Showing posts with label Project Rewire. Show all posts
Showing posts with label Project Rewire. Show all posts
Thursday, July 30, 2009
We went flying this past Saturday... an album for my BIL...
It was a foggy morning at the Richmond County Airport this past Saturday, but we all successfully took to the air in our powered parachutes. We flew east to Hamlet, NC to cruise above the Hamlet Historical Train Depot & surrounding area. Jim, my brother-in-law, owns and flies the dark blue Destiny. Del, our local ppc-flying buddy owns the yellow Infinity.
Please note that many of the shots will appear hazy... that's due to FOG. Fog freaks out my little camera, so some shots aren't that hot! We had to wait for it to clear a bit before we could take off. It continued to hang in spots, yet there were gorgeous blue skies, too and some fluffy white cloud cover. As we were returning to the airport another wave of fog was heading towards us from the west. Steve and I decided to land. Then, Jim came in shortly behind us. Del flew a bit longer, down to the Pee Dee River and the fog caught up with him as he was returning to the airport. Steve was able to talk him through the fog on our aircraft radio. Dare I say it was an interesting few moments? Yes!
Thursday, April 16, 2009
Sleeping Trees.........
Just some trees I snapped off the side of the road in Sanford, NC after we'd traveled to an English Springer Spaniel Rescue social gathering near Holly Springs, NC.
This "grove" of trees just really struck me, in fact, I asked my husband to turn around the car, so I could photograph them. The sky was so incredibly blue, and setting was so soft. I'm super light sensitive and it triggers things at times for me. Well, the sun had found a place where it had become easier for me to tolerate. As much as I love the sun, in a moving car, with light dappling, it can do some not so fun stuff to me. We'd already had a long day. Both Sydney and Chance were with us. It had been a stressful day for them, because it was their first social gathering with other Springers and their humans. Both of my Springers are rescues and are imprinted in various ways. Plus, these days I tend not to mingle so much -- and try to avoid a ton of activity. So,we pretty muck kept a bit of a distance. I wanted to observe their behaviors to see what I needed to work on, and both had their own triggers going on. I could elaborate, but if I did, this would be 20 pages, and not a blog entry.
Anyway, I needed to see those trees. And, Sydney and Chance needed a safe place to use the facilities. On the other side of the road from the grove of trees was the perfect place. When I'm tired, stressed and/or am going through dappling light issues, it always help for me to spend a few moments looking through a viewfinder on one of my cameras. It helps me re-focus and I can shut the light out easily and focus on whatever images I want to shoot. That's just the way it works for me.
The trees reminded me of something one might see far away. As I gazed upon them, I imagined sleeping lions snoozing underneath them and big elephants lumbering around behind them having just eaten all of the foliage off for an early dinner.
To me, it's another example of seeing beauty in the imperfections. The trees aren't imperfect, yet they've weathered with time. They've wisdom for all of their years. They've seen a great deal during their lifetimes. And, they are strong. They depend upon the rain God gives to water them, even though their roots are deep. I expect they like to feel the rain, and if they're an thing like me, they enjoy watching the storms. In fact, they get to be right out in the middle of them. Front row seats. To me, they are beautiful not only for themselves, but because I could see the sky through them, and the birds who flew behind them. The scenery in the distance, too.
To me, they are another glorious testament to them and to God that they're still standing, because one can tell they've been through much. Although, I didn't walk up close enough to see, I could tell. Now, whether they are dead or are just sleeping getting ready to burst forth for Spring, I may never know. Since we'd made a wrong turn that took us down that road; I'm not sure if I'll ever travel that way again. Maybe. Maybe not.
If it's meant to be, sooner or later, I will......... that much I'm sure of. Either way, those trees just struck me in a manner in which I felt compelled to ask my husband to stop... go back... turn around... I simply had to take photos of those trees.
Was it really the wrong road? Or, the right road? Because if it was the wrong road, I'd have surely missed seeing some sleeping lovely trees -- trees that impressed me so, I couldn't miss the opportunity to take their photos. I would have missed imagining the wonderful lion and elephant. So, turned out that it was precisely the right road, no doubt about it. Precisely! And our timing was perfect, all along. That is some God knew, but we didn't.
I knew if we kept driving and turned back even a few minutes later, the lighting would be different. The color of the sky and the clouds change moment by moment. The shadowing would be different. And, if tried to come back on another day, would the trees even be there. Who knows? But, it certainly does mean that I won't wonder about them. If new life sprang forth, or if they are just resting as they slowly turn into dust.
What I've learned through my very own life, is that sometimes in life, we only get only one opportunity to seize the moment. We can never get it back. While other times, one can get part of a moment back......... while other times, things truly do come full circle. But, to see it one must be looking for such opportunities. Watching and listening for such opportunities. It's much like trying to snap photos of my elusive Piliated Woodpeckers. I have two that live in the forest right beside me. They are there. I catch glimpses of them. I hear them at certain times of the day. Sometimes I even watch them for a few minutes, but don't have my camera. I enjoy those moments ever so much. Yet, I still would love to capture their pictures, individually or together. When I see them, the choice I always must make is whether to watch closely, or run for my camera. I don't carry a camera with me around my yard deliberately because I'm seeking such moments. More about that in another post one day.
Regardless, nothing ever takes away from that first moment... that first opportunity. Those trees added to my life that day. And, in sharing them with my readers, they may or may not change your life, but you'll recall that they added to, or said differently, changed mine. It's the little things that make the differences. Special moments that get etched. That day was a good day. We saw old friends and met new ones. Met tons of Springers. And, a super special Lemon and White little girl Springer named Sophie, same age as Sydney. Who has finally found her much needed forever home, thanks to ESRA! Yay! But, for me personally... my "me" moment was seeing those trees. I'll remember the rest. But, differently.
Life changing stuff can happen in tiny moments. Artists have been inspired to paint pictures. Photographers have captured simple shots that reflect life changing moments, and life changing shots of simple moments. For poets and writers the same is true. For those that enjoy their artistry, the same is true.
I remember the first time I ever read Joyce Kilmer's Trees, I've never looked at trees the same since. I was in seventh grade then, and already adored trees. But, from that point on, I try to remember to look really closely at a tree to gaze intently to see every bit of it I can. Every detail, even though I know I'm missing a few. As I view each tree, I begin to describe it to myself, each little detail, and often times, it's in the form of a poem. It's happening more often now than ever, which I actually attribute to Project Rewire.
So, here's a little slide show of my "Sleeping Trees". It's part of a series I'm working on. Then, after the slide show, I'm including the poem Trees by Joyce Kilmer.
This "grove" of trees just really struck me, in fact, I asked my husband to turn around the car, so I could photograph them. The sky was so incredibly blue, and setting was so soft. I'm super light sensitive and it triggers things at times for me. Well, the sun had found a place where it had become easier for me to tolerate. As much as I love the sun, in a moving car, with light dappling, it can do some not so fun stuff to me. We'd already had a long day. Both Sydney and Chance were with us. It had been a stressful day for them, because it was their first social gathering with other Springers and their humans. Both of my Springers are rescues and are imprinted in various ways. Plus, these days I tend not to mingle so much -- and try to avoid a ton of activity. So,we pretty muck kept a bit of a distance. I wanted to observe their behaviors to see what I needed to work on, and both had their own triggers going on. I could elaborate, but if I did, this would be 20 pages, and not a blog entry.
Anyway, I needed to see those trees. And, Sydney and Chance needed a safe place to use the facilities. On the other side of the road from the grove of trees was the perfect place. When I'm tired, stressed and/or am going through dappling light issues, it always help for me to spend a few moments looking through a viewfinder on one of my cameras. It helps me re-focus and I can shut the light out easily and focus on whatever images I want to shoot. That's just the way it works for me.
The trees reminded me of something one might see far away. As I gazed upon them, I imagined sleeping lions snoozing underneath them and big elephants lumbering around behind them having just eaten all of the foliage off for an early dinner.
To me, it's another example of seeing beauty in the imperfections. The trees aren't imperfect, yet they've weathered with time. They've wisdom for all of their years. They've seen a great deal during their lifetimes. And, they are strong. They depend upon the rain God gives to water them, even though their roots are deep. I expect they like to feel the rain, and if they're an thing like me, they enjoy watching the storms. In fact, they get to be right out in the middle of them. Front row seats. To me, they are beautiful not only for themselves, but because I could see the sky through them, and the birds who flew behind them. The scenery in the distance, too.
To me, they are another glorious testament to them and to God that they're still standing, because one can tell they've been through much. Although, I didn't walk up close enough to see, I could tell. Now, whether they are dead or are just sleeping getting ready to burst forth for Spring, I may never know. Since we'd made a wrong turn that took us down that road; I'm not sure if I'll ever travel that way again. Maybe. Maybe not.
If it's meant to be, sooner or later, I will......... that much I'm sure of. Either way, those trees just struck me in a manner in which I felt compelled to ask my husband to stop... go back... turn around... I simply had to take photos of those trees.
Was it really the wrong road? Or, the right road? Because if it was the wrong road, I'd have surely missed seeing some sleeping lovely trees -- trees that impressed me so, I couldn't miss the opportunity to take their photos. I would have missed imagining the wonderful lion and elephant. So, turned out that it was precisely the right road, no doubt about it. Precisely! And our timing was perfect, all along. That is some God knew, but we didn't.
I knew if we kept driving and turned back even a few minutes later, the lighting would be different. The color of the sky and the clouds change moment by moment. The shadowing would be different. And, if tried to come back on another day, would the trees even be there. Who knows? But, it certainly does mean that I won't wonder about them. If new life sprang forth, or if they are just resting as they slowly turn into dust.
What I've learned through my very own life, is that sometimes in life, we only get only one opportunity to seize the moment. We can never get it back. While other times, one can get part of a moment back......... while other times, things truly do come full circle. But, to see it one must be looking for such opportunities. Watching and listening for such opportunities. It's much like trying to snap photos of my elusive Piliated Woodpeckers. I have two that live in the forest right beside me. They are there. I catch glimpses of them. I hear them at certain times of the day. Sometimes I even watch them for a few minutes, but don't have my camera. I enjoy those moments ever so much. Yet, I still would love to capture their pictures, individually or together. When I see them, the choice I always must make is whether to watch closely, or run for my camera. I don't carry a camera with me around my yard deliberately because I'm seeking such moments. More about that in another post one day.
Regardless, nothing ever takes away from that first moment... that first opportunity. Those trees added to my life that day. And, in sharing them with my readers, they may or may not change your life, but you'll recall that they added to, or said differently, changed mine. It's the little things that make the differences. Special moments that get etched. That day was a good day. We saw old friends and met new ones. Met tons of Springers. And, a super special Lemon and White little girl Springer named Sophie, same age as Sydney. Who has finally found her much needed forever home, thanks to ESRA! Yay! But, for me personally... my "me" moment was seeing those trees. I'll remember the rest. But, differently.
Life changing stuff can happen in tiny moments. Artists have been inspired to paint pictures. Photographers have captured simple shots that reflect life changing moments, and life changing shots of simple moments. For poets and writers the same is true. For those that enjoy their artistry, the same is true.
I remember the first time I ever read Joyce Kilmer's Trees, I've never looked at trees the same since. I was in seventh grade then, and already adored trees. But, from that point on, I try to remember to look really closely at a tree to gaze intently to see every bit of it I can. Every detail, even though I know I'm missing a few. As I view each tree, I begin to describe it to myself, each little detail, and often times, it's in the form of a poem. It's happening more often now than ever, which I actually attribute to Project Rewire.
So, here's a little slide show of my "Sleeping Trees". It's part of a series I'm working on. Then, after the slide show, I'm including the poem Trees by Joyce Kilmer.
Treesby: Joyce Kilmer (1886-1918)
I THINK that I shall never see
- A poem lovely as a tree.
- A tree whose hungry mouth is prest
- Against the earth's sweet flowing breast;
- A tree that looks at God all day,
- And lifts her leafy arms to pray;
- A tree that may in Summer wear
- A nest of robins in her hair;
- Upon whose bosom snow has lain;
- Who intimately lives with rain.
- Poems are made by fools like me,
But only God can make a tree.
Trees was originally published in Trees and Other Poems by Joyce Kilmer
New York: George H. Doran Company, 1914
**Still making changes here and I've taken on two more blogging gigs. One is a joint venture involving Sydney and her Cairn Terrier, boyfriend, Toby which will go live very soon. While the other, I just go the go ahead to begin. It will be mine, but I'm doing it on behalf of the Red Springs & Northern Rail Road. Many of my photos will be used of events and the like. But, the cool thing is that the RS&N RR members will be sharing trip reports and stories, as well as their photos, too. For me, it's a win win. it's a way I can help out and give some time away and I love sharing stories from other people and their photos, too. I'm receiving so many pictures and stories now, actually, from all over the world. It's crazy!**
Saturday, March 7, 2009
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... :)
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... :)
Friday, February 13, 2009
Putting a face on Epilepsy and Seizure Disorders...
Me!
Taken at the Hamlet Historic Depot
A phenomenal Victorian Era Train Station/Museum
while gazing at a Seaboard Airline Rail Road
Conductor's Uniform, similar to the one
my Uncle wore many years ago...
A phenomenal Victorian Era Train Station/Museum
while gazing at a Seaboard Airline Rail Road
Conductor's Uniform, similar to the one
my Uncle wore many years ago...
and reflecting...
and remembering back...
and trying to find connections...
a pattern...
anything!
and remembering back...
and trying to find connections...
a pattern...
anything!
However, understanding the condition as I do and being considered "atypical" there is no rhyme or reason... or is there?
I'm realizing I very well could have had whatever this stuff is that I have all of my life.
That there have been episodes since the time I was born. Years before the two head blows.
Some events I've experienced close together, some so close that they're in clusters as I've kicked into as of late.
Some events far apart, but now I'm not even sure about that. I've always been a push paster... press on kind of person. It's just not in me to be any other way. I believe it's in my genes. Well, I know it is. From both sides of my family. Neurological issues are, too.
Enough about me... below...
More faces of Epilepsy... thanks to a Facebook Friend... Glenn -- a man with a cause doing tremendous things to bring attention to Epilepsy and Seizure Disorders. A new hero of mine!
Adding the link all tacky like so others can easily copy and paste... the stories brought my pilot to a light bulb moment or two... see one of the main issues with such a condition is it is difficult to understand... even for those closest to the one who deals with it, people don't know what to look for... if you have seizures like I do (well some of the seizures I have) unless you look closely at my eyes, face and head, you won't see them. It's particularly difficult, too, if that individual is high functioning and a pust paster like me.
No sob story... God is healing me... I just know it. But, in sharing all of this... my goal is to put a face on the "conditions"... research is imperative, especially for those like me who are atypical and idiosyncratic.
Research is critical... please help me get the word out!!!
Sunday, February 1, 2009
Catch up blurb with few photos...
More blurb than photos... this time around...
Well, so much for posting pictures without real blog entries. Each time I've thought about it... came here to do it, I just couldn't. Even with my blogging I'm trying to follow God's leading... and listen to Him. He says no photos without narration.
He further says... I'll give you the words and tell you which photos to use when it's the right time. So... over a month goes by and here I am, finally. Playing catch up again... :)
Now, that being said...
He's been busy keeping me busy and working ever so much on my healing. More advancement has been made in my writing and communication skills. That's huge because as I've shared that's an area in my brain that's taken a big hit. Many many probably way too many words have been written and spoken by me since my last blog entry. Ask anyone on the end of my emails, and phone calls. Wordy ole me is back!
Interesting and so very true article on the subject done by Harvard Med which really brought it home for me and has also been helpful in sharing with family members so that they can "get" what has happened to me when I lost my words... I've tried to articulate this for what seems like forever and just recently discovered the article. For a long time, I felt I lost myself, even though, I knew God could heal me... and that there was a reason for everything. That I didn't want to be identified by a condition. Finding this article at the time I did, was perfect... which is actually amazing considering all of the research I've done re. Epilepsy and the effects of, and neuro conditons in general and never stumbled upon it. Big topic -- easy read. Quite a journey!
It's as if there have been two tracks before me... one leads to a derail or a fence... a blockade... the other leads to freedom -- the count it all joy track!! Maybe this has been part of God's plan for me all along -- the track to a better more creative me. And, one with an interesting testimony to say the least. ;)
Still have a few issues at times retrieving correct words, or the exact words I desire to share specifically verbally and in writing. Still just aim at something close as I can get sometimes, but, so much of the real me -- the me I was once before -- maybe even a better more creative version is emerging. Much sparking, I believe by faith, is happening within the left side of my brain, so it's very well possible as new paths are being made. A big word, or descriptor, an adjective or adverb will pop into my mind, and I'm like... "wow, haven't used that word in a good while, did I even know it before?" Ha! It's like a V-8 moment times a gazillion!
I recently wrote a letter to a gentlemen I consider my mentor. He wrote me back right away saying... and I quote (believe me when I say this man knows me and my ability to write HUGE emails the length of from here to TN and back again (and no he is not in TN)... so he knows what he's talking about)... I don’t know if I ever had an email as long as yours without an error (that I could notice) in syntax, phrasing, spelling, punctuation! Thanks Mr. B... I so needed to hear that!!!! Means with God's help I am getting somewhere! Yes! Many many excellent things are happening in my life. Not only just hopes and dreams are in my head again, but I'm putting feet to the vision along with a talented cousin of mine in starting a new business. My pilot is playing a very important role to and is learning to video, plus he helps me network with people in our area. Ferries me all over the place. Listens to my dreams... sees progress being made.
We live in an area where just about everyone knows everyone by name, or at least a relative or two... or someone worked with someone, or was a client... so, we know lots of good good folks. The product my cousin and I'll be offering is a a very unique concept and service. One we're passionate about as are my pilot and other family members and friends who know about it. Wish I could share more here, but mum is the word. Only hint I can give is that it involves story telling. And, the collection of and capturing of the stories in a hugely special way to preserve the spirits of the story tellers. To captivate viewers. The unique imprint and contribution they've left on our country and the lives they've touched. Enough said... or I may give away too much. Lots more to it... rest assured.
And, the deal with Sydney and her boyfriend Cairn terrier, Toby... in Virginia... is still in the works. Just had to back burner it for a few. Hopefully, they'll be meeting around Valentines Day -- in person -- for a little photo shoot. Should prove to be fun and interesting. Chance will be coming along for the ride, too and I'm sure will be wondering about the nonsense of puppy love.
Of course, with excellent stuff come the challenges. The things I believe one must push past, not endure... live with and continue to move forward. Can't share what's happening to loved ones, such as my mother... but will share the recent news about me...
Physically, I've had quite a time of it the past few weeks. Seizures have escalated to a different level. Totally different experience than what's become routine for me. The 24/7 sensations and symptoms I've mentioned are ever present, however, neuro activity has been something else. It's kicked up many levels. I'm experiencing jerking and movements... almost vibrations at time, like there is a cell phone in my left foot set on vibrate, then from there I can't feel my feet at all at times. The movements and shudders can now easily be noticed by others. I've kicked into periods of cluster seizures. Not scary to me, but very scary to my pilot. It ebbs and flows fortunately.
Things really took off a couple of weeks back, so I spent this past Monday with my wonderful Epileptologist at the Epilepsy Center at Wake Forest/Baptist Hospital for an hour long (or more) consult. I failed just about every part of the neuro exam. Couldn't touch my nose with my left finger directly -- kinda missed it twice. Couldn't steadily walk a straight line, yet I'd not been drinking. Couldn't follow or match my finger to his finger as it darted left and right. Nystagus left eye. Tremor right hand. Little head jerks. And, more... but the pic is easy to be gotten. The coolest thing is that I spoke perfectly and was able to stay focused. Was calm for the most part. Recalled a memory from decades and decades ago as soon as I saw the hospital for the visit. A memory about another head blow I received when I was 17. Konked with a 2 x 4 in the same spot where I received the blow at age 14. Recounted the story to him, although he didn't ask.
My lovely Epileptologist said I intrigued him because I've gotten so many of my words back and in spite of the condition I presented to him... I was happy and excited. Both my pilot and I could tell he was concerned... and he could tell we were, too. So, we've changed my medication again to a time release version of Keppa in an attempt to level things out. It's also in my records, that should I kick into another episode of cluster seizures like I did very very recently, it's in my chart... orders have been written to admit me to the Epilepsy Monitoring Unit, should a bed be available. It's about 100 miles or so from here, but for my pilot and I that is no biggie.
Also, my doctor mentioned it may or may not be Epilepsy... that my symptoms (as usual) are atypical. Could be daunting and scary, but I'm not going to let it. It's God's problem, not mine. It's in His hands. So, we've scheduled an MRI and consult with him the same day for mid March -- presurgical type... just so he can get a close look at what may or may not be happening up there. My last MRI was over three years ago, so it's definitely time.
So... all in all, I'm thrilled I walked into the clinic in the shape I was in. That my doctor saw it. All we need is to capture a couple of events in the Epilepsy Monitoring Unit to pinpoint the area of my brain that is misfiring... so a plan is now in place to do just that should things get to the place they've been recently. And, if the medication helps tame things down, that is just fine with me. I shall take it!!!! I'll proceed with the MRI and consult.
In my mind... all of whatever in the world is going on with me, must be medically documented for a true miracle of healing to be enjoyed by me and appreciated and understood by others. So, I believe with all of my heart... God's set me on the right path. He's not only working in my life, but is directing my doctor's caring and treatment of me. The man has a calling for what he does, as does his wonderful Epilepsy Nurse Clinician, I'm in frequent contact with. Truly, God chose them both to help me. And, they really really are.
I'm a push paster, and have realized that most likely I do have warning signals... may have even had whatever condition for a good while... I just always push past stuff, although, some how incredibly, I do remember to stop to smell the flowers, and watch sunrises and sunsets when I can. It takes discipline to remember some of the simplest things... to take notice of the beauty God's given us... it's all around us. One new thing I'm doing is learning to take more time to listen to God... spend quiet time with Him... enjoy His leading and rise early to read my online devotions and watch the sunrise. Such a difference it has made!!!
Monday, December 29, 2008
May be my last post of 2008! Project Rewire Reflections...
It's hard to tell from my blog, but Project Rewire, is still in action... underway... is still very much a priority. Just the narration blog part has had to take a bit of a back seat for a little while. The project in and of itself is a big part of my every day! I believe with all of my heart... brain, too, that "we're" making headway... headway to the point I very well may be fraying wires a wee bit here and there as the rewiring process continues. A step or two backwards... two or three forward. Funny what a pair of pink Crocs and a little camera can lead to when one follows God's leading!
Me, back up in the air with my pilot confronting my fears and learning to take photos to push through those fears.
A precious little miracle English Springer Spaniel rescue puppy, Sydney. All 21 pounds of her! She's my ever present side kick, velcro buddy, glued to me with each step I take. At my side when I'm sitting... even sleeping. She's there every single moment. Her sense of smell is incredible. I know I've said it before, but I've had many dogs -- none with a nose and ability for nosing around like she has.
Then, both her alertness and awareness are amazingly keen. I truly believe God sent her to me via ESRA = English Springer Rescue America. That she'll learn to alert me instinctively if there would ever be a seizure in the midst of coming on and I was unaware. As she learns to read me, I need to learn to read her. She's added so much to my life, my pilot's, Chance's (her big brother rescue Springer I've had for 9 years now)... even Max the cat is in love with her. Only my other kitty, Jasmine, wishes she lived on another planet!
Oh! Guess what!?! She even has a boyfriend named Toby Nelson-Rowe, an out of state Cairn Terrier. They've just recently begun to correspond. Have their own email accounts and will soon have their own gig going on one of my fave reality news sources back home in my hometown of Virginia Beach -- so keep an eye out. Before you know it, they'll have their own blog! You wouldn't believe the things they're saying about their humans and animal kin folk!
And, as I've posted awhile ago, I've an awesome new generation aluminum earth friendly unibody MacBook. Somewhat of a learning curve after like a quarter century of Microsoft operating systems. Wow! Just counted those years up and it has been that long. Yikes! But learning out of my comfort zone is a very good thing. It's what it's all about, actually. Taxing my brain in a way to cause it to learn new things. Build new pathways. Get both sides to working like they should be! Introduce stuff or get back into an artsy side of me, that used to be there long long before Epilepsy entered my life -- just got out of touch with much of it while life happened.
There are also two more new cameras in my life. A sweet Digital SLR to go along with my point and shoot... AND a dynamite little Flash HD DigiCam. That thing is so cool and the zoom button, zooms so smoothly. I LOVE it. I'm serious about this picture taking stuff, let me tell ya! It's a way God is bringing light back into my life -- it's a way He's reconnecting me with family members coast to coast -- it's a way other family members are connecting with more family members.
I've been blessed with so many new techo gadgets now all at my disposal and software to learn there will be no time for Winter to be dull even for a moment. I've had my pilot busy on the ground ferrying me around to take photos of trains, trains being an old love brought back into my life. I'm finding I'm into videoing trains -- on the ground only from like 6 feet away as they blow down the tracks. My pilot is catching the fever, too -- he likes videoing arriving passenger trains. Only problem they arrive in Hamlet at 11:30 p.m. and 6:30 a.m. and often run late. Makes the timing a little nuts, yet it's fun! So, in the new year -- look for some You Tubes from me. Those trains are wowing and so exciting. They've actually been wowing me all of my life.Took many a train trip as a kid from back home down here to visit my grandparents.
Reconnecting with trains makes me happy the way flying in our powered parachute makes my pilot happy. I've taken a gazillion photos of the awesome renovated Victorian era Hamlet Train Station, as well as other train stations in our area. Long story behind the reasons for all of it, I just may share one day.My only one complaint is that I'm still struggling somewhat with the AED (Anti Epileptic Drug). It kicks my rear physically. Drags me. It wasn't supposed to be so, but I'm so weird with medications... react idiosyncratically and have hypersensitivities, it's tough to take it. Yet, at the same time (although hard to tell from this entry) my words are flowing smoother in writing and verbally. Retrieval is better a good part of the time, too. I can literally feel improvement in the way my brain processes things. First time ever since Epilepsy became a part of my life, three years ago in fact this very week. That's huge. HUGE! However, in learning all of the new stuff I mentioned above, it causes need for me to limit my computer time. I'm hoping it's just a phase -- that I'll work through it as my body and brain continues to adjust to the medication. Get over the hump. If it doesn't, at this time, I'm still not inclined to talk to my Epileptologist about going off of it or switching medications. For me to be able to discern improvement in brain function... means there's healing happening. I simply need to give it time and continually thank the Lord above for what He's giving to me.
To those who have inquired about me to my pilot, truly... I'm okay... only elaborating a little here so you'll understand what keeps me away. In 2009, I won't make any declarations. Never make resolutions, they're just unrealistic. But! I do plan on posting photos even when I may not be in the mode to write.
To all of you who read I do appreciate it ever so much. The ones I hear from off the blog, the ones who check with my pilot to see how I'm doing... the ones who faithfully pray for me, you're part of the process. A key one... and I thank you.
P.S. All photos taken of me were in fact taken by my pilot. He got my hands and feet included! We're getting somewhere!
Friday, November 7, 2008
Birds eye view of Hamlet, NC and surrounding...
It's been way too long, hasn't it? I'll play a little catch up before I get to the slide show...As, mentioned in my last post, my laptop has been on the blink causing me to be on the brink! I have it breathing again, thankfully... although I'm surely holding my breath. The good news is that I'll be getting a new laptop because of it. I've denied myself for two years now -- piecing things back together more than once. Can't hold my breath but so long! Soooo... I'm coming over to the Mac side this time around. From what everyone under the Mac spell tells me, once I do, it's all over! There's no going back to Windows. We shall see!
It'll certainly be great new toy to help with Project Rewire -- learning new stuff is SO important! I've begun to learn some really cool new stuff recently, and can feel something happening up there. Important reconnections are being made. New pathways. Communication is flowing better than it has in a long long while. At the same time, I've been having quite a time of it adjusting to the new medication. That's something I'm familiar with... so it's no biggie!
I've been super busy looking out for Miss Sydney, too. She just started her daily progression of Ivermictin for her Demodex problem. Six days down now... 25 to go. I've also had her on several supplements to boost her immune system. Everything surely appears to be working! She's a whopping 16 pounds now -- loves her food, and she's the ultimate of perky cuteness. She continues to melt our hearts around here -- every day I thank God for her. I'm teaching her to walk through the forest by my house with me. She is incredibly observant for a four month old puppy... nothing gets past her eyes, ears or nose! I'm hoping my little velcro partner will get so in tune with me, that if something were to happen, if a seizure was to break through, she'll know before I do and alert me.
Well... enough running on... about our flight... we flew last Saturday. To say it was gorgeous is an understatement. The fall colors this year are amazing!!! I hear it's the same coast to coast -- in all directions. They're gradient. Living in an area where mostly tall Long Needle pines take up the view, it can be difficult to see autumn peeking through. Not so this year -- in all of my years in NC, I've never seen such color. Some will come through in the slide show, however, I had pesky lighting problems. My little camera's light meter kept going whacko in communicating signals to the processor. Shots kept getting stuck "in processing" -- but things didn't turn out so horribly not to share. Some were iffy but I've thrown them in anyway. In fact, I'm sharing so many you'll feel like it'll never get over. To my pilot's buddies, I'm sure this will be no problem. You never tire of ppc flight viewing!
Time now to click...
come see
Note to my very special friends in Massachusetts -- the "come see" link up there takes you to the pictures!!! Hugs to you both!!!
Friday, October 3, 2008
Epilepsy and me....
Well, I've yet to go into much detail about how we're trying to manage my condition medically. I've purposely drug my feet and truly considered not sharing much more than I alluded to in my profile. I mean this was supposed to be a photoblog, right? I knew God had other plans for it. :)
I realized that in order to track my progress with Project Rewire -- for the purposes of this blog -- it's essential that I share more about me and the "E" word. I want to be able to look back to see how far I've come. Which, regretfully, means I must also share some negatives. Although, take note, I won't be giving into doubt or losing faith. I want to show that God is working inside of me, and along my path. That He has been directing my path all along. That He began Project Rewire long before I started this blog. As I share, you'll see what I mean. ;)
To be honest, since Epilepsy became part of my life in January of 2006, it's been quite an on-going, very frustrating and exasperating battle. I won't lie and say it still isn't. But, early this year the Lord led me to self-refer myself to the Comprehensive Epilepsy Center at Wake Forest University Baptist Hospital. Their goal is to find a way to make their patients seizure free. Whether it's through medication or surgery. It's their primary focus. And, they're excellent at it, too. I'm beyond blessed to have such a facility in my state, much less, under a two hour drive from my home.
For the sake of making things make sense, I'm going to start off with where I'm at right this very moment, then shoot back to the beginning. Not to worry... I have no plans to knock it out in one post, lest I overdose myself on me and anyone reading. Plus, as I'm gathering my thoughts for this post, I believe this will become a good "label" line to track my progress.
Okay, on to the "now"...
We made the trek to Winston-Salem to meet with my doctor this Wednesday. He's an Epileptologist (a neurologist with at least two extra years of specialized training in Epilepsy) and he's the director of the Epilepsy Center at WFUBH. He's something else and I mean that in a good way! (I'll get into my initial visit with him and about a week I spent in the hospital for 24/7 video Electroencephalogram (EEG) monitoring down the road.) What I will say is that there's no doubt in my mind that God created him to become a doctor and to choose a field where there are so many gray areas -- so many unique crazy symptoms. I first saw him in March of this year and still couldn't be more impressed. Each time I've visited him, he fully focuses on me. He listens to me and makes me listen up! He asks me pertinent questions. He always spends at least 45 minutes with me -- uninteruppted. And, he understands two vitally important things about me. That I can be both hypersensitive and idiosyncratic with medications. Unfortunately, that's a problem that runs with the females in my family. It's something most doctors either don't get, want to ignore. Or, flat out, blow off.
For the past almost two months I've been on a very difficult to take medication called Carbatrol. The side effects are many. Some very serious. It's not a clean medication, meaning blood tests are required to test levels because it dumps into the liver. I've given it my best shot, but it's not the medication for me. Even though I did discern momentary improvements here and there in the sensations I experience 24/7 and random pain. It's not worth it. And, my doctor agreed that we need much more than that to keep me on such a med. So, I'm transitioning off of Carbatrol on to another med called Keppra. Keppra is a clean med, in that it is washed out of the body via the kidneys. As for side-effects, they're minimal in comparison to Carbatrol and many of the other AEDs (Anti Epileptic Drugs) available. It has a good track record in treating people with Focal and Complex Partial Seizures. Needless to say, I'm hoping and praying it's my miracle drug! At this point, I've been on several. None of which have been the answer. As usual though, with all anti-seizure medications you can't just stop one to start another. There's a tapering off phase one must go through. I already began with the Keppra Wednesday evening, but must continue to take an evening dose of Carbatrol through Sunday. The step down... tapering off process is... yucky! yucky! yucky! The two together make me feel, well, awful. Make that awfully awful. Particularly so in the evening. In fact, I've not done much of anything since we got home on Wednesday. But, I believe once Monday roles around, I'll be down to one "yucky!"... and fast on my way to none. Also, Keppra is a medication that doesn't need to "build up" in one's system before positive effects are felt. So again, I'm hoping and praying I'll feel some improvement once the Carbatrol is totally out of my system. I like the extra bonus fact that I'll know soon, too.
I'm close to odeeing on myself now... so it's time to close and start thinking about what I'll post next. There's much I've wanted to share... more pics from my PA trip, more on Sydney... and the ESRA... Oh! We're planning on flying tomorrow. Yay! It feels as if it's been forever. No matter how I feel, I wouldn't pass up the chance for anything. Let me tell you... the winds are looking NICE. So, maybe we'll go in the a.m. and in the p.m. -- we shall see!
P.S. Thanks to an ESRA buddy, Charlie's dad, for the photo crop.
We made the trek to Winston-Salem to meet with my doctor this Wednesday. He's an Epileptologist (a neurologist with at least two extra years of specialized training in Epilepsy) and he's the director of the Epilepsy Center at WFUBH. He's something else and I mean that in a good way! (I'll get into my initial visit with him and about a week I spent in the hospital for 24/7 video Electroencephalogram (EEG) monitoring down the road.) What I will say is that there's no doubt in my mind that God created him to become a doctor and to choose a field where there are so many gray areas -- so many unique crazy symptoms. I first saw him in March of this year and still couldn't be more impressed. Each time I've visited him, he fully focuses on me. He listens to me and makes me listen up! He asks me pertinent questions. He always spends at least 45 minutes with me -- uninteruppted. And, he understands two vitally important things about me. That I can be both hypersensitive and idiosyncratic with medications. Unfortunately, that's a problem that runs with the females in my family. It's something most doctors either don't get, want to ignore. Or, flat out, blow off.
For the past almost two months I've been on a very difficult to take medication called Carbatrol. The side effects are many. Some very serious. It's not a clean medication, meaning blood tests are required to test levels because it dumps into the liver. I've given it my best shot, but it's not the medication for me. Even though I did discern momentary improvements here and there in the sensations I experience 24/7 and random pain. It's not worth it. And, my doctor agreed that we need much more than that to keep me on such a med. So, I'm transitioning off of Carbatrol on to another med called Keppra. Keppra is a clean med, in that it is washed out of the body via the kidneys. As for side-effects, they're minimal in comparison to Carbatrol and many of the other AEDs (Anti Epileptic Drugs) available. It has a good track record in treating people with Focal and Complex Partial Seizures. Needless to say, I'm hoping and praying it's my miracle drug! At this point, I've been on several. None of which have been the answer. As usual though, with all anti-seizure medications you can't just stop one to start another. There's a tapering off phase one must go through. I already began with the Keppra Wednesday evening, but must continue to take an evening dose of Carbatrol through Sunday. The step down... tapering off process is... yucky! yucky! yucky! The two together make me feel, well, awful. Make that awfully awful. Particularly so in the evening. In fact, I've not done much of anything since we got home on Wednesday. But, I believe once Monday roles around, I'll be down to one "yucky!"... and fast on my way to none. Also, Keppra is a medication that doesn't need to "build up" in one's system before positive effects are felt. So again, I'm hoping and praying I'll feel some improvement once the Carbatrol is totally out of my system. I like the extra bonus fact that I'll know soon, too.
I'm close to odeeing on myself now... so it's time to close and start thinking about what I'll post next. There's much I've wanted to share... more pics from my PA trip, more on Sydney... and the ESRA... Oh! We're planning on flying tomorrow. Yay! It feels as if it's been forever. No matter how I feel, I wouldn't pass up the chance for anything. Let me tell you... the winds are looking NICE. So, maybe we'll go in the a.m. and in the p.m. -- we shall see!
P.S. Thanks to an ESRA buddy, Charlie's dad, for the photo crop.
Wednesday, September 10, 2008
More Sydney!
I'm more than a bit behind in my blogging due to little Miss Sydney. She's been keeping me busy busy busy! I'm thrilled to share that she is absolutely thriving! She's happy and loving her life! We are having a nipping issue, but it's only because she wasn't able to be with her mom and other siblings to receive natural correction (if there were any other siblings besides the one that died). We're working on it, and I can say, it's improving, thankfully. I've not had to use one bandaid so far this week. :)
She's amazing! So smart. So alert. So incredibly observant. She'll sit intently listening to all of the bird sounds in our yard, when another tweets in, she notices and cocks her head. Nothing gets past her, not even a leaf! When she hears either the rescue horse or mule who live on the property next to us, she stops dead in her tracks. She wants to go see!
She's true to her breed, too! She's doing Springer stuff exactly like Chance. He's now totally accepted her, to the point he even initiates play times. He's being very patient with her and rarely lets loose with a growl. She watches him closely and mirrors everything he does. Or, tries to! In some of her behaviors, though, she's older than a puppy her age should be. Admittedly, it saddens me, but with her start in life, she had to grow up fast. I try not to think about it, or her lost sibling, possibly siblings, and their momma dog, but at times I can't help it. It's hard not to see them when I look at her, yet I know God has blessed me with my little miracle puppy. I believe with all of my heart that He has allowed her to become a part of my life, because I'm able to give her tons of hands on attention, and that's just what she needs. While she's helping to keep me motivated and focused, which are two things I've struggled with since Epilepsy became a part of my life. She's indeed a part of my project!
In the week and a half I've had Sydney, I swear she's doubled in size. Here are a couple of slide shows of her. The first is of her second day with us. She took to her leash immediately and loves walking her big brother.
By the end of her first week she'd decided she was a big dog and could walk herself in our front yard... checkout how much she's grown in only a few days! Of course, she took time out for a romp with Chance. When the irrigation system came on in my side yard, it didn't startle her, she flew over to it and dove right into the sprinkles! What blew my mind is that she was thirsty and realized by opening her mouth she could catch a drink. She is such a smart girl!
Tuesday, September 2, 2008
My Sydney... my miracle puppy!
Sydney is mine all mine!!!
Sydney was found by a good Samaritan on July 16, 2008 on the side of a road along with her sibling in Atlanta. She was in horrible condition -- covered in flies, fly eggs, fly bites and had sores on her body. (If you look closely, you can see a few spots that are still in the midst of healing or that the fur hasn't come back yet.) There was evidence that her tail had been rubber banded and it was nearly necrotic. Meaning the tissue was nearly dead. She weighed only 1.4 pounds. Fortunately, the good Samaritan took her to a wonderful vet that pulled her through, but sadly her little sibling didn't make it. The vet estimated her birthday to be June 27th, which means she was only 3 weeks old when she was tossed away. That's unimaginable to me. What's even more unimaginable is that it very well could have been a "bad" breeder who discarded Sydney and her sibling in such a heartless manner. It breaks my heart that animals are treated so terribly. It breaks my heart that her little sibling was lost forever. But, I rejoice that ESRA, the English Springer Rescue of America organization was contacted on Sydney's behalf and she soon came under their care and was placed into a loving foster home. Through volunteer members' compassionate efforts and commitments of help and assistance ESRA has successfully placed thousands of Springers in loving homes.
I applied for consideration to adopt Sydney. I'm thrilled to say she became mine! My pilot and I were approved to be her forever home. This past Saturday we round tripped it to Atlanta to pick her up and bring her here to her new home.
She is amazing! She is happy! Her spirit is strong! Her will is incredible! For those things I already love and respect her. And, she is only an 8 1/2 week old puppy.
I know without a doubt, that God chose her to be mine. Needless to say, there will be many more photos posted of her as time goes on.
I applied for consideration to adopt Sydney. I'm thrilled to say she became mine! My pilot and I were approved to be her forever home. This past Saturday we round tripped it to Atlanta to pick her up and bring her here to her new home.
She is amazing! She is happy! Her spirit is strong! Her will is incredible! For those things I already love and respect her. And, she is only an 8 1/2 week old puppy.
I know without a doubt, that God chose her to be mine. Needless to say, there will be many more photos posted of her as time goes on.
Wednesday, August 27, 2008
Jeanne Code
Epilepsy has brought with it many changes to my life. It's affected my freedoms immensely. One in particular, that I find extremely frustrating, is my freedom to express myself. Literally. The area in my brain that's responsible for "language" has taken a big hit from the misfires. Words don't flow from my mind to my lips or finger tips easily anymore. My vocabulary, is not at all what it used to be. There are days it feels as if it's shot. I was an introvert before, but even more so these days. To say it's frustrating is an understatement. But, those close to me are used to it now. Fortunately. They always try to make me feel better by telling me they do the same thing, have the same problems... it's different though. I've got documented evidence that my words have flown the coop! My closest friends have gotten very adept at what we've begun calling "Jeanne Code"... especially in our emails back and forth. They pretty much know what I'm aiming to say, and if it doesn't make sense, my really REALLY close friends will write me back and ask me to have a go at it again. Even though I know it's okay, it is embarrassing. It's done a number on my self-identity. Yep, it's a bruiser!
But! I'm sharing all of this not to whine or woes me... but, ONLY to get to this...
But! I'm sharing all of this not to whine or woes me... but, ONLY to get to this...
One of the focuses of Project Rewire, in a nutshell, is to help restore my vocabulary. So the words will come freely... like on demand! Now! Technically, it's called "word retrieval". I believe God has led me to start this blog for many reasons, and one of them is as a method to help me to tap into the place where my words reside/hide and create new pathways for them to fly to the surface. Exercise the areas where I've been told there are sub-cortical lesions. Heal them. I've been assured by Neuro experts who supposedly know this stuff, that they're all in there... which is reassuring! It's just that my wires are frayed in areas so they can't take a direct flight when I need them at times. It can be hilarious when I'm speaking. In writing, it's a bit different.
We shall see, but by faith... I'm claiming my words back. The wordy person in me misses them!
Saturday, August 23, 2008
My intent for my little blogging endeavor here is for it to evolve into a quasi photoblog of sorts, with a little narration from me. However, knowing God, His plan may be entirely different. We shall see where He leads me. For the moment, though, I need to go back in time in a few posts to get to "now" so you'll get the picture...
Project Rewire
actually began late this Spring. Then, kicked into full swing when I picked up a pair of brand new pink Crocs shoes in June while visiting family in PA. Adorable little Mary Janes, to be exact. The moment I saw those babies in Dick's Sporting Goods, I knew what God wanted me to do. He certainly knew I couldn't resist their cuteness and He used that little tidbit of info about me, too. Quite well, I must say, since they just happened to match the hot pink Infinity Power Parachute my husband and I own... the one I hadn't flown in for over two and a half years. And, oh yeah! They were in my size, too. Yes, indeed, God had planted them there! And, no question about it, He had plans for me! While my feet were ready to do the happy dance, under my breath to myself, I was saying "uh-oh and oh no!" I knew if I walked out of Dick's with those shoes, He expected me to get back into our flying machine and take to the air with my husband again.
(Just as an FYI, to alleviate any possible concerns anyone may have... the type of seizures I have are atypical... meaning, not of the usual Grand Mal nature when Epilepsy comes to mind. I'm not putting myself, nor my pilot, at risk when I fly... that is, other than the norm would be for someone who flies in a powered parachute. Which, honestly... is kinda risky!)
Project Rewire
actually began late this Spring. Then, kicked into full swing when I picked up a pair of brand new pink Crocs shoes in June while visiting family in PA. Adorable little Mary Janes, to be exact. The moment I saw those babies in Dick's Sporting Goods, I knew what God wanted me to do. He certainly knew I couldn't resist their cuteness and He used that little tidbit of info about me, too. Quite well, I must say, since they just happened to match the hot pink Infinity Power Parachute my husband and I own... the one I hadn't flown in for over two and a half years. And, oh yeah! They were in my size, too. Yes, indeed, God had planted them there! And, no question about it, He had plans for me! While my feet were ready to do the happy dance, under my breath to myself, I was saying "uh-oh and oh no!" I knew if I walked out of Dick's with those shoes, He expected me to get back into our flying machine and take to the air with my husband again.
Trust me, as much as I'd missed flying around like a bird, I was not looking forward to getting back up there. You see, I'd grounded myself when Epilepsy became part of my life. I questioned the wisdom of it, and allowed fear to set in. Those "what ifs" had bound me tightly. True, when we first got into the sport of powered parachuting, I really REALLY had to talk myself into it. Did I ever! But, I faced my fear head on and learned to manage it. It was not easy, though! I am utterly terrified of heights! Real airplanes, elevators and escalators, no problem. But, just me... kind of hanging out... in the thin air... with not much under me, I lock down and my stomach flip flops. Anything higher than the second step of a ladder, I cannot do! Even the mere thought of climbing into our powered parachute again and taking off... whewed me!
But! God understood my struggle... He already planned for it and nudged me to buy a new camera... using my sister, my niece, my husband, and encouragement from a cousin, and Costco! You know how the deals are with them, too sweet to say "no"! The price was right. I could not refuse!
Well, pink shoes on my feet and camera in hand, I took to the air again on Friday evening, July 25th, 2008.
Subscribe to:
Posts (Atom)
Posts
