Project Rewire... First Anniversary... Reflections of a year gone by...

Edit: June 2, 2010 after much thought I pulled my Project Rewire "anniversary" reflections Youtubes Parts 1 and 2 after having them "up" for 8 months.  I never was happy that my endeavor wound up being a two parter even though there was a lot of ground to cover.  Part 1 ultimately received close to double the amount of views that Part 2 had.  Honest to goodness, that didn't hurt me, but it made Part 1 insignificant and practically irrelevant.  Being an extremely logical minded gal, it was important to me for it all to make sense.  It was also important for me to elaborate about the ways I believed God had been leading me to do certain things to help rehab myself.  And how the things He led me to do, had helped me up to that point.  I thought it was also key for me to share how I'd refused to accept the negative words and reports I'd received from Neurologists since January, 2006.  Had I, my faith would have been hampered, dampered and crushed!  However, my entry below is still very much relevant, so only "this" edit is needed in my humble opinion.  To those who watched "my" two-parter, who may come across this entry again, it did my heart well to see those "views", although I truly never wanted anyone to feel obligated to watch both, which was my problem from the beginning.  Should I have followed through and not posted, either?  I'm not sure.  What I am sure about, past is past.  It's new day now.  A new time.  And I have no further thoughts one way or the other. 

Well, Saturday a week ago, July 25th, 2009 I celebrated my first anniversary of blogging Project Rewire. As I mentioned in the prior post, my hubby and I, along with my brother-in-law and a friend took to the sky in our powered parachutes. Then, the next afternoon after church that Sunday I 'webcammed' it to create two YouTubes to share my reflections of Project Rewire's first year, instead of writing my typical "novel" length entry. But, uh oh, here goes one anyway! Ha! A blogging woman's prerogative.

In the Youtubes my "soul" purpose was to share from my heart and provide details to give the viewers and Project Rewire readers a better picture of the positive things I'm doing for myself... things I believe God has guided me to do. As well as to talk about how Epilepsy has limited life. And NOT limited my life, most importantly! It's a bit of a bummer I had to go with two YouYubes, as my original hopes were to get all I felt compelled to share into one video. Yet for me, one was an impossibility. Just like keeping this to only a few lines. (Readers... I'm hoping you feel compelled to take the time to watch Part Two... I'll be forever thankful if you do!)

Also, toward the end I took a few moments to speak specifically to some family members and to a few special friends who I reconnected with this year. Plus, shared a tiny bit about my hopes for this coming year. Although, I touched on a few things I wanted to share, there's more in my heart that soon needs to be added. So, I'm planning to make a couple more YouTubes to elaborate further on ways God has helped me on my journey to healing and also to thank a few people, like all of YOU Project Rewire readers!! From there, we'll see how it goes. I may get in a groove to make YouTubes every now and again. Or, use my channel to share some video of other interests of mine.

A note about the quality... video quality, I mean. To be honest, It's not there. My hubby and I do some videoing from time to time and there is no comparison. But, the content is most assuredly there. I chose to webcam outside in one of my favorite places... on my deck. I could hear all of my wind chimes tinkling in the hot summer breeze... a wonderful variety of birds were singing in my sanctuary... the tops of the tall pine trees swaying back and forth as they danced in the wind... and overhead the fantastic clouds rolled in. It was a steamy 97 degrees in the shade under the umbrella. I taped several sessions to try to get it right. So, you'll catch a tad of not so great editing. It was my first time out with the webcam on my little MacBook and using iMovie. The MacBook is still a rehab tool for me. I'm a "Windows" gal and have been since MS did away with DOS, LOL! But, my goal one day is to be proficient on both.

Also, just so you know... I sent the two parter out to a small number of people first prior to posting them here. Some are people who've known me all of my life, but haven't seen me in over twenty years. People who have seen me in the last one to five years. People I routinely see. And people who've never met me in person. However, I've met via FaceBook; this blog or via Twitter.

So far, I received encouraging comments from everyone, not just patting me on the back, or complimenting me, but true candid feedback. Those who know me in person, noticed the change from my Second MRI Day, March 13, 2009 YouTube. While others went back to the last time they saw me two and three years ago. The only negative feedback I received was from a net friend who has never met me in person. The comments made were about my eyes looking to the left and up often while I was speaking. My friend even thought I was reading cue notes from a board. Nope, it's so not the case. I adlibbed it all! At one time my memory was so sharp I rarely had to write notes for anything and I'm used to thinking on my feet. So, even the mere thought of using notes of any sort when I YouTube myself is never going to happen. I prefer the challenge!

Yet, I'm very thankful my friend mentioned it, otherwise I wouldn't have thought to explain about my eyes. Keep in mind when someone is recalling a memory, the brain signals them to look up and to the left. Interviewers such as I was in my second career, know this. And, people who interrogate others, such as properly trained law enforcement officers, know this. It's a body language thing. Also, please keep in mind that the lesions I mention in the Part One are located in the "language area" of my brain, so it works to find the right word as I speak. My vocabulary is not extensive in the YouTubes as I'd like, but my words do make sense and they flow. That's good enough for me. Hopefully, for those who view them, too! Now, in my next video I'll go into more detail about the "frayed" wires, which actually led up to the name "Project Rewire". It all goes back to a five hour face to face Neuro Cognitive Evaluation I had with a Neuro Psychologist in January of 2007.

One last thing... please any feedback or comments... comment here, or on YouTube. I'm learning and my desire is to improve. This is one time I also ask that Project Rewire readers not email me privately. On YouTube and here on Project Rewire, I can easily come back to refresh my memory. Emails... I receive a large number of emails daily via AOL... and this is so important to me, I don't want to lose any. Thank you!

And just for the record, referring to the "About Me" section on Project Rewire, I'm still doing my best not to allow the disease, nor the stigma to define me that comes along with Epilepsy and/or seizure disorders. And even though I'm pretty much home bound, I try to live my life as normally as possible. I am not a disease, I am Jeanne! The ONLY reason I talk about it in person, or on this blog, is that I'm trying to put a FACE on the disease to bring much needed awareness to it, and that's a path or a calling I can't ignore... so who knows where God will lead me next year? But where ever it is, I'm willing, and He will be faithful to prepare me. Has this past year since beginning Project Rewire been easy? No, it's honestly been one of the most challenging years of my life, but through the Lord, I've persevered. Thankfully,He's yet to forsake me!

Deuteronomy 31: "Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you. He will never leave you or forsake you."

Okay... here goes! Please feel free to pass this blog entry on as well as the YouTubes, if you feel led to... those of us living with Epilepsy, surely could use the help getting the word out to create awareness everywhere. Thanks!

P.S. I will be cross posting these YouTubes on FaceBook in a day or so. A dear person to me passed away last evening (Sunday) and I need to wait a little. She was a beautiful woman. The wife of "my" special trainman... someone who has been much like a grandfather to me this past year. My heart is breaking for him, and he also just had surgery this week to have stints put in due to a triple blockage. My praying readers... please pray for him and his family. God knows him by name. Thank so much.

First day of Summer and Summer begins a new life.........

~......... Meet Summer .........~

Our NC/SC ESRA coordinator contacted me Tuesday a.m. early to see if my husband and I could pull a Springer in need from a shelter in Chesterfield, SC. The timing was right, yay! For the first time ever! So, we hopped right on it and within 30 minutes we were on the road to retrieve her. She's a heart melter and will be my very first foster.

When my husband went to leash her, she was totally submissive; didn't cower nor react with fear. It appeared to be more of relief and thankfulness. Before we left home we'd discussed whether to bring a crate, but my coordinator sent me a few photos of her in the shelter. I could tell she wouldn't be a problem; that she was a sweet girl. So, I passed on the crate idea. And it very well may have intimidated her anyway. All we did to prepare was to put a fluffy fleece comforter in the back seat of our SUV and grab a collar and leash, some fresh water and some crunchies. From the moment she jumped into our car she made herself comfortable. Right away she wanted to come up front with me to ride in my lap, but she was covered in fleas, so I couldn't allow it. I told her "no" softly and she got it.

As we went down the road, I'd reach back and pet her and talk sweetly to her. She loved it. She'd stick her pretty head between the front seats every few minutes to get some extra loving TLC and took a couple of naps in between. Quite literally, she smiled at me time and time again. I was trying to resist naming her, so I wouldn't bond, but tossed that idea out of the window like lightening. I am SO easy! I bond easily with animals and with people. Rescues of all sorts are just in my heart.

I looked at her coloring and she's a beautiful Tri colored Liver and White with the most golden vivid polka dots above her goldish amber eyes. At first I thought "Amber" would be a good name, then "Autumn" came to my mind. However, since it was the first day of Summer and here I was with this beautiful Springer starting a brand new life (now that she's in ESRA's loving hands), the name "Summer" came to my mind. It couldn't be a name more fitting than and it certainly suits her personality, too. It's also my fave time of the year. Plus, her name now becomes a part of her new story. One she will carry with her.What could be more perfect?

I'll be adding more to Summer's story as we go along, but she's been fully assessed and vaccinated. She's Heart Worm positive, and has what's called a "cherry" eye that will need to be repaired. She'll also need to be spayed. I'd guessed she was around three or four years old. And, I was right! She's also had a least one litter of puppies, I suspect, in the last year. Perhaps, even the last six months. This is something I'll be confirming with the vet, purely out of curiosity and to see if I can still 'read' a dog, like I believe I can. Oh and her teeth, they're pretty and white! So, something went wrong, or perhaps for her sake, went right!! Everything in life depends on perspective and perception. And, I'm going to do my best with my husband's help to make sure Summer's perception of life and humans are all GOOD!!!

After two weeks on Doxycycline, we'll start her Heartworm treatment. Once she has completed the treatment, she'll be spayed and her eye will be repaired. On my end, I'm going to my best to build her up. I feed my dogs Innova, it's an excellent "holistic" type food. Plus, I'll be giving her two teaspoons of Red Star Yeast in her food daily, along with 1/4 teaspoon 2x daily of Transfer Factor "H" human grade, and a couple of Oil of Evening Primrose Caps. All work together along with her diet to build up her immune system and make her healthy. The Oil of Evening Primrose will bring down the inflammation from the heartworms. In fact I use it myself for some of the neuropathic stuff I have going on beyond the Epilepsy. It's actually better than Vitamin E, if you happen to be a vitamin taker. So, I'm expecting to have Summer with me for at least two months. From there she'll be available for adoption, yet... I don't know, there's a reason God sent her to me. I'm not sure whether we're to become her forever family, yet I believe if God has a special family for her. Perhaps a special person living in NC. I just have one of my vibes and a little vision. ;)

Summer is very bright. She knows "no" as I mentioned above. She knows "come". We stopped at a park in Aberdeen, NC on our little journey to All Pets Vet Hospital in Sanford, NC. It was time for a break to water and walk her and I wanted to make sure it was in a nice spot with trees and away from the highway.

Summer walked perfectly on the leash as if she'd been on one many times before. She enjoyed her refreshing drink. Wasn't afraid in the least. And you can see from the photos below, that she's a ham for the camera, too. She just smiled herself silly and was amazingly content and comfortable.

I see no signs of abuse in Summer, like I still do with Chance. Sometimes such imprinting never goes away. Obviously, she's a Springer that was truly loved. Something must have happened to part her from her loved ones. Whether she got lost, or the economy has played a role, only the Lord knows. She's not an owner drop off. And her coat does appear as if it had been clipped down her back. Although, she had never been spayed, perhaps she was used to breed and got away. Or, her owners couldn't afford to spay her. I don't know, but what I do know, she's going to have an excellent life now. And deserves nothing less.

Summer is so calm and loving, she'd make a wonderful therapy dog. Or, a dog for a senior couple. I'm thinking she'd fit in well with kids, too. The conditions at the shelter were as best as could possibly be. The manager sorely has a heart for animals. And, although the kennels are outside, they're all covered and shaded. It's a pitiful sight, yet, the manager is doing all he can for the animals there. There was evidence that the kennels had just been washed out and there wasn't that icky kennel smell that some shelters have. He and I discussed a dog he's trying to help there with Demodex, and he brought me into a little office on the grounds with a fridge and pulled an antibiotic out of the fridge to show me. The fridge was clean and neat as as could be. That shows that the shelter manager is dedicated to his job, and I could tell it's "his" calling.

Summer was in a kennel with 7 other dogs and there were many other dogs at this shelter. Many cats, too. What amazed me about the cats is that the manager has hooded cat boxes in each of the cages. That's truly remarkable. He's also extremely hands on, and he's a person I'll be networking with, perhaps he's another divine connection. There's some information I'll be passing on to him that we discussed as to how to treat Parvo and some other alternative/holistic type treatments I'm aware of that he can use. He's so willing to do whatever he can for the animals at the shelter, we just couldn't have encountered a more remarkable fellow. He also fosters animals himself... that speaks volumes. Plus, he made it easy for ESRA... some shelters aren't always so accommodating for rescue groups. So, in essence he's the one who we owe a dept of gratitude to... he's played a key role in giving Summer a new life! God bless him!

Okay... here are a few photos. Now, remember, Summer is straight from the shelter in these pics... look at that smile!! And, please don't look at my crazy wild hair that day! I know... I know... vanity always plays a role with me. Hey, I'm a girl, it's in my DNA!

We'll be heading up the road to pick up Miss Summer tomorrow a.m. and will stop by PetSmart on our way up to buy her a new bowl. We've toys galore here, so no need for those. Stay tuned for more photos, we'll be celebrating Sydney's birthday on Saturday and our new addition. Party hats for all of the dogs. I'd never try to putting one on my cats, nor myself. If life stays calm... I may shoot a little video, too! We shall see...

I didn't mean to cut off her nose, fortunately it didn't spite her face.
Hi def format 16:9 on the vertical is tricky with moving Springers...

Summer warming up to whom she didn't know would become her new foster dad!
Puddy in her paws.

She's a happy girl... I mean me!
I remember when my hair was auburn and curly like Summer's ears! Oh my!

I'm telling Summer she's a pretty girl and a good girl, she is loving it!
I'm soooo over due for a trim and a highlight. OMG!

Newsweek on this stands this week!

No no! Not me, but it very well could be! So, including a photo of me to put my face on "E" once again. It will not be the last time, even when I receive a firm diagnosis. Whenever that will be, who knows? Yet, I'm continually working on Project Rewire.

Photo taken in Parkton, NC
on the track owned by the Red Springs & Northern Rail Road
I'm walking at a fast pace because I had a few more photos to snap
before heading to Red Springs to take my first Rail Car (Motor Car) ride, ever!
Very few shots will you glance of me outside without sunglasses on, ever!
It's been that way forever and forever it will remain. I am that light sensitive.

The Newsweek article below strikes un-really close to home for me. For my family members and loved ones who read my blog -- sorry guys, just keeping it real.

Please note for my un-net savvy readers... The title is the direct link to the article. If anyone feels compelled to buy this week's Newsweek magazine, instead why not donate the money to CURE in my name. Every little bit helps! My sister recently made such a donation and there are simply no words to thank her enough.

In the Grip of the Unknown

It takes courage and discipline to live every day with the haunting uncertainty of epilepsy. A good doctor helps, too.

By Jerry Adler and Eliza Gray | NEWSWEEK

Published Apr 11, 2009

From the magazine issue dated Apr 20, 2009

The worst thing about the epileptic seizure Dan Wheeless suffered on the first day of eighth grade wasn't dropping to the floor in the hallway and awakening with no memory of how he got there. It wasn't even being kicked to get up by his classmates, who thought his collapse and jerking were an act; like, say, piloting a fighter jet, being known as the class clown holds uncommon risk for people with a seizure disorder. The worst thing was how the drugs he took made his brain slow down, so that processing auditory information became painfully difficult.

Texas Tech University.........

are getting a good man... title is a clickable link......

International Expert Joins Newly Formed Department of Neurology at TTUHSC

Texas Tech University Health Sciences Center School of Medicine Dean Steven L. Berk, M.D., has announced the appointment of John C. DeToledo, M.D., as the chairman for the new Department of Neurology.

The creation of a new Department of Neurology was approved by the Texas Tech University System Board of Regents in May 2008. Berk said DeToledo’s vision will bring exceptional care in the field to this community.

“We anticipate that under Dr. DeToledo’s leadership, the Department of Neurology will bring new treatment methods, expand our research program and train neurologists for the future of West Texas.” Berk said.

************************************************************************************

Even though he never got back to me as said he would, what I do know is that no acute abnormalities were indicated on my MRI... that's a good thing! Yet, it leaves a pretty big window. But, I choose not to focus on that window. Honestly, I don't really have a concern for what I may or may not have. It's more of an informational thing......... so my testimony will be real, one people can identify with........ medical documentation certainly helps in such matters. At least the way my logical mind thinks, it makes sense.

My appointment with new doctor, Dr. Maria Sam, won't be until June 9th. So... I've another wait ahead of me. Not thrilled, but it's truly fine. As I've known, Wake Forest Baptist Epilepsy Center has been busy to absorbing Dr. DeToledo's vast patient load and care, plus everything else such an absorption involves. I'm on a list for a cancellation and having talked with ever kind, nurse Valerie, we discussed the possibility of my seeing another doctor than Dr. Maria Sam. But, I believe it's in my best interest to wait to see her. She's the one Dr. DeToledo recommended and described as a "digger". Which really appeals to me. In fact, I believe a digger is exactly what I need. I have such respect and confidence in Dr. DeToledo's knowledge -- the wait will be okay.

Am I disappointed he didn't contact me re. my MRI results? Nope, not at all. He told me goodbye, personally, and he did that with a very few patients... feel very blessed because of it. And, honestly, I'm beyond elated for him. That he's focusing on a new future and that new challenges are ahead for him. I'm beyond elated that he'll play the key role of creating the new Neurology Department at Texas Tech University. I know without a doubt he'll help change countless lives. People with Epilepsy, Parkinson's, Alzheimer's and Dementia......... God just called him to a "higher" purpose.

In the meantime, I've gone back and read through my medical histories -- histories two previous neurologists put together and there are some key errors. I've also dug deep into my memory banks with the help of a few triggers and my mother, and have recalled some stuff that just may prove to be beneficial.

I live in the now, and am hopeful about my future......... but sometimes, the answers... the true keys... lie in the past. I wrote my Pastor a note today and mentioned that I feel the Lord, keeps telling me to go back to what I know. Truly, it's the way to keep things easy for me. It's the way not to lose what I already have, like for instance, although I have a new MacBook, it's really become a new rehab tool for me. In some ways it's easy, but I'm able to do more creative things with a Windows based machine. It's what I'm familiar with -- MS operating systems I've been up close and personal with since... yikes, 1982! I'm faster on it, and don't beat myself up, like I do on my MacBook when it's really designed to be more simple for most folks... the way my brain is wired right now, it's not. Now, the curious thing is that my creative talents are improving. My left brain is in overdrive in the idea factory. My right brain is better, too. Yet, I'm still experiencing 24/7 sensations and episodes. Just makes me a bit more atypically special, I guess. But, what I'm getting out of it, is a killer new laptop. Don't like the vulnerabilities to viruses that come along with MS, but will make sure to keep it protected, and auto updated, kinda like God does with me -- when I allow Him, too. Much comes down to a choice.

Yet, More than ever, whatever seizure condition, neuro condition, whatever the heck it is... I'm certain I've had episodes all of my life, however, as I've said before, I've just learned to push past, cope and adapt. Even though pushing past and coping isn't quite as easy as it used to be (age plays a role; life in general plays its own role), I'm confident, I'm on the path to healing... and that God is directing everything.


Even during the times I feel like I have no one... I know God is in all of this... He is working actively in my life... putting all of the pieces together... building my testimony.

I just need to be patient, remain hopeful and keep the faith. And, everything in perspective!! Keeping walking and living in the now, yet focusing ahead. And putting whatever bits and pieces together I can about my medical history. For somone healthy for all intents and purposes, there's been a lot of junk in that area. But, whatever!!! Whew!

Enough of that stuff. Next who knows how many entries will be photographic......... phoetry-o-graphic......... involving fun and beautiful things I see with my green eyes. All sorts of things! A new hobby called Railcar riding......... and a new membership in the Red Springs & Northern Railroad for my husband and I. Wonderful new people from various backgrounds sharing something in common, and another train station for me. This one the exact opposite of the Hamlet Historical Depot. It's not pretty yet, but it's immensely loved by many. They've poured their hearts and souls into it, along with having some awesome fun at the same time. What a combo! And, the stories... even the railcars have stories. But, that's a whole 'nuther blog entry. Perhaps, even another blog! We shall see.

Still making some changes here -- switching out photos on the right column, etc. Adding notes. What nots. Thought about going to Word Press because of the page feature. Even researched it a bit today (when I should be doing other things), but I also like to do research in between other things -- keeps the brain working. It's learning to multi-task again.

However, soon will be blogging for a certain puppy named Sydney via Word Press. Sydney is taking her love affair with a certain Cairn Terrier, by the name of Toby, public soon. Living apart is hard for them, so writing back and forth will help them. Recently, I had an opportunity to meet two wonderful men with the North Carolina Museums Council -- one by the name of Rusty is an artifact handler. He told me that the most valuable artififact ever is a letter. So, Sydney and Toby are on the right track -- just using a hi-tech method.

Right now, like with my MacBook and new Windows laptop, I want to become proficient on both. Not lose anything in between, nor get stuck in the middle. Yet, at the same time, I need to be careful not to take on too much. The cool thing is that the new laptop will buy me some time back, because this poor Vaio, is so slow. Yet, I still love it. It's been such a great friend and partner.

A quick apology to Sir Sir and my cousin, the skippidy gifted one on the right coast....... I think you two have been waiting for me to come through on my end of the Sydney/Toby affair, I'm there! Just a little life got in the way, and I've been learning some new stuff along the way. Still making contacts. Much in part with the help of another cousin on the left coast. One of my best friends, ever.

Old news... new news... mood swings...

This may sound like I'm feeling sorry for myself, but I'm really not... most of my blog in fact comes across as if I'm utterly self-absorbed, focused only on myself. There are ways I am out of necessity and ways I'm not. The ways I'm not first...

My heart thinks much of others... it desires to help others. It can't stand all of the attention drawing to myself. Truly, that part is like finger nails on a blackboard. My heart wants to draw attention to causes outward. So, even at 55 years old, that means I have dreams of a future, a bright one, where God can use me to help others in meaningful ways. Where I can make a little bit of a difference -- I'd say make lots of differences, yet I know... anything I do... on this planet... is up to Him... all I have to do is be willing. So little/big difference(s) = not my call. What I do believe is that He's preparing me for something... many things maybe. As well, as life in general stuff. Whatever His perfect will is for me... I'm willing. I trust Him... and I know He's a plan for me... I'm simply in a period of tribulation, which the Bible tells us will come.

The ways I am self absorbed -- and focused... pretty much all comes down to a few simple things that aren't so simple. The bulk of which come down to "health" issues... beyond the human nature part. First, and foremost, I need a diagnosis. Not having one... as much as I have faith that I'm healed... and am on the path to manisfestation... and am joyful about the new things God is doing for me... the "unknown" is getting old. Very very old. Not just to me, but to my family members and to those who care about me. It's wearing on them, too.

Upside, we're on the road to finally getting one. With "E" it's not an easy thing...

Down side... no word yet on MRI results. No new news. So, even though it's not in my hands... it's the waiting that's a bit exhausting. I've been waiting a LONG time now... since January 2006 for a clear diagnosis, so it's not just about awaiting my MRI results -- the past three plus years all tie together -- it's been one long haul for me as well as for my husband and mother, in particular.

So MRI results, I welcome, even if the imaging shows not much of anything, I already know what the next step will be (not one I welcome, but am willing to go through) to get a firm diagnosis. And, that will be to go back into the Comprehensive Epilepsy Center at Wake Forest Baptist Hospital Phase I Monitoring Unit... the one thing, I absolutely don't want to do unless it's totally necessary. There's a story about my first in-patient experience in the EMU last May. Short version -- we didn't capture the data needed to make a diagnosis. Something I've been reassured happens often. I'd pinned so many hopes on the results of my stay there -- to walk out without a diagnosis really hit me in my human side. Yet, the excellent part... is that it led me to let go and let God... and soon what came of it was "Project Rewire"... not just the blog.

So... in essence I'm living in limbo... kinda stuck at the moment. As the "about me" indicates in my profile, I don't experience common "auras" or "warning signals"... like most people with "E" do... if it's "E" that I have. Which complicates things further and makes it more imperative for my safety to stay in tune moment by moment with how I feel physically (and even emotionally to a degree). Every moment is filtered. Add the side effects of KeppraXR, I'm fairly well set up for mood swings and other not so fun feelings at times. Fortunately, God made me to be a "thinker" which means I have the ability to think my way through my feelings and can redirect and focus my thoughts and feelings and swing myself back up.

Truly... again as the "about me" indicates... I liken it to pressing my finger up to the wind constantly to see how it's blowing. From the most simple thing such as going up and down the stairs... to taking a shower or bath... swimming in my pool in the summer... to even taking a walk alone in my yard, or with my Springers, it's important for me to stay aware of how I feel. Of course, sitting or laying around, it's no biggie because there is no chance I'll fall. My balance is off on my right side, and I've taken a tumble here and there -- there would be more, but I've learned to become an excellent catcher of myself. So... without going further into detail... it's just a fact, it's hard to get away from myself... yesterday was one of those days where I did experience a few slight warning signals because more and more I'm understanding that stress (good and bad... even the excellent) are triggers for me. Yesterday, I had a triple combo, so spent much of the day very still... on my bed... with my laptop... surrounded by my Springers and my big black cat. Had many sensations, pains stabbing in my head... tingly feelings and little jerks all over from my head, in my cheek, twitches in my arms and legs... clicking sounds in my head. Slight shudders. This happens whatever I do... during phone calls... or fixing supper. Sitting still. I just push past and unless you know what to look for, you won't see it. just here one sec, gone the next. Add that 24/7 "junk"... it can become overwhelming unless I direct my focus elsewhere, or just turn my face to the wall, pray and listen to my music. Yet, I was blessed because I didn't have a headache or any pressure. Sometimes it's all of the above and then some. A day without a headache, is a wonderful thing!!

Today... the weatherman is promising a gorgeous day until late this afternoon when rains are supposed to roll in. It's almost sunny and clear right now. Temps are heading to the 70s with a bit of wind. My husband is working today, so I'm praying for calm winds internally because I so want to get outside, maybe take a drive by myself down to one of my special places here... my train station... and take a few walks around it. Maybe take some photos. Just to feel a tad independently again would help my spirit much... spend some special time with just myself would help my mood swings. Just meeting my husband for lunch today would be a dream come true these days -- something we used to do routinely for many years. If any of you near the courthouse read this... tell him I said hi.

At the moment, it's too early to tell how "my" internal winds will blow today. And, they can change in a flash... in fact, even a flash of light can do it!

As far as sharing the other videos I shot or photos of my trip to have the MRI taken... blogs are similar to newspapers. They're supremely time sensitive when it comes to certain things. I won't be sharing any videos... they've fallen into the "old" news category. Hopefully, I'll be able to report some news sometime soon. Maybe add a few stills. It would be amazing if I can snap a few shots of something outside today... away from this house... while the weather is pretty to share instead.

God Bless...

Un-edited me on MRI Day -- Part one... youtube

Note: I've been back and forth about pulling this YouTube because I pretty much despise it. It shows me vulnerable and not articulating well. I don't look well, either. But, it's part of the disease and in comparison to my two Project Rewire anniversary YouTubes, there has been significant improvement in my speech, however, my writing ability has diminished somewhat and my spelling is tanking... I'm leaving it the "image/place holder" of it here, but the video will not play if you click into it. Dated: October 24, 3009. 

Yep, this is me... "just Jeanne" putting a face on Epilepsy down below in my first public youtube, ever! Waaaay scary thing for me to do. But, just believe that I must. Feel compelled to.

However, just so you know, we're really still not sure yet. Of what, you may ask? If it's Epilepsy or not. Unfortunately. Meaning, I don't have a clear diagnosis as yet. And, we're at a place where we can't assume any longer. Since I'm kind of a puzzle, and AED (Anti Epilepsy Drugs) have yet to cause any significant changes to my condition... the jury is still out, so to speak. I'm a prime example of the whys more research is needed. To be honest, I was very much hoping we'd find a little something out today, but the MRI Imaging Center at Wake Forest Baptist Medical Centers was running quite slow. We had a two hour wait. Yet!! NO problem whatsoever. If one can't find compassion in such a place... compassion simply can't be found.

The people we saw, oh my -- heart touchers all of them! Children who'd obviously had radiation or chemo. One sight impaired with developmental problems; seniors with similar appearances and conditions. Everyone's families. Then, add the stories we heard, the two hour wait didn't matter one iota. Spending time in such a place puts life in perspective, and makes one count their blessings in quick time...

And, speaking of blessings, one of my special blessings this past year has been my Epileptologist, Dr. John DeToledo. The dear man, was also running a bit behind. Came in, sat down, asked how I was and chatted a little, then he broke the news to me that he's leaving to work at another center in Texas. And, today was his last day! Sad news for me, but I couldn't be more than elated for him, as well as the center he's becoming a part of... I literally teared up in the examining room and boo-hooed in the car. Yet, felt okay because he's still going to review my MRI results and should touch base sometime with me on Monday.

During our visit as always he was caring, compassionate and very understanding. We discussed whom might be the best doctor to take over my care there. I feel completely confident we made the right decision and have chosen the right person. He's always called himself a "hammer' to me and has told me that everything else are nails, which is something I've found comforting, since stuff with me is so exasperatingly atypically unique. He described my new Epileptologist as a "digger" and that she likes to figure things out. Wow! Well, I am digger, too! And, enjoy figuring things out is part of what I'm all about. So, it sounds like he's leaving me in good hands. That in and of itself, seriously helped relieve some anxiety right off the bat. So, in spite of having to wait a few more days to hear the MRI results, and losing my favorite doctor ever, it was a day full of blessings. All around. :)

Oh!!! And, I'm thrilled to share that Best Buy took my router back, even though I've only had it since November last year. The new one I chose in its place was a wee bit more expensive, but has more ooommmppphhh and is much more powerful. Technology advances so quickly the one I replaced has already been closed out (but I heard it was due to a bug -- no kidding!)... so I'm actually better off since it croaked.

Well... here goes... just me, no edits, titles, subtitles, credits, effects, toots or whistles... for all intents and purposes, if I floofed and airbrushed up, I wouldn't be real. More stuff will follow... as I get my home network networking again.

P.S. If you've read through my blog, you already know I have word retrieval issues. Some times my speech lags a little, and I lose track for a sec... it's just part of it. It bothers me greatly, but I've had much improvement over the past few months, although... my neuro activity really isn't better. 24/7 sensations never stop and as much as I know God is healing me... I'm still just a little person and it gets exhausting at times, it's why I appreciate the caring and encouragement I receive from those close to me. Just getting "my words' back has been a HUGE blessing to me. Know one knows how much it helps. Add my close ones... God is doing so much for me. Amazing!

Thanks to all of my readers... I appreciate each and every one of you.

It was great meeting you two!

Just a simple post to my new friends from the triad area of NC... the adorable couple my husband I and met at the Hamlet Depot last Sunday afternoon.

I knew the moment I saw you both run across the field to photograph a train passing by that you were diehard trainiacs. That we were train kindred spirit! Both my husband and I enjoyed your company ever so much. The fellowship was grand. And gosh, the weather couldn't have been more perfect for train chatting and photo taking.

Looking forward to connecting again sometime soon... and take that hike to the trestle! Yes! In the meantime, below is a little slide show of the photos I took. Most were taken when I slipped away on my own, so I'll warn you... all of my pics won't be trains. Hope you enjoy, anyway.

Also, I'm going to include another slide show of a few photos Steve took from the bridge last Autumn -- to give you that interesting perspective I mentioned to you. There will be many shots of me, I must warn you... I've a lavender sweater on, and this is Epilepsy Awareness Month and the "cause" color is lavender, so I figured I might as well, take the opportunity to put a face on Epilepsy, while showing you the bridge perspective. I've one of mine I could have used instead, but there are too many photos of it for you to track through.

Let's stay in touch!! Come back down for some fries! But, let's bring our own buns to be safe. LOL!






These were taken last fall... when I first fell in love with the Hamlet Depot and all of the old trainmen volunteers there, and their remarkable stories!

Going back to Autumn for a few... remembering...

A hike!!! But, I'm going to go all over the place to get there first. LOL

I've several blog entries I've wanted to post, yet the last couple of days have been "interesting"... that's a nice way to say I've had a bit more neuro activity than usual. Good stress and both bad stress can bring such activity on. Such a bummer when it comes to the excellent stress! However, I've learned when those times come, it's better just to be still, rather than do my normal routine of pushing past it. Pushing past can cause more damage when one is like me and seizures aren't under control. There's a fine line between knowing what's best and what's not best. How far to push. And, when not to. Not thrilled about it, but that's the way it is.

I'm trying to use wisdom, yet I know I need more. (Something I need to write on my whiteboard left handed... "God, please bless me with more wisdom and sensitivity"... and I will as soon as I finish posting this...) I've discovered on days when I have lots of energy I can do tons of stuff to take advantage of it. But, then there is usually a payback and I may find myself in slo-mo for a couple of days afterwards. Add the pesky side effects of Anti Epilepsy Drugs, it can be oy-veying! But!! As long as progress is being made, though... who cares?

I do my best to follow through on my commitments. With those that take me out of the house, I do a MUCH better job of it. Historically, I always come through. But, when it comes to the stuff around the house... not so. This happens when there are items I need to send my sister or niece, or both. Package sits around. Fortunately, they understand. I believe a good part of that has to do with living quasi home bound. I don't have the freedom at the moment to run my own errands because I don't experience typical warning signals... auras. I'd pray to ask God for auras, but it just feels counterproductive to Project Rewire. Once totally independent, now dependent is a pain in the rear.

Not whining... just sharing this so others living with atypical Epilepsy will know there's another person that *gets* it. (And, for those who don't have it, but may know someone that does have it, it may help with the understanding part. For other readers who aren't touched by the disease... it'll give you a glimpse of why attention needs to be called to the disease. You just don't know how much I don't like talking about myself or the condition, but determined it's a must. At least from my perspective, it is.)

My mother is home bound and has been for years and years. She tells me not to let it bother me... that her home has become a place of peace for her. I keep reminding her, that she's 89 and I'm just 55 (yes, true, that is old to some of my readers, but I still feel young so it kinda complicates things for me). There's much I want to do... I've a list a mile long. I'd like to be a "hands on" volunteer with ESRA, not that I'm not happy being a mom to two rescue Springers and two rescue kitties, I'd simply like to do more. I've felt it so much with the recent River Valley Puppy Mill English Springer Rescue America rescue efforts. I've even felt an urge when missionaries have come to our church last year, two in particular. One from Guatemala. He and his family are literally seeing miracles there. The other builds churches or restores old buildings to churches in Russia! Felt the nudge, but I'm caught up in the how to's. Yet, I know that's a calling not everyone gets... if it's meant to be... God will heal me and put me on the path... if not, supporting smaller mission efforts is the way to go for the time being.

I'd also like to be more hands on in my church activities. My husband and I worked with our teens this past fall. Those teens inspired me so, I felt such a connect with them. One gal in particular. She has really become an inspiration to me. Literally has a prayer closet in her home. Amazing!! She is only 14! I realized in observing her, God didn't ask us to lead the group for them, it was for me. To minister to me. Thank you, God... for doing that for me. It helped me not to be so intimidated by speaking out loud in front of a group again. Never knowing if my words will come out right has been a struggle for me, but it began turning around in speaking to these teens. He was preparing me for something else I recently did and didn't believe I was capable of. Still don't... yet I opened my mouth and there it went.

Physically, of late, neuro activity has escalated quite a bit, and there are other things going on... like we all have, so we felt it best to give it up. As much as I try, I'm not the most reliable person on the planet these days... Epilepsy dictates my daily life at times. Such an annoyance to someone who was extremely independent... yet, I know... being pretty much home bound has led me to seek shelter with the Lord... it's given me alone time so the Holy Spirit, the one who indwells inside of me... can work on me. It's given me time for ground work to be done... so the healing that I know is mine... will be manifested. I use the time to turn my face to the wall and listen two my two favorite albums... All That Is Within Me and Spoken For both by Mercy Me. Their music really ministers to me, and since for some unknown reason reading words on paper doesn't quite work now like it used to, it's the method I use to get the Word into me. Listening to music get's the left side of the brain working... and I feel it happening to mine. I receive encouragement from their music, too. Inspiration and even borrow some of their lyrics to use in my prayer life. I even try to go to sleep listening to their music. For those of us who are faith filled believers... thank God we believe in a God who heals... and thank God for faith filled believers who love and care for us... the ones who pray for us. It gives us hope... which puts feet to our faith. For anyone reading who may not be a believer. God loves you, too. He just wants to hear from you... He's always listening... just like someone who really cares about you does.

Sometimes people are healed immediately when they ask God for healing... with others it's a journey... I believe with my whole heart, I'm on that journey... on the path right now. Through God's grace... it will manifest one day and until then, He's also giving me the grace to be thankful for condition that's helped me get closer to him. It's not a condition I'm enduring... I'm living life in spite of it! Just with very interesting twists and turns... but undeniably research is needed big time for all of us. Again of the 3 million living in the United States with Epilepsy, 2 million experience life with uncontrolled seizures. I'm merely 1 of them.

So... about that trestle hike last Autumn... the day was incredible!!! It was in the 70s. Gorgeous!! The colors were amazing this past Fall not just here but everywhere on the planet, I betcha!

I've gotten back to some of my family roots of late... my railroad family roots. There's a story my mother has told me all of my life about a railroad trestle in West Virginia, an event that occurred that scared her so badly, she's never forgotten. Each time she shares it, one can't help but be right there with her. Well, there's an old railroad trestle in our county that goes across the Pee Dee River. It's an ancient trestle. And, both my husband and I wanted to see it close up. It's hard to imagine how such vulnerable structures can carry the weight of a huge train. Not just one... but many cross this particular trestle every single day in both directions! There will be more coming about this trestle... it's become one of my fave places here and one I want to photograph as the seasons change. (But, not during the summer because it's snakey!) Don't do snakes! Milkshakes, yes!

We weren't sure how far off the road we'd have to hike the rails to get there, so we Google Earthed it. If any of my readers have never used Google Earth, you simply must. You can literally fly to anywhere in the world on that thing! My cousin in VIrginia calls it a tar baby... his advice to me before we ever used it was not to download it unless one has hours to spare, 'cause one will find oneself flying everywhere. Ha! He was right, too.

Well, we checked it out and it appeared to be only about a mile and a half hike to the trestle. In -- not round trip. Quite doable in one afternoon. We had a marvelous time. I'd been kind of stuck in the house for a few days and wow, to get outside on such a lovely day, was downright thrilling. The colors as I mentioned above were like an artist's canvas. The sounds of nature... the birds, crickets, wind in the trees, Hitchcock Creek in the background, as well as the Pee Dee River up ahead of us just made for the best "natural" music.

Also, during our journey there and back, six trains came by! Oh man!!! Talk about a rush!!! It was marvelous!!! Of course, I had my camera with me (still only had my little zoomy one then) and it just so happens it has a sweet little video feature on it. In all, I videoed six trains that afternoon! It was so exciting and uplifting to me. I realized trains... the experience of and videoing them close up was much for me, like flying in our powered parachute ultralight contraption is for my husband. Such a rush to take shots 10 feet away, sitting on the ground. Every part of me could feel the trains. I made sure to tell my husband... now this is a biggie for those of you who may not know anything about trains... don't listen to the engine... listen to the rails. As each car passes, each has a different sound, depending upon its load, if there is a load, if it's an open car or closed. Also, the sound changes as it passes... the middle of a train as it passes sounds different than the beginning... and the end, is my favorite. It jingles. It's squeaky. It kinda hurts the ears, but it's music to my ears, because I made many trips back and forth on passenger trains as a kid from Virginia where I grew up to Hamlet, NC where my grandparents and uncle lived. We were always in the last car... it was called the Tidewater car. Both my grandfather and uncle were railroad men and dedicated their lives to it. During most trips I was with my mother, but a few super special ones, it was just myself and my wonderful grandfather. The end of a train sounds always brings me back to my times with him. To all of our family reunions here special times with my family...

On to the slide shows... there will be two. And one day, maybe with some encouragement, I'll share a couple videos. When you view my photos, they'll change after the first few. I found the hi-def 16:9 setting on my camera! Yay! That's one of those, once you find that setting, it's hard to go back to normal. There is also a third trestle slide show when we started to hike to the trestle from the other side of the Pee Dee River... it began to rain, so we didn't make it, but caught some pretty photos and will share soon. When you view the slide shows check out the curves of the rails and the sunlight reflecting through the trees and off the rails. Try to listen for nature... birds... crickets... a creek in the background and all of a sudden there's a train less than 100 feet away. A few toots of the whistle and they're on top of you... without the horn you'd never hear them... often times due to the wind and surrounding sounds they're stealth... anyone who is used to being around trains can tell you... you feel them first! So, don't go photographing trains or videoing them unless you use caution! My husband found himself in the middle of the trestle when one was approaching... almost one of those I told you so things. LOL

Thanks for reading to all of you I know personally. Mind you, there are more than a few of you! And thank you to those of you who've just begun to follow my blog or are new FaceBook friends... God Bless... :)

Hits very close to home for me...

From February 12, 2009 NYTimes.com... click the lavendar link immediately below...

Patient: Voices

More than 3 million people in the U.S. have some form of epilepsy. While seizures come in various forms, those with epilepsy cope with similar issues: social stigma, complex treatment options and a feeling of powerlessness.

The interactive stories literally brought tears to my eyes, and helped open my pilot's eyes. Even for those closest to us living with such a condition, It's still hard to comprehend when you're not the one living with it inside your brain and body.

Photo taken by our good "Ship Captain/Poet" friend...
outside Hamlet Historical Depot
My favorite hangout!
Hamlet, NC

P.S. Happy Birthday to my dear friend back home in Virginia Beach. Let's stick our feet in some orange juice to celebrate, what do you say?