cymbol58 said:

Vendetta1 said:

Hey Erin, have you read the book Life Disrupted by Laurie Edwards? I really think you should if you haven't.

Nope.

Will it help with my desire to murder the world?

Vendetta1 said:

cymbol58 said:

ive been recover from be ill , after 3 year lungcancer i did chemo and radiotherapy

docter saying me there was no hope to recover

but iam now for 1,5 year cancerfree, just need to get control with scan every 3 month

greets cymbol58;-)

[Edited 6/2/11 6:04am]

It makes me happy to read this. I have a few chronic illnesses but I try to stay positive. The worse thing is dealing with doctors who just don't care.

Holla. I want to punch every one of those cynical, burnt-out, egotistical motherfuckers.

PunkMistress said:

Vendetta1 said:

PunkMistress said:

Nope.

Will it help with my desire to murder the world?

Yes. The young lady that wrote the book reminds me a lot of you and what you've gone through. I think there are some very helpful suggestions for dealing with doctors, your illness and life in general in the book.

From Amazon: "Soberingly, she imparts that more than 75 percent of marriages in which chronic illness figures end in divorce."
"Still, there’s that other 25 percent."

Looks like something I'd like to read.

“For those young people suffering from chronic illness, Life Disrupted offers strategy, advice, and hope. For those of us lucky enough to grow up without illness, it tells us how to be respectfully helpful to friends, family, and colleagues in this situation. Superb and engaging writing.”—Paul F. Levy, president and CEO of Beth Israel Deaconess Medical Center, Boston and founder of www.runningahospital.blogspot.com

My daughter was born at Beth Israel!

oh no, I hate to read!

thank, Ivy!

God bless!!

JerseyKRS said:

Vendetta1 said:

JerseyKRS said:

oh no, I hate to read!

thank, Ivy!

It's a really easy read Chris. The chapters are like five pages long. And Erin even though she mentions the majority of chronic illness marriages end in divorce she is very joyous in talking about hers and how her husband married her despite her illness.

I think I was a little more rosy in my description of EDS before Christopher and I got married. I mean, my symptoms were waaay more mild back then, but I don't think I appropriately prepared him for the possibility of a life like this. That was unfair of me, I think, just because I myself didn't want to face it - refused to believe it, in fact. He's still the bomb, though.

Thanks for that description; it makes me want to read the book.

Reading everyone's stories is a real teaching You're all admirable Mine is pointless compared to yours.

I started to suffer vasovagal attacks when I was a teen but wasn't diagnosed as such until 2008. It all started when I was in 9th grade. My blood pressure was very low and I used to faint constantly but was considered too young by doctors to take antihypotensive drugs or beta blockers. It made me skip classes an innumerable ammount of times and I had to repeat 9th grade. Then I've been "left in peace" during a few years when it came back in 2008.

It was quite embarrassing when it happened in the tube while my work shift. You're grabbed by first-aid officers and thrown into an ambulance taking you to a glutted hospital (emergency ward) where you have to wait like 7 hours on a stretcher before knowing what you're doing here. Then it's always the same routine (echocardiogram, blood test, pressure test...) and they still can't find the cause :summonsDRHouse:. The only prescription they give me each time is REST.

It's even more embarrassing for my relatives when they aren't used to it considering the fact it looks scary when it happens. They feel powerless and are tempted to call an abulance (which isn't the best thing to do). I even had to sign a discharge once to make sure I could get back home ASAP.

Anyone else here who had to repeat a grade due to health issues?

[Edited 6/5/11 5:17am]

MarySharon said:

Reading everyone's stories is a real teaching You're all admirable Mine is pointless compared to yours.

I started to suffer vasovagal attacks when I was a teen but wasn't diagnosed as such until 2008. It all started when I was in 9th grade. My blood pressure was very low and I used to faint constantly but was considered too young by doctors to take antihypotensive drugs or beta blockers. It made me skip classes an innumerable ammount of times and I had to repeat 9th grade. Then I've been "left in peace" during a few years when it came back in 2008.

It was quite embarrassing when it happened in the tube while my work shift. You're grabbed by first-aid officers and thrown into an ambulance taking you to a glutted hospital (emergency ward) where you have to wait like 7 hours on a stretcher before knowing what you're doing here. Then it's always the same routine (echocardiogram, blood test, pressure test...) and they still can't find the cause :summonsDRHouse:. The only prescription they give me each time is REST.

It's even more embarrassing for my relatives when they aren't used to it considering the fact it looks scary when it happens. They feel powerless and are tempted to call an abulance (which isn't the best thing to do). I even had to sign a discharge once to make sure I could get back home ASAP.

Anyone else here who had to repeat a grade due to health issues?

[Edited 6/5/11 5:17am]

Not a grade but I have had to repeat several courses in college. I was supposed to have graduated last year.

No although I started catching pneumonia since I was about 4. Three times I had to stay in the hospital but the fourth time I was okay at home. The last time they took an x ray of my lungs the doctors asked me if I smoked bc my lungs are so scarred up from the pneumonia. Last year I took a vaccine for pneumonia that I was scared to take but I figured my chances were better than getting it again. I went the whole winter without getting sick I have the sickle cell trait and remember being sick in the hospital for that only once when I was little. My blood was just really low. Had to take loads of iron.

[Edited 6/5/11 7:53am]

cymbol58 said:

ive been recover from be ill , after 3 year lungcancer i did chemo and radiotherapy

docter saying me there was no hope to recover

but iam now for 1,5 year cancerfree, just need to get control with scan every 3 month

greets cymbol58;-)

[Edited 6/2/11 6:04am]

<3

Aside from my disability (offically quadriplegia) I almost died during back surgery (on Intensive care for two or thre weeks and many complications...that was a close one)

Great to read your story. My mom has been diagnosed with breast cancer and was declared terminally ill. Definitely staying positive and trying to support her in every way. It doesn't have to be final and your story (and many others) proves that.

NMuzakNSoul said:

Aside from my disability (offically quadriplegia) I almost died during back surgery (on Intensive care for two or thre weeks and many complications...that was a close one)

Great to read your story. My mom has been diagnosed with breast cancer and was declared terminally ill. Definitely staying positive and trying to support her in every way. It doesn't have to be final and your story (and many others) proves that.

Wish you & your mom well.

NMuzakNSoul said:

Aside from my disability (offically quadriplegia) I almost died during back surgery (on Intensive care for two or thre weeks and many complications...that was a close one)

Great to read your story. My mom has been diagnosed with breast cancer and was declared terminally ill. Definitely staying positive and trying to support her in every way. It doesn't have to be final and your story (and many others) proves that.

Sending u a hug!!!!!As 4 ur mum what is there 2 say??ive seen alot of this in work,ur poor mom eye will say a prayer ok.

davetherave6767 said:

NMuzakNSoul said:

Aside from my disability (offically quadriplegia) I almost died during back surgery (on Intensive care for two or thre weeks and many complications...that was a close one)

Great to read your story. My mom has been diagnosed with breast cancer and was declared terminally ill. Definitely staying positive and trying to support her in every way. It doesn't have to be final and your story (and many others) proves that.

Sending u a hug!!!!!As 4 ur mum what is there 2 say??ive seen alot of this in work,ur poor mom eye will say a prayer ok.

thanks dave i really appreciate it!!!

dJJ said:

NMuzakNSoul said:

Aside from my disability (offically quadriplegia) I almost died during back surgery (on Intensive care for two or thre weeks and many complications...that was a close one)

Great to read your story. My mom has been diagnosed with breast cancer and was declared terminally ill. Definitely staying positive and trying to support her in every way. It doesn't have to be final and your story (and many others) proves that.

Wish you & your mom well.

thank you very much

NMuzakNSoul said:

dJJ said:

Wish you & your mom well.

thank you very much

Hope ur mum not in 2 much pain!!!! morphine & fentanyl patches should hit the spot!!!realy hope theres not 2much pain 4 her 2 endure!!

davetherave6767 said:

NMuzakNSoul said:

thank you very much

Hope ur mum not in 2 much pain!!!! morphine & fentanyl patches should hit the spot!!!realy hope theres not 2much pain 4 her 2 endure!!

right now bro shes going thru the first chemo and shes feeling good shes a really positive person thank ya.

NMuzakNSoul said:

davetherave6767 said:

Hope ur mum not in 2 much pain!!!! morphine & fentanyl patches should hit the spot!!!realy hope theres not 2much pain 4 her 2 endure!!

right now bro shes going thru the first chemo and shes feeling good shes a really positive person thank ya.

What about u??? u ok? u not in pain r u??

davetherave6767 said:

NMuzakNSoul said:

right now bro shes going thru the first chemo and shes feeling good shes a really positive person thank ya.

What about u??? u ok? u not in pain r u??

sometime but i just stay positive alot. got it from my mom and grandma.

NMuzakNSoul said:

davetherave6767 said:

What about u??? u ok? u not in pain r u??

sometime but i just stay positive alot. got it from my mom and grandma.

Theres absolutly no reason 4u2b in any pain ok!!! Eye dont care what anybody says if ur in pain get those pain killers down ur neck ok!!!!!!!!!!!!!!

NMuzakNSoul said:

davetherave6767 said:

NMuzakNSoul said:

sometime but i just stay positive alot. got it from my mom and grandma.

Theres absolutly no reason 4u2b in any pain ok!!! Eye dont care what anybody says if ur in pain get those pain killers down ur neck ok!!!!!!!!!!!!!!

How mobile are you? Can you travel around? Do you have help/company when you need it?

Serious said:

NMuzakNSoul said:

Aside from my disability (offically quadriplegia) I almost died during back surgery (on Intensive care for two or thre weeks and many complications...that was a close one)

Great to read your story. My mom has been diagnosed with breast cancer and was declared terminally ill. Definitely staying positive and trying to support her in every way. It doesn't have to be final and your story (and many others) proves that.

All the very best to your mom !

Thank you very much

davetherave6767 said:

NMuzakNSoul said:

sometime but i just stay positive alot. got it from my mom and grandma.

Theres absolutly no reason 4u2b in any pain ok!!! Eye dont care what anybody says if ur in pain get those pain killers down ur neck ok!!!!!!!!!!!!!!

I only takes those type of meds when I have to (altho more often lately) I also have a muscle relaxer.

dJJ said:

davetherave6767 said:

Theres absolutly no reason 4u2b in any pain ok!!! Eye dont care what anybody says if ur in pain get those pain killers down ur neck ok!!!!!!!!!!!!!!

How mobile are you? Can you travel around? Do you have help/company when you need it?

Not that mobile at all, need help with transfers etc. but I do get care often. And there comes by a person from homecare to assist. despite all that though people who know me dont hear me complain much im always there to help others and stay positive.

NMuzakNSoul said:

Aside from my disability (offically quadriplegia) I almost died during back surgery (on Intensive care for two or thre weeks and many complications...that was a close one)

Great to read your story. My mom has been diagnosed with breast cancer and was declared terminally ill. Definitely staying positive and trying to support her in every way. It doesn't have to be final and your story (and many others) proves that.

I was curious as to what your disability was but was afraid to ask because I'm sure you probably get asked all the time and are probably tired of it.

When I saw your picture on one of the photowhore threads, it was strictly your upper body and you were sitting at your keyboard. I didn't see the wheelchair and I thought you were one of the most beautiful people I had ever seen. I'm talking about that gorgeous face of yours.

When I was looking at your pictures on your facebook page, that's when I saw the wheelchair. There was one of you outside in the wheelchair in front of your parents and felt so sorry for you when I saw it. All I could think of is, it is such a shame that a man so beautiful looking would be confined to a wheelchair. However, as I browsed through more of the pictures and watched some of the videos and saw the extreme closeness you had with your family, then I almost felt jealous because I was never close with my family like that. And as I read some of your posts and saw how positive you always were and that you didn't seem to let it get you down and were happy and enjoying life, then I stopped feeling sorry for you because I saw you were strong and dealing with it. I don't know if I could if I were in your shoes. Well, I eventually would because I'd have to but it would be hard as hell to do.

And as for thinking you were beautiful before seeing any of wheelchair pictures, well, after seeing them, I think you are even more beautiful because not only are your outer looks beautiful, but you're also beautiful on the inside which is what's really important and no disability will ever stop that beauty from shining through.

vainandy said:

NMuzakNSoul said:

Aside from my disability (offically quadriplegia) I almost died during back surgery (on Intensive care for two or thre weeks and many complications...that was a close one)

Great to read your story. My mom has been diagnosed with breast cancer and was declared terminally ill. Definitely staying positive and trying to support her in every way. It doesn't have to be final and your story (and many others) proves that.

I was curious as to what your disability was but was afraid to ask because I'm sure you probably get asked all the time and are probably tired of it.

When I saw your picture on one of the photowhore threads, it was strictly your upper body and you were sitting at your keyboard. I didn't see the wheelchair and I thought you were one of the most beautiful people I had ever seen. I'm talking about that gorgeous face of yours.

When I was looking at your pictures on your facebook page, that's when I saw the wheelchair. There was one of you outside in the wheelchair in front of your parents and felt so sorry for you when I saw it. All I could think of is, it is such a shame that a man so beautiful looking would be confined to a wheelchair. However, as I browsed through more of the pictures and watched some of the videos and saw the extreme closeness you had with your family, then I almost felt jealous because I was never close with my family like that. And as I read some of your posts and saw how positive you always were and that you didn't seem to let it get you down and were happy and enjoying life, then I stopped feeling sorry for you because I saw you were strong and dealing with it. I don't know if I could if I were in your shoes. Well, I eventually would because I'd have to but it would be hard as hell to do.

And as for thinking you were beautiful before seeing any of wheelchair pictures, well, after seeing them, I think you are even more beautiful because not only are your outer looks beautiful, but you're also beautiful on the inside which is what's really important and no disability will ever stop that beauty from shining through.

Andy, this is one of the best posts someone has ever written about me I'm really moved by it thank you very much. I appreciate all of the compliments and every word. I have a great family and although I have no closeness to my dad's side of the family my mom's side is all positive minded like us.

I think one of your biggest qualities as a person is that you're truly staying true to yourself and you don't care what anyone thinks or says about you you just are yourself and I really admire that.

For a little while during puberty I used to be ashamed of myself, but nowadays I am really proud of myself and accept myself and I think thats why people take a liking or feel a connection with me.

Thanks for this post I will put it in my facebook profile.