Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.
And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. – Philippians 4:6-7
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I am asking for prayers for my daughter her husband and our entire family. The following is what she wrote about what she is dealing with.
Epilepsy is so much more than seizures.
It’s a constant flow of appointments and tests and imaging. It’s needing those tests to validate what I’m going through, while being terrified of what they might show. It’s waiting months between appointments because it takes a team of specialists to manage my condition and they are BUSY.
It’s a cereal bowl of medication every morning and night. It’s side effects from meds, which (after this many trials) have a less than 3% chance of ever controlling my seizures on their own. It’s rescue meds up my nose (in public, or like, right in front of my OWN patients) because this is my second, third, or fourth seizure of the day. It’s changing meds for the hundredth time, hoping something will buy me some time.
It’s trying to explain what seizures feel like to other people, when mine don’t “look” like the seizures with which most people are familiar. It’s being well-aware of the deficits I’m developing as a result of frequent seizures and taking so many meds. It’s gaslighting myself, wondering if I’m being too dramatic about my symptoms. It’s pretending they don’t happen because people get tired of hearing about them. It’s wondering when the next seizure will happen, and hoping it doesn’t inconvenience anyone around me.
It’s missing out on big life moments that my peers experience and feeling behind on so many milestones that I’ve convinced myself I “should” be meeting by now. It’s feeling like a disappointment because I’m not “getting better.” It’s simultaneously being grateful that I’m still able to do so many things, because others with this same illness do not have that privilege.
It’s wrestling with big medical decisions. It’s knowing that without choosing an intervention, I’m risking my long-term health and letting my brain take a beating every week. I’m risking status epilepticus or SUDEP.
This summer, I’ll be undergoing an invasive EEG to determine which areas around my brain tumor (and throughout my temporal lobe) are the focal points of my seizures. (Electrodes *inside* of my brain sound pretty gross, but I’m down for anything at this point.) If all goes as planned, my care team will narrow down which areas of my brain are safe to remove and what will give me the best shot at seizure control. I’ll then undergo a resection to clear out those areas and test the tumor’s tissue, to see how it may behave in the future.
Surgery and epilepsy are scary, but love is not. I’m waking up this morning overwhelmed by the love and support of those around me. When you find good people, hold tight to them. Writing this post will likely not be the only time I cry today, but I’m crying out of joy and gratitude instead of fear. Thanks for reading, friends. ️