The 2019 WALK MS event is a week from today and I'm overwhelmed with the outpouring of support coming our way. As team captain of what will most likely be the largest team at our particular site (45 right now but growing daily), I feel like I've taken on a full time job but one I absolutely love doing. I spent 20 years before I was diagnosed with MS myself managing multiple retail stores and hundreds of employees leading them to generate higher profits for the companies we worked for. Back then my motivation was a paycheck to take care of my family but now I'm driven by an urgency to fund critical research that will ultimately lead to a CURE for this disease.I'm encouraged by the new breakthroughs in disease modifying medications but won't rest until MS is completely wiped out.
If you are able, please join in the momentum of the MS movement by joining our team either in person or virtually, donating to our fundraising efforts or by just keeping us in your thoughts next Sunday as we walk and roll towards a world free of multiple sclerosis.
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We spent this last weekend with our adult children and grandchildren in Minneapolis celebrating Passover and Easter. Our daughter that lives there converted to Judaism last year ad she and her husband hosted a Seder dinner for 25 of us. Seder dinner is a sacred ritual feast that marks the beginning of the Jewish holiday where family and friends gather to read the text of the Haggadah, the retelling of the Exodus from Egypt. I'm not sure if it was the required consumption of 4 glasses of wine before we ate or just the overwhelming joy of being with my family but I was very emotional as we all took our turn reading our part of the script. I was struck by the inclusiveness of this ritual where everyone who may feel like an outsider in this world is recognized as an important part of our society including the disabled, a club that I now belong to. There are times where I do feel invisible and other times when I wish I were invisible. At dinner the night before Seder, I tripped and fell walking to the table. I was so embarrassed I just wanted to disappear but my son quickly picked me up and got me to my seat as all the other restaurant patrons looked on in pity. I fall quite often these days as I stubbornly fight to stay out of a wheelchair but I hate it that my family worries about me so much. I can deal with the pain and embarrassment of my situation but I really wish that my kids especially could be spared the helpless feeling of seeing their mom's health decline. The upside of growing up with a disabled parent is that our children have all turned out to be the most responsible, caring and loving human beings and that is something MS can never take away.
I read an article today that said it's rude and insensitive to tell someone that they don't look sick when you learn they have MS. Well I'm here to tell you that I don't mind hearing what people are honestly thinking especially if what they are thinking is that I don't look ill. I know it can be frustrating for some with MS to be judged on how they appear on the outside when they feel so crummy on the inside but I for one will take positive feedback on my appearance anytime. I come from a long line of proud, confident women who take pride in how they present themselves to the world. My sweet grandmother who couldn't even recognize her own children at the end of her life would make sure her lipstick and hair looked good when she received company at the nursing home. Maybe it's a southern thing but I appreciate a compliment on my appearance especially now when it takes more effort and energy just to put on nice clothes and wear make-up. I may not be able to control what this disease has taken away from me but I am still in charge of the way I present myself to the world and that feels empowering.
Multiple Sclerosis is different for everyone but it's the kind of illness that can also be different day to day for the individual who's living with it. Yesterday was a good day, made even better with beautiful, warm weather, lunch with my husband before a little shopping and then coming home to a clean house. But as often happens with MS, I'm back to reality today. I woke up with vertigo but the medication for it knocks me out. I slept the morning away missing yoga and all the other things I had planned to do. When I had relapsing remitting MS, the bad days were few and far between. Now that I have moved into secondary progressive MS, the good days don't happen as often forcing me to make the most of the time when I do feel "normal." I always equate having MS to floating peacefully on the ocean but the minute you start feeling confident that you can reach the shore, a big wave comes crashing over you leaving you breathless and discombobulated. It takes constant paddling to stay abreast of this disease but you can't stop swimming or it will take you under, that's for sure.
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.