Constant self criticism doesn't create an environment where your body can heal. I know this from first hand experience because I spend so much of the day everyday listening to the negative self talk in my head. I try not to let my disability hold me back in any way but by doing so I can ignore some of the physical signs that should be a warning that I have pushed myself too hard. This is the time of year when you want to spend as much time as possible outside but the heat and humidity can severely aggravate my MS symptoms so I try to stay inside under the air conditioner. But most days, rather than accept this reality and to avoid being seen as different, I have a tendency to ignore my physical limitations to "fit in." By being more concerned with other's perceptions than with taking care of myself, I continue to live in a vicious cycle of abusing my body, becoming fearful at my loss of function and then creating these worse case scenarios in my head. We all can do a better job of listening to our bodies instead of our heads, especially me. A good reminder for me when I am especially self critical is to remind myself that I would never treat a sick child this way so I need to be kind to that "inner child" and honor my limitations.
We have very few occasions in life to be truly inspired so getting to spend time with Notre Dame Women's Head Basketball coach Muffet McGraw and her amazing staff and players was truly a once in a lifetime opportunity. On Friday my daughter, two granddaughters and I drove over to Notre Dame where our 6 ft. 7 in. niece Sedona Prince is being recruited. After touring the beautiful campus, we were invited over to Coach McGraw's home for dinner, team building games and what turned out to be lots of laughs. What thrilled me most about the evening other than seeing Sedona so happy was to witness the actual moment when my granddaughters got to meet a coaching legend and one of the most influential feminists of our time. It may not sink in until they are older but having strong female role models who make no apologies for being successful at what they do will inform them for years to come of the importance of following their dreams in life. My sincere wish for them as they grow up in this male dominated world we live in now is that they are inspired to go after all their goals in life while never, ever feeling inferior to their male counterparts.
I’m siting here at Metro Imfusion getting my yearly dose of steroids. I don’t love the bad headache and sleepless nights that always come along with this 3 day dose of powerful medicine but I really appreciate the extra energy that accompanies it. I have to go off the disease modifying medication Ocrevus that I’ve been on for almost 2 years so as much as I dislike steroids, I’m out of other treatment options. Life is not slowing down so neither can I.
With Father's Day weekend approaching I can't help but think about my own Dad who's been gone for 19 years now. I had only been diagnosed with MS for a short time when he passed but he was devastated when I initially shared the news with him as most fathers would be. Like many of us 22 years ago, my Dad's only point of reference for someone having MS was Annette Funicello who was wheelchair bound by the time I was diagnosed. I think my Dad would be proud of the way I've navigated this disease over the years but as much as I miss him, I'm relieved that he doesn't have to see me on my bad days now. As a parent of young adults myself, I can only imagine the frustration and helplessness he would probably feel by not being able to "fix me." My Dad died suddenly of a heart attack but I often wonder if his cause of death wasn't really a broken heart from witnessing his oldest child battle a baffling illness which there was and still is no cure for.
Breathing should be something that comes naturally but we all forget how especially when we're stressed. When I'm pushing myself in physical therapy or even working hard at the gym, I find that a quick reminder to breathe makes whatever exercise I'm attempting easier to accomplish but at home there's no one to call me out for not breathing properly. This is exactly why I've found meditation so incredibly helpful in starting my day off on the right foot. Anxiety can be debilitating for me at times but simply taking slow, measured breathes can instantly lower my heart rate while putting everything in perspective. There are so many really effective meditations at our fingertips but I really enjoy the soothing voice of Deepak Chopra. Even though it should be a no brainer, don't take breathing for granted like I did for way too long.
After years of experiencing "invisible" symptoms of MS the good news is that I no longer have to deal with the dirty looks and nasty comments that came my way when I chose to use my handicap sticker outside a restaurant, store or any other destination. There were plenty of days where I might have felt strong enough to get into a place but knew that exhaustion could come on fast and getting back out to the car would be challenging. I will never forget the time that my oldest daughter and I parked outside a movie theatre and a rather nasty man confronted us about parking in disabled parking. I was already used to these kind of comments by then but my daughter went into full-on attack mode, fiercely protective and keenly aware of my daily struggles. The bad news is that scenario rarely happens these days as I am obviously disabled but as a public service announcement, I want to remind readers not to be so quick to judge another person because you never know what they are dealing with. Funnel that concern you have that someone might be cheating the system into more productive action like volunteering with organizations that help the disabled or elderly.
While cleaning out the garage I came across a bin full of pictures and videos from the days of the CURE MS Foundation, a 501c3 nonprofit that I created from the ground up in 2008. I had joined the National Multiple Sclerosis Society, Greater Illinois Chapter's Board of Trustees the year prior quickly recognizing a need to hold a fundraising event in the suburbs since everything else seemed to happen in the city. I had a vision to create an organization to address the needs of people living with MS along with their friends and family who wanted to get involved in the MS movement closer to home. I also believed it possible to reach a broader audience in our fundraising efforts if more affordable affairs were made available. Initially, I was on a mission to prove that we could create a more cost effective way to throw a really nice dinner with entertainment well under the $500 to $1000 a plate events the MS Society typically host. As with anything you put all your energy and focus into, the CURE MS Foundation grew rapidly providing up to 5 or 6 events a year for people to get involved in including women's luncheons and fashion shows, golf outings, 3rd party scrapbooking, skydiving, and . pirate parties and our signature galas. None of the success of our foundation would've been possible without the support of so many kind volunteers but after 5 years of trying to keep up with the growing demands of what had turned into a big business, sadly I had to close the foundation down in 2013. Even with all the help from my friends, family and generous volunteers, I had to make a tough decision. Although we were raising desperately needed revenue for and awareness of the plight of people with MS, ultimately my own health was suffering. It's amazing to me now that I not only survived but thrived during this very demanding period of my life. I am beyond proud of the impact CURE MS Foundation made on both the MS community and a woman that thought she had no use to society anymore.
I have a confession to make. I did exactly what I promised myself and all of you that I wouldn't and got myself so wrapped up in life that I ignored my health for a bit, a dangerous proposition when you have a disease. Even one day without adequate sleep, nutritious food, meditation and exercise is enough to throw me off course but I pushed myself to exhaustion and I paid for it. I got up yesterday after just very minimal sleep feeling anxious and unsure whether I should even go out. I made it through a very busy day heading to bed early and woke up with a whole new attitude. I refuse to let outside stressors derail me from what's really important from now on. As long as I stick to a rather regimented schedule that includes lots of self care I know I'm going to feel better and everything else will fall into place in it's own time. I'm my own worst enemy most days but I need to stay focused on what's important: staying as healthy as possible so I can keep living my best life.
I'm not sure why I had such a visceral reaction to the video below, immediately breaking down in tears when a friend posted it on Facebook after the recent WALK MS. I don't know this woman but boy can I relate to her determination to cross that finish line on her own two feet. I feel so many emotions watching this: guilt for not trying to walk the last few feet at the WALK event myself, pride in her resolve to complete this challenge with the help of her husband, and sheer joy at the crowd's clapping encouragement. It's also not lost on me that the word FINISH is so prominent in this video because all of us living with MS will keep plugging along until there is an END to this disease that has taken so much away from us and our families. Each agonizing step this woman took is a reminder that we're one step closer to a CURE thanks to all the people who give us hope and love on this day and all year long.
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On this Mother's Day weekend especially, I am so grateful to still have my mom when so many of my friends have lost theirs. I am especially blessed to still have my mom's sister, our feisty Aunt Donna, who has always been like a second mom to me and my siblings. My whole family worries about me since my diagnosis with MS but no one frets as much as my dear mom and aunt do. Being a mom of 3 grown children myself, I realize that you never stop agonizing over your kids no matter how old they get. Throw a debilitating disease into the mix and the angst is multiplied tenfold. I really wish that my health issues would not cause my mom and aunt even one minute of sadness because they both deserve nothing but happiness in their golden years. Their love and support mean everything to me so I don't want to imagine a world with them not in it consequently I will spend this Mother's Day and hopefully many more being thankful for the amazing matriarchs in our family.
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.