So frustrated at attitudes :(

General
1

I know I can add this discuss as I am sure so many of us experience what I am about to discuss as I need to vent. I am at a point wherein I feel as if I am so tired of people not totally understanding what we are going through.... I do my best to be psitive each and every day and I will always be grateful for the day; I an not sitting around feeling sorry for myself. Actually was told by my dr. nothing more could be done but am going for another embo....as I continued to seek treatment.. I went back to work full time and its challegning but I push and push but why do people seem to treat us differently..... we need support not pity.... we didn't ask to become sick and when I feel the strength from each of us on this journey of AVMs I know I can through people stupid comments, pity. I know my life will never be normal again whateer that means nor do I want it as I found out who my true friends are and my priorities are so much more prioritzed! Is anyone else going through it.... I could scream at times...I feel as if some people are avoiding me or dn't want to call as " you might not feel well"..... I was up all night as I had a situation with a group of friends and was so incredibly hurt cried myself to sleep. I try to be positive and I know this has been a blessing but again, do people think we asked to be on this journey... I go back to "if you don't have anything nice to say....don't say it

thanks for listening...such a relief to go to a place where I can speak my mind and know we all get it.

Lov eyou all,
Mare

2

UGH I know exactly what you mean. The worst part of it is that the person who gives me the hardest time about ‘my brain thing’ is my mother. I am not sure but I assume I talk about it too much or whatever, but when she refers to it as my brain thing I get very upset. I also had a few friends who vowed to be there for me and now I barely hear from them anymore. I don’t want pity I just want a shoulder to cry on now and then. People don’t don’t understand unless they have to face the devil themselves. And I would never want anyone else to go through this and that is why this site is such an important part of my daily life because here there are people who understand and will listen to me and comfort my spirit. Even if I have never been face to face with anyone here I still feel loved and hope that everyone can feel the love I send out to each and everyone. We are all here to find and give support and for all of this I am grateful!

3

I think if you have a couple of people or maybe even just one, who understands what you are going thru then that is great. It is just too huge for most people to even deal with. I had so many moments of anger at people who just didn’t “get it” but then I realized that I had to really protect myself from people like that because any kind of negative energy was just too painful.
So now I don’t share what is going on with very many people.
I feel so badly for those of you who are dealing with this personally without a great support system. I can’t imagine how difficult and scary that is. Dealing with it for my son, is different. I CAN stand up for him much better than I could ever stand up for myself.
Try to stay strong ladies and be so proud of yourselves. Maybe someday we will all meet each other and you’ll be able to look in the eyes of other people who really understand. :slight_smile:

4

Yes Jamie; feel the same way… again, I just want to be treated pre avm…havent changed…I am always here for everyone…its a wonderful saftey net for my soul!

Jamie Pantelis said:

UGH I know exactly what you mean. The worst part of it is that the person who gives me the hardest time about ‘my brain thing’ is my mother. I am not sure but I assume I talk about it too much or whatever, but when she refers to it as my brain thing I get very upset. I also had a few friends who vowed to be there for me and now I barely hear from them anymore. I don’t want pity I just want a shoulder to cry on now and then. People don’t don’t understand unless they have to face the devil themselves. And I would never want anyone else to go through this and that is why this site is such an important part of my daily life because here there are people who understand and will listen to me and comfort my spirit. Even if I have never been face to face with anyone here I still feel loved and hope that everyone can feel the love I send out to each and everyone. We are all here to find and give support and for all of this I am grateful!

5

Yes I ageee and I don’t get mad…doges get mad…just disappointed… I am a nurse and empahty is I guess part of who I am and frankly my biggest down fall is I make excuses for people and get hurt in the end… hanks for listening and sameday we will all meet xoo Mare

Joy said:

I think if you have a couple of people or maybe even just one, who understands what you are going thru then that is great. It is just too huge for most people to even deal with. I had so many moments of anger at people who just didn’t “get it” but then I realized that I had to really protect myself from people like that because any kind of negative energy was just too painful.
So now I don’t share what is going on with very many people.
I feel so badly for those of you who are dealing with this personally without a great support system. I can’t imagine how difficult and scary that is. Dealing with it for my son, is different. I CAN stand up for him much better than I could ever stand up for myself.
Try to stay strong ladies and be so proud of yourselves. Maybe someday we will all meet each other and you’ll be able to look in the eyes of other people who really understand. :slight_smile:

6

Hello Mare, I’m s sorry that you are having such a tough time. I have finally realized that people in general ahve absolutely no idea what its like to miss 3 months of my life, then wake up not knowing how to take, or to know what has happened to me. Unless they go through something like this themselves, how can they understand? It has been 12 mths since surgery and there still is so much I don’t remember but there is still so much hope in me. I also get angry and so VERY frustratied when I can’t remember how to cook food that I did for years, but me rehab councellor is helping me to firstly, accept whats in my head, then try my best to go and do something else to get rid of the negetive/any/unfrustration. Fortunately, I can wald again, and that helps. I DO understand how you fell, and I’m so greatful for this network and they are the only people who understand my life. I hope and pray that you will get more peace as time goes by. Its very hard to deal with, but it does honestly get better. Take care of yourself and have a chat to me anytime you need or want to. I’m praying for you, hugs, Lesley.

7

We love you, too, Mare.

Take care,

Debbie

8

Mare,…

I hear ya,…

Many friends (or should I say acquaintances) that Nellie and I had, (“had” being the key word, since Nellie was taken from me, auto accident 8-08-2009) no longer call or visit. They say they didn’t/don’t want to bother me and “MY” condition. Well,…“screw them and the horse they rode in on”. Evidently they were never “friends” in the first place.
On the other hand,…I have a few close friends that I can count on one hand. They show concern, empathy, offer help, and are always there if I need them.
Then,…there are the others that know about my AVM and related conditions, (the ones with mis-understood attitude issues) they try to “baby”, “pity”, me, and are always asking mundane questions,…(ie),…do you really need to be doing that?,…do you need help lifting that?,…or,…hey let me do that for you,…and then,…last but not least,…there are the totally ignorant individual co-workers,…that believe my condition is “contagious”,…and they shun/avoid me like I had the “black death”,…(these are the ones I love to tease),…(like,…going into pretend convulsions),…(rolling my eyes to the back of my head),…and other non existant pretend AVM conditions.
Ok,…yeah,…I have a weird sense of humor.
My family supports me and are totally aware of my AVM and related conditions. They worry and show genuine concern for me, but realise that this is,…MY,…choice, and I will be responsible for my actions or lack of.
I want to,…(at this time),…sincerely thank everyone, on this wonderful site, that has shared with me, and has become my on-line AVM survivor friends. After all,…we all here, have a bond that no one can ever take from us,…We are AVM Survivors. (P.S.,…I’d love to meet each and everyone of ya’ll one day)
Basically,…I keep to myself,…as I mentioned earlier,…I am a quiet/shy/private man. Only those that need to know,…know about my AVM. That way I can be myself, and live my life the way I choose, without having to deal with people with mis-understood, pity/petty, attitudes.

9

Hi! don’t get frustrated, what ever you are feeling is normal.Just be patient after some time they will come to accept it.If you feel something about them just tell them upfront or have someone close to you to relay what you feel.I don’t think they mean to hurt you.They just care as everyone of us. I took care of my husband the whole time he went through his AVM.I became his spoke person and just assure him I just want the best for him.Try to be able to trust somebody and tell what you feel. You will be fine Take care

Cristy

10

Hi, William love your reply it was well worded and well said you need to repost that for all very good advice to give, I might try some of that.

William said:

Mare,…

I hear ya,…

Many friends (or should I say acquaintances) that Nellie and I had, (“had” being the key word, since Nellie was taken from me, auto accident 8-08-2009) no longer call or visit. They say they didn’t/don’t want to bother me and “MY” condition. Well,…“screw them and the horse they rode in on”. Evidently they were never “friends” in the first place.
On the other hand,…I have a few close friends that I can count on one hand. They show concern, empathy, offer help, and are always there if I need them.
Then,…there are the others that know about my AVM and related conditions, (the ones with mis-understood attitude issues) they try to “baby”, “pity”, me, and are always asking mundane questions,…(ie),…do you really need to be doing that?,…do you need help lifting that?,…or,…hey let me do that for you,…and then,…last but not least,…there are the totally ignorant individual co-workers,…that believe my condition is “contagious”,…and they shun/avoid me like I had the “black death”,…(these are the ones I love to tease),…(like,…going into pretend convulsions),…(rolling my eyes to the back of my head),…and other non existant pretend AVM conditions.
Ok,…yeah,…I have a weird sense of humor.
My family supports me and are totally aware of my AVM and related conditions. They worry and show genuine concern for me, but realise that this is,…MY,…choice, and I will be responsible for my actions or lack of.
I want to,…(at this time),…sincerely thank everyone, on this wonderful site, that has shared with me, and has become my on-line AVM survivor friends. After all,…we all here, have a bond that no one can ever take from us,…We are AVM Survivors. (P.S.,…I’d love to meet each and everyone of ya’ll one day)
Basically,…I keep to myself,…as I mentioned earlier,…I am a quiet/shy/private man. Only those that need to know,…know about my AVM. That way I can be myself, and live my life the way I choose, without having to deal with people with mis-understood, pity/petty, attitudes.

11

Hi Mare, That’s the best thing about this site we can say what we really feel and somebody has had to deal with the same thing. I love coming reading I get so much strength from everyone, Love, support and if nobody else will give it to me I can come here and get it. Much love

12

Im kinda lucky in that my mom had an anurism when i was 19.Now iv’e been on both sides.She is my best support.My wife, children and friends try there best but sometimes just don’t understand

13

I TOTALLY understand!!! No one (other than someone who’s has gone through or is currently going through an AVM ordeal) could ever truly understand what one goes through! I am greatly appalled at ‘judgemental people’ who falsely make assumptions about people, especially when that judgemental person has absolutely NO clue what is going on! This ‘journey’ truly does ‘open our eyes’ and we can see the ‘truth(s)’ that we may have not wanted to really acknowledge before our ‘injury’ occured. Pity is not what AVM people are looking for; rather, compassion and helpful consideration is always good. I just want to be treated the same as pre-AVM. Although I do have some physical ‘limitations’, I have ALWAYS remained ‘me’. I truly now know what it means and feels like ‘to be trapped inside your own body’. The more I heal, the more ‘annoyed’ (to put it nicely) I get! The inconsiderateness of others appalls me beyond belief! Those ‘friends’ (or rather ‘acquaintences’ as William absolutely & correctly stated) who make ‘excuses’ or just aren’t there for you will eventually show back up / resurface in your life AFTER you’ve recovered with ‘excuses’ as to how ‘hard’ it was for THEM and will want to be ‘friends’ again. They are ‘black souls’… so please (for your own self) DON’T fall for it. Our ‘journey’ has allowed us to see these ‘truths’ for a REASON. These ‘friends’ or relatives are ONLY out for THEMSELVES! These type of people NEED to be OUT of our lives, even though it hurts us emotionally to say goodbye!!!
For everyone out there struggling with this: acknowledge the ‘truth’ being shown to you and find the strength within yourself to preserve, as you have survived this AVM ordeal for a reason. (I strongly believe - and have had my belief proven to me - that things happen for a reason. Sometimes, we don’t get to understand ‘why’ until much later on, but we eventually will see ‘why’.) Try to stay positive (I know it’s hard) and be determined to recover and it will happen. Our emotional ‘hurt’ and how we deal with it / handle it can help others overcome the same emotional pain. Love yourself (for all the goodness) and know that you are ‘enough’! We’ve endured so much already and survived, so we can survive the frustration! Believe in yourself… remember, if you don’t (believe in yourself), no one else will either!
Take care everyone!!! May God bless you, be with you, and speed your full recovery!!!

Mare said:

Yes Jamie; feel the same way… again, I just want to be treated pre avm…havent changed…I am always here for everyone…its a wonderful saftey net for my soul!

Jamie Pantelis said:
UGH I know exactly what you mean. The worst part of it is that the person who gives me the hardest time about ‘my brain thing’ is my mother. I am not sure but I assume I talk about it too much or whatever, but when she refers to it as my brain thing I get very upset. I also had a few friends who vowed to be there for me and now I barely hear from them anymore. I don’t want pity I just want a shoulder to cry on now and then. People don’t don’t understand unless they have to face the devil themselves. And I would never want anyone else to go through this and that is why this site is such an important part of my daily life because here there are people who understand and will listen to me and comfort my spirit. Even if I have never been face to face with anyone here I still feel loved and hope that everyone can feel the love I send out to each and everyone. We are all here to find and give support and for all of this I am grateful!

14

I know exactly what you are going through but now I know my true friends and they are of great help to me. I am in hospice b/c my heart and body are slowly not working and all VMs are getting bigger. I think what helps me to not have “pity parties” as you have said is to try to act as normal as possible. I also don’t and won’t let this condition rule me or make my life different then I want it. I try to make our conditions with VMs known and that keeps me occupied too! Hold on to what is true and let the rest go out with the garbage!! Many prayers to those who are uneducated and negative.I hope for you things start looking up even if it is in small ways!~Jessie

15

thanks for your suport! I love ya! oxoxox Mare

Ninibeth Ramirez said:

Hi Mare, I do understand what you are saying. In my case before the craniotomy I couldn’t speak well neither understanding things. After craniotomy and going back to normal I didn’t have people to share my experience. No one wanted to now. For my family it hurts the topic and nobody wanted to talk about it. the fear that I felt when I was alone in intensive care, What were my feelings when I went out of coma by being alone without understanding what was happening to me? what were my feelings?. I understand that they were sad and suffering; it was my fault. They were suffering because had to deal not having me at her side and look so bad with no hope of return to normal if I survived. I understand all of that but it has being 10 years and still they don’t know what I really went through inside in my soul. They love me I now, but they don’t understand.

16

I am so sorry for the pain you are going through and iwll keep you in my daily thought and prayer…the beauty of this site…he hurt sometims by those we love well is so disturbing to me…cuts like a knife in my heart… I thank you for your support and understanding. God bles syou on your journey…I am ALWAYS here for you both…love you. Mare yes I so have learned what is truly important in my life…

Jessie and Jason Fortman said:

I know exactly what you are going through but now I know my true friends and they are of great help to me. I am in hospice b/c my heart and body are slowly not working and all VMs are getting bigger. I think what helps me to not have “pity parties” as you have said is to try to act as normal as possible. I also don’t and won’t let this condition rule me or make my life different then I want it. I try to make our conditions with VMs known and that keeps me occupied too! Hold on to what is true and let the rest go out with the garbage!! Many prayers to those who are uneducated and negative.I hope for you things start looking up even if it is in small ways!~Jessie

17

Cindy: You so so get it and I feel just the same…I could have written wht you said…its just you don’t expect best friends to let you down when you are so there for them…I think sometims too much with my heart and not with my head…but I am learning. love you. Mare

Cindy Phillips said:

I TOTALLY understand!!! No one (other than someone who’s has gone through or is currently going through an AVM ordeal) could ever truly understand what one goes through! I am greatly appalled at ‘judgemental people’ who falsely make assumptions about people, especially when that judgemental person has absolutely NO clue what is going on! This ‘journey’ truly does ‘open our eyes’ and we can see the ‘truth(s)’ that we may have not wanted to really acknowledge before our ‘injury’ occured. Pity is not what AVM people are looking for; rather, compassion and helpful consideration is always good. I just want to be treated the same as pre-AVM. Although I do have some physical ‘limitations’, I have ALWAYS remained ‘me’. I truly now know what it means and feels like ‘to be trapped inside your own body’. The more I heal, the more ‘annoyed’ (to put it nicely) I get! The inconsiderateness of others appalls me beyond belief! Those ‘friends’ (or rather ‘acquaintences’ as William absolutely & correctly stated) who make ‘excuses’ or just aren’t there for you will eventually show back up / resurface in your life AFTER you’ve recovered with ‘excuses’ as to how ‘hard’ it was for THEM and will want to be ‘friends’ again. They are ‘black souls’… so please (for your own self) DON’T fall for it. Our ‘journey’ has allowed us to see these ‘truths’ for a REASON. These ‘friends’ or relatives are ONLY out for THEMSELVES! These type of people NEED to be OUT of our lives, even though it hurts us emotionally to say goodbye!!!
For everyone out there struggling with this: acknowledge the ‘truth’ being shown to you and find the strength within yourself to preserve, as you have survived this AVM ordeal for a reason. (I strongly believe - and have had my belief proven to me - that things happen for a reason. Sometimes, we don’t get to understand ‘why’ until much later on, but we eventually will see ‘why’.) Try to stay positive (I know it’s hard) and be determined to recover and it will happen. Our emotional ‘hurt’ and how we deal with it / handle it can help others overcome the same emotional pain. Love yourself (for all the goodness) and know that you are ‘enough’! We’ve endured so much already and survived, so we can survive the frustration! Believe in yourself… remember, if you don’t (believe in yourself), no one else will either!
Take care everyone!!! May God bless you, be with you, and speed your full recovery!!!

Mare said:
Yes Jamie; feel the same way… again, I just want to be treated pre avm…havent changed…I am always here for everyone…its a wonderful saftey net for my soul!

Jamie Pantelis said:
UGH I know exactly what you mean. The worst part of it is that the person who gives me the hardest time about ‘my brain thing’ is my mother. I am not sure but I assume I talk about it too much or whatever, but when she refers to it as my brain thing I get very upset. I also had a few friends who vowed to be there for me and now I barely hear from them anymore. I don’t want pity I just want a shoulder to cry on now and then. People don’t don’t understand unless they have to face the devil themselves. And I would never want anyone else to go through this and that is why this site is such an important part of my daily life because here there are people who understand and will listen to me and comfort my spirit. Even if I have never been face to face with anyone here I still feel loved and hope that everyone can feel the love I send out to each and everyone. We are all here to find and give support and for all of this I am grateful!

18

Mare,
I understand what you mean about best friends (even “good” friends, family members, church going / so-called religous people, etc.) not being there for you when you’ve been there for them. Yes, it hurts… actually it cuts DEEP (deep down into the ‘core’ of a person) and hurts like hell!
I, too, often act out of my heart instead of my head. I’ve debated ‘what course of action’ would be best ‘taken’ with these types of people and, in all honesty, I have yet to come up with a definitive answer. I know that ‘vengeance’ is not mine (rather it is His) and I do not wish to ‘punish’ anyone. I do know that I need to NOT let them back into my life; however, at the same time, I’d feel ‘guilty’ if I ‘turned my back’ on them when they are in ‘need’. I have yet to find a solace resolution as to HOW I will actually handle ‘them’; however, I do know this will come back to ‘bite them in the butt’.
Stay strong (by being focused on your recovery achievements) and be determined to ‘beat’ this and all will eventualy work out for the best for YOU! (I know it’s hard to focus on your recovery when one has to deal with this ‘outside’ crap of not knowing who one can ‘depend on’! The ‘not knowing’ IF you can depend on someone or not is ABSOLUTELY horrible (to say the least); however, it forces you to rely upon yourself and do things you didn’t think you could / can… and that will provide you with strength!)
Take care!
Mare said:

Cindy: You so so get it and I feel just the same…I could have written wht you said…its just you don’t expect best friends to let you down when you are so there for them…I think sometims too much with my heart and not with my head…but I am learning. love you. Mare

Cindy Phillips said:
I TOTALLY understand!!! No one (other than someone who’s has gone through or is currently going through an AVM ordeal) could ever truly understand what one goes through! I am greatly appalled at ‘judgemental people’ who falsely make assumptions about people, especially when that judgemental person has absolutely NO clue what is going on! This ‘journey’ truly does ‘open our eyes’ and we can see the ‘truth(s)’ that we may have not wanted to really acknowledge before our ‘injury’ occured. Pity is not what AVM people are looking for; rather, compassion and helpful consideration is always good. I just want to be treated the same as pre-AVM. Although I do have some physical ‘limitations’, I have ALWAYS remained ‘me’. I truly now know what it means and feels like ‘to be trapped inside your own body’. The more I heal, the more ‘annoyed’ (to put it nicely) I get! The inconsiderateness of others appalls me beyond belief! Those ‘friends’ (or rather ‘acquaintences’ as William absolutely & correctly stated) who make ‘excuses’ or just aren’t there for you will eventually show back up / resurface in your life AFTER you’ve recovered with ‘excuses’ as to how ‘hard’ it was for THEM and will want to be ‘friends’ again. They are ‘black souls’… so please (for your own self) DON’T fall for it. Our ‘journey’ has allowed us to see these ‘truths’ for a REASON. These ‘friends’ or relatives are ONLY out for THEMSELVES! These type of people NEED to be OUT of our lives, even though it hurts us emotionally to say goodbye!!!
For everyone out there struggling with this: acknowledge the ‘truth’ being shown to you and find the strength within yourself to preserve, as you have survived this AVM ordeal for a reason. (I strongly believe - and have had my belief proven to me - that things happen for a reason. Sometimes, we don’t get to understand ‘why’ until much later on, but we eventually will see ‘why’.) Try to stay positive (I know it’s hard) and be determined to recover and it will happen. Our emotional ‘hurt’ and how we deal with it / handle it can help others overcome the same emotional pain. Love yourself (for all the goodness) and know that you are ‘enough’! We’ve endured so much already and survived, so we can survive the frustration! Believe in yourself… remember, if you don’t (believe in yourself), no one else will either!
Take care everyone!!! May God bless you, be with you, and speed your full recovery!!!

Mare said:
Yes Jamie; feel the same way… again, I just want to be treated pre avm…havent changed…I am always here for everyone…its a wonderful saftey net for my soul!

Jamie Pantelis said:
UGH I know exactly what you mean. The worst part of it is that the person who gives me the hardest time about ‘my brain thing’ is my mother. I am not sure but I assume I talk about it too much or whatever, but when she refers to it as my brain thing I get very upset. I also had a few friends who vowed to be there for me and now I barely hear from them anymore. I don’t want pity I just want a shoulder to cry on now and then. People don’t don’t understand unless they have to face the devil themselves. And I would never want anyone else to go through this and that is why this site is such an important part of my daily life because here there are people who understand and will listen to me and comfort my spirit. Even if I have never been face to face with anyone here I still feel loved and hope that everyone can feel the love I send out to each and everyone. We are all here to find and give support and for all of this I am grateful!

19

I can so relate to everyone. As a child when I had my surgery I was pretty much shunned by my so called friends and now as an adult, going through the surgeries and everything with my children I am again feeling alone. Initially I lost my best friend to some very insensitive and downright mean comments about my daughters condition. Lately I lost another so called friend. All the while I am going through the uncertainty of radiation treatments and the private misery of wondering if my children will not wake up one morning. Not a single person in my life has any grasp of what that is like. I never talk about it because I don’t want a pity party but to see the shallow unfaithfulness in so many people that I believed were friends (and Christians) is disheartening. I am so damaged by it that I have isolated myself which I know is even worse.

20

HI, I CAN UNDERSTAND HOW U FEEL, WHAT I HAVE DONE IS I DONT EVEN TELL EVERYONE WHAT IS WRONG BECAUSE I KNOW THEY WANT UNDERSTAND, JUST A FEW I HAVE SHARED WITH, I HAVE TAKEN ALL THOSE THAT MY NOT UNDERSTAND OUT OF MY LIFE, DONT HAVE TIME FOR THE STRESS OR TRYING TO EXPLAIN THAT I LOOK GOOD BUT EVERYTHING THAT IS GOING IN MY HEAD IS NOT GOOD. THE ONES THAT REALLY LEFT WERE A FEW MEN FRIENDS THAT I HAD BUT I KNEW THEY WOULD, WHEN I COULDNT TALK ON THE PHONE OR GO OUT OR HAVE COMPANY, SO IT WAS THEN I KNEW THEY DIDNT REALLY MEAN ME ANY GOOD, SO THAT WAS A BLESSING TO GET RID OF THEM. I HAVE A LOT OF SUPPORT FROM THE CHRUCH’S MY, MY SON’S AND MY SISTER IN LAW SO I HAVE A LOT OF PEOPLE PRAYING FOR ME AS WELL AS ALL THESE FROM THE SITE. I HAVE HAD A CHANCE TO WORK ON MY REALATIONSHIP WITH GOD AS WELL AND HAS BROUGHT ME SO MUCH PEACE WITH ALL OF THIS. I KNOW SOME MIGHT NOT LIKE TO HEAR THIS BUT I KNOW IF NO ONE ELSE WILL HEAR U HE WILL GIVE YOU PEACE AND REST DURING TIMES WHEN U NEED THEM THE MOST. I REALLY DONT KNOW THE FINAL OUTCOME OF ALL OF THIS BUT WHATEVER IT IS WITH GOD ON MY SIDE IT CANT GET ANY WORST. I HAVENT GONE BACK TO WORK MY JOB IS TOO STRESSFUL AND I DIDNT WANT TO TAKE A CHANCE ON ANOTHER BLEED. FINISH MY FIRST EMBO DID WELL, 2DAY A LITTLE PAIN BUT CALLED DOC AND HE CALLED ME IN SOME MEDS. ONE THING THAT SOME OF US DONT DO IS DO THE RESEARCH AND KNOW WHAT TO EXPECT FROM OUR AVM, BUT I DID SO WHAT EVER COMES I WILL CONTINUE TO PRAISE GOD AND LOVE THE LIFE I HAVE GOD BLESS TAKE CARE

Christine said:

I can so relate to everyone. As a child when I had my surgery I was pretty much shunned by my so called friends and now as an adult, going through the surgeries and everything with my children I am again feeling alone. Initially I lost my best friend to some very insensitive and downright mean comments about my daughters condition. Lately I lost another so called friend. All the while I am going through the uncertainty of radiation treatments and the private misery of wondering if my children will not wake up one morning. Not a single person in my life has any grasp of what that is like. I never talk about it because I don’t want a pity party but to see the shallow unfaithfulness in so many people that I believed were friends (and Christians) is disheartening. I am so damaged by it that I have isolated myself which I know is even worse.