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Hi.

Most times I feel very supported by my family and boyfriend. But...my daugher (15) who wants me to take her to cheerleading in the heat and drop her at friends and pay for cheerleading camp and etc. etc. etc. last night announces she is tired of hearing me say I am not feeling well.

Really...her life has been minimally impacted. I still make sure she gets tot where she needs to go...I just do it slowly....and feel awful doing it and have to lay down...

My boyfriend said that sometimes he is frustrated as well. I try to talk about "the weather"...bla bla bla...but when my life has/is so altered and I feel so ill it is just a challenge at times.

I want to be able to talk to them....is this normal for them.. I got very angry with my boyfriend...i said "well,, if this is difficult for you try being in my shoes!!". I am furious with my daughter who I almost kill myself trying to still get her where she needs to go...

Anyone relate...??

Thanks,

Erika

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Honestly, fifteen year olds can find something to complain about when they have parents who are completely well. I'm not sure anyone can do enough or be enough for kids that age! It's a very narcissistic time in life. Our problems basically revolved around me not being well enough to really argue with them. Ofcourse, they knew this. Kids are really quite clever and know how to zone right in on your weak points.

That all said, they do get better...and mine did really understand where I was coming from most of the time. I remember one incident in which I was really hurt because I had gone out for a rare social evening with a few friends and ofcourse, when I returned home, I needed to go straight to bed. I made some remark about how it would be nice if everyone would pitch in a take care of what needed taking care of so I could do so and my daughter told me "well, maybe you just shouldn't go out if you're not able to do anything else!". That hurt for awhile. I also used to be very reluctant to ask my kids to do their fair share of work around the house. My mother finally pointed out that whether I was sick or not, the kids should be doing these things....I just felt guilty because somewhere in my mind I suppose I felt bad about NEEDING them to do these things.

This stuff is hard. Kids do adjust, and we don't do them any favors by pretending to them that they might not have to make sacrifices in their lives, too, or at least learn to manage things in different ways. Again, this is something I think all of them go through at this age as they realize that parents are just human beings, too. They still want to think that we will forever be around to make all their wishes come true. Alas, that's rarely the case.

My husband? It helped him tremendously to meet other people like me. As soon as he got over the notion that I was likely to drop dead all the time, he adjusted. We had a few fall outs as he thought I needed him to tell me what I should do or not do, but we got past that, too.

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At times like this you have to read between the lines ... to what is in their heart and not coming out of their mouths!!!!

For instance:

"I am tired of hearing me you say that you are not feeling well."

In the teenage mouth to heart translation dictionary means:

"Oh Mom. You are such an amazing role model. I owe you so much for all that you are doing for me with all that you have going on in your own life. I realize you are so selfless, I only hope that I can be half the Mom that you are when I grow up. I love you soooo much. What can I do to help? Make dinner for you? Vaccum the living room? Polish the floors?"

I have a 15 year old too ... and frankly if it wasn't for humor I'd have lost my mind years ago!!

Hang in there hun.

Lovely weather we are having. Who's playing tonight on ESPN? Did you see what the stock market closed at today? (Those are for your boyfriend ... he has a mouth to heart translation dictionary too.)

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Hi.

Most times I feel very supported by my family and boyfriend. But...my daugher (15) who wants me to take her to cheerleading in the heat and drop her at friends and pay for cheerleading camp and etc. etc. etc. last night announces she is tired of hearing me say I am not feeling well.

Really...her life has been minimally impacted. I still make sure she gets tot where she needs to go...I just do it slowly....and feel awful doing it and have to lay down...

My boyfriend said that sometimes he is frustrated as well. I try to talk about "the weather"...bla bla bla...but when my life has/is so altered and I feel so ill it is just a challenge at times.

I want to be able to talk to them....is this normal for them.. I got very angry with my boyfriend...i said "well,, if this is difficult for you try being in my shoes!!". I am furious with my daughter who I almost kill myself trying to still get her where she needs to go...

Anyone relate...??

Thanks,

Erika

lol i feel your pain. Its a strain on everybody but its definitely worse on those who have the condition in my opinion.

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Hi,

I am sorry for what you are going through with your family. I wish there was a way that we could make everyone understand what we experience every day. Remember though that 15 is a hard age, especially when your daughter's life is probably changing a lot right now due to factors both related to and completely seperate from your condition. This is one thing that I think we all struggle with... we are scared of what is happening to us, and our family members are scared of what is happening to us too. Fear of the unknown creates a lot of stress for everyone. We all want to stand by our loved ones in difficult times, but some days we just feel like we need a break, and I think that this is a source of stress for all of us and our families. It might help your daughter feel better if you let her know that you understand that what is happening is scary and difficult and that there will be some changes that need to be made, but that you love her and are going to do what you can to make both of your lives the best quality that they can be.

Hugs and Warm Wishes!

~ Broken_Shell :)

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I can relate to what you're going thru. In my family I find no one really wants to hear my problems.

I doubt that any one of them could tell you any of my symptoms or diagnosis. I accidentally heard my DH talking on the phone trying to tell someone the name of my illness & he couldn't think of it. I rarely mention how I feel. I have a teenager GD who is a sweet child but life is all about them. You can always come here for support as I do.

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You all are so great!

I appreciate your comments so much. It gives me perspective and allows me not to kill them all from time to time! I know they are doing their best and it is a challenge on all of us. AND truley...they can only try to understand...my boyfriend said well, what is it you need my help with? I said I probably just need to complain for 15 minutes a day...then i can move on!

Alicia - you made me laugh so hard when you said your husband/boyfriend couldn't remember the name of your illness!! I would have walked up and hit him in the head with a pot and said rememer now? (just kidding!!)

EM - you are right 15 year olds have their own language ... your post made me cry.

Anyway...thank you all..

Erika

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erika,

i really feel for you as i struggle with this issue with my siblings and grown children. my doc told me they are scared, no one wants a sick mom, girlfriend, (he's gone) sister or whatever i may be. even some of my friends just don't get it. i found the more i talked the less i saw my family. i was heartbroken, as i was used to being with my daughter and grandchildren all the time.

right after my grandson was born i had gotten so sick from the beta blockers (pre pots). i was trying to take care of my daughter as she just had the baby. i hadn't been dx yet. from there i went down hill very fast. she joked that what almost killed me was taking care of her. as that's when i couldn't breathe going over the stairs. i thought informing everyone about everything was the best thing, right? wrong! then my 3 year old granddaughter started to be the only one who who talk. openly expressing, "nannie i'm going to really miss you when you die." i would tell her that i wasn't going to for a long time and she would say, "i know but I want you to know that i love you and i will really, really miss you."

no one else would say a word. other times she would say, "nannie, you're never gonna get better are you? or " can i have a picture of you so i can remember you, you know when, when you go up there." she would be pointing up to the sky. she did tell me at almost 3, "nannie we should be very mad at everyone else cause they don't understand." i could go on and on with things she says when no one else will dare most right in front of them and silent they sit. out of the mouths of babes comes wisdom.

back to the talk with my doc, he said don't tell them much anymore. save it for the forum and a few friends. the more you tell them especially since they all seem to have some symptoms and won't do anything, just be happy around them. make happy memories to remember you by. be as fun as you can, when you are able, save everything else for others.

then he said, "FAKE IT TILL YOU MAKE IT!" Things have been much better since that day. i told my daughter i had listened to a radio show that said you should live each hour like it's your last. one day a week when she comes out with my grand babies and her brother comes over i feel like i get to live that way.

i know my mom must have had pots when i was little. she was constally sick, i worried my whole childhood away. no child wants to believe there mom is really sick 24/7. relationship repair down the road can be hard, i never knew i had pots till 1 1/2 years ago, but i know i had it my whole life. i guess i'm just trying to say we're all here for each other. family, friends, and just like the docs in the er they just don't get it. we make new friends here, connect, email, and today i got my first phone call from a friend here. that's how we get by, we get by with a little help from our friends.

that's one more reason i wish we had a chat room here.

good luck, you hit a heart string in me. i hope i didn't babble on too much!

and thanks to my friend who made my day by calling.

blessings and love~

bellamia~

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