Author Topic: About ourselfs  (Read 9932 times)


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Re: About ourselfs
« Reply #45 on: November 23, 2010, 05:36:55 PM »
My name is Stephanie and I am 33yrs old. I am married to Ernie for 9 years a  Marine and Firefighter
We have four children Aneesha 14, Jazmine 8, Jacob 6, and Damian 5
We live in California and I work part-time at home doing medical insurance billing on the computer. I stopped working at the hospital in March I had beed there 11 years
I love to help at my kids school and every sunday morning I teach a class at my church for two year olds


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Re: About ourselfs
« Reply #46 on: November 23, 2010, 07:58:20 PM »
I am 45 and married to my DH for nearly 7 years. I have two sons and a daughter and DH has two daughters, hence the screen name.

I have been a Paralegal for 24 years and a licensed Private Investigator for 4 years.  Plus, DH has the devil of an ex, so I prefer to keep my ID under wraps 'cause my business isn't hers.....

I've been ill since at least 1998, but diagnosed with SjS and SLE in 2008.

I adore DH, but he isn't the least bit supportive about my medical issues, still expects me to carry on as if I was still the vivacious woman he fell in love with.....oh how I wish that were the case.

My (former) BFF of 22 years and I have parted ways due to what I perceive as her lack of understanding/compassion and her perception of my being negative and unwillingness to "go natural."

It's the lack of support and feeling alone that makes me negative.  I know it's not healthy, but it's pretty lame when someone tells you that they just didn't know what to do for you.  How about listen?  How about calling to see how you're feeling?  How about calling to express sympathy when your Dad passes away?

My support system has been and will continue to be WHL.  No one else could possibly relate to this sometimes horrific illness. I am so happy to have found this forum when I was going through the diagnostic stages of SjS and even now as new issues crop up, some two years later.


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Re: About ourselfs
« Reply #47 on: November 23, 2010, 09:08:10 PM »
Married 35 years to a good man. One son and one grandson. They are my life.

As a child I had two stepfathers and lots of bad memories.

Worked hard all my life starting as a teenager at many different occupations while running from my true calling and never fully knowing how to achieve it. I am to disabled now to work anywhere. I wished I didn't have sjogrens but there are worse things to have.

Love to read, keep a journal, work on my novels, crafts of all sorts, painting(I'm now very limited on the crafts as to what I can and can't do). I also love peace and quiet. Alone time.

I suppose my motto would be ( Live for the present moment. Yesterday is gone and we may not see tomorrow.)

Joe S.

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Re: About ourselfs
« Reply #48 on: November 24, 2010, 05:25:38 AM »
Season I am curious what is your "true calling"?
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism


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Re: About ourselfs
« Reply #49 on: November 24, 2010, 07:34:12 AM »
hi, all.

great topic, navydad! thanks for the opportunity to get to know people a bit better.

i'm in my early 30s. married over 10 years to a great guy. we just had our first child -a son- last year. i'd like to have another but i'm not sure if it's in the cards for me.

i have a BS in environmental science and work as an environmental, health, and safety consultant so if anyone has questions about OSHA or occupational safety and health issues, feel free to throw them my way. i was working on my masters in occupational health and safety when the AI issues really reared their ugly heads. then i got pregnant... so someday -some year- i'll get back to finishing my degree... maybe.  ::)

i used to have a lot of hobbies. writing, hiking, reading, sports. i was getting into rock climbing but the joint and muscle pain got to be too much. i took up stained glass work but put that on hold when i got pregnant. i have every intention of going back to it soon, though, now that the boy no longer lives in my belly.  :D

i do volunteer work, mostly with disadvantages/abused children.

i'm a tree hugger at heart but with a strong scientific bent to it.

i LOVE fixing things, especially around the house.

i spent a lot of my childhood and early adulthood traveling, and i miss it. having a full time job and now a child make it difficult to do these days.

i work very hard not to let my various ailments define me. they impact my life but i am not my disease(s) and i do my best to maintain that mindset. 


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Re: About ourselfs
« Reply #50 on: November 24, 2010, 08:21:49 AM »
Widow, 5 kids, 2 grandkids. Was a black belt, you know, in the healthy days.

I have to admit while I don't hunt ghosts, I love to watch the ghost hunting and conspiracy shows! I love alien shows too!
I miss the good old days. Things were more like they used to be back then.

Sjogrens, Lupus, Fibro, GERD


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Re: About ourselfs
« Reply #51 on: November 24, 2010, 10:34:06 AM »
I am new it here! So many helpful people!

I am an identical twin. I have 5 kids between my hunny and I. They are 8 girl, 10 girl, 13 boy, 14 girl, 15 girl. We stay really busy! My two youngest are in soccer. My stepson does baseball, football, and basketball. My 14 yo is just plain social texting all day. My oldest is just getting her license.

We live in wa. I work for an elementary school in the intermediate autism room. My hubby, works as an electrician, and is very supportive of my issues and our family.

I was just recently referred to a rheumy cuz of having positive ssa and ssb on my labs. My gp. Thinks I have sjogrens and possibly another autoimmune disease. My twin is worse for wear then I am and haven't been properly diagnosed. She has diabetes and a slew of other ailments which could all be explained by sjogrens so she is going to be tested and go to rheumy in seattle with me so we can both advocate for eachother!

Im a big job is to play all day long both at work and home....hoping my issues don't prevent me from continuing with that cuz im one of the paras who actually plays tag etc on recess! I tore ligaments in ankle playing follow the leader on recess jumping ob one foot:p try living that one down! I will continue to do this job (doesn't feel like a job) until my body refuses to! ;)

That's me in a nut shell...big 35.

« Last Edit: January 30, 2011, 09:16:07 PM by Sha »


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Re: About ourselfs
« Reply #52 on: November 25, 2010, 07:00:37 AM »
My name is Susan (you probably figured that out)  :D My husband's name is Gene. We have been married for 11 years, and are very supportive for each other. He has been sick much of his life so he understands when other people are sick and struggling.

I was diagnosed with sjogren's about 5 years now, maybe 6, brain fog is kicking in. :) I know looking back that I have had it for years, but it didn't become severe until then. I also was diagnosed with fibromyalgia, and diagnosed with diabetes about 2 or 3 years ago now. I have been hypothyroid since my 20's. Polycystic Disease in 20's also. Gerd severe since active sjogren's. My eyes are getting drier all the time as well as increasing mouth ulcers and infections.

Fatigue out of this world.

I was a special education teacher for 15 years, and retired about 2 weeks after school began this year. I just knew that was it, and I couldn't do it any longer. My principal knew I was really sick, but never contacted me to ask how I was after I didn't return, and never called just to say goodbye or anything. Oh Well.

I never in person run in to anyone with sjogren's. My parents are more supportive these days, and so is my son, and daughter in law. I love being a part of this board family.

I have applied for social security disability, and waiting to see if I get my small school retirement pension. I am hoping I get it on disability by there panel, because it will be a little bit more.  In January I have to go for a mental evaluation for the state one. That will be fun. NOT.  ;)

I love to read, I use to play piano for my own enjoyment. I am out of practice now. I love to decorate and keep a nice house. I haven't been able to do that for sometime now. I am daily trying to figure out how to reclaim my house again from the dirt. I MEAN DIRT FOLKS.  :o

I love having company with family and friends, and offering you a nice cup of coffee or tea, and some goody to go along with that. Also, haven't done that in a while now. That will be determine by when I get my house back again.  :-[

My husband was a professional trombone player in Texas before we married. My son is from my first marriage. He is more like me.  8) My husband played in Europe, Mexico City, Carnegie Hall, and Houston night clubs. Now his health has taken him away from that. His favorite music to play was Jazz and Latin. He and my son and daughter in law are the loves of my life.

My son is a good son who can make anyone , and I mean anyone laugh, especially if he thinks they are sick or down. He is 37, and his name is Michael, and my daughter in law is 36 and her name is Jo Ann.

I love to write, but keep putting my writing off. I am not sure why. I would like to hear from any of you that write or are attempting to. I would like some pointers. I have also been working on a few crochet crafts since being retired. It relaxes me.

We have bubbies. That is what we call all our pets in general. Instead of our babies, our bubbies.  :)

We have 4 dogs. Matilda is different shades of black, and is a longer haired mixed herder type girl. Yes we call her Tildy. She is jealous and wants all our attention.  :)

 Buddy is medium brown with the little crown down his forehead, and is blind since someone shot him. He is next to me now, my baby. I take my hands any rub gently across his little blind eyes and say, I love my little eyes. He likes that. He has little white paws, and a mix with short hair.

 Joey or Jo Jo is our tall boy that is blond in color with sort of long hair, and he talks to us with his eyes. A cutie that loves pillow top mattresses.  :)

Then we have our Lil'Anne. She is red in color and a golden retriever mix, but mainly golden retriever. I call her everything from Lil'Anne to little red face, my little wild thing, my Anne of Green Gables and on and on. :D When she wants something she will wimper this cute little baby wimper, before resorting to barking.

 Last but not least and who arrived first to our family is one large Persian big white cat named Charlie. The only cat food he will eat is called Dellie Cat.
This is a dollar store brand, but he will take it any day over your most expensive cat food. He does also like roast beef though.  :)

I did have a little tree frog (a first) given to me by a couple of my students, in a huge jar with a little dish pond, and other wild life to complete his environment with worms for him to eat, but umm he is no longer with us. Not sure what happened. We had him for about 8 months though. His name was Freddie.  :)

Me and my husband enjoy watching movies here at home, and listening to music, and site seeing off the beaten path country roads. It's mostly been watching the movies lately.

This thread is a good one.

Susan and Gene.

Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi


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Re: About ourselfs
« Reply #53 on: November 25, 2010, 05:24:50 PM »
What a great idea Navyday,  I enjoyed reading everyones posts, and learning that most of us have some degree of hardships but we all keep going.

I am Julie, I live near Lancaster PA,  I had RA in 1984 and ended up in bed for a few months,  Then after a few years of treatment I did pretty good, I worked in retail, wine shop and also gave tours of a mansion.  About 15 years ago I started having feet and back problems and ended up in the office as receptionist.  Diagnosed with Sjogrens in 2006, and now just recently I found out I have lupus erythematosus systemic.   Having trouble with my hands and neck, lower back, and right hip. 

 I married my husband Ron 4 years ago but we have been together for 10 years.   I guess I am a crazy cat lady, I have always had cats, My husband loves them too.  We have 5,  Zigzagnut, ( a big black and white male)  Squirty Einstein, (white male with blue eyes and a hearing problem)  Rufus ( a black male who is a real sweetheart)   Reuben (a tiger and white male kitten) and Alli-gator ( a little baby kitten who is black and white and has patches or red.)  They are all our babies. 

Not working anymore, but I am looking for part time work, I am on disability, but it takes two years till you can get medicare.  So I still have to pay for my cobra insurance.  So I signed up for the works for me program.  I also volunteer at the visitors desk at a local hospital. 

I like paranormal things and stories too.  I like to read and all sorts of stories, I like movies, and jigsaw puzzles.
 I also like to taste different wines and go on winery tours and tastings.



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Re: About ourselfs
« Reply #54 on: November 25, 2010, 07:59:25 PM »
I am surprised to read about para-normal and such things in here!  This was mentioned several times.  Maybe we found the cause of our problems. lol.


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Re: About ourselfs
« Reply #55 on: December 01, 2010, 01:05:06 PM »
Hi, thanks for starting this thread NavyDad -- it's great to read all the profiles. My real first name is Cambrigde. I have been with hiubby for 37 years . We raised 2 beautiful daughters and 2 wonderful sons from birth to adulthood. they now  choose to be estranged from us and that is heartwrenching. I only pray one day , that a miracle would happen and they will want to reconnect. I have 2 very awesome granddaughters ages 10 and 11 -- and we have 2 grandsons one age 6, we are allowed to see and one age 7 months we are not allowed to see.
 I like to read and used to write poetry and I have 300 puppets and marionettes and I hope one day to perform with them again in some small way :)  My entertainer name is Lady Cambridge. I am working on putting together itty bitty marionette shows hoping to bring a smile to faces of others -- I call then a * mim marionette moment *... I also love to sing with the chorus :) and I am working a small 3 hour shift once to twice a week as a fitting room hostess at retail store , since being off work for a year due to my lyme disease. I applied to volunteer at our local hospital but then I got sicker now with this extreme dry mouth, eyes too. Thanks again for this post :) what a lovely idea :)
 I live in Ontario , Canada, London region :)