they say we all have a book inside us so I have decided to try and write one! I have the title sorted out.."Living with M.E.N. - what's your type"Quite catchy huh? For those of you who dont know me, I have an incurable disease (my doctors words...definately not mine) which is known as Multiple Endocrine Neoplasia, I am type 1. So far I think I have been lucky, only had to have my parathyroid glands removed, although "multiple" tumours have been found on and in my pancreas so watching and waiting to see what, if anything happens. My son who has not been lucky has had half of his pancreas removed as a result (and boy do I feel guilty...most folk give their kids a car, I give mine a syndrome!)
Anyway, as its a very rare syndrome, bit like rocking horse poo, I decided that I would try and write an informative, yet slightly tongue in cheek about it. Im posting this here as I think Id like a bit of encouragement...and where else could I get it??
Ill keep you informed X
11 comments:
Paula what a great idea! I'm sorry to hear about what you've gone through but please please don't blame yourself for your son having the same thing. If you'd avoided it by not having him at all he wouldn't even be here and I'm sure I know which he would prefer, I hope that makes senses LOL. These things happen don't they but it really isn't your fault.Good luck with putting it all down on paper, it'll be great!
Eek that should have said sense not senses! LOL.
Paula - my daughter has an endocrine disorder that I have always felt badly about passing along (one of us have to have it for her to get it and it isnt her dad) so I know you feel badly. But, as Louly said, the alternative is not to have him. People have been passing on high blood pressure, diabetes, and many more diseases for ages so just take comfort in having a wonderful son if you can. As for you ~ how does this impact your book writing? Is it being motivated by searching inside for meaning or what is the connection? Why men ? :) maybe you could write a book about your disease too ! That could be very inspirational and certainly not everyone who has it is as creative as you so it could be a gift!!!!
i dont know how to get it to you other than like this. sudsnjewels@gmail.com
Hi Paula, sorry to hear that you and your son have gone through so much and I agree with what Louly said, I bet your son has had far more love and laughter in his life than suffering. What a great idea to write a book about it all, I'm sure this will be a great help for alot of people and your title is fantastic, love it. Good Luck with it all. Donna x
Well, Paula, what a terrific idea. Can I buy the first copy? :) I would love to read it......you go for it, girl.
I agree with the other girls, Paula, you must not blame yourself for your son having the same thing....just enjoy having a caring, wonderful, son, Paula.
Hi Paula... fabby name for your book... go for it!!
I don't know if you are already a member but when I was trying to research and find support for my pheo back in 2006, I found this board. Its great for information and support.
http://pheochromocytomasupportboard.yuku.com/
(Support board for those with Pheochromocytoma and related adrenal tumors, including Multiple Endocrine Neoplasia, MEN, VHL)
Hoping both you and your son have healthier futures than you have pasts..
Gina x
A
Hi paula
Sorry to hear of your condition and your son....never heard of it!
Fantastic idea to write about it and make people aware.
I have mild Chronic Fatigue Syndrome which many people don't understand...just think it is lazyness!!!!
Emma x
Hi Paula
Good luck with your book, I'm sending you lots of encouragement through cyberspace!
Sorry to hear about your condition but you must not feel guilty, no one can control these things.
Hugs Lynsey:)
I'm so sorry to hear about this unfortunate ordeal you and your son are going through. I'm just getting to know you, and I hope through this copic dt team I'll get to know you better. You sound like you have a very good handle on this thing and have found a way to not let it get you down through your witty persona. I've had some health problems in my 20s and I just wouldn't let it get me down. I always had a positive attitude, and it seems like you do too. Just don't let yourself get bogged down about the idea that your son is sick because of you. Because of you he has life! You go girl...write that book!
Paula you gave him a lot of grate things, because even if he only have half your courage, cheer and kindness he is great. You are great and this book will be a huge success, keep us posted and remember I would like you to sign my copy and sorry Myrt the first copy is mine. I think the title also sound fab, I do not think we always realize the impact men have on our lives, for some they are a blessing and for others the curse. Grats on becoming a member of the Copics DT team and all the best with this book.
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