It's all over the news, the bravery of actress Selma Blair who has revealed her "private" battle with MS. It is commendable that Ms. Blair is not hiding away somewhere dealing with this disease secretly, but the media coverage of her posing on the Red Carpet using a cane only perpetuates the stigma that living with MS should be an embarrassment in some way. Having MS is nothing to be ashamed of ever so I'm pleased to see a well known personality strutting her stuff on TV, hopefully taking away some of the stigma of using an assistive device or whatever is needed to live a full life. I feel nothing but empathy for what Selma Blair is going through but so appreciate the strength of character she's shown in order to create more awareness of this awful illness.
The WALK MS event is the single largest fundraiser of the National Multiple Sclerosis Society(NMSS) the top organization funding cutting edge research while providing ongoing support and services for all of us living with this baffling disease. I support this fundraiser every year because I'm not sure what I would've done without the NMSS when I was first diagnosed. I had just given birth to our third child a few short months earlier when a myriad of health issues started popping up including extreme fatigue, incontinence, blurred vision, heat sensitivity and numb, tingly feet and legs. After my MS diagnosis in late 1996, I continued to work at a frenzied pace while trying to ignore these symptoms as much as possible. I remember telling my boss at the time that it was taking all my effort to get my kids up, fed and out the door without expending too much energy that I would need just to get through a day of work. I got pneumonia while trying to keep up with all the demands of my busy job ending up in the hospital after I passed out at work. Everyday became more challenging as I was forced to buy my first cane to be on my feet all day. I tripped and fell on more than one occasion when I was with my boss almost hitting my head. I recall being resentful of my boss because she kept challenging me to do more when it was all I could do just to get into work most days. By early summer of 1997, I finally had enough and quit my job. After a few months to really take in my new circumstances, I reached out to the NMSS for help. By simply calling 1 800 FIGHT MS, my whole life took on a new trajectory. The NMSS sent me all kinds of material to become more knowledgeable about MS including a booklet on how to share my diagnosis with our small children. Knowledge is power and soon I felt in charge of my life again anxious to share what I had learned with others going through the same diagnosis. With the Society's help, I started a self-help group in my area that went from a hand full of women to a mailing list of close to 100 in less than a year. The group helped so many in the few years that I led it but I wanted to help others with MS on an even larger scale. That's when I decided to go back to college and get my degree in political science so that I could help advocate for critical legislation at both the state and national level for everyone with disabilities. As part of the Advocacy and Government Relations Committee for the NMSS, I helped with many laws that are still on the books to this day. And even though there are now 16 disease modifying drugs that weren't around when I was first diagnosed, the work of the NMSS is not finished until a CURE is found.So please join me in this fight of a lifetime by joining our WALK team if you're able and or donating to our team, "Don't MS With Us." Click this link to help in whatever way you can. Thank you for your help.
As all my milestone birthday festivities finally come to a close, I am still wishing for the same thing I have been for the last 20 plus years: a CURE for MS. Some years I am frustrated, angry even, at how little is still known about this debilitating disease but other years I am cautiously optimistic that the answers are right around the corner. Today I am beyond hopeful that researchers are coming closer to cutting-edge discoveries in living better with Multiple Sclerosis while we patiently wait for the day when no one ever has to hear the heartbreaking news that they too have this life-changing illness. But in the meantime, we need to continue to do everything in our power to stay positive and proactive in this fight of a lifetime because HOPE and wishes are all we have right now.
One of my very first MS symptoms was a perplexing, frustrating and embarrassing incontinence problem that took me years to get on top of. Long before other debilitating signs of this stupid disease showed up, I spent an inordinate amount of time dealing with a neurogenic bladder that made it difficult to work, shop or participate fully in life at all. I made a point of scoping out where every bathroom was located even making some questionable choices just to get to one on time. It got to a point where a train downtown to work was my only option because I had a hard time making it all the way into Chicago from our home in the suburbs without stopping at least once. When I did have to drive into the city or other locations throughout the state, I had to exit off the interstate into unfamiliar and sometimes dangerous areas just to get to a facility before the dam broke. I can't even begin to tell you how many disgustingly dirty port a potty's I ventured into during all our son's baseball games over the years. I had tried every oral medication, experimental surgery and treatment available until the FDA approved Botox injections for the bladder about 7 years ago. This is a simple outpatient procedure which should work well for up to 12 months and I'm so thankful to finally be in charge of this most basic of bodily functions.
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.