Here's to the Caregivers!

This post is part of the Epilepsy Blog Relay™ which will run from March 1 to March 31, 2018. Follow along!

Here’s to the caregivers for people with epilepsy!Here’s to those who live with us, take us to the hospital, and love us any which way they can.And here’s to that selfless love.It gets us through all that life has thrown at us.
But what of those with epilepsy whose families don’t seem to be so loving?We can be shunted to the side, never truly to join the family table. How could these mothers, fathers, sisters, brothers, and grandparents be so heartless, seemingly embarrassed by the existence of “an epileptic?”
I’m graced with a loving family, but, in my support group, I’ve gotten to know wonderful people with epilepsy who have been emotionally shunted aside.One person – we’ll call her Emily – literally had to sit off to the side.She didn’t go to the family celebrations at cousins’ houses during the holidays, and her own family never hosted the events themselves, fearing the rest …

Guest Post by Shan O'Meara: What the Numbers Mean to Me

There are approximately 325 million people in the United States, as of January, 2018. Out of that 325 million, approximately 3 1/2 million, a little more than one percent have epilepsy. That one percentile makes us unique, a rare breed. That makes people with epilepsy a select few, members of an exclusive club, a club only people with epilepsy can join.

I would have loved to only have missed one on a test in school, but that didn’t happen, as much as I wish I had. Awareness for epilepsy was not as widespread now as it is today compared to when I was in school. I was still in denial that I had epilepsy and would be in denial for many years.
Our vision is 20/20 in hindsight only. There are so many things I wished I would have done differently, but I can’t change the past. No one can change their past. Everyone has to look forward because that’s all we can make different.
How many of us would be doing something different now if they didn’t have epilepsy? If we didn’t have epilepsy, that wo…

Double Whammy: Living with Two or More Conditions

How do you feel when you have epilepsy and [fill in the blank]?We often hear about “co-morbidities” (does anyone else hate that word?) with psychiatric disorders, cognitive disorders, migraines, and sleep disorders, but there are, of course, others. Nonetheless, we with epilepsy may live with entirely unrelated conditions that affect our quality of lives and fear levels.
How do we handle it all?  
I have epilepsy + smoldering myeloma (symptomatic multiple myeloma) and in no way can I be viewed as a model of how to deal with both of them, especially together.  My solution:  Denial.  For many years, I hid my epilepsy, took my meds by rote, and pushed down acknowledging epilepsy until I no longer heard my thoughts banging away at my consciousness.I didn’t accept them, and, as my seizures are controlled with my meds, it was pretty easy to do so for many years.
And my myeloma? When it was first diagnosed in 2003, my oncologist told me that I should begin getting my affairs in order – transla…

Reblog: Patient Recommendations for Doctors, EpilepsyTalk

What a bountiful list of recommendations from patients for doctors!  All thanks go to Phylis Feiner Johnson of EpilepsyTalk!
Caveat:  This list has NOT been approved by any medical organization, nor does it specify that those listed are epileptologists or neurologists.  It only is based on patients' own experiences and, as such, should be considered a crowd-sourced compilation.

Click on the following:
Patient Recommendations for Doctors

The Shame of the Seizure

We’re closing down another year, and my wish for 2018 is that we together end the humiliation that many of us with epilepsy feel.To begin, we need to ask the simple question of why.Why do we feel this way in today’s culture (at least the culture in the area I live)?What about other conditions that cause seizures?For instance, are people with diabetes or hypoglycemia embarrassed?They also have seizures.Maybe, they’re ashamed, but it’s not likely.
As for me, I hid my epilepsy for more than 30 years before escaping the secret, bringing it to light.I’m open and find most people around me simply want to know more about my condition rather than associating it with something evil, as they may have in days past.
However, when I have one of my tonic-clonic seizures, I force down shame, distressed by how ugly it must have looked and if I scared anyone.Did I urinate? Did my eyes roll back?Did I turn gray?Were there children around who were terrified?How many people did I inconvenience or worry?…

Creativity and Epilepsy

This post is part of the Epilepsy Blog Relay™, which will run from Nov. 1 to Nov. 30, 2017.  Follow along!

Epilepsy can provide masses of inspiration.If not the source of creativity, then we most likely need not feel it has diminished after our first seizures.At least that’s how I see it… but, I guess, everyone doesn’t think the way I do.
I learn what others with epilepsy are thinking and feeling by reading responses to questions posted on differences in ways they interpret topics and queries is fascinating.So, I asked about creativity and whether they feel their epilepsy made them more or less so.By and large, a couple of themes surfaced:
1.They were creative before their epilepsy presented and, happily, continue to be. 2.They associated creativity with IQ, saying that they experienced declining cognitive skills after their first seizures.Their creativity sometimes did and sometimes didn’t diminish.
These, of course, were the most frequent answers, not all of th…

Guest Blog by Shan O'Meara: Tough Skin

Those of us suffering from epilepsy have to have a tougher skin than most. It causes those of us who have it to change their lives dramatically. For example, you shouldn’t drink alcohol while taking anti-epileptic drugs. For a limited time after a seizure, it is illegal to drive. Again, some people do anyway. Risky, but people still drive, regardless. The length of time varies in each state, from only months to several years. Some drugs necessitate eating a certain way or not to eat certain foods. Epilepsy is not a sickness, not a disease. It is a condition. There is no way to “catch” it from someone else. Epilepsy is not like the common cold or a broken limb, which, if given time, will mend or run its course through your body. Often, without surgery, it will not go away. It is forever. There is no way to determine how, why, or when you will have a seizure.  That’s what makes this condition so hard to understand. Some people get an infection and the seizures start. Some people have it …