Well i am working several at home jobs now and things appear to be going well. I am much more tired than the average person due to my meds i assume. But i am loving the challenges...I miss chatting with my friends and such....but I refuse to lose touch with them.
I am still having seizures...oh yeah--the car is fine hahaha---or so it seems they just lubed it hahaha...
thanks to all who asked
have a nice night
I am a 40 yr old female who is also Epileptic. I have been married to David for 19 yrs and we have three children: Zac 17, Taylor 14 and PJ 12. I had VNS surgery in February 2006. I have one-two drop seizures per week. I also suffer from depression. I hope this at least educates ONE person. For more information on VNS visit http://www.vnstherapy.com
Tuesday, November 14, 2006
Monday, October 30, 2006
Seizure day
Ok so I had a seizure today...WEIRD....nope...what is weird is this time I REMEMBER FALLING. This has never happened before and maybe I am dreaming it. But I think I remember falling on the floor.....Will talk to the DR on thursday and see what he says.
We had the car looked at today. Nothing big just some noises we wanted to have checked out while we are still in warranty. They just oiled the chassis and all is well.
Working at home is going well. Doing several different things and loving them for the most part. just getting organized is difficult.
My mood has been great recently. No crying etc....which is GREAT!!! That vns is working for that for sure.....AMEN!!!
Well gonna work on a few more things then head to bed. trick or treat tomorrow.
We had the car looked at today. Nothing big just some noises we wanted to have checked out while we are still in warranty. They just oiled the chassis and all is well.
Working at home is going well. Doing several different things and loving them for the most part. just getting organized is difficult.
My mood has been great recently. No crying etc....which is GREAT!!! That vns is working for that for sure.....AMEN!!!
Well gonna work on a few more things then head to bed. trick or treat tomorrow.
Sunday, October 29, 2006
Getting nervous
OK ....I am getting nervous about getting my vns turned up on thurs. I am so used to it the way it is. I am not looking forward to the gasping for air and the change in voice that catches me off guard because it's stronger. BUT if it will help my seizures ONWARD I will go.....
I am trying to make money at home. Doing a couple jobs right now. But am always looking for more. I need to keep busy and feel useful!!! If you know of a good one[ no upfront cost please] Let me know!! On to bed...LONG DAY!!!
I am trying to make money at home. Doing a couple jobs right now. But am always looking for more. I need to keep busy and feel useful!!! If you know of a good one[ no upfront cost please] Let me know!! On to bed...LONG DAY!!!
Saturday, October 28, 2006
Rate your Doctors
Did you know you can rate your doctors online and see how other doctors are rated? it's very easy.
I did two of my Doctors
http://www.vimo.com/doctor/doctorreviews/+Weingates Jr/282768
http://www.vimo.com/doctor/doctorreviews/+Efobi/274843
It was a very simple thing to do. It's important for others to share their information about a doctor so that patients hunting for new doctors have as much knowledge as possible.
To rate your doctors go to www.vimo.com
I did two of my Doctors
http://www.vimo.com/doctor/doctorreviews/+Weingates Jr/282768
http://www.vimo.com/doctor/doctorreviews/+Efobi/274843
It was a very simple thing to do. It's important for others to share their information about a doctor so that patients hunting for new doctors have as much knowledge as possible.
To rate your doctors go to www.vimo.com
New Job and Getting it turned up again
Ok so first....I have started working from home. First as a Cha cha guide for an online search engine...WAY COOL!!!!! And secondly, as a customer service phone rep at home. This of course causes me some concern....here's why. Well I get my VNS turned up again on Thurs. And I haven't had it turned up in 2 plus months. I am nervous about the voice issues and adjusting WHILE doing my at home job on the phone. I guess if I had a sore throat it would be ok..It won't happen on every call. Should be interesting to see what goes on though.
My vns has SO HELPED my mood....as you can tell I AM WORKING!!!!! But the seizures benefit has not been shown yet....SO time will tell.
You know what else is weird...My brother is a photojournalist[ www.davidzentz.com ] and he is doing a story on VNS for treatment resistant depression and the doctor and patient were glad to know he had first hand knowledge...
In fact here's a picture he took of the vns that this woman was having put in...But it's the exact one I have in...pretty cool huh....I will post the link to the article when and if he has one....I can post hehehe
My vns has SO HELPED my mood....as you can tell I AM WORKING!!!!! But the seizures benefit has not been shown yet....SO time will tell.
You know what else is weird...My brother is a photojournalist[ www.davidzentz.com ] and he is doing a story on VNS for treatment resistant depression and the doctor and patient were glad to know he had first hand knowledge...
In fact here's a picture he took of the vns that this woman was having put in...But it's the exact one I have in...pretty cool huh....I will post the link to the article when and if he has one....I can post hehehe
Tuesday, September 12, 2006
yeah yeah i know not around
ok folks so i havne't been around..my vns is up to 1.o BUT the pulse width is now down to 130. i was having huge issues breathing. i have not noticed a decrease in my seizure BUT i have notices a quicker recovery after...and for the most part my mood is better[ although today's not the day to ask me about that] i have had to start journaling and writing how i feel down for my attorney for my disability/ssi appeal,. but it could be 10-22 months from last week til i even see the judge. when i write things down like that i feel like i obsess and i hate that...so trying to work on making some kind of money for my family by working at home.... SO chacha.com to search online with a real person and not on your own.,.it's pretty kewl, brand new and hoping to be big i love it so far
Wednesday, May 31, 2006
Turned up again
Turned up again today..So i was upped to .75 in and out and then my pulse width was lowered to 250....due to my having trouble catching my breath sometimes when it goes off..i can tell a difference because of the pulse width--but he is hoping that maybe someday to go back on it..Since there are no changes in my seizures we added a second med; phenobarbitol...i have never had this one as it's kind of strong i guess....but i said i would give it shot. The goal is to be seizure free right--well i don't want to not at least try something if it's not gonna hurt me too badly. So for now things are fine... but the adjusting of the meds could be fun since it's been awhile since i tried something new...kind of used to my schedule now ya know...will keep you posted on if i notice changes....i am gonna start a log on my seizures as another blog and will post that link in my links once i get it up and running....
Friday, May 26, 2006
A week away from getting raised again
I want to let you know i ge tmy VNS upped on May 31....now.....i hope to get the pulse down but the last day or so that hasn't bugged me anymore---maybe i have to get used to it--i can't wait til i get to a level where maybe something will work---if not for the seizures that for the depression---one or the other is fine with me both would be a blessing...i have talked to several via emails and that support surely helps too Toodles
Wednesday, May 17, 2006
3 months post op
Well not much has changed seizure wise but my nuero wasn't expecting it and well i wasn't getting my hopes up either LOL
I will take a picture of my incisions soon and put them up they are pretty ugly but life goes on.
I am currently on .50 amps and 500 pulse...
while i was in washington dc in early may the pulse about knocked the breath out of me--especially when FAST walking up to the capitol building or the hike up to the ampitheatre for the changing of the guards at Arlington National cemetary.. i would have to stop when my vns went off---as i couldn't cathc my breath---normally it doesn't bug me although i do feel a twinge in my chest or tightness when it goes off...
Gonna ask my nuero when i go in on the 31st.....if this is problem--as i am a swimmer---even with a buddy losing my breath or something like that under water would be bad--maybe i just keep my head above water... i need the pulse to go down i imagine...
Taking it slow and seeing what happens..i should be posting a tad more as i just got a new puter my old one DIED...and the one left barely runs....
Talk to ya soon
KIM
I will take a picture of my incisions soon and put them up they are pretty ugly but life goes on.
I am currently on .50 amps and 500 pulse...
while i was in washington dc in early may the pulse about knocked the breath out of me--especially when FAST walking up to the capitol building or the hike up to the ampitheatre for the changing of the guards at Arlington National cemetary.. i would have to stop when my vns went off---as i couldn't cathc my breath---normally it doesn't bug me although i do feel a twinge in my chest or tightness when it goes off...
Gonna ask my nuero when i go in on the 31st.....if this is problem--as i am a swimmer---even with a buddy losing my breath or something like that under water would be bad--maybe i just keep my head above water... i need the pulse to go down i imagine...
Taking it slow and seeing what happens..i should be posting a tad more as i just got a new puter my old one DIED...and the one left barely runs....
Talk to ya soon
KIM
Thursday, April 27, 2006
a seizure
http://www.epilepsy.com/web/animation.php?swf=what_is'
found this on a friends blog and its' awesome to see
KIM
found this on a friends blog and its' awesome to see
KIM
A link from a friends BLOG
http://scott-lwe.blogspot.com/2006/04/so-does-your-vns-work.html MY ANSWER:: too soon to tell but i have hopes!!!
I got turned up
Ok so today isn't so fun..I hadn't written in awhile because there had been no changes. I got used to the .25 setting and all but no changes to my seizure levels...which of course the dr said there would not be yet..They increased it yesterday to .50 and pulse of 500[the pulse is the same] and it takes my breath away...I am adjusting to it---and a little dry but when i am talking it definitely interupts my sentences....I leave in a week for Washington DC with the HS band and pray by then i am at least dealing with the change a bit better. Didn't sleep well alst nigth as i could feel it again...We are to begin loggin my seizures to see if the average changes any....i currently avg 10 or so a month....we want to start seeing it drop. h e figures it won't drop until i am at least at 1.00 so have a way to go..Several people have been really negative on my VNS recently..i want to set the record straight--I know that this is not a guarentee that it would take away my seizures..and i know i will always be on my medications...For me if it works a little it is worth it. With three children and a loving husband...i can't ask for anything more than a little better---NO SEIZURES would be great...but i couldn't wait 5 or so years and then try it--what if it makes my life a little better now--don't my children deserve that now while they live at home and have to deal with it every day. Once they are out on their own---which for my oldest he leaves for college in a little over two years....he deserves the best of me now not later...The risk of the surgery is no different and for me was not worth waiting--now if they said lets remove your brain--I don't know---that one to me is way to risky--i can't imagine waking up and not knowing my family--and the devastation that would do to them--this is one of my last choices...and my family and i deserved the chance---and i couldn't get approved jsut for the depression so if it works for taht as well[ i was approved for BOTH] then amen--it has helped me..just knowing i tried it has made me a bit happier and POSITIVE..because maybe changes are coming but if not--I TRIED!!!!
Current settings
Output Current (milliamperes).50
Signal On Time (seconds) 30 seconds
Signal Off Time (minutes) 5 minutes
Magnet Current (milliamperes) .50
Magnet On Time (seconds) 30 seconds
Magnet Pulse Width (microseconds) 500
Current settings
Output Current (milliamperes).50
Signal On Time (seconds) 30 seconds
Signal Off Time (minutes) 5 minutes
Magnet Current (milliamperes) .50
Magnet On Time (seconds) 30 seconds
Magnet Pulse Width (microseconds) 500
Sunday, April 09, 2006
Well it finally happend
Well it was bound to happen. I had a seizure this morning on my way up to communion in church. I have about 90% of my seizures in the morning..before noon and the odds of it finally happening at church was pretty good.
I am lucky--several nurses attend our church and sat with David in the isle while i came to. People came up to me after church and emailed me once i got home to tell me NOT to stay away---to not let me falling on my face in church keep me away.
I am hoping eventually that the odds of having them get slimer as my vns is turned up--or if nothing else the depression/anxiety gets better...we shall see as i get it turned up again on the 26th.
Thanks to everyone who got me through today..Especially my family and the people at church who cared enough to help and not ignore me once it was over.
huggles
I am lucky--several nurses attend our church and sat with David in the isle while i came to. People came up to me after church and emailed me once i got home to tell me NOT to stay away---to not let me falling on my face in church keep me away.
I am hoping eventually that the odds of having them get slimer as my vns is turned up--or if nothing else the depression/anxiety gets better...we shall see as i get it turned up again on the 26th.
Thanks to everyone who got me through today..Especially my family and the people at church who cared enough to help and not ignore me once it was over.
huggles
Friday, April 07, 2006
Wanted Poster Generator - Make your own Old-West-style Wanted Poster (and use it as an MSN display image)!
Wanted Poster Generator - Make your own Old-West-style Wanted Poster (and use it as an MSN display image)!
HAHAh this was FUN>>>>and we all need fun...has NOTHING to do with VNS but well i hardly work since i have epilepsy hahaha My VNS is doing well....i can't feel it but notice no difference yet---well i can feel it if i want to think about it--but in general i am FINE..see the dr the 26th will update ya then
Wednesday, March 29, 2006
Ok here are my settings
OK....i finally looked at the paper and here are my settings...
.25mAmps in and outbound
500 pulse
on for 30 seconds and off for 5 minutes
WOWSA>...my singing voice is MIGHTY rough...and where it once was smooth i now have vebrato[ which i never really had before i had a smooth voice ] it kept cutting out.
Once tonight while sitting in church listening to the sermon my vns went off and i had trouble catching my breath and kept coughing that was kind of scarey....wonder if this happens to others???
off to la la land
.25mAmps in and outbound
500 pulse
on for 30 seconds and off for 5 minutes
WOWSA>...my singing voice is MIGHTY rough...and where it once was smooth i now have vebrato[ which i never really had before i had a smooth voice ] it kept cutting out.
Once tonight while sitting in church listening to the sermon my vns went off and i had trouble catching my breath and kept coughing that was kind of scarey....wonder if this happens to others???
off to la la land
Tuesday, March 28, 2006
One full day ON
One full day on now..and the area of my incision which has been numb is a tad tender--the area all the way up to my check is still numb though. I have sugar free candies to suck on to deal with the gagging and coughing feeling.
My one friend[[[[HI DIANNA]]]] said last night it sounded like i was straining my voice...wondering about that...hope i don't lose my voice..how am i gonna yell at my kids JOKING>>>>sort of LOL
I don't get it adjusted again til the 26th of April....which is almost a month--I do have the settings written down but they are down stairs...dang it's dark i will bring them up tomorrow
HEHE...
it's still pretty low of course...
i will take pictures in the future but not much to look at now...just color and swelling changes...
My youngest two learned how to trigger the vns today--my daughter is kind of freaked by me having something IN my body--WELL DUH--i would rather have a couple new cars instead haha...but i wanna be able to LIVE!!! the dr is praying it works for the depression..Last night i had dreams that it didn't work at all..for either--and i was so down..i can't think that way
Ok off to LA LA land...hope i sleep better tonight
My one friend[[[[HI DIANNA]]]] said last night it sounded like i was straining my voice...wondering about that...hope i don't lose my voice..how am i gonna yell at my kids JOKING>>>>sort of LOL
I don't get it adjusted again til the 26th of April....which is almost a month--I do have the settings written down but they are down stairs...dang it's dark i will bring them up tomorrow
HEHE...
it's still pretty low of course...
i will take pictures in the future but not much to look at now...just color and swelling changes...
My youngest two learned how to trigger the vns today--my daughter is kind of freaked by me having something IN my body--WELL DUH--i would rather have a couple new cars instead haha...but i wanna be able to LIVE!!! the dr is praying it works for the depression..Last night i had dreams that it didn't work at all..for either--and i was so down..i can't think that way
Ok off to LA LA land...hope i sleep better tonight
Monday, March 27, 2006
well i am ON!!!!!!!!1
Well at 4 pm EDT today....i had my VNS implant turned on....
it's weird....makes me gag and choke..i am on .25 every 5 minutes for 30 seconds...
it doen'st really change my voice it just makes it sound strained...the coughing is NOt fun but there is NO pain thank goodness.
I will be at this rate for a month and he will UP me...as he thinks i need to be over 1 before it will work
questions???justask
it's weird....makes me gag and choke..i am on .25 every 5 minutes for 30 seconds...
it doen'st really change my voice it just makes it sound strained...the coughing is NOt fun but there is NO pain thank goodness.
I will be at this rate for a month and he will UP me...as he thinks i need to be over 1 before it will work
questions???justask
Thursday, March 16, 2006
A forum with Information..
I belong to a forum called VNSdepression.com....As you may or may not know...vns is also used to treat depression.... A great guy named herb is there and periodically reads my blog..He posted a link in comments on the healing process.....Mainly referring to the part where....Armpit vns implants take longer to heal and do bother women with bra straps...
it also has great questions on what to ask your Dr PRIOR to surgery...
sharing the link here to help everyone out. I was approved for vns for epilepsy AND depression...One of the lucky ones??Depends on how yah look at it..Would've been nice NOT to have had either in the first place!!!
http://vnsdepression.com/forum/viewtopic.php?t=215
On another note I slept like CRUD last night...It seems the more the swelling goes down in the armpit region the more the rubbing of the implant on he inside of my body KILLS>..took me til after 3 am to get to sleep. Up getting the kiddos to school--one is out the door for his weekly HIGH SCHOOL Church breakfast[ youth ministry on a weekly basis ] and two are getting up..I will then be heading back to bed to catch some more zzzz's with pain meds in tow...Then I hope to feel well enough the rest of the day to do some cleaning chores--As per the Dr I am still on NO heavy lifting til I see him again on April 6th where he will re evaluate...
He says---the pain is a sign to take it easy when it comes to lifting so that I am....
I do journal on paper and write a great deal more...So if you read this and have questions PLEASE email me...I would be glad to try and answer them for you...Can't imagine you want every detail of my epilepsy and depressed filled life!!!
Wednesday, March 15, 2006
Surgeon Visit and Update
First off if you scroll down I have posted the images from 3 weeks post op. FUN HUH LOL
Today I saw my surgeon again. He prescribed MORE pain meds..As the area under my armpit is EXTREMELY sore and well----men drs don't seem to think about things like BRA's when they put that thingy in me...When I mentioned it today he was kind of like OH YEAH!!!
and did say when he opened me next time to change the batteries---in 5 plus years....He would move it up and over a bit if her could.
So I am bra shopping gonna have to do a sport bra I guess...Most comfy on the spot I hope.
He cut the stitches that were popping through and told me he would see me April 6th about a week after I get my gizmo turned on.
he said the location of UNDER my arm....Makes it a more difficult heal---grrr...as that area you move more and the vns in implanted into muscle area...
I am gonna have to do more reading on the armpit option and see what I come up with.
Hoping that the soreness will go away SOON..He told me to wear my bra more often so my body gets used to the implant and the bra...SOUNDS LIKE A PLAN>>>>>NOT I don't like hurting but I will do as he says----
Off to bed LA LA LA ZzZzZz{{{snore}}}} ouch don't lay on your left side that HURTSSSSSS
Today I saw my surgeon again. He prescribed MORE pain meds..As the area under my armpit is EXTREMELY sore and well----men drs don't seem to think about things like BRA's when they put that thingy in me...When I mentioned it today he was kind of like OH YEAH!!!
and did say when he opened me next time to change the batteries---in 5 plus years....He would move it up and over a bit if her could.
So I am bra shopping gonna have to do a sport bra I guess...Most comfy on the spot I hope.
He cut the stitches that were popping through and told me he would see me April 6th about a week after I get my gizmo turned on.
he said the location of UNDER my arm....Makes it a more difficult heal---grrr...as that area you move more and the vns in implanted into muscle area...
I am gonna have to do more reading on the armpit option and see what I come up with.
Hoping that the soreness will go away SOON..He told me to wear my bra more often so my body gets used to the implant and the bra...SOUNDS LIKE A PLAN>>>>>NOT I don't like hurting but I will do as he says----
Off to bed LA LA LA ZzZzZz{{{snore}}}} ouch don't lay on your left side that HURTSSSSSS
Tuesday, March 14, 2006
It's been a few days
I am still having pain---i see the dr tomorrow...I haven't been posting because until this thingy or GIZMO is turned on....nothing new to report...except i STILL HAVE PAIN..and stitches that keep popping haha.
What a pain for SURE!!!!
I see my surgeon tomorrow and i will let ya know then what he says and go from there--ON STITCH__-a clear one on my neck got caught in my hair several days ago and popped off---it healed FINE but the new stitch that popped out is black--my concern is that the clear one was an ANCHOR stitch for my leads or electrodes..
PRAYING it's not caused damage
HUGGLES
What a pain for SURE!!!!
I see my surgeon tomorrow and i will let ya know then what he says and go from there--ON STITCH__-a clear one on my neck got caught in my hair several days ago and popped off---it healed FINE but the new stitch that popped out is black--my concern is that the clear one was an ANCHOR stitch for my leads or electrodes..
PRAYING it's not caused damage
HUGGLES
Friday, March 10, 2006
3 Weeks Post Op
Well in general I feel ok...I am not tiring as much--BUT>>>>the pain is still more than I think it should be. I am back on night time pain meds beginning tonight...Hoping that I sleep like a baby all night long!!!!
The incisions are doing alright--I still have a stitch in each one that I have to keep covered most of the time since the popped out..
I also am showing some NEW bruising at my armpit incision...Guessing it's the swelling finally going down and the implant settling into place...
I will be turned on 3,27....til then not much to report---well except I am having evening seizures again---I haven't had those in FOREVER!!!
To the left is my Armpit incision at 3 weeks POST OP ugly huh LOL several spots have stitches starting to poke through...ON the right is my neck incision 3 weeks POST OP! You can see three black dots which are all knots that are picking through...Not fun LOL
Another day another pain in the ....
Ok so i ran out of pain pills...i hae been using them only at night...the drs finally called me 15 minutes before my pharmacy closed to refill me....i am good at stretching the meds--5 days worth lasted me 11 days last time..but since i live 25 minutes from the pharmacy i have to well.....wait til today....
i see the dr weds...i am very concerned that i am still so sore and tender...i have a high pain tolerance so this bugs me...remember to check out the links on my side panel--i have added a few...
Huggles
KIM
i see the dr weds...i am very concerned that i am still so sore and tender...i have a high pain tolerance so this bugs me...remember to check out the links on my side panel--i have added a few...
Huggles
KIM
Wednesday, March 08, 2006
Well its' scheduled
I will be turned on 3.27.06....WEEEEEEEEEEE.....
I am still searching for answers on the numbness in my neck....MMMM
huggles
I am still searching for answers on the numbness in my neck....MMMM
huggles
I am frustrated
Well i am officially frustrated...I now have a stitch that's BLACK that has popped up in my arm incision--but the one on my meck that's clear is bigger as the top of the incision is opening more...Called the dr---he said to keep it covered and put anti biotic cream on it twice a day and he will see me in a week...he might have to then RE stitch me in that area if it's open too much...wondering why one stitch is clear and one is black...wondering if either are NON dissolving and are there to hold something in place---WISH I KNEW WHO TO ASK now that it's the middle of the night
I also have an issue....with the feeling in my neck--it's still numb to mid chin and partof my check and such---but it seems i am getting some feeling internally but it is hurting my ear and my jaw and my teeth and there is a feeling like when i move its pulling and tingling---VERy annoying...it is NOT on yet--as the surgeon wants to make sure it's all healed well first..
I don't blame him for that at all--patience is what i need--and well i have no more pain meds but i am having trouble getting comfy when i sleep---i am 2.5 weekspost op and want to fell better physically---maybe i am expecting too much
I also have an issue....with the feeling in my neck--it's still numb to mid chin and partof my check and such---but it seems i am getting some feeling internally but it is hurting my ear and my jaw and my teeth and there is a feeling like when i move its pulling and tingling---VERy annoying...it is NOT on yet--as the surgeon wants to make sure it's all healed well first..
I don't blame him for that at all--patience is what i need--and well i have no more pain meds but i am having trouble getting comfy when i sleep---i am 2.5 weekspost op and want to fell better physically---maybe i am expecting too much
Monday, March 06, 2006
has anything changed..
NOT YET>>>i had a seizure tonight--and nightly seizures are NOT MY NORM...and it was a good one...needless to say i now feel like crud---hoping i will sleep well which i imagine i will
Saturday, March 04, 2006
2 weeks post op
I kept thinking my incision sites would start to feel better. I overall feel better until i try to sleep. Sleeping for me is still very difficult. I can't sleep on my left side--although i have for a bit and it makes me so sore...which is why i don't sleep well i guess. My incisions have some really red spots....and the one on my neck still has stitched sticking out--but they have gotten smaller so they myst be dissolving.
I think if i could just go to sleep and sleep each night all the way through i would feel so much better. i toss and turn and the thing isn't even on yet...
I have to call my Nuero and get it scheduled to be turned on. My seizure rate is therefore the same...
I think if i could just go to sleep and sleep each night all the way through i would feel so much better. i toss and turn and the thing isn't even on yet...
I have to call my Nuero and get it scheduled to be turned on. My seizure rate is therefore the same...
Thursday, March 02, 2006
13 days.....
Well i went to ASH Weds church last night nad byt hte time i got home i was wiped out. I am still sore today---i can't wait for the day i don't hurt in some way or another. My stitch that popped out is OK...Dr said to keep it covered to prevent infection but he didn't want to cut it as it's at the end of the line at the top of my neck and wants to keep it closed. It's a slow dissolving stitch but should dissolve. it's tender when it's caught on things--like my hair...
Tomorrow i will take pictures for my 2 weeks post op...aren't you all excited...
I also found a neat site for those who wanna know more about types of seizures
http://www.epilepsyontario.org/client/EO/EOWeb.nsf/web/Seizures+Main
Enjoy
Tomorrow i will take pictures for my 2 weeks post op...aren't you all excited...
I also found a neat site for those who wanna know more about types of seizures
http://www.epilepsyontario.org/client/EO/EOWeb.nsf/web/Seizures+Main
Enjoy
Tuesday, February 28, 2006
GRr the pain
Ok so i woke up this morning witht he incision under my arm killing me from sleepig wrong i imagine...so i slept part of the day with the pain meds...not good---but now tonight i turned my head and ripped a stitch in my neck---or at the very least popped it out from under the skin---bled for a bit but i have it covered with a band aid to keep it safe i guess...
I am singingin SUNDAY morning don't really wanna worry about this junk right now.
I have been practicing and my throat seems alright--not super strong but strong enough to get through i imagine...since it's a group of 5 of us i should be fine!!!!
hoping to get better sleep tonight PRAY FOR ME!! pogo time
I am singingin SUNDAY morning don't really wanna worry about this junk right now.
I have been practicing and my throat seems alright--not super strong but strong enough to get through i imagine...since it's a group of 5 of us i should be fine!!!!
hoping to get better sleep tonight PRAY FOR ME!! pogo time
ActionGeekBlog: Go with your gut
ActionGeekBlog: Go with your gut''Very interesting information on the vagus nerve check it out
Monday, February 27, 2006
I went shopping
Now to most you are probably saying SO WHAT...well first off shopping is my way of getting out of the house in general since i don't drive....SO i decided we need groceries and i am sick of looking at my house. We did our shopping. My arm incision is TONS more sore---turns outpushing a full grocery cart wasn't so smart--I am sore so sleeping should be fun or not...My neck is also very stuff----especially where i think the wires go to the stimulator in my armpit.
I am also worried about the location of the implant. It's running on my left arm and seems to move more than i think it should. It also doesn't appear to be FLAT against my skin but inserted into my muscle all i can feel is the edge of it NOT the face....wondering if this is gonna make it difficult to turn on in a few weeks. I have to wait til i am cleared march 15th by my surgeon to have it turned on. Since i was so ill with coughing and congestion the surgeon wants to make sure things are healing well enough. Theya re a bit delayed as nothing in my body wanted to heal while i was coughing. Today was the first day i haven't completely coughed my brains out. I still have congestion and have to vlear my throat when talking lots---but that is to be expected coming off surgery AND a severe bronchitus like cold.....Hopefully i will sleep well and not be too sore in the AM.
It sure was nice to get out of the house though. but i am sure i will need to rest tomorrow.!!!!!
I am finally home alone
Now don't get me wrong. I LOVE MY FAMILY!!!! But i missed my peace and quiet during the days. My husband took last week as vacation when we realized that I wasn't healing well had a very sore throat and almost no voice AND had trouble chewing and swallowing [this part has changed---i still have to chew on my right side BUT my swallowing is FINE as long as i don't rush it] So i slept in this morning after making sure the kids were up for school. I am doing some blogging on this and my other new blog which i am starting...yes i am nuts LOL
I figure this one gets boring just talking about vns--and although that's a big part of my life other things are going on..including missed concerts by my children this weekend as i was still coughing and in too much pain to sit through them:(
I am still sore in both incision spots--MOSTLY under my arm which is very tender..but then again--they did put a foreign body into my body and then left it there. I see my dr surgeon again on March 15th. Then i will be able to have it turned on AMEN....the fun begins!!!!
I figure this one gets boring just talking about vns--and although that's a big part of my life other things are going on..including missed concerts by my children this weekend as i was still coughing and in too much pain to sit through them:(
I am still sore in both incision spots--MOSTLY under my arm which is very tender..but then again--they did put a foreign body into my body and then left it there. I see my dr surgeon again on March 15th. Then i will be able to have it turned on AMEN....the fun begins!!!!
Friday, February 24, 2006
ONE WEEK done
On the left is my face one week after surgery. On the right
is my armpit area one week after surgery. The vns impant is under the bottom part of my armpit area. Since i will not be swiping mine with a magnet very often and it will just be on...they put it in a place that will be easy to access to change the batteries...
Wondering how long that will take since they are talking that mine will have to be done on the smaller end...At least i know i won't have to play with my neck any more.!!!!
Thursday, February 23, 2006
Want your epilepsy blog links posted??
Send them to me either through comments or emails and i will add the link to my site...after making sure it's a FAMILY safe site!!!!!!
thanks
KIM
thanks
KIM
Day 6
Well I haven't posted in several days. I have not been feeling well at all. The cold I stopped so I could have surgery cam eon full force after......I still have a very deep cough and it hurts SOOOOO badly when I cough. I saw my surgeon yesterday and everything he says looks good. The neck being numb is normal. He had to pull things out farther for me as I told him I sing and needed to sing in two weeks time post op. so he took extra precaution for my neck surgery. The actual stimulator was placed in my armpit area. I cannot feel it yet. There is still TONS of swelling at both incision sites. He changed my pain meds from the oxycodne to tylenol 3. I had trouble taking the other as it made me sick. So hopefully with this one I can get some sleep. I am a naturally left sided sleeper and this not being comfy laying on my left side is making it hard to get the rest I need. I have slept two nights in bed the rest has been in the recliner where I actually get a better nights still[ this from a woman who can't just nap sitting in a chair!!!!] I have to be feeling well enough to go out this weekend as my oldest son has a county choir concert Sunday afternoon and my daughter has a district choir concert Saturday afternoon. Since I don't drive anyway I can take pain meds to help me out.
I don't like taking them in general so I save them for when I really need them. You don't heal as quickly as you think....I mean you hear outpatient surgery and you think can't be all that bad. Due to numbness in my neck I have to eat slowly and chew slowly as I don't have ths swelling abilities completely back yet....They are getting better though.
I haven't posted much as I didn't want to seem as if I was complaining.....I know it's a long road.....But feel people who are reading this should also know if they make the decision any information they can gather might be helpful.
I will post pictures as soon as we crop them---we have them dated etc....
Talk atcha soon
KIM
I don't like taking them in general so I save them for when I really need them. You don't heal as quickly as you think....I mean you hear outpatient surgery and you think can't be all that bad. Due to numbness in my neck I have to eat slowly and chew slowly as I don't have ths swelling abilities completely back yet....They are getting better though.
I haven't posted much as I didn't want to seem as if I was complaining.....I know it's a long road.....But feel people who are reading this should also know if they make the decision any information they can gather might be helpful.
I will post pictures as soon as we crop them---we have them dated etc....
Talk atcha soon
KIM
Sunday, February 19, 2006
Day two post op
It's Sunday morning and i was able to remove my bandages this morning. I slept for a good 8 hours last night. I am still having some numbness in my left neck and face...and hoping that as the swelling goes down so will the numbness. Hope that is not a permanent side effect.
I took some pictures and will add them as i crop and submit them on here.[Here are the pictures i promised----right is my face, left is my armpitarea. this is 48 hours post op] I have not been able to shower yet and I am still pretty sore but am taking as little pain meds as possible as i don't want to deal with the withdrawl of the meds. I am eating alright although i have to really concentrate to chew and swallow and not choke. I am getting some of my taste buds back as well...since it seems my left side of my tongue isn't as numb.
I am hoping that tomorrow is the last really bad day and that i start feeling better after that...I am sure the shower i get to take later today or tomorrow will surely help on that front. Right now i don't feel strong enough to stand in the shower. I am too shaky so am waiting til i am safer....
Will write more soon..i sure hope this is helping people understand what i am going through if you want or need more information please let me know
Kim
Saturday, February 18, 2006
Good Morning
It's 930 am the day after surgery. It's almost 24 hours post op. I am still numc under my whole chin area although i am more sore than i was last night. I slept in the recliner last night....I was told byseveral people they had to lay at 45 degree angle for 3 days after surgery. I was note given this after my surgery at all in fact in post op i wasn't in a 45 degree angle either!!
Anyway I still cannot feel the spot when the stimulator is but i am very swollen still. The area under my arm is VERY SORE and makes using my left arm as leverage for say getting up out of my chair more difficult. I can kind of see the incisioin under the bandages under my right arm--they couldn't cover it all the way due to location. it's about 3-4 inches long running up and down my body. The incision on my neck is covered but feels so very stretched due to the swelling feels like i swallowed a baseball. i can't see the incision but it's swelling towards the back of my neck, but this is expected.
My throat is no longer numb SOOOOO my throat is now very sore from the tube!!!! i am hoping to eat some eggs this morning and wathc olympics again--- can you believe the womens hockey team is playing for the bronze MAN!!!!!!
Ok off to rest.....
Anyway I still cannot feel the spot when the stimulator is but i am very swollen still. The area under my arm is VERY SORE and makes using my left arm as leverage for say getting up out of my chair more difficult. I can kind of see the incisioin under the bandages under my right arm--they couldn't cover it all the way due to location. it's about 3-4 inches long running up and down my body. The incision on my neck is covered but feels so very stretched due to the swelling feels like i swallowed a baseball. i can't see the incision but it's swelling towards the back of my neck, but this is expected.
My throat is no longer numb SOOOOO my throat is now very sore from the tube!!!! i am hoping to eat some eggs this morning and wathc olympics again--- can you believe the womens hockey team is playing for the bronze MAN!!!!!!
Ok off to rest.....
Friday, February 17, 2006
It's Done AMEN
We got to the hospital at 630am today. They did my instake questions. I got changed. They started my iv and gave me all my meds for my stomach[ i have a hietal hernia so they have to be more careful when sedating me and keeping my tummy from not being upset. David was with me along with my mother in law Joanne. The Anesthsialogist came in an explained that he would be giving me a longer tube in my throat due to my hietal hernia but we have to remind them to be careful of my vocal chords since i sing...since this tube would GO through my chords. Around 815am they took me back and i was in there a few mintes before DOWN i went...I came out of surgery two hours later. It was a deep cut in my throat since i am heavier they have to go deeeper. the cut in below my left ear. then there is another incision under my left armpit. Both are VERY sore even though they are technically NUMB still.[I didn't know they would numb the area!!! did anyone else have this]I was numb all the way up to my mouth and i couldn't swallow solids at all..had to really gulp fluids to get my pain pills down. I was home at 330pm and although tired and sore...Iwas expecting the pain to be much worse!!!!! I was told day 3 is the worst as that's the peak swelling and pian levels. I am also swollen enough that i cannot yet feel where the actuall stimulator is located. I think i can tell based on where it's most sore but i still can't feel it.
Day one PHOTOS
Wednesday, February 15, 2006
It's approved and a GO for Friday
I finally got approved for my VNS today and will be having the surgery done on friday morning at 830am. I am altering the meds i need to and getting rest to try and keep this cold under control!!!
Thanks to everyone for support...this is an important hurdle for me
Thanks to everyone for support...this is an important hurdle for me
Tuesday, February 14, 2006
MY INSURANCE GRRR
I have been fighting with my insurance to get approved in time for my surgery friday. They said they had everything and allowed me to do my pre op testing. Then today i find out i am still not approved and need to call my dr in the morning because two different forms have different seizure frequencies listed on them and they need clarification. I am praying that since i have to wean off of some of my meds that i will still be allowed to go ahead with my surgery on friday and if not then possibly next week. It has taken me so long to get to this point. I have been fighting nerves and illness and the stregth to say go ahead with it...to have it delayed will be such a let down!!!!
I will keep you updated
Kim
I will keep you updated
Kim
Monday, January 30, 2006
here is Stacy's blog about her journey with Epilepsy. I believe that everyone for whatever reason responds to different things...so putting it out there will surely help.....
http://coping-with-epilepsy.com/blog/
I am still anxious but hope to rest better this week. I have my pre op testing this friday. Anyone wanna fast with me LOL
http://coping-with-epilepsy.com/blog/
I am still anxious but hope to rest better this week. I have my pre op testing this friday. Anyone wanna fast with me LOL
Saturday, January 28, 2006
Another Blog to look at regarding VNS
This is where I got the idea to blog my thoughts.. it's a neat blog check it out
http://scott-lwe.blogspot.com/
Didn't sleep all that well i have so much racing through my head. Figure one of these days i will just ZONK OUT!!!
http://scott-lwe.blogspot.com/
Didn't sleep all that well i have so much racing through my head. Figure one of these days i will just ZONK OUT!!!
MY VNS Surgery is Scheduled
Well.....it's official. I wil be having my VNS surgery on Feb 17, 2006 at 830am. I have been doing a great deal of reading and research. For those that do not know what VNS is ...i will be explaining it more as this blog goes on...until then Go here
Thanks
Kim
Thanks
Kim
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