Archive for March, 2017

Epilepsy Awareness

Tuesday, March 28th, 2017

March 26th was Epilepsy Awareness Day. I had some tough seizures Saturday night, but I managed to smile and have a good day on Sunday. I went swimming with my parents in the afternoon and had such a good time! It was great to be floating again. Seizures are terrible, debilitating, mean, and flat out wear me out but they can not rob me of my smile or my will to live. Cannabis has had a huge part in helping me kick those seizures to the curb and has kept me smiling. Life is unpredicatable and so are seizures. I just received some new oil (a different type) that we will add to my existing oil of Haleigh’s Hope. We are praying this new oil will help minimize the seizures I have been having at night. To all my friends out there who suffer with epilepsy I am with you. I understand. Here’s to finding a cure.
Love Malia

sleep can be so hard

Thursday, March 9th, 2017

Last night I was having trouble sleeping. Slowly but surely I begin to drift off to sleep when this volt of electricity comes rushing through my body. It lasts only for a few seconds but it does not promote good sleep. Finally my body drifts away into sleep land. At 1;15am I awake again, frozen. I could have been in the movie. Frozen are my arms, legs, eyes, for 25 seconds when the seizure monster lets me go. I take a big breath in look at my mom and then the spasms begin. One after another after another. Arms and legs twist to one side. Within 5 minutes my body has had a total of 85 spasms. They are happening every second. The oil helped bring the spasms down but they continue on…. So the next step is use valium rectally. This usually will stop them in about 5 minutes. The seizure lasted a total of 25minutes. I drifted back off to sleep. At 3am I am at again, frozen. Mom gives me oil, and this one is not as strong as the last one. The spasms are not as intense but annoying either way. The seizure monster will not leave me alone. Again the oil helps but does not stop them so again a small dose of valium is given. Finally back to sleep again, the seizure monster has left me wiped out. I didn’t fully wake up today until 1pm.

Natalia came to work early today. She has the patience of a saint. She stayed by my side all morning while mom was out working. The rest of the day I was exhausted, the heat here right now is killer. The middle of the day it gets up to 95 degrees, I am the only one in the house who has air conditioning but we don’t stay in my room all day! It sure is nice to sleep in it though! Natalia got some action out of me late this afternoon once the sun started to go down. I am still weak though for the seizures that are attacking me. I pray I have some peace at night. Please let the increase in oil start working better.

Love Malia


Tuesday, March 7th, 2017

The time spent with my grandma’s was incredible. Since neither of them live here full time the time we do share is so special. I was sad to see them go but do know that time flies by quickly and we will see each other again soon. My seizures coming off the Sabril has been awful. At times, I think my body is adjusting to the change but then a Gran Mal seizure will come out of no where and knock me to my knees. You may think all seizures are the same but they are not. The Gran Mal is the worse. They typically happen when I wake up. What starts with my arms frozen in the air stiff as a board turns into a gran mal where my body begins to violently shake, my breath is taken from me and I begin to breathe with severe difficulty, my eyes roll back into my head and I am gone for about 15 to 20 seconds. Thankfully they don’t last longer than that but those few seconds that my body it contorting and twisting I will be pretty much knocked out for the rest of the day. That means no fun for me. No physical therapy , no strolls, just sleeping and being exhausted all day.

So what are we doing to try and combat these awful, horrible, debilitating seizures? We have increased my oil. I am currently on only one pharma drug, which is an amazing feat in itself. The increase in my oil is showing slight improvement. The fact of the matter is that the Sabril and no longer having it in my body anymore has caused this increase in seizure activity. I am only ten days off the medication and we are hoping after one month things will normal out. Until then I am just going to keep praying that the seizures stay at bay and I ask if you are reading this to say a little prayer for me too! Without seizures I am doing great! Hoping to return to my active happy self really soon.
Love Malia

Granny and Grandma!

Tuesday, March 7th, 2017