Tuesday, June 10, 2014

New Information

Warning, this is neither couch nor athlete related, but instead Sarah related.

I promised myself that this blog would NOT be MS related at all. The reason? As I have mentioned before, my MS is only a sliver of my life that will change shapes and sizes throughout my life, but it isn't my entire life, however right now that sliver is a little bigger than I would like.  Also, I'm only an expert on my body and my MS. I don't have anything to offer other people regarding their MS because I am not inside their bodies, and you really wouldn't understand this statement unless you have a chronic disease that is mostly invisible to other people. When you say you are fatigued, tired, numb, feel like energy is pulsating throughout your hands/feet/back, people tend to not understand. When they see you walking around with your cane after a run, or stumbling into a wall, then they kind of get it, but also wonder why you weren't doing those things the last time they saw you.

Well folks, that is Multiple Sclerosis for you; 100% unpredictable, yet totally predictable.

I have been obsessing lately, and so I need to let it all out so that I can quit it! It is never a good thing to obsess over anything, and reside within your own head; at least for the shy extrovert in me. So here goes nothing.

One year ago, last week, I was diagnosed with Multiple Sclerosis. What the heck does that mean? Yeah, I still really don't know, because as Sue pointed out to me, the only difference between today and yesterday is that I have more information. That is still true... And so much more!

So last year, I was freaked out because I understood that my body was attacking itself and no one knew why. You know what has changed? I'm not freaked out. I still understand that my body is attacking itself, and I still know that no one knows why.

Last year I learned that I had to give myself a daily shot, and I was petrified and did not have any interest in sticking a needle in my body. Interestingly enough, I also thought that there was NO way in the world any person could forget a shot!!! This weekend, I was pointing out to my friend that, last year, I used to get so worried about bringing my medicine everywhere on the weekends, I traveled around with a cooler in my car to keep it safe, and I would never leave home without my injector and the proper resources to give myself my shot (ie. alcohol pads). You know what has changed? Giving myself a shot is now not a chore, except for the fact that I need every resource around to remind me to take it, and I'll often be found walking out of my house with a lone syringe in hand and none of the 'necessary' accompaniments because I give myself my shot freehand, and I always think I have extra supplies in my car/desk at work/shoulder bag.

Last summer, I cried almost every day and wondered if anyone would ever want to be my friend again because all they would see is this girl who was going to slowly deteriorate to a wheelchair bound person. You know what has changed? My true friends are still around, some even closer friends now. I still know how to make new friends, which I recently learned, and they approach me with curiosity and interest. My newest friend has really been a blessing because it is like she didn't even hear me when I mentioned my MS in random passing. I actually made a bigger deal about it than she did. On top of it, my closest friend, Sue, ignores my MS so much so, she doesn't even let me blame anything on it, and reminds me that I can do whatever I want! Oh and she challenges me to do it better every time!

If you recall, one of the most infuriating symptoms I was experiencing when I first started doctoring for my mystery problem was the face spasm-ing. If you have never had something spasming in your body, you wouldn't necessarily understand the frustration that goes along with a twitching finger, or twitching face. Let me try to explain though. Ever have a fly buzzing in your ear, and you try to swat it away, only for it to come back. Oh and imagine this fly NEVER leaves and you can't catch it, but every once in a while it stops buzzing for a few minutes, just to come back minutes later. Yep, that is spasming. You know what has changed? I have treated that symptom, and I will never again take for granted a calm face.

Last year, my family was concerned about my well being. Well that wasn't just last year, that has been my entire life, but last year I really understood what having an amazing family like mine really meant. You know what has changed? Nothing at all. They are still the most amazingly supportive family. They love me and pick me up, day after day... Sure they get mad at me, but offer me the exact same support that I have been lucky enough to have had since birth.

Last year, I thought my life was over as I knew it. You know what has changed? I learned that statement is true. Afterall, every day we wake up, our life is over as we knew it yesterday, because today is a new day with new adventures. How cool is that. I can hit the reset button every morning and make different choices today, if yesterdays choices didn't work for me.

I could probably write entire chapters on each of these topics and many more. I'm not going to. What I am going to say instead is this... This has been one hell of a year. I have watched people lose friends/family, have babies, I lost my dog, got a cat, celebrated crossing the finish line of a half marathon and half iron man. You know what has changed in the past year? Nothing truly significant, I just have new information...


  1. Thank God and Amen!

  2. I'm hormonal, so this post made me teary. But, in a good way. I loved this post and you perspective.