Getting to Know You

[Sangye]

Here's a thread devoted to getting to know each other more. We can share things about our lives before/minus Wegs, our work, our family, hobbies, etc.... Anything! And if you're a new member, jump in and tell us about yourself.

I'll have to write mine later, but just thought I'd start the thread and contribute a theme picture :


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[moyan]

Good morning Sangye and all. What a marvellous pic, how the people of the world should act

[Lightwarrior]

I thought Ciara (Dominic's boxer) and Bunny (Christophers cat) were unique to this. Ciara knaws on Bunnys ear and Bunny falls asleep purring. I love the picture

[Jack]

I'm 54 (55 in a couple of weeks time), but look more like I'm 75 and I've had Wegener's for 25 years.

I am married with 2 girls aged 14 and 19, both adopted, both doing very well and are "good kids". Wife now does almost everything around the house and works 3 or 4 days a week too. It's really not fair on her.
We live in quite a nice house in a good area on the outskirts of Birmingham, now fully paid for!

I had my first symptoms when I was 30 and started on the long road of misdiagnosed sinus infections. I had just returned from working in Italy for a short time and thought I had picked something up from polluted sea water (my stay was not all work! ).
Ended with renal failure and eventually a cadaver transplant.

I have worked as an engine design and development engineer since leaving school - retired on a full pension due to worsening health issues 3 years ago. One advantage of working for the same large company for over 30 years.

My hobbies have always been connected with cars and bikes as well as the usual household maintainance stuff, but I also practiced yoga for many years and also karate at one time. These days, I mainly watch a lot of TV and mess with my computer. Not too keen on computer games though.

My next target is to get to see my youngest daughter through college and also teach her to drive. My eldest daughter passed her test first time under my instruction!

[gwenllian111]

Whats a cadaver transplant, sorry, i'm not familiar with the term? Jack - you've been through so much, I truly hope things significantly imrpove for you. What a great thread this is, finding out what people are like minus the WG!


My dad also taught me to drive, and to this day, I still drive like him lol!!

[gwenllian111]

Ok this is my bit!

I'm 29 years old, married to my husband of 7 years, and have three little girls. I live in Cardiff, Wales, UK.

I've worked on and off all my life in a clerical capacity, often secretarial work.
I don't currently work, but intend on returning to work once my youngest, Eirian, is a year old.

I am in the process of moving house to a nice new home in Cardiff North. Very exciting!

I have two older sisters. The eldest has a suspected auto immune disease, and is currently seeing a Rheumy about her symptoms.

I rely on psychics a lot, - and, I know most people think they're a total waste of time, but I do believe that a select few can be good. I seek reassurance from any means possible! lol.

I'm scared of dying.

[Jack]

Whats a cadaver transplant, sorry, i'm not familiar with the term?

It is an organ transplant from a doner who has died rather than from a living relative.

I'm scared of dying.

Something I have come to terms with and feel quite comfortable about. Just not today if I can help it!

[Barbara1966]

I’m 44 years old in a couple of days (March 17th) I was born and raised in Poland and moved to United States 23 years ego. I’m marred to the most wonderful man for 22 years and we have two wonderful kids in college. The boy is 21 and studies architecture, and the girl is 19 and studies music management.

My husband is also Polish; he is working on an oil tanker as a sea navigator. Usually he is at the sea between 6-8 months at the time, then he returns home for roughly a month at a time.

We live in Bristol, Connecticut for 12 years in a very quite neighborhood. I did enjoy taking care of the house and all the maintenance. My hobby was gardening and taking care of the yard.

For last 15 years I worked as a production planner in the company that makes perfume pumps. I loved my job very much. The last 8 months I’ve been on disability leave and had to leave the company. I’m hoping when I will be in remission they will take me back.

I was diagnosed with WG in July 2009.

[Lightwarrior]

I am 54 and was adopted at the age of 3 days by the great great great great Grandaughter of the last Native American Chief to sign the treaty and only because his people were starving. I have only non-identifying information about my blood line but do know that my biological mother was 1/2 Native American (don't know which tribe) and 1/2 French. My biological Father was full blooded Irish , they worked the fields and he left her when she became pregnant with child number 5 (me). I was raised in a working class poor family who taught me that loving each other and taking care of your own were the most important things in life. My Mom and Grandma lived with the last 7 years of their lives. When I moved to Yuma I moved them with me within 6 months (My Grandfather died when I was 21 and my Dad when I was 22). For 7 wonderful years I had 5 generations under my roof and my children and grandchildren were witness to the incredible life stories from my Mom and Grandma, with the excpetion of Brianna who is almost 3 now, both my Mom and Grandma got to sing to her and see her ultrasounds before they died. I should mention I was born and raised in Roswell New Mexico and there are many people who know me that are convinced my real parents were the aliens that crashed in the spaceship in the Roswell desert. (lol)

I married for the first time at age 20 to the father of my two adult daughters, his family took me in and loved me as their own even after we divorced, we still stay in contact and one of his sisters moved to Yuma and lived with for about a year, several years ago. His Great Aunt was the local Curandera (healer) and practiced using herbs and teaching people how to live through their fear. When I joined the family she announced that i was the one she would train. I spent every weekend with her for 2 years (she spoke only Spanish, i was just learning, she was very traditional and I was a skinny smart ass white girl) Go figure, I loved her and learned a lot.

Married again, got divorced supported my children as office manager of an automobile dealership while organizing community groups as a side. During my activist days we sued the State of New Mexico to provide districts to increase the chances of poor and minority neighborhoods of having elected reprensation and won. We worked in my living room with maps all over the walls and two dollar calculators until 4 in the morning. I would take a nap and a shower and go to my day job. Numerous voter registration drives, a community center, organizing PTA's in the Barrio schools to name a few. Through organizing I found one of the great passions of my life, nursing. During a voter registration drive we came across an elderly gentleman living in a chicken coop, he either could pay rent or stay on his psych meds (he was schizophrenic) If he paid rent he sometimes hurt himself and others...anyway this started our crusade to build and open an Community Health Clinic, which we did. Through this process I fell in love with public health folks and decided to go to College. I got an Associates degree, won a Fuld Fellowship and got to study with Nursing greats like Jean Watson in Edinburgh Scotland, visit London and follow Florence Nightengales work.

I was hungry for more knowledge and continued for my Bachelors of Science in Nursing (BSN) and then onto my MSN. Once I have this Wegs thing figured out I still want a PhD in Nursing. I have many theories yet to write. I am the Clinical Nurse Expert in an Intensive Care Unit and am passionate about patient safety. My co-workers have been incredibly supportive and freaked out by what is happening with me. They made a small cardboard cut out of me (about a foot high), dressed it and carried to meetings and out in the unit for consultations with the doctors and nurses. They had posters of knew protocols and things I would normally teach saying "Flat Christi wants you to know". They called this cutout Flat Christi.

The most important part of my life are my amazing children and grandchildren. Both of my daughters think with their hearts, there have been struggles but I am so proud of who they are. Medea is the mother of my five grandchildren and organizes the family. Valerie has her own apartment, works as a medical assitant and has plans to go back to school. My oldest grandchild is Dominic, he turns 18 in one week and I call him the home of my heart. Desiree was born next, she is 16 and should be finished early with highschool, she has the sweetest spirit and the smartest brain I have ever seen. Christopher is 13 and is thought process is most like my own. He is gorgeous, funny and thoughtful. Alexis is 6, loves kindergarten and has this incredible spirit that lights up the room when she enters. Brianna will be 3 in May, she is strong, independent, funny and no-nonense and I swear she channels my Grandma at times. (the other day she was sarguing with that she was NOT 2 years old, she was 99 years old, my Grandma died at age 99...I know theme from jaws). Ciara is just turned 1 year old and is Dominic's dog, she is a boxer who looks a lot like Scooby Doo. Bunny is the cat who is about 8 months old. Amazing house, not often quite. I didn't mention the never endless stream of friends of the grandkids that filter through and try to live here.

Probably too much information, but now you know a bit about who I am. I feel blessed to have landed in this group, but then my life always has been one incredible adventure.

[Sangye]

I'm 46 and I live in Maryland. My family is Greek and both parents are first-generation Americans raised in NYC. I have one sister who's 2 years older than me. My family was very Greek--lots of drama, lots of food. (The movie "My Big Fat Greek Wedding" was more of a documentary than you might think. ) My mom could make one heck of a baklava.

My dad was in the military so we moved all the time. We lived all over the US but spent the most time in the southwest. I really didn't mind it since I always had a travel bug. When I became an adult and continued traveling, I explained, "My parents put the ball in motion and it just kept rolling." I got my Bachelor's in Biology in southern California and within a year I joined the Peace Corps. That had been a lifelong dream of mine. I went to Ghana as a high school science teacher. During my second year I taught beekeeping to local farmers. Being a Peace Corps volunteer was one of the best choices I've ever made. I really grew up over there. Seeing my own country through the eyes of others changed me forever. I saw more poverty and disease than my heart could stand. I never, ever wash clothes in a machine without thinking about how easy we have it. I've been home for 22 years, but in many ways it feels like I never left. I'm still very talkative, but I learned about silence during my time in Africa and it's remained with me ever since.

I came home and got my teaching degree in southern California. I taught elementary school for 2 years in a Hispanic neighborhood. I loved the kids but still had a major travel bug scratching at me, so I took a job teaching in a private Spanish-American school in Valencia, Spain for 2 years. I stayed in Spain for a third year and did private tutoring. That year I found my sweet dog Laika living on the street. I brought her back to the states with me when I left Spain.

I moved to northern Arizona (Flagstaff) on nothing more than intuition. The moment I drove into town I knew I was home. I've never been anywhere in the world that I loved so much as Flagstaff. I grew very strong there, hiking many miles a day along the endless mountain trails, eating healthy, breathing clean air. I made wonderful friends. I felt the pull of my first love-- science. In particular, I always loved anatomy and physiology and always felt like a physician, as crazy as that sounds. I had grown fond of holistic health and decided to become a chiropractor. I moved to upstate NY for school and was one of the few people who can say they loved the big snow up there.

As soon as they finished the graduation ceremony, I was out the door heading back to Flagstaff. I'd been gone for 3.5 years but it felt like forever! I started my own practice specializing in pediatrics and pregnancy, though I treated patients of all ages. I was in heaven. I treated entire families at a time-- all crowded in the same treatment room. My office was fun, LOUD, joyful and loving. It never felt like work. The combination of chiropractic, owning my own business and my patients made it perfect for me. My hands, my head and my heart were all busy.

Within 5 years, Laika became sick with something that looks like Wegs in retrospect. I took her to a holistic vet who turned out to be a Buddhist nun. I'd always felt like a closet Buddhist and began going to the temple in Sedona. I felt a strong connection to the lama and sangha and within a month I went as often as I could. Laika worsened and died within 6 months. She and I had been inseparable for 10 years. She had brought me to many good things and many good people in those 10 years, but bringing me to our temple changed my life forever.

I adopted my dog Patch within 2 weeks of Laika's death. I knew I'd always miss her, but I didn't want to live without a dog and I couldn't stand the thought of a dog sitting in a shelter instead of my house. I adopted my dog Lotus almost a year later. The two of them are a hoot-- best friends and very funny.

I was ordained as a nun within a couple years. At my ordination, I was already getting sick. I'd been having severe joint pain on and off for several months. I was terrified about what was happening to my body, but I was also in an unbelievable amount of denial. I continued working while I grew sicker and more crippled. I was very close to death by the time I went to an MD. Luckily he diagnosed it right away.

I moved to Maryland at the end of 2008 to be closer to our main temple. I was surprised to discover JHU specializes in Wegs and is only 2 hrs away. In Arizona I had no idea about the VF, Wegs docs, nothing!

I'm determined to get back to work as a chiropractor. I don't know when or how, but I don't believe it's over. Meanwhile, I'm grateful for all of you for keeping my chin above water and letting me play doctor with you.