter which proved to be the case with many of the buildings and sidewalks in town. The streets were narrow, cobblestone and for the most part absent of any curb cuts so getting around was a challenge but we made it work somehow, There was absolutely no parking available so we started walking or rolling everywhere giving us a real sense of the daily life of the locals. We also spent a day driving 3 hours north to another seaside village of Vasto where my husband's cousins live. They didn't speak much English and we didn't speak much Italian but again we made the most of the visit while really experiencing a totally different lifestyle. This might be an observation unique to southern Italy but we discovered that all the shops and restaurants closed everyday between 1 and 5 so we adjusted to this laid back atmosphere accordingly. Overall, we had a magical vacation in Italy despite the difficulties getting around. I may not have made this long trek to such a foreign land had I known in advance all the obstacles that would lie ahead but I am so glad I took this leap of faith.
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.