So I wake up at 3:00 in the morning. My inbox is filled with lovely e-mails from all of my friends and fans, therefore my phone is BEEP, BEEP, BEEPING me awake! I'm reading through and I'm fascinated. There's e-mails from all over the world. People in Malaysia, Russia, Germany, and even places I've never heard of. I wonder to myself, "How are they even able to access internet in these places?!".
So I'm smiling to myself, reading all the messages, when one new one suddenly comes in. I open it up, and my smile quickly flattens. Someone asks me "How dare you say that Epilepsy is a blessing to yourself? Epilepsy is hurting people, killing people, and making people just suffer in general. You should be ashamed of yourself, saying that."
Here is this week's weekly bulletin. I apologize for skipping last week's bulletin, but I've been having some seizure activity here and there which has gotten in the way of other things in life that needed to be done first. To make up for it, Wednesday's Weekly Bulletin will be featured today (on Tuesday)!Enjoy!
This week I've actually been very busy, even with the seizures themselves. As a lot of you probably know from the last entry, I'm getting ready for an art show!
I would love to show you all my art, or explain all of my art background in this one blog, but it would just be a lot easier to give you my artist's page on Facebook. It will answer all your questions about what kind of art I'm into, how I sell my art, and where you can find my art. I would love for you to give my page a "Like" because I need to get myself out there as much as possible. 20% of my proceeds are going straight to the National Epilepsy Foundation!
EpilepsyBlogger, which is my Facebook page dedicated to Epilepsy, is actually doing quite well. I've gotten several e-mails from people all over the place and a lot more traffic on my blog. (Which is always great!) If you haven't checked it out already, please give it a look and a "like". I add updates every other day on the latest Epilepsy news, and helpful tips and videos that may be of help to you or someone you love.
Have you ever wondered to yourself "How will I ever live by myself and deal with my Epilepsy all by myself?'. If you have, please check out this link on tips for living alone eith Epilepsy. It is a discussion from Epilepsy.com and features real people, just like you, who deal with Epilepsy and live alone each day. Very helpful discussion. Here is an excerpt from the discussion that I liked particularly:
"One can never be entirely safe whether living alone or with others. But using a microwave oven and a grill with a timer is a good idea for the kitchen. Of course it pays to learn how to use the timer on the oven if you have a stove. Using the back burners instead of the front ones helps minimise possibility of burns during a seizure. In the washroom, showers are safer than baths if there is a risk of drowning in the bathtub during a seizure. It also pays to seek out help from others who understand your condition whether it is epilepsy or other. Sleeping on a double or larger size matress may reduce the chances of falling off during a seizure. And having cushions on the floor around the bed or chesterfield could help. Try to get out and have contacts to call so people can help if you get sick. Even a good fellow employee can be of benefit. It may not hurt to have a Bachelor suite with a futon to act as both bed and couch. Just don't get too comfy with the sleep depriving television-in-front-of-the-bed routine.
Living on your own can make people see you as a strong independent person who isn't really disabled at all. And it makes it easy to decide things for yourself. It teaches self-discipline and makes a person more capable of being a leader too. They have the potential to become a couragous independent person."
And Mary said, “Behold, I am the servant of the Lord; let it be to me according to your word.” And the angel departed from her.
Duality - Finished 4/12/2011
I just wanted to inform you that I'm now selling my art, and you can find my brand new page (still being put together) on Facebook by clicking the following link. Please give me a "Like"! 20% of my personal proceeds are going straight to the Epilepsy Foundation! So I need to get as much exposure as possible. You can also help promote me by "Liking" my actual EpilepsyBlogger page.
I am selling my art "auction-style". So I am taking offers for the next two months, and the highest gets to take home some of the following art. I am still waiting to photograph more pieces, and you can expect them to be up in the next two weeks. Some pieces have already been sold or donated, and I will be sure to put "NO LONGER AVAILABLE" in the captions on Facebook.
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"Le Ciel"
The show is being coordinated by an awesome artist named Antonio Barrera, who is a local San Antonian just like myself. Please also check out his artist's page and give him a great big "Like". The show is originally being put together to fund a child who has autism, so it is all for a good cause. I simply decided to use some of my proceeds for Epilepsy since... Well, I have it!
Thank you for all the feedback via e-mail. I've gotten so many amazing letters from my readers and I feel so blessed that people are actually listening and donating because of this blog I've started. When I posted my first article I never would have imagined people would take such an interest in me! God bless you all for your donations to the Epilepsy Foundation!
Thanks for the help and stay tuned for my bulletin on Tuesday!
Mandy Krzywonski
P.S. - If you mention me, my blog, and my art in your personal blog I will automatically let you be the next guest blogger! We had two in line but they have failed to submit their articles, so I'm in need of more people as soon as possible!
I know it's been a great while since many of you have heard from me. For your enjoyment, I have tons of health updates! [both good and bad.]
So, I recently met with my doctor, just last week actually, and I have a lot of news to share. My first bit of news is that I have managed to come down on one of my medications (Felbatol) from 3,600 mg a day to only 1,800 mg a day without any severe seizure increase. However, I have been having a spike of the smaller simple-partial seizures. We can't pinpoint an apparent cause for these seizures, but we do have an idea.
Before all this Epilepsy was diagnosed, my doctors had discovered a small pituitary gland tumor. It was decided to be "benign" since it wasn't growing. Unfortunately, both my family practitioner and my Epileptologist have a hunch that it may be growing a little bit. It is pretty serious, in a sense, but not deadly (at least in most cases). The surgery is quite simple thanks to modern technology, and it can be removed in less than 3 hours through my nostrils!
The hunch started when my menstrual cycle became extremely irregular about two months ago. I have been bleeding pretty much every other day with no rhyme or reason to it. I was bleeding what can be equal to about 1/2 a cup (think "baking a cake")of blood per hour. This is pretty serious. I had to get back on birth control pills, which didn't help whatsoever. It usually helps a lot, so that's when I knew something serious was going on.
Then, my armpits started to hurt very bad. They skin under my arms is even turning a brown/purple/red color, which is quite out of the ordinary for myself. I have very pale and almost porcelain skin underneath the makeup and the tan, so this isn't something you would expect. Apparently, the pituitary tumor (if it is growing or not) can be affecting my hormones in a way that would cause all of these issues.
Also, remember the acne problem? Well, it's still there! Even after changing medications. This is also a common symptom of a hormone imbalance and is very prominent among women with growing pituitary tumors.
So my Epileptologist has me scheduled for an MRI on the 22nd, and tons of blood tests before hand due to my kidneys and liver that seem to be having some acute issues.
My VNS implant has been turned up to a 2.5 level out of a targeted 3, and it is so uncomfortable I could complain about it all day. But it is definitely helping with the Grand Mal seizures, so that's all I care about!
All in all, I want to say I'm doing a lot better, but I'm not sure what to think of all this. On the bright side, one of my paintings is done and she's called Duality. This painting is dedicated to rape victims everywhere, and I hope you like it. She'll be going to a competition this Saturday, the 19th so pray that I come out with some recognition!
God bless you all and I wish you the best of health!
