I have said that I will keep you updated on what is happening with my latest and greatest med – Biogen’s Tecfidera, and I will, but first wanted to share my story about “OH FUCK.”
I was diagnosed with MS in December of 2007, Merry Christmas to me! The symptoms began in June, first a tingling in my right foot, which eventually turned into a heavy “numb” feeling. The way that I have described it is if you can think to a time when your foot or hand has fallen asleep, and you KNOW that there are going to be the “pins and needles.” Then you shake or stomp or do whatever you choose to give it a wake up call. There is a feeling that you have in that body part, BEFORE you wake it up, a heavy/dead weight, almost as if it isn’t a part of your body, it feels strange and different; not right. That is what it felt like. My right foot. As the summer wore on, it seemed to happen more and more often (in hindsight I now know that is because I was on Martha’s Vineyard, sitting on the beach, in the direct sunlight, and the temperatures that summer were consistently well into the 90s.) I spent a good part of that vacation stomping my right foot, over and over, until it almost became an unconscious twitch, all in the hopes of “waking my foot up.”
I was not worried overly concered. As far as I knew I was healthy. I figured I had pinched a nerve and that was causing the weird sensations; seemed logical to me. We returned to Seattle, and the madness of the start of school for all three kids hit like a ton of bricks; crazy ass packets of forms to be filled out (in triplicate no less,) determining if everyone has at least one pair of shoes that AREN’T flip-flops, back to school picnics, PTA meetings, soccer practices…it is just sheer chaos. I am of the opinion that no matter HOW good a mom you are there are moments in September when you feel as if you can’t take any more! I have always believed that it is a conspiracy to humble all moms out there, at the beginning of the year. Knock them down a peg or two….just so that we all know that we aren’t as good as we would like to believe. All this mayhem did a fairly decent job in allowing me to forget the foot issue, although I had begun to feel the same thing in the left foot. In the quiet early morning hours, before the kids got up, and I was left to my own thoughts, I have to admit that an “OH CRAP” feeling was beginning to well up inside me. This just wasn’t right.
My “tipping point,” the moment that I realized that this was probably something MORE than an annoying pinched nerve? Late in September, I was standing on the school playground, talking with a few other moms who were letting their younger children get their yah-yahs out before the bell rang. Suddenly I was struck with a thought. My feet were WET. WTF? It was beautiful out, clear blue skies, with way more sun than one would expect in Seattle. Not a drop of rain ANYWHERE. So, why were my feet wet?! I realized that I had just PEED! Right there, on the playground, mid-sentence with some other mom! AWKWARD! EMBARRASSING! MORTIFYING! But more than that, ALARMING! “Normal” healthy people just don’t do that, pee while standing in public, carrying on a mindless piece of crap conversation, and certainly NOT without knowing, being aware that your body was just going to let loose of bodily fluid that belongs in a toilet, not on the wood chips of some playground! What the HELL was wrong with me? The ONE saving grace in this moment of sheer shame, was the short skirt I happened to be wearing. It had allowed the pee fairly easy access, down my legs to it’s final resting spot. The only damaged collateral was my underwear (well and I suppose my legs, but the sun did a quick job of drying them out.) Had I been wearing pants, or shorts, I would have found myself standing there with the tell-tale wet stain, encompassing not only the front of my crotch but also spreading out to my ass area and down towards my thighs. IF that had happened there is no possible way that my PUBLIC PEEING would have gone unnoticed.
This episode of PUBLIC PEEING (or P.P. as I have appropriately nicknamed it) is what finally broke the camels back; forced me to admit that there was something wrong, and to seek medical advise. The process of what doctors I went to see and what I was told is a story for another day, but eventually I was told I had Multiple Sclerosis. I don’t think I will ever forget that day. But NOT because it was the moment that I found out that my life would never be quite the same, that everything I would do in the future would be “tainted” in a way, by the thought “I have MS.” NOT because of those things, but rather because of what the neurologist said to me.
By the time that this all took place, I was actually feeling a bit better. Both my feet seemed to be not quite SO “dead” and I hadn’t participated in any P.P. in weeks. Initially this doctor had told me that I had Transverse Myelitis, which was a temporary condition, that would go away in about a year. That had lifted my spirits, given me hope. I could deal/cope for a year, no problem. The last step in my diagnosis of this “temporary condition” was to get a brain scan (I had done a thoracic MRI, but NOT the brain initially.) After the second scan, I headed back to the doctors office the next day. Once I was led into his office and seated in the chair across from his desk, he wasted no time in breaking the news to me. It was NOT temporary, was NOT Transverse Myelitis (liar, liar pants on fire!!!) I had Multiple Sclerosis!
Not one to mince words, or hold back, my immediate response: OH FUCK! What he said next has stayed with me, and I believe may have changed how I view this disease and affected my entire attitude towards my life and living with it. He said “no, this is a OH DAMN moment in your life. There will be OH FUCK moments, but this isn’t one of them.” He went on to explain that although it might change my life and create moments of difficulty, that no one dies directly from MS. If my five year old child was diagnosed with Leukemia, THAT is an OH FUCK moment. On a more global level, 9-11 was an OH FUCK moment, but NOT this.
He went on to tell me that the only thing that he felt bad about for me was having to tell people. He said I struck him as a fairly independent person (GEE could that be because I came to EVERY appointment, and MRI alone?) He said that in some ways telling people that I have Multiple Sclerosis is like saying I have cancer, but NOT elaborating on what kind of cancer. Where and how severe it is. According to the Mayo Clinic there are four different types of MS: RRMS, SPMS, PPMS, & PRMS. This disease presents itself differently in EVERY person. He warned me that just about everyone that I told would know someone (or someone that knows someone else) that was diagnosed with MS. He was pretty accurate with this. As he predicted, the stories ranged drastically from the friend that has had it for 20 years and still runs marathons, to the cousin who was diagnosed at the age of 19 and was in a wheelchair within a few short years.
He assured me that I was going to be okay, and talked about some of his patients that were diagnosed during an initial flair and then were virtually symptom free for many years. He maintained confidence that I would get through the “episode” and be back out running 7 miles 6 days a week and living my “normal” life. That part of his assessment wasn’t very accurate; I was actually using a cane within three months of the diagnosis, and eventually got a Segway to help me keep up with the kids. What he was right about was that it wasn’t an OH FUCK moment. Yes it has changed my life, and even me, but mostly in good ways! It has forced me to slow down a bit, to think of myself every once in awhile and to REALLY appreciate all the good things in my life. I have found a happiness that I truly did not ever think would exist in my life. I have had MANY happy moments in my life, and would have described myself as happy and “up-beat” but I now see that a LOT of that was on the outside, and not how I was really feeling. The ME that I live with every day (that little voice that is in your head, ALWAYS providing an opinion, giving suggestions, even when you don’t want them) was not very fulfilled. I was not living true to myself, was NOT being who I wanted to be. Since my diagnosis, I have learned to love myself, and to use my internal strength to stick up for myself and what makes ME happy.
TECFIDERA: As promised, I will continue to give updates on how I am doing with this new drug. I have now been on it for 2 weeks (the first week was half dose and the second I bumped up to the full dose.) I mentioned that I did have heartburn (not stomach queasiness or indigestion, TRUE burning in my chest.) But that was only for the first two days of the half dose and I have not had any issues at all since then. It’s REALLY too soon to give accurate feedback, but if forced to answer the question; Is it doing anything? OR Do I notice any differences? I would have to say that I do. I feel like my “good” days are a bit more frequent right now. I seem to be able to recover more quickly. For instance, we had a few hot days (80s) and coming out of a rainy, gray winter, it was normal that I would want to grab as much sun as I could. And so I did. Working in my yard, and then Shawn’s. Sanding and re-staining the deck furniture, weeding and planting a vegetable garden. This is a LOT of physical exertion and in the heat, this would usually leave me feeling as if I had just finished a marathon. AND I would pay the price, meaning the next day or two would be “bad days – REALLY bad days,” but no. I worked on those projects, out in the hot sun, for THREE consecutive days! That doesn’t happen in my MS world. BUT it did.
Is it because I am taking TECFIDERA? Or is this just a REALLY good phase for me right now? That is the shit that bothers me most about this disease. Yea, it sucked when I had to use the cane, and get those stupid ass looks and comments of pity. It sucked when I had to give in and be pushed in a wheelchair through the airport (with my kids running along side, because when I said we were in a bit of a hurry, my “driver” took me WAY too seriously and may well have broken some sort of airport wheelchair speed limit.) And it sucked when I had to make my naked 911 call (story for another day, promise!) But all of that does NOT compare to how much the NOT knowing gets to me. Will today be a good day? HELL, will I be o.k. two hours from now? Sometimes I can have a great morning and then BAM, over the course of an hour the pain grows and the fatigue hits and then all of a sudden my “good day” is gone. WHY? What the fuck did I do? Is this medicine working? Doing something? Or is it just that MY MS decided to give me a little break?
I don’t know. I don’t know that I ever will. BUT for today, at this moment, I have been up since 5:00 a.m., cleaning, working, getting the kids off to school, walked the dog and I feel REALLY good. So if I choose to believe that it is the TECFIDERA then I think I have a right to that. SO for the moment….GO TECFIDERA – I am a poster-child for Biogen’s new drug! BUT check back in with me tomorrow, another day could be a whole new story!