What Are 10 Things We Don't Know About You?

General
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Hi Everyone

Some of our other Ben's Friends Communities have had some fun and gotten to know each other better by answering such a question. Here's mine:

1. I was born in England and was 16 months old when my parents emigrated to Australia. My sister was born 3 years after me - she won every argument we ever had, as she would simply call me a Pom! (For those who may not know, there is a lot of stirring that goes on between Australians and English..."Pom" is slang for English)

2. When I was a boy, my favourite band was KISS - as hard as that is to admit, they seem to be almost bigger now than then!

3. I cringe sometimes when teaching my children about responsible use of alcohol - I did not practice then what I preach now

4. Coming from a small town, I enjoyed some success at most things in life and was considered a big fish - I then realised people should have added "...in a little pond"

5. I have realised that life is full of paradox - e.g.sometimes less is more, not doing anything is doing a lot and that a wise person says much even when silent

6. I have learned that true happiness comes from within and is amplified when helping others.

7. My daughters have all thought I was very funny...until they turned 5

8. Apparently I am a real Dr Doolittle - our neighbours have commented to my wife about my conversations with our dog and cat. I didn't know that. They don't know that the dog and cat donut understand a word I say

9. As a child, it is easy to get lost outside the house. With Lyme, it is easy to get lost inside the house.

10. My favourite quote (as best I can remember it) is:

"I look at life this way. You are juggling 5 balls and call them family, friends, health, career and spirit. The challenge is to keep them all in the air at the same time. If you frop the work ball, you will find it's made of rubber. If you drop any of the others, you will find they are made of glass" (Peter Dyson, then-CEO, Coca Cola Amatil, Asia-Pacific).

What are 10 things I don't know about you?

Kind regards,

Dkel

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  1. I’m married and have 2 beautiful daughters and it never gets old when people tell me that!
  2. I ballroom danced for 18 years and won a couple of championships (oh to have my size 6 figure back!)
  3. I’m originally from outback Kalgoorlie in WA but we moved to Perth when my parents bought the Leederville hotel and we lived above the pub until moving to Claremont.
  4. I have lived in 11 different houses with my parents and 3 with my husband as we constantly move to change things up but have been happily living where we are for 4yrs.
  5. My best friend of 20 years died from liver cancer at the age of 21.
  6. I have a you get brother and older sister making me the middle child.
  7. No one is my family or a distant relative has VWD. I’m the first in our blood line with it which made me think I was adopted but I’m not.
  8. I love being a stay at home mum but miss the stress and pressure of work as that is what I loved about my job.
  9. I actually think I have the best in laws in the world! We never got along until the birth of my first daughter and now we don’t go a day without speaking.
  10. My favourite tv shows were Buffy and Supernatural.
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1. I am blissfully married with two amazing children... one girl and one boy... both amazing!

2. I teach children with language delays and disorders to speak and develop essential language skills. I LOVE my job and cry like a baby every year my students "graduate"!

3. I have lived all over Australia and overseas and moved every few years because I was a military brat (Air Force). I think this has made me strong and resilient and I make friends easily because I had to learn to pretty fast! I still look up in awe every time a plane flies over and when people ask me where I am from I say "Everywhere!".

4. I LOVE chocolate... it will be my downfall... I just know it...

5. I still love music from the 80's... the more cringe-worthy the better! It's embarrassing...

6. I have two sisters... I'm the adorable middle one...and we are spread out over three different states. :(

7. I love the beach!

8. My favourite poem is by Maya Angelou "Still I rise!". It is about rising out of adversity despite it all.

9. My daughter has just been diagnosed with VWD. We find out tomorrow what subtype after a three year search for answers. She is such a trooper and has had to endure way too much with her VWD. I have cried along with her at every doctor/specialist visit and somehow she has managed to just keep going. Despite it all, and the time off she has had from school and all the dramas that have come along with it, she is still in the gifted program at her school and I am just so proud of her strength and resilience!

10. My husband's maternal uncle died from a bleed, before my Mother-in-law was born, so she never met him. When she was old enough to know about him, she was told he had Haemophilia. It may have been Type 3 VWD? That seems to be my daughter's only genetic link. I guess we will never really know.

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1. I'm a registered nurse...yet in all my 40 years of nursing, I never had a patient with VWD.

2. I'm married to the love of my life...aka on these pages as "pretty boy". I'm grateful he's joined our ranks to learn more about this odd disease I have.

3. I have 4 legged children...and am passionate about dogs. I'm a certified "off lead" trainer...even though I now tend to avoid more aggressive dogs.

4. We have a home in Honduras that has been our dream...but now am doubtful I can ever feel safe there with their limited medical care.

5. I have 7 siblings, but I'm the only one with VWD. None of us remember my parents or any other family members with bleeding disorders.

6. Like Di...I have a special place for chocolate. A very special place, well hidden.

7. I love scuba diving, hiking, kayaking, .... hardly a day goes by without a 5-10 mile hike with my pups.

8. I've inherited 4 wonderful children from my husband when we married 20 years ago..and am blessed with 7 grandchildren.

9. I love reality TV....sigh...the secret is out.

10. And my favorite quote...appropriately enough..."the adventure begins when things go wrong".

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Great to hear from you! Stay strong and big hugs to you and your furry friends! X


tesstee said:

1. I'm a registered nurse...yet in all my 40 years of nursing, I never had a patient with VWD.

2. I'm married to the love of my life...aka on these pages as "pretty boy". I'm grateful he's joined our ranks to learn more about this odd disease I have.

3. I have 4 legged children...and am passionate about dogs. I'm a certified "off lead" trainer...even though I now tend to avoid more aggressive dogs.

4. We have a home in Honduras that has been our dream...but now am doubtful I can ever feel safe there with their limited medical care.

5. I have 7 siblings, but I'm the only one with VWD. None of us remember my parents or any other family members with bleeding disorders.

6. Like Di...I have a special place for chocolate. A very special place, well hidden.

7. I love scuba diving, hiking, kayaking, .... hardly a day goes by without a 5-10 mile hike with my pups.

8. I've inherited 4 wonderful children from my husband when we married 20 years ago..and am blessed with 7 grandchildren.

9. I love reality TV....sigh...the secret is out.

10. And my favorite quote...appropriately enough..."the adventure begins when things go wrong".

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I am 73 years old, spent much of my life in school and University and then back in school to teach Chemistry and Physics.

After retirement, I worked in a defense company growing rubies and YAG laser crystals as well as yttrium vanadate crystals with Neodymium doping for use as infra-red medical, metallurgical and targeting lasers.

I am married for 53 years to Lisbeth, from the Swedish speaking part of central Finland. We had four children, two of whom passed at an early age.

I am a Ham radio operator for close to sixty years. I build electronic stuff for fun and am currently playing with a "Raspberry Pi mini-computer operating Linux and Python computer programming languages that I have to learn.

I am diagnosed with acquired type III vonWillebrands disease complicated by factor VIII inhibitors, sometimes associated with MGUS- monoclonal gammopathy of uncertain significance. Well it certainly gets my attention. I am bleeding a little now from a probable AVM in the GI tract and I have been fighting significant bleeds for the past few months

I try to keep up with current trends in treatment of VWD and then pass them along as well as reading your posts about what you find out..

I have a few good Hematologists who are interested in explaining to me what goes on in the blood chemistry.

For fun, my wife and I built our log cabin from a kit delivered on two 18 wheelers (Lorries for you down under folks). It took 4 years to get all the sheet rock, wiring and plumbing done but we love it as does our Goose, duck and five cats.

For stress relief, I keep up a flower garden. It is very large, which tells you something about my stress level!!!!

Enjoying very much being a part of the Community,

John the elder

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Dear Dave,

Both sides of our family suffer from inherited depressive illness and that led to the early deaths. It has been a tough road but we are both working hard to stay on a positive path. Thank you for your empathy.

I am trying to put a picture up of the inside of the house. on the site. It's a three bed two bath plus loft house on four acres in a square configuration. We also have a two floor barn to keep our "stuff" in. (mostly radio stuff and tools.

I hope you are feeling better!

John the elder

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1. I just joined this support group so I think I could probably put anything on here!

2. I have type III VWD, inherited it from my parents who I'm pretty sure must have meet at a "So you think you carry an autosomal recessive disorder" convention

3. Interestingly enough, my brother has a mutation and therefore has type I VWD, luckily for him he has never had any bleeding problems

4. I really enjoy making crayon art, I melt crayons onto a canvas with a hot glue gun!

5. I play the piano, and I even sang in my worship band at church way back when

6. I've never been to Australia, but I do have a cousin who lives there. (And I really really want to visit some day)

7. I'm currently a Genetic Counseling student at Emory University (started 3 weeks ago) and I'm loving every minute of it. I think having VWD has given me an empathetic understanding that a lot of my classmates don't have.

8. I'm really excited about living in Atlanta, but I pretty much haven't left my house because I don't know anyone here to go and do things with.

9. I do have one cousin with type III VWD, but I haven't spoken to her since the family reunion in 2002 so I don't want to ask her the questions I have about her experience with VWD.

10. I have one fur baby aka my puppy Diva, who is a Bichon Frise / Maltese cutie.