I am usually a positive person but today has been especially
trying. I realize tomorrow is Thanksgiving and I should be espousing everything
I am grateful for. I will.
Just not today.
Today I am on a rant.
Epilepsy sucks. It is more insidious than people
realize. People who have seizures lose
minutes, hours, and days of their life.
Epilepsy has no
regard for schedule. Does it care tomorrow is Thanksgiving? Absolutely not.
Epilepsy changes
without warning. I am used to Robert’s
Complex Partial Seizures. He averages 20 – 25 seizures a month. This month, his
seizures are out of control. He has had
not one but two days of non-stop cluster seizures (totaling at least two dozen
each day).
When it happened earlier this month, we thought maybe he was
super excited about our trip to Disneyland.
We (meaning me and his neurologist) couldn’t figure out any other reason
for the unusual cluster. I chalked it up as anomaly.
Then it happened again – three weeks later.
Are his seizures changing?
Are we moving from one or two every few days with an occasional cluster
of 3 – 4 to a few dozen in a day? Will this become the norm?
Who knows! Because
epilepsy is unpredictable and in a third of people with epilepsy it is never
controlled. Never.
Epilepsy kills. Yes,
it kills. Fifty thousand
people die annually in the United States from epilepsy (prolonged seizures,
SUDEP, and accidents caused from seizures).
50,000!
Epilepsy changes
lives. A woman – a kind, wonderful woman – loses her daughter and mother to
seizures. A mom takes a low-paying job because it allows the flexibility to
support her son who has epilepsy follow his dreams. A mom advocates for the
legal use of CBD after seeing her son’s epilepsy continue to be uncontrolled. A
man and his wife care for their disabled son and have sat bedside with him
numerous times when he was on the brink of death. A confident, empowered woman
becomes self-conscience because the of damage epilepsy medications have done to
her teeth.
Let's do more research to find a cure for epilepsy. Let's do more advocacy.
Let's do more ranting.
1 comment:
Indeed.
The stat "1 every 10 minutes" drives it home for me better than any other stat. That could be me. It might be me. Perhaps tonight. Perhaps tomorrow.
A few months ago we'd thought we'd found the right combo of meds. It worked great.
For three weeks.
Now I've had to add half a dose of my rescue med (Ativan) twice daily. Yeah, it works...and it forces me to sleep for 3-4 hours every afternoon. So I skipped it this morning. Balancing the risks and benefits,and all that.
So yes, let's keep advocating and ranting. But for you,Rocert, and Richard, not tomorrow. Just be thankful. And eat.
With much love.
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