Yesterday, I endured a series of tests to determine the location of where my seizures are coming from and determine if I may be a candidate for surgery. After which, I packed my things with my husband and my neurologist walked in to speak with us. Among a few other topics, I had one last question before everyone parted ways. “Did I hear you correctly that you believe I have Refractory Epilepsy?” Without a pause, without a breath, he replied, “Oh without a doubt you have Refractory Epilepsy.” He said that he would be in contact, and walked out of the room.
My jaw hung open and the world seemed to fade away only for a moment. Refractory Epilepsy. I finally had an assured name of the form of epilepsy that I have. In my heart, I knew that, that was what it was. However, to hear my neurologist say it with such matter of fact, I turned and looked at my husband. So my monster has a name. Did I feel weakened? Doubtful? That life was over? No. As a matter of fact, I smiled. Smiling in the fact that I only felt more motivated, determined to fight harder. Epilepsy doesn’t get to control my joy, my happiness, my life. I inhaled long and deep. I am alive. Blessed to be alive. Each day, I will enjoy that life I’m given to the fullest and be the best person that I can be for myself and others. Epilepsy is only like a thorn in my side. Not a determining master in my life.
Interesting fact from UpToDate.com, as many as 20 to 40 percent of patients with epilepsy (roughly 400,000 Americans) are likely to have Refractory Epilepsy.
20-40% of patients with epilepsy (roughly 400,000 Americans are likely to have Refractory Epilepsy.
What a small category of epilepsy fighters to be in. However we will prevail!
If you aren’t quite sure what Refractory Epilepsy is, this means,
Those with epilepsy whose seizures don’t respond successfully to anti-seizure medicine.
There are several options for those living with epilepsy regarding seizure control. Always remember the three word rule of the journey. Don’t give up.
Now that I have completed the necessary tests, I await to discover if I am a candidate for surgery as an option to consider and go from there.
Refractory Epilepsy might mean that seizures don’t respond to anti-seizure medicine but I don’t respond to doubt. I don’t respond to the option of quitting. I respond by fighting back. Choosing to rise above epilepsy. Overcome. Every day.