Thank You BP MS150!

It’s never too late to say thank you, right? I hope not because I am so grateful for all the cyclist, organizers and volunteers who made the 2013 BP MS150 possible and successful. I tweeted about it and I made a neat photo collage for my Instagram but I want to say more-

This is the second year a friend of mine has participated in the BP MS150 which makes it my second year experiencing it. I’ve known about it for longer than two years but I only knew the basics and that I appreciated all the people involved for doing something to help people with Multiple Sclerosis. Knowing about something and experiencing something are two different things. Seeing so many cyclist finish a two-day race surrounded by so many other excited, grateful, amazed spectators is quite impressive! It’s impossible, even when MS fatigued, to not feel so much hope. I think hope is at least part of what all those involved want the people inflicted with MS to feel from their efforts and I think it’s not only a great start, it’s really big. Awareness and funding for new therapies are desperately needed and BP MS150 does not disappoint!

So, here I am finally sending my thank you to all the BP MS150 people of 2013 into the blogosphere. It’s a sleepy, my back hurts, half of my head is numb as well as my feet, what was I saying again?, late thank you, but it’s with all of my completely normal functioning heart!

 

Good Day…Bad Day…just like everyday

I had my six month visit with my neurologist. We always talk about how I’m feeling, disease progression, insurance, next round of MRIs and what’s new in the world of Multiple Sclerosis. The good news is I’m doing really well. There are no signs that the disease is progressing and, until I have my MRI (which needs to be done by the end of the year), I will go on with this being my truth. My MS is not progressing….until it does. The bad part of the day was when the trial coordinator came in to talk with me about the trial I’ve been crossing everything for. I’m too healthy to be included. It’s strange being told I’m too healthy for anything and ,while I like hearing it, I’m kind of annoyed by it. Actually, I was really annoyed. Can’t a girl with MS get a break just because she has MS?! Actually, she can and I did. The trial coordinator left after she walked me to the checkout counter and told me to wait for her in the waiting room after I was done checking out. After about ten minutes, she came out and handed me a big bag and said a warm goodbye. I took a quick peek into the bag and without squealing, hurried out to my car. I drove home still unable to really look inside the bag. When I got home I opened one of the greatest, most appreciated gifts I’ve been given. Let’s just say I won’t be worrying about treating my MS for quite a while. So, while I often have bad days and just as often have good days, my day ended the way it usually does. I am thankfully blessed with wonderful reminders of how good things really are for me. It’s true that to see the good we’ve had to experience the bad. Multiple Sclerosis has proven to be a lesson of this principle in my life many times. I’ve decided that it will continue to do so because I will keep my eyes, ears and heart open to it.

The Ride

“Having multiple sclerosis means that you may suddenly have blurry vision. Or that your memory will fail you for no apparent reason. Or that you may not always be able to walk, let alone ride a bike. The symptoms of MS are different, and unpredictable, for everyone – the only certainty is that every hour, someone new is diagnosed with MS .

I want to do something for people who are living with MS and because I want to do everything to prevent more people from learning what it means to live with this disease. Today, there is no cure for multiple sclerosis, and with diagnosis occurring most frequently between the ages of 20 and 50, many individuals face a lifetime filled with unpredictability.”   Phil Keoghan

Since I have cyclist on the brain and very much in my heart at the time, I thought I’d share Phil Keoghan and his film The Ride. The Ride is about cycling, family, friendship, endurance, heart and Multiple Sclerosis awareness. I can’t say enough about how impressed I am with Phil Keoghan and what he has done in this film. I found myself laughing and crying while learning about the sport of cycling. Phil allowed us into a part of his personal life as he rode for a personal part of my life along with so many others who suffer from MS. By the time the film ended, I felt like I had a friend. When I see him here and in interviews where he talks about his involvement in helping those of us with MS, I see someone who truly cares and is passionate about helping.I am a fan of the film, the man and of course The Amazing Race. Thank you Phil Keoghan!

Thank You BP MS150!

Yesterday, I went with family and friends to see the BP MS150 cyclist finish their two-day ride from Houston to Austin for MS. Texas heat, strong headwinds on day one, MS awareness, 13,000 cyclist, 150 miles and millions of dollars for Multiple Sclerosis research. It was amazing to watch so many of these generous people ride pass me to the end of their journey. My journey continues and, thanks to all these men and women, it continues a little easier. The money raised is vital to the MS community. Beyond finding a cure, there are many therapies still needed. Treating symptoms of MS gives patients a chance for a better life. Pain and fatigue can often be debilitating. Foot drop, vision problems, vertigo and a wide variety of neuropathy can also stand in the way of basic function. Right now, there are only eight disease modifying therapies available and they all have side effects which are not well tolerated. Hopefully, everyone with MS can find one that they can handle. We need more options and we need to be able to afford them. Money raised yesterday will help to do that. I was able to thank a friend who rode and I’m hoping that everyone who rode along with him know how grateful MS patients, including myself, are to each and every one of them. Being there and seeing it was just what I needed when I needed it most. My faith in humanity has been renewed. There are good, selfless, generous people out there….at least 13,000 of them! Thank you!

Christmases

Everyone reminisces and daydreams. Today, along with everyone else with a disease like     MS, I’m thinking about Christmases of yesterday as well as trying to imagine my Christmases in the future. I’m trying to balance my emotions and especially my fears. When I think of Christmases in the past I’m left with not only smiles from the memories but regret because I’m sure I could have appreciated it all more at the time. When I imagine my future Christmases I immediately fret about the scary possibilities. Fortunately, I almost immediately have excitement for how it can be. I could still be relapse free and even better I could be symptom free. It seems like as soon as one new therapy is released talk of three more is all the buzz. This is a gift indeed. As the story goes I will too. I can only react to today and by realizing all that is good, even with my MS, I am laying the groundwork for merry Christmases to come as well as seeing my past Christmases through a rosier lens. Despite my MS, I am truly blessed. Merry Christmas!