Another let down

[Sue]

My daughter Kelly has been playing soccer for a long time. She is actually really good at!!! Last night was her soccer banquet and even though I really wasn't up to going I forced myself out the door!! Well we get to the hall, can you believe the air was broke!!! It was 91' degrees yesterday without the heat index. So I told my daughter I would stay as long as I could. Well they stretched the dinner for two hours, why they do that I have no idea. The kids all had finals today...

Well we got there at 7:00 by 9:00 I was wiped out, hot, and nauseaus. So I have my mom pick me up..

Two hours later!!! She finally gets home, She won MVP of the year!!!!! And I missed it. I am still so upset. I have always been there for my kids, never missing a game, event or anything. This was her BEST year, I missed every game but one and then I missed out on the best moment of high school. I still can't believe it. When she came home she was so excited and then started to cry. She wouldn't tell me why she was crying but I know why... I hate to disappoint my kids but I just don't know what to do. I know they understand but deep down inside I know this really bothers them that I am not there. To make matters worse they are both teenagers and I am one of the lucky ones that my kids want me there!!! If this goes on much longer, who knows maybe they won't even miss me being there That would break my heart.

This is the longest it has ever taken me to snap out of this. It has been since January with two bad episodes ending up in the hospital as well. There are so many more people with this I don't understand why the medical field can't get a grip on this. There has to be an answer somewhere.

I am so sorry to vent on you guys again, I just want my life back. I don't even care any more if I never go back to work or drive again. I just want to be able to function for two hours out of my house to attend the important things.

Sry,

Sue

[MightyMouse]

Awe Sue

I know it probably doesn't matter if I say this, but you can only do your best... try not to be so hard on yourself.

I'm curious...is your daughter upset with you?? Or is it that you're more upset with yourself?

Big hug.

Nina

[Guest tearose]

Sue, I am so sorry that you were unable to be there and this is unfortunately what happens when our bodies are in crisis. You were right to get to a better environment. Otherwise you might be writing about how the EMS was called to carry you off in an ambulance!!! When I've missed very special events in my children's life...and I've missed some major ones, I make a point to schedule a VERY SPECIAL and unique time with that son to celebrate the occasion. It isn't always possible to be there in person at the moment of award however the joyful celebration should linger anyway! Keep your spirits up and also talk openly with your daughter about your feelings. Take care, tearose

[Sue]

Mighty Mouse & Tearose

It is more than I am upset with myself, I don't think my daughter is mad, probley more disappointed that I wasn't there at her big moment. I had flowers delivered for her so she will be surprised when she gets home from school

thanks for listening, always

sue

[UnicornIsis]

Sue,

I am the child with it, at 21 I still consider myself a child. I got upset when I wasn't able to see all of my brother's football games this year and this is his Senior year. I may not even be able to see his graduation because it's supposed to be outside in the afternoon. My mom takes off from work every time to take me to the doctor and when I'm not doing well too. I understand how your daughter feels. But have you thought that her tears may not have been for herself because her mother wasn't able to see her get the award. Her tears may have been for you that YOU didn't get the pleasure of seeing her get the award. She knows you love her and that you do everything you can and More to be there for her. My mom got sick when I was in high school with something that was temporary but she missed a lot of family get togethers at the time and family is really important to all of us. Dad, my brother, and I would come home to find her crying because she had to miss it. Then I would start crying because I was sad that she didn't get do something she loved to do. That may be the same reason your daughter was crying, for you not her. Talk to her about it and see how she feels and what she says. I'm sure you have already done this, but I would suggest doing it again specifically for the MVP award situation.

Here is something that may help for you at least. My parents went out and bought a digital camera. (They wanted to get a video camera but we just didn't have the money and we had a gift thing for the digital one.) Everything that I can't come to they take pictures of it for me. And anything that is outdoors, like family picnics, and really really special stuff my aunt uses her video camera to make a tape of it for me. Then when the family gets home they all sit down and watch it wtih me. That way I still get to be there for my brother or family or whoever or whatever the event is. They even went to dollar tree and got a lawn chair for me to sit in to watch videos that are of outdoor events. And at family parties the extended family sends food from the picnic with my parents so I get to eat it while watching the video and feel like I was there even more. They find something to "decorate me with" for each tape I watch, usually something from Dollar Tree. This is something you might want to try. It has really made a BIG difference.. for me and for my family. And on the tapes usually everybody says hi or has a message for me. That part never fails to make me laugh. They all try to be funny or do something stupid to get me to laugh so I'm not so sad over missing it.

My brother doesn't let on that he cares about anything, but when I watched the tapes of his football games, they would wrap me up in the school spirit blanket so I would feel like I was in the stands and he would get up and start acting out the plays. It was so much fun and soooo funny. It never fails to cheer me up to watch the videos, even though I do cry a bit while watching them. And then I get to have that event permanently to watch. Sometimes when I'm feeling lonely or shut in Mom will pick a tape at random and pop it in and watch it with me. It never fails to cheer me up. I hope this helps you and your daughter!!

[danelle]

Sue,

I am at the exact same place you are so I can totally relate. I am so sorry you missed your daughter's special moment. I know how badly that hurts. Just reading your post broke my heart for you. I have also been unable to snap out of this POTS thing for about 2 months now, with no good days at all!! I have had to leave work shortly after getting there because I can't function(I have only worked 8 hours in 2 weeks) THis has happened 4 times this month, not including the times I have had to call in. Needless to say, we are under extreme financial stress right now.

I have 2 teenagers as well. My oldest son graduated on Sun. Well, guess what happened? I woke up out of my sleep at around 5 that morning with my heart flying and couldn't breathe or see good. Just knew I was gonna have to call 911 and all I could think of was missing his graduation. Luckily after about 40 minutes and extra meds, I was able to get it under control. I did make it to the graduation but it was SO hard, the air wasn't working as well and I could feel myself wanting to pass out several times. Just when I was telling my husband I didn't think I would be able to make it any longer the air kicked on!! THank God-but it was still hard to make it through. THen I had 30+ people over for lasagna. It all worked out ok but I know how you feel. It hurts so bad that we can't do just the simplest things with our kids. And I know for a fact that it hurt you more than it did her for you to miss her award. Our kids love us unconditionally and that is what is keeping me going right now. I do sometimes see disappointment in their eyes when they want me to go do something with them and I just can't, it breaks my heart but the disappointment that I see in their eyes is for me, not for themselves.

Didn't mean to rattle on, just wanted you to know that I am in the same spot as you are right now and I agree, it *****, and that is putting it nicely. I can't understand either about the dr's. But I don't even want to go there right now.

Just know that I am thinking about you and my heart goes out to you. Give your daughter a big hug, she knows how proud you are of her. Try not to beat yourself up over it. Let us know how you continue to do and I will be praying for you to get better as well.

Big hugs,

Danelle

[danelle]

UnicornIsis,

Wow, I just read your reply. You must have been typing at the same time I was. I guess I know my kids pretty well. You said what I thought my kids were feeling and I know Sue's daoughter feels the same way!

I am so glad that your family does that for you, that sounds awesome!!!

My POTS started at the age of 18 so I know how you feel too. Hang in there and know that we are all here for you.

And thanks for letting us parents see things from your point of view.

Many hugs to you too,

Danelle

[Deb]

Gosh Sue, you really have been through it. I was feeling sorry for myself because I had to leave early from my daughter's graduation Monday, and I still feel bad. I don't know why it makes me feel relieved to read about others, but it does. I guess it just helps to know that I'm not abnormal.

And I agree with you. Why isn't there more aggressive research and why aren't our doctors trying harder? I can't even get mine to call back. It's been over two weeks since I started this episode, and it's the worse I've had since I was diagnosed. It's so darn frustrating!!!! I'm trying to be the "squeeky wheel", but that's not even mking anything happen.

Did you ever find out why you had that really bad episode that put you in the hospital the last time? That had to have been so scary. I could tell from your daughter's posts that she was scared for you.

Keep talking with your children about how proud you are of them. I feel sure they know that you are always there for them, even if you can't actually see the events. I bet she was crying because she felt bad that you were so disappointed in having to leave early. She sounds like a very caring girl.

I'll be thinking of you.

[UnicornIsis]

I think we ALL have a MAJOR case of brain fog!! I was reading over the posts and I noticed we kept saying something in common... that we would get to the event, usually pushing ourselves to get that far and end up leaving early. I know I've done it many a time. Have any of us ever thought of the obvisous solution that is staring us in the face? I know I haven't thought of it until now, which makes me wonder just how much of my brain is effected by all this! Why don't we go to things late? That way we would get to miss the LONG, BORING speaches and the waiting and waiting and waiting until it finally starts. If we all went late to things we would be able to see the good parts, the parts we REALLY WANT to see.

Don't know if any of y'all are feeling the same way I am right now, but I'm feeling sooo out of it for not thinking of this a long time ago! I can't get the smilies to work or there would be one of me blushing and feeling stupid right here.

Danelle, I think we were typing at the same time. I'm glad I could give y'all a look at it from your kids' side of things. That's why I wanted to respond to this one so badly!!

And Sue, please tell your daughter CONGRATULATIONS!!!!! for me! What she did is a major accomplishment!! And she should jsut as proud of herself as you are of her!!

[Sue]

Thank you everyone so much for caring. Its too bad we all don't live close to each other.. Wouldn't that be great. All of you are the best support I have had with this.

I really don't know what or where I would go without you's.

Dr. Grubb believes I went into autonomic failure, I still am not sure. All I know is I can't seem to get rid of the presyncopic mode. I am constantly going back and forth between lightheaded and dizzy. No fun... I can't seem to find any relief. I call the dr.s office and all I get now is the nurse telling me I need to get patient. So I got smart and wrote Grubb a letter marked it personal and confidential, we'll see what happens. I'm spending most of my time either on the couch or in my room lying on my bed with the keyboard (my umbilical cord!!) lol

Anyway I need to get off the computer, we have tormado warnings right now. It was beautiful and sunny an hour ago, now its storming and greyish yellow out there. Hmmm Michigan weather!!!

Love you guys,

Sue

Oh and by the way that is so awesome that your family does that for you!! I think that is the coolest!!

[ethansmom]

Sue,

I am sorry to hear that you missed your daughters big moment. It's so tough when we miss those moments with our kids My son is just getting to the age where I miss little things that aren't so important to him yet, but I wonder what the future will hold. I missed his first trip to the zoo last month, and that was tough- it's the little things sometimes.

But the great thing is that your children are going to love you the same either way- and I truly beleive that this experience in THEIR lives will make them more compassionate individuals later in life. Don't be too hard on yourself- you're doing a great job