I’ve been gone from here. I tried to come back once, at the beginning, but I quickly felt frivolous and even guilty because there wasn’t time for this and there never seems to be enough time. The last four months have been blurry, only because they have been so sharp. It seemed that the fracturing shift in the ground where I stood only felt steady as a bigger shift pushed it aside, for a moment. The things that have happened and the way they happened seemed to take all of me, so much so that I have had to remind myself that I have MS. Not that my body isn’t tired and doesn’t hurt because it has and does. It’s just that all of this “shifting” has had it’s own exhaustion and pain that left me unable to think of much anything else. If it weren’t for the daily alarms buzzing from my phone, the jolts from the needle piercing my skin and the tender lumps that join the others, I wouldn’t have thought about MS enough to even follow through with my treatment.
People often say that everything happens for a reason. We can break things down into their smallest parts and find cause and effect scientifically but, when we hear this, we are dealing with the bigger, simpler picture- ourselves. Have we always done something to deserve what happens or is someone else to blame? Is there a reward or a punishment to be found that is meant to teach us something? I don’t think so. I think we choose to find meaning because, even if we feel we’re being punished, we long to understand and feel like we have even the smallest amount of control. While I have been fruitlessly trying to find meaning in the things that have kept me away, my grief, worry and anger had pushed my MS away from my intellectual and emotional self. So, while I don’t have reason or meaning to why things have happened the way they have, I have learned something. MS can be forgotten, even if it’s only for a few minutes or a few months. Before the recent events and changes in my life, I didn’t think it was possible and have felt suffocated by it for years. For me, this is good to know, even if it’s only true until It is what shifts my life and makes me forget some other part of me. This is the unreason I am choosing to take from the events of the summer because things happen and, if they don’t kill us, life continues on. For a few months, my MS was just about forgotten and, now that I know it is possible, maybe next time it will be a season of joy, opportunity or even just feeling really great that leads me to forget.
Today is World MS Day. It doesn’t feel like much to me because it was just MS Awareness Week and MS Month. There has been a lot of awareness and money raised recently and that makes me more than happy. I have a lot of friends who made facebook posts and sent emails about MS symptoms, statistics, needs, hopes and dreams. I’ve decided to take the day to try to plan my year until the next World MS Day. What I see ahead of me is hot weather, graduation, birthdays, even hotter weather, goodbyes, holidays, a much awaited fall/winter, a new year and a beautiful spring. I wish I could include something exciting or even different about my MS but I’m thinking it will stay how it is now- Copaxone, more lipoatrophy, fatigue and cog fog. Oh, and my face will be numb at least a third of the year….seriously. I know this is all really good and I should and will be grateful if this is how it all plays out. I’m just ready for a new therapy. My insurance situation is changing again and this may allow for a change but I don’t want to get my hopes up. So, I will be happy if I get to move away from injections but happy if I don’t because that means my disease is stable. I am going to embrace the heat this summer because near the end of it comes a bittersweet goodbye. I’m looking forward to the holidays and birthdays because they are always fun. I’m actually use to having a numb face so maybe I should start having my eyebrows waxed? That would be a plus of having a numb face. Always try to find a silver lining….
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.
“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!
The trial coordinator called and talked with me about a Gilenya trial. I excitedly said yes and so she added my name to her list. She told me that she didn’t see any reason I would be excluded. Of course, like always, my brain only faintly heard her words because of all the worrying thoughts that have set up camp in my head like those snot creatures you see in the Mucinex commercials. I know that before you start Gilenya you go through a series of tests to make sure everything is working right in your body, except excessive clumsiness, forgetfulness, numbness and bladder voiding. Well, I should say excessive attempts at bladder voiding because if you’re constantly going you’re not really voiding, you’re just going. Anyway, all of these things are a normal part of MS….yay team! The things they check for before starting Gilenya are heart, eye and lung problems. There may be more but this is all my brain is coming up with right now. I haven’t noticed any eye or breathing issues and my blood pressure is always low so I should be good to go. The trial should start in about six to eight weeks so, until then, I pretty much have everything crossed that can be crossed. I’m thinking positive thoughts and hoping really hard that this will happen, all while trying to kick those annoying snot creatures out of my way!