Replies to This Discussion

Permalink Reply by Lianne on August 11, 2009 at 11:33am

I don't handle it well at all, I move in and out of denial that my AVM is there at all, I go thru bouts of shear panic, and the fear of a bleed is on my mind 24/7 then drop back in to denial and pretend it isn't there, then repeat. I go from being totally involved in AVM and getting all the info & support I can to feeling completely totally overwhelmed. for the first few months I could not be left alone and almost lost my then boyfriend (now husband) because he couldn't even go to the grocery store without me panicking and starting a fight with him... even now I hate being alone and constantly worry when I am alone with my 3 year old son that something happens to me and he is left there by his little self.

I am 7 years into diagnosis and most of the time I don't feel I am any further ahead than I was the day I found out. In the movie Tuck Everlasting they father says "Do not fear death, rather the life unlived, you don't have to live forever, you just have to live" it is a statement that gets me and is where I long to be, living my life for the moment, enjoy every gift I have been given, I am not there yet but I will be someday...

Permalink Reply by Kim P. on August 12, 2009 at 1:15pm

Marcia,

I find I have a lot of similarities with Lianne about how I deal (or not deal) with my 'unknown'. I stopped being verbal about it long ago to any friends or family, I keep the internal dialog just that, internal. It has not had a good effect on my personality. I often find myself thinking things like... how can so-and-so be talking to me about... or asking me to do such-and-such when right now my pain is about a 6 or 7 out of 10 and all I can seem to think is... am I going to have a bleed?

Although I did recently try and talk to my boyfriend about it. He doesn't know how to deal I guess. I met him in 1994 and was in pretty good health. I could hide my symptoms early on because we didn't spend a bunch of time together. Although I hid my symptoms I told him right from the start that I had an AVM and explained it to him. I now know I was wrong in hiding my symptoms. No one likes a wet blanket and now he's experiencing me not at my best.

For the past 6 months or so I seem to be having a very bad time neurologically and I'm not getting everything done around the house that I'd like to. He's noticed and doesn't understand. So I try harder, sleep less and basically run myself down trying to keep up and please him. I've basically come to a decision that I'm going to only do what I can and then I'm going to rest. No housework is worth a bleed, or worse, in my opinion.

Sorry for the rant, thanks for listening.

Permalink Reply by Kim P. on August 13, 2009 at 12:39am

Should have read 2004. I'll blame it on my AVM. :-)

Permalink Reply by stacey on August 13, 2009 at 7:55am

I agree with you. I have told my husband that I would like to get a few more opinions on my "inoperable monster in my brain". He feels it is just a big risk. However, he doesn't live with it inside HIS head every single minute of his life. I suppose I appear normal to everyone because I am not disabled from my AVM as of today.

Permalink Reply by Brenda Dinch on August 13, 2009 at 9:40am

When I first found out about my AVM I panicked, thought I was going to die right away. I had anxiety attacks, cried daily, angry, just so many feeling's all balled up in a one. I was told my AVM is inoperable and went all over for opinions. I was told over and over again to live my life the best way I could and move on. I have tried to just move on but it's really ard to do that when I have a daily headache every morning of my life. Its a constent reminder that the demon is in my head. People tell me I handle all of this so well but I have know choice. My family is angry that I have this AVM because we have dealt with this our entire live's because my mother also had an inoperable AVM which she past away from in 2004. I'm not angry or feel sorry for myself. I tell them why not me, it had to happen to someone. I truely believe that God would not have let me have this or my mother if we couldn't handle it. We are all just passing through and our lives are not our own. I think that we all have a gift to do good in life, I could never find what my gift was until I found out about my AVM but now I realize this was my gift. As time goes by I see that I can use this as a tool for good or I can lay down and die and feel sorry for myself, I choose to be happy and not let it get to me. Don't get me wrong, I have my bad days and some times I have my little pitty party but, I try to pick myself up and move on. God is always with me and he helps me get through those bad days that I just can't do it on my own.

Permalink Reply by Marcia Frost on August 13, 2009 at 10:07am

Kim,

Sorry to hear you're having these problems. Is there a local person-to-person support group you can tap into? My sister has a severe nerve disorder (following a motorcycle accident which smashed her knee cap and tibia), so she and I can communicate, commiserate and support each other emotionally when needed -- by phone as we live a thousand miles apart. But sometimes it would be nice to get a hug.

It worries me when you write you try harder, get less sleep and run yourself into the ground. Exactly the opposite of what you need!!!!! Find a way to set bounds -- for yourself and if necessary for your boyfriend. Make rules for yourself -- I won't work past ..., I won't get less than --- hours sleep, If --- doesn't get done, I won't worry, do it, etc..

Maybe if your boyfriend does to the doctors with you one day he might better understand your limits....send him to this site to read some of the stories people tell. [This is what my sister did when we all thought she was making more of her disorder when we thought she should have recovered from her injuries.] You've been together along time, so hopefully he can understand what's really going on and how he can help you stay safe and healthy (physically, emotionally).

Take care,
Marcia





Kim Palmer said:

Marcia,

I find I have a lot of similarities with Lianne about how I deal (or not deal) with my 'unknown'. I stopped being verbal about it long ago to any friends or family, I keep the internal dialog just that, internal. It has not had a good effect on my personality. I often find myself thinking things like... how can so-and-so be talking to me about... or asking me to do such-and-such when right now my pain is about a 6 or 7 out of 10 and all I can seem to think is... am I going to have a bleed?

Although I did recently try and talk to my boyfriend about it. He doesn't know how to deal I guess. I met him in 1994 and was in pretty good health. I could hide my symptoms early on because we didn't spend a bunch of time together. Although I hid my symptoms I told him right from the start that I had an AVM and explained it to him. I now know I was wrong in hiding my symptoms. No one likes a wet blanket and now he's experiencing me not at my best.

For the past 6 months or so I seem to be having a very bad time neurologically and I'm not getting everything done around the house that I'd like to. He's noticed and doesn't understand. So I try harder, sleep less and basically run myself down trying to keep up and please him. I've basically come to a decision that I'm going to only do what I can and then I'm going to rest. No housework is worth a bleed, or worse, in my opinion.

Sorry for the rant, thanks for listening.

Permalink Reply by Marcia Frost on August 13, 2009 at 10:17am

What's the risk of 2nd opinions? other than to your wallet.

If you've had the basic tests, take the results with you [get a CD copy of the scans, MRIs, etc.] and see if a different set of eyes gives you different advice.

Just be wary of the snake-oil peddlars, those who will operate w/out doing any appropriate testing. Go on line and find out who does work w/ AVMS and see them. Ask for referrals -- this list is a good place to start.

Hopefully your insurance will cover 2nd and even 3rd opinions. As I wrote back in 2007/08, I was given the names of top neurosurgeons by a neurologist at Geo Washing Univ medical center, and sent them off my functional MRI. I heard back from all but one within days (the last took a week), and each had looked at them and gave me their advice (basically all agreed, to operate would be too risky). They didn't charge, and I felt much more confident when I decided to go ahead w/ gamma knife at U Pitt.

Marcia

stacey said:

I agree with you. I have told my husband that I would like to get a few more opinions on my "inoperable monster in my brain". He feels it is just a big risk. However, he doesn't live with it inside HIS head every single minute of his life. I suppose I appear normal to everyone because I am not disabled from my AVM as of today.

Permalink Reply by Amanda J on August 15, 2009 at 6:34am

Hi Lianne,
I wa diagnosed 12 years ago, I have been blessed with these 12 years... my daughters were only
13 and 11 then. I have watched them grow and muture into independant young women. also my best friends. My youngest gets married in two months. I could have died (I actually died 3 times and was brought back. I know it sounds silly to say but my thoughts are "I got rejected 3 times, now I'm staying.......) I look at my last 12 years and my future as a bonus. I try to be the best I can.
I am lucky to be able to work part time with some lovelly ladies who know my problems, memory etc etc etc but they are lovelly an help me when I need it. BUT I have times when I can feel my AVM
pulsing in my head. I have written good bye letters to my daughters, parents and best friends, saying "Sorry, if I didn't get to say goodby" Every day is a bonus.
I will admit that I had another small contained bleed earlier this year, since then I have noticed more
speech and memory problems.
My main concern is, every time I have a small bleed---- it kills my good functioning brain.
But never the less - we continue.
My daughters say I have 9 lives. When I was 34 I had a Melanoma cut out. 37 Cervical cancer. 41
Brain bleed and AVM discovered.
I hate that I am not the person (personality) that I used to be. I hate that I forget things....... but I am still here.
I hope that you are well, take care,
Amanda J

Lianne said:

I don't handle it well at all, I move in and out of denial that my AVM is there at all, I go thru bouts of shear panic, and the fear of a bleed is on my mind 24/7 then drop back in to denial and pretend it isn't there, then repeat. I go from being totally involved in AVM and getting all the info & support I can to feeling completely totally overwhelmed. for the first few months I could not be left alone and almost lost my then boyfriend (now husband) because he couldn't even go to the grocery store without me panicking and starting a fight with him... even now I hate being alone and constantly worry when I am alone with my 3 year old son that something happens to me and he is left there by his little self.

I am 7 years into diagnosis and most of the time I don't feel I am any further ahead than I was the day I found out. In the movie Tuck Everlasting they father says "Do not fear death, rather the life unlived, you don't have to live forever, you just have to live" it is a statement that gets me and is where I long to be, living my life for the moment, enjoy every gift I have been given, I am not there yet but I will be someday...

Permalink Reply by Amanda J on August 15, 2009 at 7:24am

Dear Liane,
I know how you feel, its frightening, especially when your child is so young. I was lucky in the fact that
my children were older, for 3 months after my initial bleed, they looked after me, when they were at school it was my parents but when they came home, it was them. In a way I robbed them of a lot, they had to grow up fast... to look after me. But 12 years on ... I will say now, that it didn't hurt them. Actually, they are very caring, giving adults (Thank god). But, I can understand your worry of being alone, especially when your child is only 3. I can't advise you anything, I can only agree with the saying you quoted .. and hope and pray for you and yours
Take care
Amanda J

Amanda J said:

Hi Lianne,
I wa diagnosed 12 years ago, I have been blessed with these 12 years... my daughters were only
13 and 11 then. I have watched them grow and muture into independant young women. also my best friends. My youngest gets married in two months. I could have died (I actually died 3 times and was brought back. I know it sounds silly to say but my thoughts are "I got rejected 3 times, now I'm staying.......) I look at my last 12 years and my future as a bonus. I try to be the best I can.
I am lucky to be able to work part time with some lovelly ladies who know my problems, memory etc etc etc but they are lovelly an help me when I need it. BUT I have times when I can feel my AVM
pulsing in my head. I have written good bye letters to my daughters, parents and best friends, saying "Sorry, if I didn't get to say goodby" Every day is a bonus.
I will admit that I had another small contained bleed earlier this year, since then I have noticed more
speech and memory problems.
My main concern is, every time I have a small bleed---- it kills my good functioning brain.
But never the less - we continue.
My daughters say I have 9 lives. When I was 34 I had a Melanoma cut out. 37 Cervical cancer. 41
Brain bleed and AVM discovered.
I hate that I am not the person (personality) that I used to be. I hate that I forget things....... but I am still here.
I hope that you are well, take care,
Amanda J

Lianne said:

I don't handle it well at all, I move in and out of denial that my AVM is there at all, I go thru bouts of shear panic, and the fear of a bleed is on my mind 24/7 then drop back in to denial and pretend it isn't there, then repeat. I go from being totally involved in AVM and getting all the info & support I can to feeling completely totally overwhelmed. for the first few months I could not be left alone and almost lost my then boyfriend (now husband) because he couldn't even go to the grocery store without me panicking and starting a fight with him... even now I hate being alone and constantly worry when I am alone with my 3 year old son that something happens to me and he is left there by his little self.

I am 7 years into diagnosis and most of the time I don't feel I am any further ahead than I was the day I found out. In the movie Tuck Everlasting they father says "Do not fear death, rather the life unlived, you don't have to live forever, you just have to live" it is a statement that gets me and is where I long to be, living my life for the moment, enjoy every gift I have been given, I am not there yet but I will be someday...

Permalink Reply by Marcia Frost on August 15, 2009 at 11:01am

Amanda,

You have my respect and admiration. I hope you continue to keep beating all the odds and enjoy your children, grandchildren and great grand-children some day.

I'm curious. What are your symptoms when you have a "slight" bleed? I know about the blinding headache of a bleed, and the slurring words and unsteady gait (which would be the case w/ any stroke), but ahave you had other symptoms?

As I wrote earlier, I live alone, and I worry both that I won't know what might be happening to me nor how to get help. Any advice?

Marcia

Permalink Reply by Kim P. on August 15, 2009 at 1:59pm

Amanda,

I love what you wrote... "I got rejected 3 times, now I'm staying.......)". Awesome, just awesome! Thanks for the inspiration.

Kim

Permalink Reply by Amanda J on August 19, 2009 at 11:03pm

Hi Marcia, The only other symptoms I had were - I know this sounds silly but my hair actually hurt, my neck was stiff and sore and I couldn't stand light, a bad migrain multiplied by 20. It came from no where, just struck me at work, I thought it was the beginnings of a migrain, rang my daughter to come and get me from work, by the time we got home I knew I should have gone straight to hospital. Not nice but thank goodness, a small one.
Take care
Amanda J

Marcia Frost said:

Amanda,

You have my respect and admiration. I hope you continue to keep beating all the odds and enjoy your children, grandchildren and great grand-children some day.

I'm curious. What are your symptoms when you have a "slight" bleed? I know about the blinding headache of a bleed, and the slurring words and unsteady gait (which would be the case w/ any stroke), but ahave you had other symptoms?

As I wrote earlier, I live alone, and I worry both that I won't know what might be happening to me nor how to get help. Any advice?

Marcia

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