New kid on the block!

[JustcallmeG]

Hi, its my first time in a forum, and honestly I don't know the first thing to say or do. I a just looking for someone that might "get me"... or ACTUALLY "understand me" when they say the words aloud. I am a 26 year old married woman in NY, I have two beautiful dogs, a love for reading, horseback riding, and a missing piece of my heart since we recently moved 5 hours away from all I had ever known, without a choice in the matter. I don't know how many of you have had, or have been thinking of getting it... but a few years back I had the VNS surgery, and I do have to say, I am very happy I had it done. I was skeptical, but I finally found a DR I trusted enough to talk me into it. I have the type of epilepsy you can't just dig in there and take a piece out like they had hoped, my seizue activity is running through, and coming from my entire brain. My seizures are very few and far between. I have had 2 in 3 and a half years, my ora's have returned full force, and are at times impossible. My doctor decided it is time for disability for me, at only 26. I went to school 3 years ago for 2 years to become a dog trainer, directly after that became a dog groomer. Everything was going so well for me. Now if I try to focus a scissor, I drop it. My husband is having a hard time, dealing with "taking care of me", and I am having a hard time "being taken care of". Its tearing us apart, and it has only been a year. The barns in my new area, won't let me ride, because they tell me Im a disaster waiting to happen, while the barns back home, were the only places i felt like i wasn't made of glass. So... here I am today... trying to not feel alone...

 

[Silat]

Hello and welcome to CWE!

You're not alone with these issues, they're all too common in everyones lives... :?

Just wondering, are you taking any medications in conjunction with the VNS treatment? Also... I'm not entirely sure how VNS works, but doesn't it need a battery change or tune up every now and then? Could it be you're due for one and that's why your auras have gotten worse?

As far as the issues with your husband... I believe the best thing you both can do is to sit down and have a deep heart-to-heart conversation about the whole thing. Establish what you need help with, and what he can help with, so that you're both on the same page. Good communication is the key to any successful marriage, but especially so with one that has additional strains on it. A good ol' talk should help you guys figure things out, you've just got to be honest and open with each other

Hmm... as far as riding horses goes... I don't see why you can't ride. I know around where I live there are lots of barns that have horses trained specifically for beginners and for people who have any kind of disability. Pretty much any horse with a good attitude can be trained for just about any kind of rider. I don't see why it should be an issue at all. Maybe you could ask them to explain why they're telling you that? Unless they're just really bad at training horses, at which point you should offer to teach them how to train a horse

A little random, but what kind of dogs do you have?

 

[JustcallmeG]

Well, i suppose i'll go from the bottom of the reply , to the top. light and airy, to a bit more serious. As for my pups, my youngest is a... yea we know she is some kind of a hound, we rescued her from N.J. My newest, and oldest, was my foster, but he sold himself like he was on commission... he is a pure American Pit Bull.

The horse riding... The woman told me, if I can't even work at a simple convienience store, theres no way I should be on a horse especially at her barn. "Theres more to riding a horse than just sitting there you know?" Kind of insulting since I went to a horsemanship school, graduated and certified...

Our Marriage, I agree with your words, my husbnd however isn't a fan of talking about that. We both know how he feels, and every time the conversation comes round, he gets defensive and guilty. We are working it out in our own way... I really hope...

The VNS, every 8 years or so, you have to get the pack in your chest recharged, or changed out. See what technology does in 5 years, I am on 3 different medications, my doctor a few months back increased that, and consistantly so increased the frequency of the VNS. Since, my aura's have lessened, so I know the vns is working, I feel more focused, more energy. But there not gone, I have 3 more basic frequency's left to go on the VNS, and then... the really strong ones after that. I take Dilantin, Zonegran, and Limictal.

Thank you for your welcome, it was kind.

 

[julie wishes]

Hi G and welcome. I'm new as well. I hope you will see there are a lot of people experiencing the same things you are as you read through these posts. You will not feel alone anymore. I am absolutely nuts over gypsy vanners... I hope you can find a place that lets you ride again. It must relieve a lot of stress for you being up on those magnificent animals. Sounds like you could use an outlet.

 

[JustcallmeG]

Thank you for the welcome Julie, yes I really do need an outlit. My husband has many outlits, and more to come. I am so jealous, I miss the horses very much, they are wonderful "people", who save my life once, I am hoping to find a place that will allow them back in my life again.

 

[julie wishes]

Can you volunteer to groom them, feed them, muck the stalls (LOL), for a while until the lady gets to know you and then maybe she'll let you ride again? At least you will be around them. I can imagine they saved you. They are so majestic and intelligent.

Sometimes helping others is a great way to in fact help yourself. There are many volunteer options out there. I don't know if you would be able to do anything like that.

 

[JustcallmeG]

I found a barn, that will let me do some basic lessons in the mornin. Very very basic, it is all they offer. another that will let me trail ride. I offered the lady some help at the barn, you know the place that didn't want me there, and she said if you can't be here 9-5, as it would be a job, then i can't have you her. I can't monitor your every move...

Really I just wanted to do some mucking out stalls here and there, helping turn out horses... she wants her "volunteers" there at 6am in the morning, and they are not to leave until all there work is done. They have a schedule, if you need a day off, you need to either let them know a month in advance, or try and switch off with someone. I thought... really... for a volunteer position...

 

[chop456]

Welcome to CWE! Lots of great advice and knowledge in this forum!

I am amazed at the amount of commitment the barn is expecting for their volunteers! The time frame is something else! Hopefully you will find something soon that fits into your schedule.

 

[jyearta]

Hi and welcome.

I understand what you are saying about your husband.

My husband does not want to talk or deal with my problems.

I tryied the setting down and LET'S HAVE A TALK. You can not make anyone listen and except if they are not willing to.
I tell him how hurtful it is to me when he does something, not in a mean way.

I will NEVER understand him, he gets mad when someone else says or treats me in anyway like I'm not all there.

I tell my husband what i'm needing from him, the rest is up to him.

 

[DadofTwins]

Hi and Welcome,

So sorry to hear about the difficulties you are having. I agree with the others. It is time to sit down with the man that you married and discuss the new normal. You are not made of glass, but you are not bulletproof.

The two of you need to decide how you want to live. Quality of life is important for all and working together, you can improve it for both of you.

 

[Cint]

Hi JustcallmeG,

I've had E for over 30 years now and have tried numerous meds and now have the VNS, also. At one time in my life I was having 4-5 CP's a day along with 2-3 TC's a month. Now with the help of the VNS, it is down to maybe 2-3 CP's a year. Plus I still take 3000 mgs. of Keppra + 200 mgs. of Topomax. I've had the VNS since 1998 and have had two new batteries.
I was once married to a pilot and lived 1200 miles from home, so had to do a lot of things on my own and ask for help in finding rides, finding help with my kids, etc. My husband didn't seem to try to understand much, his nose was always "up in the air".
The epileptologist I used to see (she is now in Boston) owned horses, and as therapy for her patients, once a month she would have a riding class in a rented barn. Some of the patients were so bad off, they would have to wear helmets while on the horse, even. So, hopefully, you will be able to ride again.

 

[nana1]

welcome!

I have had E for over 50 years. They have no idea how to control mind. Am taking 3 different meds at very high dosage, and doctors thinking about higher doses again. do not want me on any more meds. Ca not have brain surgery, no VNS- as i have no idea when seizure coming on.

You do get use to seizure. It becomes another part of your life, you learn to cope in different ways.

 

[Nakamova]

Hi JustcallmeG, Just wanted to add my welcome to the others'!

I know a move can be disruptive and disheartening, but I bet that in time you'll be able to find resources and activities that are good match for you. In the meantime, there's CWE! Lots of great folks here to chat with and vent to, as needed.

Best,
Nakamova

 

[MomThreePointOh]

I am a horse person.
My husband just bought me my first paint mare for Mother's Day - we board her. She understands me. Horses just understand. Don't give up on riding... that is the one thing I worried most about because I'm still trying to break my girl, I will be buying a very nice helmet and having someone around while I ride. But if I'm just at the barn and fiddling around, I know my limits....

Something about it, not so stressful. Not many triggers or episodes.

 

[Heatherm]

Hello,

I too am new to CWE! I hope that you are able to find someone in your area, even if just a family that has horses, that would allow you to spend some much needed time with them. Maybe some vets in your area or a 4-H group would have an idea about someone that might be willing to allow you to come and help with their horses? Maybe you could teach the 4-H kids a thing or two about the big beauties! Just an idea.

 

[julie wishes]

I found a barn, that will let me do some basic lessons in the mornin. Very very basic, it is all they offer. another that will let me trail ride. I offered the lady some help at the barn, you know the place that didn't want me there, and she said if you can't be here 9-5, as it would be a job, then i can't have you her. I can't monitor your every move...

Really I just wanted to do some mucking out stalls here and there, helping turn out horses... she wants her "volunteers" there at 6am in the morning, and they are not to leave until all there work is done. They have a schedule, if you need a day off, you need to either let them know a month in advance, or try and switch off with someone. I thought... really... for a volunteer position...

rediculous... sounds like a long winded load of horse caca to me ... lol ... I would not want to be around that lady anyway, she sounds like a pain in the a$$ to me. Find a new place with positive energy. Tell her you don't need her horse doodie... LOL :cowboy:

 

[MomThreePointOh]

^^^ LOL!

You will find a barn - who doesn't want help with all the work?! Try to post on Craigslist, someone would surely love to have more attention for their horses and horses love attention! I often go and just brush my lady while she's munching on grass. Relaxing... hopefully you find somewhere soon