About eleven days ago, I began the following post (below in italics ~ we’ll get there). I wasn’t sure I was ready to face the real truth of what was going on, but throughout my life, I’ve found writing to be an excellent outlet. I wrote that day ~ but faltered, and haven’t been able sit down and write again. Until today.
Now, as I sit on my couch, drinking gluten-free beer and watching “Grumpy Old Men,” (is there a better combination to combat life-altering news? I think not!) I am contemplating the idea that this moment, this information ~ it offers me a path. Now, the path would not have been obvious had a doctor not told me matter-of-factly at about 1.45pm that I have a non-curable chronic disease ~ but pish posh, right? Can’t turn back time ( although I do love Cher’s song contemplating the options if one could).
If you can’t tell, I’m a little punch drunk, and a little bit loopy. Deservedly so, I say, having spent the better part of 2013’s early days in and out of doctors offices and diagnostic testing. At least now its been said ~ it’s done. And I can take that information and run with it.
Folks, I have multiple sclerosis. Fact. January 21st, 2013 is the first day of the rest of my life. I do like the number 21, so I’m okay with it, I guess. Always looking on the bright side ;)!
I had this moment today ~ when I called to schedule my follow-up appointment following my most recent round of MRIs ~ that I thought maybe the same news would come that came in July ~ no signs whatsoever of any lesions. In retrospect, that was probably fairly wishful thinking (the symptoms have been much more intense for the past three plus weeks). But if we can’t be wishful and hopeful, what’s the point?
So, eleven days ago … I wrote this.
“So, here’s the thing. Yesterday, when my home nurse was visiting, she pretty much distilled what’s going on in my life down to one sentence. She said, ‘After the sadness, and the anger, and the feeling-sorry-for-yourself feelings pass, remember that it’s a life-changing diagnosis, not life ending.”
And even in the microcosm of yesterday, when my mind raced up and down the mountains of possibilities and fears and all manner of other things, that one sentence was worth remembering. And remembering often, and with conviction.
When multiple sclerosis was first mentioned as a possibility, back in July (remember that month? yeah, it sucked), I wasn’t really ready to admit the truth of it. I was completely convinced that my case of optic neuritis was one hundred percent not a pre-cursor for MS. Naive, perhaps. But I think anyone who receives what feels like, and on many levels is a pretty dire health diagnosis has to work through the denial and the fear and all the other feelings that come bubbling to the surface of your conscience.”
So I got stuck after that, because there was no end, no neat ribbon to wrap things up with ~ no pithy or witty thoughtful query.
It was true, and raw, and real and … well, scary.
I googled MS and read some really not uplifting stories of other people who thought what I did ~ my eyesight was a detached retina, nothing was wrong with me, I was healthy … etc, etc. etc. And over the past eleven days, as I geared up for the inevitable diagnosis, I began contemplating how I was going to choose to deal with my new life path.
So far ~ and I’m not far into this at all ~ but, so far, I’ve felt a little bit alone, and as though while everyone has a friend, or knows someone (and thinks I should talk to that person/call/consult, etc) ~ the people who are writing about their experiences are less than upbeat. (** Sidenote, I am not the most tech savvy or google-happy person out there, so I guarantee I have not read it all, or even close … Sidenote x2 ~ Montel Williams information was by far my favorite and most encouraging to find).
And I get it ~ when I started to lose feeling in my feet (amongst other, not-ready-to-share issues), and then slowly realized that getting it back would not occur with a magical pill ~ it was highly discouraging. And the truth is ~ from the little I have learned ~ MS is pretty unique to each person. Everyone’s symptoms and cases are individual and manifest per person. So no one’s story is going to answer my questions, or completely assuage my fears.
I said to my mum on the phone today ~ for a person like myself who has always existed in a black and white world, it’s wildly ironic that I got a disease that exists only in the gray area. I want rules to follow ~ I want a sequence of steps that will cure things … but MS doesn’t work like that.
Having an answer ~ even a very dreaded answer ~ eases some of my anxiety but it opens up the door to the unknown. How will my life change ~ what are my next steps? My neurologist gave the man and I a stack of information on various drugs that we have been tasked with researching and exploring before our next appointment. I’ve already decided the one I like (packaging is everything ~ and whoever did the packaging for my new meds definitely knew the way to this girl’s heart … haha! I am certainly not going to choose life time medication via packaging … but it does give one an edge!).
What I’ve been contemplating is that documenting this journey ~ beginning today ~ may be a way for me to work through all the unknowns, but also potentially allow me to reach someone else who is struggling and scared and unsure. Who knows. Maybe even reaching myself will be enough ~ goodness knows, I’m struggling and scared and unsure.
Here are the facts ~ I have brain and spinal lesions (aka, my immune system is mistakenly attacking my nervous system at various spots). I have been on high potency IV steroids to calm the ‘flares’ since last Friday (nothing teaches you what you are capable of like injecting yourself with meds, saline and blood thinners) and I will most likely be on self-injected medication for the rest of my life. Pretty heavy stuff for a thirty-three year old woman who has a list of dreams she hasn’t fulfilled yet.
Here’s how I feel. I refuse to choose to be ho-hum doll drum about it. It sucks ~ if anyone has the audacity to contradict me on that, please. Lemme know your ‘genius’ logic. It sucks, and that’s that. But it doesn’t have to suck every second of every day, and I refuse to believe that there aren’t strong, proactive choices I can make to lead as normal a life as possible. I have been given the gift of knowledge regarding nutrition and the benefits of dietary choices and fitness choices that have been shown to help others suffering from MS. That, in and of itself, is incredibly encouraging.
Welcome to my new blog, and my new journey. I’ll see ya tomorrow.