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Are You Having Problems Knowing How To Do Things And Navigating Around On This Site?
A MyEpilepsyTeam Member asked a question 💭

If so, then here are some sources of details about how to navigate and perform many different actions on this site
Here are some tips that I got in response from the creators of this site -- when I asked if it was possible to put a "How to" index on the screen after logging into this site. It is not possible (due to the complexity of doing so and the cost to do so --both a major problem since this is a non-profit organization that created this site).

While they indicated that cannot make the… read more

posted January 19, 2022
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A MyEpilepsyTeam Member

I still try & work this zoom out for a better time, & say
Hi yo a few more friends

posted February 19, 2022
A MyEpilepsyTeam Member

I think you have part of your WHY in what you just ended with. If you truly believe that Covid-19 would definitely taken him if he had survived 6 years ago, then this is why God took him and left you. You are filling a much larger role than you seem to realize by being a good friend to many of us on here. Some of our friends here have absolutely no local support group (and some have it even worst with a local anti-support group, thus increasing stress and depression). You are a very positive friend even when stating your physical limitation brought on over the years. The fact that you have not quit in the fight with epilepsy in spite of all of that makes you a great inspiration and support team friend!

posted January 26, 2022
A MyEpilepsyTeam Member

I have yearly MRI scans & now I get the taxi there & back as the staff no me. They no me so well that my glasses & all jewellery comes off & my shoes including the AFO!
But I always use to have someone else sit in the waiting room whilst I have the MRI!
But i went to bed asking WHY did GOD take me husband as he was a christian like me? Is it because nearly 6 yrs ago GOD wanted my CANCER husband … I still come to the word WHY & have even asked my minister. I can’t remember his answer as I walked away.

posted January 25, 2022
A MyEpilepsyTeam Member

One of the reasons why GOD performed the miracles to keep me around (not to just haunt and annoy some perhaps who do not like to hear that GOD exists and is actively performing many miracles in non-public manner besides some major ones that make the news) is that I have the knowledge and experience to find the latest medical facts as the result of the latest published research that backs up previous research by others. It was only a few years ago that it was proven that febrile seizures can actually be the Epilepsy (for someone like me --and made fact on December 1st) starting point. And then epilepsy can go into a dormant state and return years later as other forms of seizures. And another fact that I learned from when I first started working at Massachusetts General Hospital Treadwell Library in 2000 -- and thus being able to read the medical books on epilepsy meant for the doctors and medical students at MGH and their equivalent at other teaching hospitals and medical college libraries. And, as the Interlibrary Loan staff person for MGH, I also had very high clearance -- since I would be using it to get the information for doctors, researchers, nurses and the like at MGH--thus could read above the public access level to the US National Library of Medicine and had access to the medical dictionaries and encyclopedias to translate for myself (some times I would ask one of the doctors who were friends of mine visiting the library to trans late when necessary) because some of the information in there needs more than a medical dictionary to translate. Just like is the same when trying to have a conversation with someone in a foreign language using a dictionary because they hear you speaking like you are in grade school most often.

Using my knowledge to share access to up-to-date facts from the experts about Epilepsy and all other medical conditions (or any other terminology that they want to use to categorize them) is something that I can give to my friends and their caregivers. And easing someone else's pain and making them happier is the best gift to me as an empath. Otherwise, life as an empath (anti-narcissist) is very painful and depressing in the modern age where we can quickly hearing about the suffering all over the world.

posted January 24, 2022
A MyEpilepsyTeam Member

Sometimes it is in a show of support to a friend, like you, when you are talking about all that you are enduring, so that you will make note of all of the HOPE that you sharing to our friends who need it the most when you accept the challenges and do not give up. And you respond exactly like you just did: "I have 40% sight left & Im doing my best on here!!" You have no idea how important it is for you to say that for our friends who have it so much worse, as well as those who have it equally as challenging as you. Many times I am sharing the links and articles again simply because I do not remember that I have previously. However, there is a third reason as well, which is that I am always greeting any new member to the site and adding these new friends to my team, and I want to make sure that they have access to this information too. GOD has many reasons for performing his miracles on us that HE knows all of the reasons why it is important, but we are not all-knowing, thus we have to find out the reasons as we progress on from the miracles. I absolutely should have been dead (no medical reason to explain otherwise) when that pharmacist made the error of not catching filling the bottle that was supposed to be Tegretol (the only anticonvulsant that I was on at the time) with the equivalent dosage of some high blood pressure medicine that came as an orange capsule. I also should have died because of the multiple mistakes that my first neurologist (losing knowledge rapidly due to Alzheimer's) made in 2003 and in 2004 and 2005 before finally made enough of these errors on other patients too (I hope that he did not make one that killed a patient(s) which finally got him to suddenly retire from seeing patients in June 2006.
(continued)

posted January 24, 2022

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