Well it's SUMMER

Well everyone things are going well. My seizures aren't any better, BUT I don't seem to care. I am finally living my life thanks to the VNS helping my depression. I am getting my vns turned up again on June 22. We shall see how that goes. I also am working at home for a couple of places and doing Mary Kay[ http://www.marykay.com/kimmarquart ] I am hoping to get some people who want to be reps for mary kay. I do my business ONLINE mostly so it's great if you wanna do it that way!!!

I hope everyone has a great summer....
And don't forget to check back. I am going to write more often as soon as I am not so NUTSO busy LOL

Kim

Nothing new really

Nothing terribly new....I am having face pain still but out of vicodin and really don't wanna get addicted to it. But it seems i am getting some muscle and neck feeling controls etc back[ wow that makes no sense ]. I am hoping that the pain will subside as it heals more[ after a year you would think it would've been healed. I haven't had it turned up recently and need to schedule an appt with my nuero for meds so might see if he thinks it should be turned up. I mean..same ole seizures JUST less depression WOOHOO

I am still working from home and worry about what a higher amp to my throat/head would do to my talking voice. Right now i have pretty much adjusted to it at 1 amp. We shall see.

Yeah i am updating

I have been sharing this link with some friends from work and from a new group I am on...and well i should update on here.

I am doing well. Still working from home and LOVING IT!!!! HI WORKER FRIENDS!!!

The problem i seem to be having now is face pain and jaw pain from my vns. So we are taking pain meds for it until I can get into to see my surgeon. Hopefully before he leaves the area and I have to find another one.

The face and jaw pain get terrible by the time i go to bed but I keep my chin up. My job surely helps. great people and keeps me busy!!!
huggles and i will write again sometime soon LOL

Working

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

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.

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!!!

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

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

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

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....

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

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

a seizure

http://www.epilepsy.com/web/animation.php?swf=what_is'

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

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

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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

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

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

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

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!!!