I was reading my tweets, both those that I follow and those who follow me (@thrivingndenial). There was a number of new and recently diagnosed patients reaching out for information and insight on drugs they were either considering or already taking. At least 3 that I read had experienced one really bad exacerbation and they were now on their 2nd or 3rd drug – in an effort to find the one that works better.
I couldn’t help but remember my extreme, terrible, call it what you want to, exacerbation. It left me with total left side paralysis head to toe. Now I’m calling it an exacerbation w/o regard to the TIA’s that sort of kicked it off – but that’s another story. The point is that everyone that was tweeting and seeking information or insight about new drugs had abandoned their previous drug therapy simply because of the exacerbation. And there is where my story and experience differed from those that were tweeting.
Despite the fact that my exacerbation / TIA’s were pretty extreme, and it took a week of in-home IV therapy, a week in the hospital, 3 weeks of home physical therapy to strengthen for outpatient rehabilitation, then 4 months of outpatient rehabilitation with PT and OT, I immediately returned to my medication – COPAXONE.
Now some people might say that if you experience an exacerbation as extreme as I did, the medication I was taking failed. And here again is where I disagree. Since no medication can PREVENT exacerbations, and I had experienced NO exacerbation of any kind until that point, and because I believed that I would recover fully (another story) for me, there was logically no reason to change my medication. And to this day, almost 10 years later, two National Corporate Athletics Association Corporate Cup Relays, a marathon three-way event that included a 5K, 10K and 13.1mi half marathon, I’m still a COPAXONE girl.
And now, as I battle menopaus with hot flashes to rival any heat senstivities any MS patient could describe, training 3-5 days a week for master level sprinting in 2014, yes, my left hand trembles from time to time. Yes, I’m having to re-learn sprinting to strengthen my left side. Yes, I wake up often with a numb left arm. And yes, sometimes I’m so stiff and disoriented at night my husband has to help me up the steps to the second floor of our home. So what?!
I have a life to lead. I have a 7 year old who is experiencing his first year in youth football. I am writing several books and trying to bring them to publication. I am an active partner in my husband’s businesses. I am a Board member and Board secretary of a local non-profit that supports the public schools in our city – and I’m chairing the fundraiser luncheon for the organization this month. So, I honestly have things to do. None of which permits me time to worry about going to see my neurologist just because I experience hand trembling from time to time. My life doesn’t provide time to do research on new drugs to treat MS. And quite frankly I’m not interested.
The drug I take is not EVER going to PREVENT exacerbations. No drug can promise that. In fact, I don’t even know if it has slowed down the progression of the disease. I just don’t have time to consider all of that. I have no desire to spend my precious time on this earth researching new drugs. I prefer to spend my time thriving in denial….
My heart goes out to all of the newly diagnosed. It must be tough to make a decision about drug therapy with so many options. You are all in my prayers…
Thriving In Denial
Founder/CEO, MS Coach