From the beginning…

Hey friends! One of my dearest friends has a degenerative eye condition…so over time she is going blind. She has been able to relate to me in ways about disability that have kept my spirits high. Please check out her Brand Spankin’ New Blog. I think you will find some wisdom there

Blindsight

Today I saw an ophthalmologist for the first time in over a decade, and it felt like appropriate timing to (finally) settle on a blog name and start a blog that I’ve been humming and hawing about since last summer.  The appointment this morning was a combination of interesting, depressing, and really not surprising.  She explained how RP had affected my left eye, which no doctor had been able to do before, she informed me that I’m developing cataracts (apparently I’m no longer just an old lady at heart!), and her final advice to me was to enjoy my remaining vision while I can.  Although she estimated that I should have some vision until I’m in my 40s, there really is no way to predict the progress of RP.  While none of this information was overly shocking or unexpected, it’s always a wake up call to have a medical professional…

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I Had 2 Seizures in the Same Starbucks and This is What Happened

Hello!Hey friends. So I have yet another story to share. You know my affinity for coffeeshops, so of course this story takes place in a Starbucks. (I’m from the West Coast, everyone drinks Starbucks here! It’s practically in our veins.) Last month, I had a seizure in the local Starbucks near my home. I was working, and ended up falling out of my chair and hit my head on the wall. The Starbucks manager was very concerned and wanted me to go to the hospital to get my head checked out. I said no worries, and that I was totally okay. He was still worried though and even talked to my Mom on the phone. My work day came quickly to a close and my Dad picked me up.

I had a second seizure in the same Starbucks, maybe a couple weeks later. I was with my mom and we were sitting out on the patio with our little dog because it was a beautiful day. I had ordered our drinks for us, and I carefully placed them on the table, one by one. As soon as I sat in my chair I started to seize and my mom yelled to the man sitting behind me “Catch her! She’s going to fall!” Thank god he caught me, or else I would have fallen and my face would have smashed into brick. I’ve already done that so I really, really didn’t need to do it again. The man was so sweet and  even offered to buy me a new drink, but oddly enough our drinks went unscathed during the seizure. We thanked him though and said our drinks were still intact.

The same Manager had my mom fill out an incident report, and then we took a taxi home. I had many more seizures that day- but that’s not part of this story. I didn’t really think about having the seizures in the Starbucks except that I might be recognized as the girl who had the seizures.

About ten days later my Dad got a call from a high up employee of Starbucks to verify the incidents. She understood that I had not one, but two seizures at the same Starbucks. She said the company was going to mail me a Starbucks giftcard, because they did not want me to feel like I was unwelcome in their coffeeshop.

This sounds a little hoaky, but it’s all true. Two seizures, two different times and in the same Starbucks. But it was the gesture that said “Hey, we don’t want you to be intimidated to come back and be here.” really made a difference for me. I am not afraid to go back to that same Starbucks because I know I will be welcome there. This is just a tiny example of what seizure acceptance looks like. Maybe you disagree, I dunno. But if that hadn’t happened I wouldn’t be going to that Starbucks again out of embarrassment and fear of being a hassle.

Hope you’re doing well!

Lung Leavin Day: Fears and Awareness about Mesothelioma

Hey friends! How are you doing? Today I am posting to help promote awareness of a very serious cancer.

I had a follower reach out to me and asked me if I could write about Mesothelioma, which is a cancer that is caused due to exposure to asbestos. This follower has a wife who is affected by it, and she has had one of her lungs removed as a result. Before I get into the awareness piece, I just thought I would share with you in some more depth what Mesothelioma is.

mesotheliomaIn addition to being caused by exposure to asbestos, mesothelioma is hard to treat and there is currently no known cure for it. Treatments such as surgery and chemotherapy can help to improve the prognosis, but that is just a step. It can also be hard to treat as it mimics other ailments. It wasn’t until the 20th century that this cancer was studied and that there could be a relationship with asbestos..

I am not a doctor, so if you are interested please check out the mesothelioma Cancer Alliance http://www.mesothelioma.com/mesothelioma/  for more information.

Now. The viewer of my blog reached out to me and asked me to raise awareness of mesothelioma. I honestly had never heard of it before, and his story touched me so I was more than happy to help out. This reader and his family created a mesothelioma awareness day, better known as Lung Leavin Day. When this reader’s wife was getting one of her lungs removed, her sister referred to it as that, and it kind of stuck. The purpose of Lung Leavin Day is overcoming your fears. This reader gathers around with his wife and their family and friends, where they write their fear on to a plate and smash it in to a fire.

I think this is a brilliant idea for raising awareness. The smashing of the plate is very symbolic. You have your friends and family around you, and you are getting rid of your fear by smashing it. The plate is essentially shattered, and you are left with your family and friends- the people who will support you most through the rough times.

Although I do not have Mesothelioma, I can understand what it is like to have a health scare, or have fears about your health. I remember about 2 or 3 years ago my neurologist told me that I could go into Status Epilepticus. Status Epilepticus is when you have a seizure that is 30 minutes long, or you have a cluster of shorter seizures that lasts for 30 minutes or more, with little or no recovery in between. The longer the seizure lasts, the less likely it is to stop on its own. So, essentially it is a medical emergency. It can lead to brain damage, or even death. In order to help stop the seizing, an IV with an anti epileptic drug (AED) will be injected to hopefully slow the seizures down.

The idea of not being able to stop seizing terrified me. So, after that doctor’s appointment I remember staying in bed all weekend. I basically hid under the covers and read a book. I was so depressed and afraid that Status Epilepticus could be my fate. I have not gone into Status Epilepticus, so thankfully I have been lucky in that sense.

Please check out this follower’s awareness page about Mesothelioma. Just like Epilepsy, I think it is important to raise awareness about different medical conditions. This family is very strong and brave, and I give all of my kudos to them for that. It must not be easy. Here is the link for their page: http://www.mesothelioma.com/heather/lungleavinday/#.VOKOefnF_Z0

Thanks all for reading! Please help to spread awareness about Mesothelioma Also, if you or a loved one or friend are struggling with a serious illness and you would like to share your story on Life at Full Volume,  please feel free to email me at  lifeatfullvolume@gmail.com

Love you lots! xox

International Epilepsy Awareness Day is THIS Monday!

epilepsy-awarenessHey Everyone! Thanks to an amazing advocate in the Epilepsy community, I found out this info today:

Hey friends! I wanted to remind that the first EVER International Epilepsy Day is happening this coming Monday (February 9th) around the world.

We are partnering with the International Bureau for Epilepsy (IBE) to raise awareness everywhere and we are asking as many people as possible to join us with a social media campaign.

It’s easy to take part: Print out the attachment (or make your own sign with‪#‎EpilepsyDay‬ on it), take a selfie or picture in your town or city and write where you’re from. Post it on your social media pages, make sure you hashtag #epilepsyday and share, share, share. You can just send the photo back to me and I’ll post it on our social media pages.  And remember your friends, family and co-workers can participate, too! Anyone can raise awareness!!

I suffer from Epilepsy myself but did you know that over 65 million people in the world have Epilepsy (that’s double those living with HIV and AIDS) and yet so many people don’t know what it is or have misconceptions about the disorder. In developing regions the stigma and fears related to the disorder are heartbreaking and debilitating. Awareness and education are the key!

Owl Tell You About Writer’s Block

Owl punHey Everyone! Sorry for being MIA…I’ve been going through some stuff plus I had blog block. Wait, ew that sounds like some sort of medical term. I basically have had writer’s block for a few weeks. I am still alive and kicking though- don’t think I have permanently disappeared! I honestly don’t have anything inspiring or uplifting to say. I hope that your seizures are good or that you are on your path to wellness!

I hope you are doing well! Lots of love! xox