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#10964 - 02/11/06 06:27 AM Get to know each other?
CShell Offline

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
I thought it would be cool to get to know each other better on here [img][/img] You know, see what we all have in common besides ichthyosis. I rely on all of you so much for support and understanding, and I really feel like you're my friends, and would love to get to know everyone better!

Maybe write a paragraph about yourself?

OK, here we go, I'll start b/c no one else is on at the moment lol

My name is Courtney. I'll be 21 years old on the 27th of February (yay! lol). My husband's name is Dmitry, and he's in the Army (Arabic linguist). Julia (as you all know) has Netherton's syndrome, and is our only child, unless you count our Siberian Husky, Sasha. [img][/img] I'm a Russian language major in college, about a semester away from my associates. When I graduate, I want to be a social worker. I'm a free-lance writer, and have been published both on and offline. I've written two books (yet to be published lol), and more poems and short-stories than I care to count. I'm not a cat person, b/c they make me sneeze. I have a bazillion allergies, including one really weird allergy to ALL fruit (yup...oranges, apples, bananas, pears, you name it). I'm a gigantic Beatles fan (in fact, Julia was named after one of their songs), and really only listen to 60s/70s music. We've lived all over the U.S., including Alaska, Texas, NJ (where I grew up) and now Cali. I love to travel [img][/img] I think the only states I haven't visited are Hawaii and Utah. I used to be a nanny, and am now a SAHM. My ultimate goal in life is to become a pastor.

Ok...your turn! [img][/img]

[This message has been edited by CShell (edited February 11, 2006).]
Mom to Julia

#10965 - 02/11/06 03:30 PM Re: Get to know each other?
skittles71 Offline

Registered: 01/16/06
Posts: 283
Loc: Catawba North carolina
Hey my name is Kathy im 34 yrs old.My husband name is Jeff and hes 35.I have 3 kids 14,8,9 .I have 2 boys and 1 girl.And they are always keeping me busy.I was born and rasied here in North Carolina.Soon my older son Cameron will start baseball.I hope he makes it he loves that sport.Last year he did'nt make it cause his skin just would'nt let him.It was so cold that his skin would crack and bleed and could'nt give his best he had.But I told him not to give up.Both my boys has x-linked ichthyosis.Im a pre school teacher for now until March 13th cause on March 14th I start my nursing school.I was a nurse before I had kids but when I had my first son Cameron i had to stay home with him to take care of his skin.I really miss taking care of people and making them laugh and smile.In my spare time I like to be with friends and family.For hobbies I collect Lighthouses my living room is full of them.I have seen all the lighthouses on the OuterBanks.Well I cant think of anything else so I will Have a Blessed Day

[This message has been edited by skittles71 (edited February 11, 2006).]

#10966 - 02/11/06 06:34 PM Re: Get to know each other?
jds Offline

Registered: 12/23/05
Posts: 432
Loc: Austin, Texas
Hi. My name is Tammy. I am 31 years old and live in Austin, Texas. I have only lived in Texas (both the Houston and Austin area). I have left the state twice to go to Cancun, once to Georgia, and once to Virginia. Oh, how could I forget I went on my first trip with my husband Gordon (34) to San Francisco. Not well traveled, I must admit. I have one four year old son named Tanner and of course, my beautiful new little guy Jared (who is now 9 weeks old). How time flies.
I teach kindergarten at the moment, but I am looking into switching schools to be closer to the babysitter's house. I would be more than willing to teach first or second grade as well. We are very lucky to have a wonderful lady watching both of my boys. She loves them like her own grandchildren. She cares for Jared's skin just like I do and sometimes even better.
As far as free time goes, I have very little, but when I do I love to read, take pictures, scrapbook, and go to the movies. I am so far behind in my albulms though. Just finished my memorial day pictures from 2004. I am also taking a children's writing course from a school in Conneticut. Right now I have my class account frozen, but will continue again in the summer. The class helps you learn the magazine market, but ultimately I would love to write leveled readers (The books that you use when teaching children to read.). Who knows though. Life has a way of sometimes choosing your path for you. Many times a much pretty path than I may have choosen on my own.
My family too is not a cat family both my husband and Tanner have severe allergies to them. I on the other hand love cats. We do have two dogs. Quite the odd pair. A minpin named Tucker and a yellow lab named Brodie.
I tend to talk way to much as is evident with my post, so I will let you go for now. Thank you, Courtney for such a wonderful idea and by the way Julia is a sweetheart.
Tammy (caregiver)
toddler son
lamellar ichthyosis

#10967 - 02/11/06 09:27 PM Re: Get to know each other?
LauraAnn Offline

Registered: 04/01/04
Posts: 220
Loc: Chicago, IL, USA
Great idea.
It's been fun reading your posts, ladies.
My name is Laura, I'm 35. Married, to Tom, also 35. We have 4 kids, 2 girls, 2 boys, my girls are 12 and 10, my boys are 6 and 2. We live in the inner city of Chicago, the uptown area, six block west of Lake Michigan. My husband and I are inner city missionaires, we have lived here in this missionary community for almost 13 years. My husband is a full time high school teacher, here in our private school, and I am a SAHM, but also filling my time with various duties keeping our ministry going such as: cooking dinner once a week, coordinating parent rotations for school lunches, lay counseling women who struggle, discipling young married couples, and whatever other needs arise that we can be involved in. Some of these things my husband and I are involved in together. Hobbies? Well, I don't have much time for any....I had to put them all away when number 3 came along.....but I love to unwind with a good movie, book, or tv show. I love being a mom, most of all, and I love caring for kids, skin, allergies, and all [img][/img]. No pets, we can't have them around, too many people in our building with allergies - well, we wouldn't be able to have them anyway, my husband and daughter are horribly allergic to animals, as well as horrid seasonal, and my girl has detergent/fragrance allergies and exercise induced asthma. My boys have seasonal allergies, eczema, and my 6 year old has a peanut/tree nut allergy, asthma, and a detergent/soap/fragrance allergy. Yep, it's a full time job caring for the kids [img][/img]. It's not really as bad as it looks written out!

[This message has been edited by LauraAnn (edited February 11, 2006).]
- - - - - - - - -
Mom to: Joshua (9yrs) and Matthew (4yrs) both affected with recessive x-linked ichthyosis

#10968 - 02/12/06 02:42 AM Re: Get to know each other?
victoria Offline

Registered: 03/19/05
Posts: 193
Loc: Berkshire, England
well my name is vicky and i will be 26 this june, my partner is del and we have a little boy together who is 17 months and has x linked ichthyosis and i have jessica who is 7 years old.
We live in the uk but are considering moving to cyprus which is where dels dad has moved since we lost dels mum a few years ago.
I used to work full time as a bar maid but quit when i was carrying kian. I love animals although i keep no pets because of where i am living at the moment - although i used to have kittens [img][/img].
All my family love music and ya can always find one of us bopping around to the radio or a cd - and yup that includes bum shuffler kian as well [img][/img]

[This message has been edited by victoria (edited February 11, 2006).]

#10969 - 02/12/06 05:00 PM Re: Get to know each other?
thehodgees Offline

Registered: 01/29/06
Posts: 130
Loc: Woodstock, ON, Canada
Hello, Courtney, Erin, Kathy, Tammy, Laura and Vicky!
Thanks for the awesome idea, Courtney!
My name is Sarah (32) and I am mother to two...Matthew, 4, and Ema, 1 1/2. Ema was born with CIE...Matt was born with ENERGY!!! Let me tell you...CIE is easier to handle somedays!
I am a teacher (mostly Grade 6 and Phys. Ed). I will be on extended leave until Ema starts Junior Kindergarten (4 yrs. old). I love to scrapbook and have wrangled a job at a local store for one day a week. My mother claims to enjoy being with our kids once a week. Bless her!
My husband, Craig (36), is also a teacher. He is a Special Education/Learning Support Teacher so he does a lot of paper work and doesn't have his own classroom.
We live in Woodstock, Ontario. About 30,000. We lived in New Zealand for 4 years when we first got married in 1996. We couldn't find jobs in Canada. We have traveled A LOT...mostly before kids but we did travel to New Orleans, and the East Coast of Canada since having the kids.
We are HOPING to get to the conference this year. Unfortunately, a really good friend of our's is getting married July 1st. We told him that we are torn by our situation. We have to let him know this Thursday what we are doing.
Has anyone else noticed how many of us are teachers or have spouses that are teachers? Erin told me that her board has a lot of teachers with children with Ichthyosis. I wonder if anyone is tracking this?
Erin (BeepBeepinaJeep) purposed setting up an on-line chat...perhaps Wednesday nights - BEFORE Lost. My AIM name is thehodgees4
email is
Ciao for now,
Again, thanks for the great idea, Courtney!
Craig and Sarah Hodgkinson (aka Dad and Mom to Matt and Ema)
Ema has been diagnosed with Congenital Ichtyosiform Erythroderma (CIE)

#10970 - 02/14/06 11:42 AM Re: Get to know each other?
Francesca Offline

Registered: 01/16/06
Posts: 94
Loc: Brisbane, Australia
Hi, I am Francesca(37) and live in Brisbane, Australia ,(aka Brisvegas!)with my partner Tony(41). Last October we had our first child, Lucia Belle - she has Nethertons and is yet to come home from hospital, but is wrapping the nurses around her little finger as I write this! I hail from Kent, England and came to Oz via SE Asia in '93 as a backpacker in search of 'myself' and never left! Before the wanderlust I did a degree, worked in Africa & then worked in London. My family are all back in England or dotted around Europe. Tony is from cane-cutting Italian roots in North Queensland: we met on a grassy knoll at a summer music festival. I am on maternity leave (now extended)from a job as a 'brand manager' for a childrenswear company, while Tony works at the University of Queensland in telecommunications. We have a a very fluffy cat, Shaman, with attitude(what cat doesn't?) but can't agree on 'where' a dog should be allowed within the house....Love performance arts, outdoors activities and music from all areas - currently brushing up on nursery rhymes and story-telling talents!

#10971 - 02/15/06 04:54 PM Re: Get to know each other?
ShaunaJ Offline

Registered: 07/29/03
Posts: 233
Loc: Ogden,Utah
This is a fun idea. I haven't been on for a bit and have missed a ton on the board. I see a ton of new names how cool. OK My name is Shauna I am 28 years old. I have 3 kids Alexis she is 9, Ryley is 7 she has Lamellar Ich, and Colton he just turned 3. My husband is 33 his name is Mike. He is a computer geek and I wouldn't have it any other way. He is in school for Computer Programing, but wants to change it to web design. He is also a store manager for Doller Tree. I am self employed. My husband and I are mobile DJ's so we dj school dances, weddings, parties, bowling allies, ect. We do travel a bit with this job. I also sale jewelry and that is a fun job for me because I love jewelry. I have lived in Colorado and Utah but that is it. My favorite place to visit is Seattle. My favortie color is purple. I love to read, write, take pictures, scrapbook, and bake. I have written tons of poems and won a few contests with them nothing major though. We have two dogs a papillion named Snickers, and a toy poodle named Dudley. I can't think of much more right now. This was a great idea I loved reading everybodies posts.

Shauna Johnson
Independant Consultant
Cookie Lee Jewelry
"Choose a job that you LOVE and
you'll never WORK a day in your life!"

#10972 - 02/15/06 08:18 PM Re: Get to know each other?
Laurensmom Offline

Registered: 12/29/04
Posts: 212
Loc: north billerica, massachusetts...
I love this idea. My name is Shannon. I am 40 (yikes) years old and seem to be in the older but inexperienced mom category. Courtney, we share a birthday (February 27th). My husband John (42) and Lauren (21months) complete our little family. We got a bit of a late start.
Lauren's genetic work-up recently confirmed her Harlequin diagnosis and we are amazed daily on her perserverence and determination.
I am originally from Traverse City, Michigan and attended Central Michigan for both my bachelor and masters work. I moved to Massachusetts shortly after graduation and have been here ever since. John is a born and bread Bostonian with the accent to boot and the dedication to his beloved RedSox. We met 6 years ago and we will be celebrating our 5 wedding aniversary in April. I returned to work part time as an audiologist at Childrens Hospital in Boston when Lauren was 9 months old and we were confident the scary time was past us. John works in route/sales for a local spring water company.
Neither one of us have family in the area and some how your postings help connect us to a bigger family. I would love to hear from any or all of you and would welcome emails at
Thank you Courtney for getting us all together.

Shannon Hamill

#10973 - 02/16/06 05:23 AM Re: Get to know each other?
CShell Offline

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
Wow! I'm so glad so many of you ladies participated in this! [img][/img] This board has been a God send, and I really wouldn't know what to do without you all!

I loved reading all of your responses, it makes everything more, makes you seem like actual people, if that makes any sense lol

Beepbeep, I always think of that song whenever I read your posts lol You know, "Who's got the keys to the jeep, beep beep!" [img][/img] I almost went to college in North Carolina, too, got accepted at UNC Charlotte, but ultimately decided to stick around NJ to stay with my husband.

Kathy, have you ever seen the lighthouses in NJ? I know they have some famous ones there, particularly the one in Cape May. My mom collects lighthouses, too, coincidentally. She has them displayed in this cabinet thing. We're beach people [img][/img]

Tammy, wow! A teacher. I totally respect that. I worked for awhile as an aftercare teacher for first graders, and it was HARD WORK! Anyone who can do that full-time is a hero in my eyes! lol And I love your outlook - "Life has a way of sometimes choosing your path for you. Many times a much pretty path than I may have choosen on my own". It's so true.

LauraAnn, sounds like you have a full plate! 4 kids, wow, plus all their special needs! You must be an amazing person, I have a difficult enough time dealing with just one!

Victoria, you probably get this all the time when you talk to people from the U.S., but I love the way your words flow together! My friend spent a semester in London last year, and he became infatuated with the accents over there, and for months tried to mimic it, in New Jersey! lol He was a character.

Sarah, another teacher! I've noticed so much in common between all of us, even just little things - sort of underlines my thoughts that everything happens for a reason! Hope you get to come to the conference, it'll be my first time this year. And all your traveling - wow, I'm jealous!

And Francesca's another traveler! That's cool - I've always wanted to backpack around, and it's always been a dream of mine to visit Australia. Maybe one day I'll come visit lol Is Lucia gaining weight yet? Remember, whoever hits 10lbs first gets a rattle! [img][/img]

Shauna, my husband's a computer geek, too lol If he had his way, he'd sit and play World of Warcraft 24/7. And you are the first person I've ever come across who likes Seattle!! lol My husband and I stayed there two years ago on our way to Alaska (we drove from NJ to AK...quite a long trip!), and got horribly lost, and my hair was frizzy the entire time because it rained. [img][/img]

Shannon, I'd done some research on Harlequin's while we were still researching Julia's condition. You must have an incredibly strong daughter, and you must be an exceptional mom! And I'll be sure to come on here next Monday to wish you a happy birthday! I will toast you with my first (legal) martini! [img][/img] lol

Keep em comin' ladies! I know there are more than 9 of us on here!! [img][/img]
Mom to Julia

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