“Who am I, really? I prefer to leave that up to the observer, because I will never finish answering that.” –Julie Newmar
It has been awhile since I last talked about my epilepsy and trials with different holistic methods to try. I do indeed still try and use them however my life has changed since then so there are key factors into my triggers today. I got married in 2018 and have 3 step kids and one of my own so that’s 4 kids in the house. One being a new adult seeking college and 3 being in elementary school. A huge age difference for them, however the dynamics of the household seem to flow just like any other. My husband is older than me so that is where the age gap in kids comes from. My triggers like most people have become more around anxiety. Like most stay at home moms there is a level of anxiety and depression that co-exists with the epilepsy and not being able to go any where(2020).
We are indefinitely in a new era of I’M NOT EVEN SURE what seems like the TWILIGHT ZONE to me. We are quarantined, required to wear masks with a virus that came from a bat and riots going around.
If anyone did not have anxiety before COVID19 or had a small amount of some.
THEY SURE DO NOW.Which my friends is where I am at along with a lot of you stuck at home having WORSE seizures unable to turn up my VNS and still becoming intolerent to my medicine. So where do I go from here? At this point it is obvious that just holisitic medicine for me is not going to be a life saving method. I am still and I believe everyone is still trying to figure out the cure for epilepsy, if there is one. We are also trying to figure out A CURE FOR THE WORLD CRISIS at hand so in the meantime people with a disability like epilepsy fall between the cracks. I know there are other disabilties out there and I am sure that you guys are just as heartbroken with the world at the moment.
My last hope and prayer is on Cannabis with THC and CBD ratio. I have read numerous reports about different strains with even ratios cause an effect in the brain that calms the nervous system.
I also am fighting my insurance company to take a medication called ONFI. At the moment they will not cover it because I do not have LGS, however I have intractable seizures and have tried everything else. I take Clonazapam as a rescue medication only and I believe it does work. I used to not have auras at all now I have a small seizure before a big one and feel spacey. That gives me enough time to take a rescue pill and swipe my magnet.
I did mention that my seizures where getting worse. The last two that I had my heart rate was very high. One my hear rate was 155 and dropped back down and I felt like an elephant was sitting on my chest. That one I fell in the shower and hurt my back on the faucet. I never take a shower alone because of this fear and I’m lucky my husband was there that day. The second one I was eating, I had never had a seizure eating before so I still don’t know 100% if I choked or not, but I survived. It took me about a week to recover from both migraines . When I say neck pain I mean not just my neck but also down my spine.
So today I wait not just for good news in the world but also the insurance company and from the doctor. While I am going through the waiting process I applied for my medical card for cannabis. I do not want to give up on every angle for a fight for a cure any cure. I will be posting editing topics that I have previously discussed about my epilepsy.
I think that it is important for people to know the reason why I post information about epilepsy, how it has impacted my life and I would like to hear how it has impacted yours! I want you to know that you are not alone in this endless battle. We can all fight together and come together when we need support, ideas, information or even just dont want to feel alone which A LOT of us do because we are confined at home as well as unable to drive.
So please feel free to comment share experience/anything!
Stay safe and healthy,Deanna