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!
Today is a day that is really important to me. As a woman, a mother and a Multiple Sclerosis patient there are important issues that will drive me to the ballot today. First, it really wasn’t that long ago that women weren’t allowed to vote in The United States so not doing so, in my opinion, is disrespectful and sad. There are also a lot of women’s right issues being considered by both candidates.
As a mother, I want the college education that my children have earned academically to be affordable. There is talk that the interest rate on student loans will go up depending on the victor of the day’s event. I don’t know how our country can be better if our children don’t get good educations. We want to be industry leaders in science and technology yet we don’t want to make the decisions and sacrifices to get there. It benefits us all no matter whose child figures out the next big thing or a bunch of not so big things. I’m willing to pay into that.
Lastly, I hate to ever say that I like someone having MS but the fact that both President Obama and Mr. Romney have been touched by this disease through family members gives me hope. Unfortunately, my hope seems to be getting suffocated by all the bull. First, our system of government makes it hard for things to really change. Our healthcare system is badly broken and the changes that need to happen will become victim to the people we elect to change them. The President’s family member with MS has passed on so I can’t say for sure if he really sees and knows the burden that MS puts on those inflicted physically, emotionally and fiscally. Mr. Romney’s wife has MS and so I’m sure he’s seen physical tolls of the disease and I hope he has tuned in and acknowledged the emotional struggles. I’m going to assume he has. Where Mr. Romney loses me is the financial stress and burden of MS. Being rich and having MS is a whole world of different from even being middle class and having MS. Trying to compare and truly see the space between the rich and the poor with MS takes me past anger to genuine despair. I’ve been denied insurance twice since my diagnosis almost four years ago and denied medication coverage twice while having insurance. Even when things have been at their best and I’ve had both insurance and drug coverage my copays have been ridiculous. My disease modifying medication costs $43,000 a year. Add MRIs, doctor visits and other medications and you can see that MS isn’t cheap! Our savings account has dropped over 50% in just under four years. Too bad there isn’t a light at then end of this tunnel and too bad that while people argue points that pander to one of the two political extremes people, like me, are trying to keep their balance, squelch a headache and keep some body part from going numb due to the stress of changes that needed to be made yesterday. Still, I honor my right and I do choose to believe that what I am doing today will help the future to be a little brighter, even if it’s only instilling the importance of it all in my children.
There’s a show on TV called Hoarders and it’s about just that, people who keep so much crap in their house that they literally can’t get into rooms and sometimes even find dead animals buried beneath the plethora of….everything! I’ve been thinking a lot lately about hoarding. What do people keep and refuse to give up and why? While I am not a hoarder of things, I’ve recently realized that I am a hoarder of unnecessary emotions. There are too many things I care about that I really shouldn’t. I know that stress isn’t good for anyone and with MS you physically feel stress and that can actually be quite scary at times. I know this intellectually but the hoarder in me can’t help itself. I carry so many feelings of worry, doubt and frustration that’s doing nothing but making my face numb, my toes burn, my mouth forget how to say words and my legs wobble- equally embarrassing at times as frightening. Some of the emotions I’m hoarding have to do with my MS but most of them have to do with really ridiculous things and people. I really frustrate myself sometimes! So, I need to clean house so to speak and give myself room to feel better, sleep better and smile better. There are things worthy of keeping, some forever and others for only a period of time. There are also things that should never be allowed in your head and heart and some that only need to be there for a while. The first step is always recognizing the problem which I have. Now, I need to devise a plan to throw away a bunch of crap….for good.
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.
I think it’s safe to say that people with MS are always looking for ways to feel better. Pain, numbness, memory problems and especially fatigue can be debilitating at times and always annoying. There are several medications to help with MS symptoms and they can be quite effective but, before I take that leap, I’m going to try the hard way first…..I’m saying goodbye to sugar. This is going to be extremely difficult for me because sugar is highly addicting and I am a self-proclaimed, hard-core sugar junkie. I not only love the stuff and all the pretty, fluffy, decadent ways it whores itself out to me, I crave it daily. I’ve been told and have read several times that sugar can increase MS symptoms, especially fatigue. I want to feel better than I do now so I’ve decided to take the plunge. I’ve started with only a little sweet creamer in my morning coffee and a little agave in my oatmeal. I’m sure to a lot of people this is still a lot of sugar, especially to someone who has taken “the plunge”. Well, for me, this is a huge change! Next week, I’m going to be completely sugar-free with my coffee. Harder, will be eating my oatmeal plain. I don’t like the taste of artificial sweeteners and don’t think they’re very healthy so that’s not an option for me. My hope is to get to the point where sugar is a rare indulgence. So, here I am, saying/writing it out loud, putting myself in the spotlight and hoping that this will help me to stay the course. Wish me luck and I’ll share this part of my journey in case it’s something someone else is either considering, doing or has already done.