do you guys have supporting families and friends?? my hubby is it!! i mean all my friends and family care but when they hang the phone up thats when they forget me. i live out in the country, so there is nothing in walking distance. i would love to take my kids to the park or get ice cream, but i will never drive with them in the car!! everyone calls and tells me what great adventures they have been doing and then they ask me, and my reply is since i can't drive we stayed home and played. i always recieve the same responce, oh yeah i forgot nextt ime i will call you and you guys can come with us! needless to say the phone doesn't ring until after they haave went! I guess i'm alitttle mad today!! my husband and me and the kids went over to my grandma's yesterday and plowed her garden and did a few other little odds and ends, she got to talking about strawberries. asked if i had gotten any yet. i told her no that they have been closed by the time randy gets home from work. she said she had and they were so good she was going back today and get herself somemore. no offer of taking me or getting me some after hinting nonstop. we are always there for everyone, rather its babysitting, baling hay(which is more me than my husband), building porches, painting, making food for weddings or parties, but no one ever takes the time out for us!! (for me when i need it) am i wrong about this? i don't expect them to cater to me and the kids but calling once in awhile wouldn't hurt, especially if they care as much as they are always saying they do!! maybe i'm just having another pity party for myself!!?? or maybe a good cry is all the relief i need. sorry for being so down!!

http://www.healthboards.com/ubb/angel.gif Lisa

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Angels are real! When you need them most they come. My angel is my daughter who saved me from drowning in our bath tub. She's my hero and my life!

Hi Lisa,

Trust me I can relate to your problem. I can drive - baby Jake has E. We live out of state from most of my family and dh's dad lives with us.

There is no one to help most of the year...

My issues come when family and friends come in from out of town. I live in Tampa FL and since moving here in 00 we have had a steady stream of visitors. Most never took the time to "come see" me when I lived closer.

Everyone wants me to take vacation when "THEY" are here. FORGET IT! ALL of my vacation this year has been used up in the ICU at All Childrens Hospital with electods taped all over my lil' guys head and body.

Vacation to go to the beach? How noval, why didn't I think of that??? ...could it be the meds that Jake is on that react to the sun or the hospital bed that we would have to push through the sand for Dad, hmmm...

** takes a deep breath as she steps off her soap box **

Ask for help. All they can do is tell you no. That's when you start to cross folks off your list.

My best friend was in last week. I did take time off to spend with her. The reason, she asked how to treat Jake during a seizure, and how to change Dad's diaper. With this knowledge she sent dh and I on a much needed day together. What a great Fathers Day gift.

My sister on the other hand. She's off my list. No calls to see how everyone's doing for months at a time, didn't give me her trip details until 2 days before she got here. And very angry when I told her that I wouldn't be able to get the time off work. I should be able to take it off without pay, right... WHO's She Kidding? One day without pay - let's see - that's about what I pay every couple weeks for Jake's meds.

You're not alone, Lisa! Ask to be included - you'll be surprised who may offer the next time.

Hugs and prayers.

Lisa
Jake 12/31/01

My husband doesn't care about my problems. I have a headache (again).
Can I join the pity party?

Lisa
Could it be possible that friends and family are worried or afraid if you were to have a sz while they were with you? Worried they wouldn't know what to do or how to respond? I might be way off base, but it was a thought.

When my husband and I were dating, it wasn't long after I had been diagnosed with tonic clonic sz. You know what his now dearly departed grandmother said to him? "Are you sure you want to marry her?" I guess I was too damaged to be good enough! That soooo pissed me off, I didn't know about this comment till years later. She had suffered several strokes and a few years before she died she started having seizures! I used to go to her house and fill her pill boxes for her and one night I said "Oh, Nanny, you take Phenobarbital, so do I!" http://www.healthboards.com/ubb/biggrin.gif

Lisa,

I am so sorry to hear that. I know what it feels like. Not now in my current condition but years ago. I don't really know what to say. You have helped me so many times in so many other situations and now that I can help you I find myself speechless. I hate that!

You should let them all know how you feel. Tell them in a nice way that you are always there for them and it would be nice every now and then to be thought of before the fun is over. If it is the "E" that they are scared of then inform them. Information is power! If you have all the facts then you are less likely to be affraid or nervous around it. Ask them flat out if that is what is happening. Are they affraid?? Sometimes people don't even realize what they are doing and you have to come right out and ask. Usually they will feel bad for acting that way and they will help you or include you. Just talk to them. If they don't like what they hear then they are not your friends at all are they?!

You are not wrong for feeling this way. Anyone would feel this way if this was happening to them. I just wish I could come over and give you a big hug. We could sit and have MOMMY TIME and just let it all out with someone who knows what it is like and at the same time cares about you. OH WHAT A THING TO HAVE!! (Heavy Sigh) Please let us know how you are doing. Write back and let us know!!

God Bless you Dear,
KittyMom

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

Hi Lisa,

Hugs – I hope your feeling better Sweetie! I owe you an apology. I let issues of my own come thru there just a bit…

Got to thinking about your post and the response of some of the others. And they are so right – fear and misunderstanding! Educate those around you first, talk to them E, about being alone without transportation during the day and why.

The other thing I thought about was it sounds like you may be the caregiver in your family; the person who everyone else turns to when they are in need. It’s hard to step out of that role. You may be use to living up to the part. So others don’t see a change as long as you are still plowing the garden and bailing hay. J This isn’t a bad thing if you think about it; you are still doing what you do even with E. This speaks so highly of you as a person.

Talk to your family and friends. Maybe your husband could drop you at Grandma’s on his way to work and you could go with her next time she picks berries (seasons about over, I can’t believe this year is going so fast), see if someone picks you and the kids up in the afternoon he could pick you up on his way home. Make those arrangements, set details, and put it on the calendar, not just next time we would like to go… I know myself that if I’m getting the kids together and off to the park I don’t think of things right then to make that call, all I’m thinking about is where is Jenny’s shoes again…

BTW, I miss the country a great deal. My older kids and I lived outside of Mammoth Cave KY for about 6 years. Our closest neighbor was a mile up a dead end road. I loved it most of the time, but it can be very lonely if you have no way into town. I’m with Kitty – I wish that I could come pick you all up for ice cream!!! But only if you let me hoe weeds in the garden for a spell, Jake’s not gotten that first mouth full of dirt and bug combo yet! http://www.healthboards.com/ubb/wink.gif

Lisa

okay my day started out alright until we went to the library. My daughter made friends with a girl whose mom i went to school with. she wanted to come over and play (i only do that if my husband is around the house for the day) and i explained i wouldn't feel comfortable incase i had a seizure while she was there. GET THIS!! she was offended! oh my daughter would be fine. she wouldn't get into your things if that is what you mean. i assured her i didn't mean her daughter would do bad things, but i was uncomfortable with the idea that they could get hurt before i came around. well that made things better!!??????? I think i missed something in that conversation? Am i crazy or was that insane?? and to top off the day, my insane sister-in-law calls. Can you watch the kids??(hers are 3 and 4) it was one of those moments when you know everything has been arranged so your answer really doesn't matter. so i watch her kids. My hubby calls after i have been watching them for about an hour and is pissed!!! He calls his brother and within 45 minutes they are back. Randy told them when he called me that it sounded as though i had my hands full and she needed to get her butt over to our house to help out!! http://www.healthboards.com/ubb/biggrin.gif way to go hubby!! So my brother-in-law leaves her with me to help. she starts talking about how my husband is using me as a crutch. that he needs to give me more responsability and make me deal with this. then in the next statement she tells me how she is going to follow me to my doctors appointment in her car. (while i drive my kids) I don't think i have ever been more speechless. I do not try to get out of things, i work my ass off. yes i took off work for awhile, only because i was having a seizure at work almost everyday!!! how dare she! is this why noone helps me out?? do they all think this is no big deal??

i know i haven't responded to you guys, i'm sorry. i am so hurt.... how could she??? yet another blow to the already none existant self-esteem!!!!!!

:angel Lisa

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Angels are real! When you need them most they come. My angel is my daughter who saved me from drowning in our bath tub. She's my hero and my life!

[This message has been edited by Lisa T (edited 06-25-2003).]

Hi Lisa,

No need to respond, so don't add that to your list of things on your mind.

Just know that there are those of us out here who do understand.

Your SIL sounds like my sister. Just know that some folks will never get it. And don't feel bad about telling her no to further sitting - sounds like she knows your home so what else could you possibly have to do? RIGHT? Tell her the same thing you told your daughters friend.

Sounds like your husband is a Gem. Glad he stood up for you.

Hugs, your in my thoughts and prayers.

Lisa and Jake