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lisaisweavebee posted:
There seems to be several new people here (yay!) and I thought it would be fun to learn a little about each other. If everyone would please answer these five quick questions maybe we can get the board talking more again.

I will go first:

1. What state do you live in and do you like it? I live in Ohio and hate it - the weather is lousy.

2. Age both actual and how old you mentally feel: I am 46 actual age but in my head sometimes I still feel I'm in my 20's...unless the lupus is acting up and then I feel 100!

3. Married/kids?: I have been married for 27 years and have 3 grown sons and a grandson.

4. How long have you had lupus? 5 years diagnosed but for many years before that.

5. As lupus loves to throw a party, do you have any other autoimmune diseases? I have Raynauds, sjogrens and fibro.

For this site to thrive, we need everyone to participate so please take a few minutes to say hello!!!

Lisa
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Lupylisa44 responded:
1. What state do you live in and do you like it? I live in Colorado but am originally from Michigan. I like CO because it is a drier, more temperate climate and the sun shuns on average 310 days/year

2. Age both actual and how old you mentally feel: I am 46 and usually feel and look much younger, unless lupus decides to flare, then I feel like I'm 80!

3. Married/kids?: I amdivorced and now "permanently engaged" to a wonderful man neither of us has, but we do have 5 big dogs

4. How long have you had lupus? I was diagnosed 27 years ago, but probably had it before that.

5. As lupus loves to throw a party, do you have any other autoimmune diseases? Sjogren's Fibromyalgia,Raynauds, Hypothyroid,

Lupylisa
With love, with patience and with faith, we'll make our way.
 
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Octoberschild responded:
1) I live in WA state. I've lived here all my life and love it for it's beauty and greenery. Have traveled to almost every state in the US but find I still love WA the best.

2) I will turn 58 next month. Today is a flare day and I feel older then both of my parents. Dad is 89 and mom is 81. I saddens me that on my bad flare days that my mom still has to take care of me.

3) I am now a widow. My late husband passed away from cancer in 2007. During his journey was when my Lupus made it self known. It wasn't until her passed away however, that I saw a dermatologist for the red rash on my face that wouldn't go away. I have 5 children and 6 grandchildren with another one on the way. They are what keeps me going! I also have one furry child that got me through the ordeal of my husband's death.

4) I was first diagnosed with Lupus in 2007. I've had other health issues though that are symptoms of Lupus I'm learning and think maybe that all the problems I've had the last several years is because of the Lupus.

5) I do have other autoimmune diseases. Besides the Lupus I have Fibromyalgia and Psoriasis. I've been tested for the Sjogren's but came back negative for it. Haven't ever been tested for anything else other then MS. Which I did not have. Parkinson's runs on both sides of my family so I'm praying that is one disease that passes me by.
 
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renalupie1 responded:
I live in Northwest Ohio I have always liked it here, but the winters are getting worse and as I get older, it sucks.

I am 44, but feel like I am in my 30's. Forties aren't so old now that I am in my forties! I move like I am in my 60's. LOL

I have been divorced for 16 years. I have one son. I have a boyfriend (2 years!) and am very involved with his 10 year old daughter.

I have been diagnosed with "lupus like" for well over ten years, but had issues long before that.

I have RA (mild), fibro, showing signs of sjogren's.
 
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leecat41 responded:
1. I live in Milan, TN and I guess I love it because I've never thought of leaving. lol

2. I'm actually 42 but never feel that old until I have symptoms and then I feel like I'm 100.

3. I am married to a wonderful man who is my rock and we, collectively, have four children that range in age from 8 to 20. lol

4. I've been diagnosed and un-diagnosed with lupus since 2004. I've finally come to terms that I probably have it. I've seen several doctors and only two out of the group think that I don't. I suppose majority rules even though I've not had a positive -ANA yet.

5. I also have Raynauds, which I didn't know until just not that it's an autoimmune disease. Ha! Learn something new every day. I've also been diagnosed with fibro. (Why can't you just have one if you have to have something? lol)
To do what is right is not always easy, to do what is easy is not always right.
 
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lupiesuzy responded:
1. Biloxi Mississippi - not by choice! Military brat all my life, but settled in Pensacola until I moved for a job. Getting used to Miss, but not loving it.
2. Just turned 31. I prefer the days I feel like a goofy five year old, but like everyone else here, I have days I feel like I'm 100.
3. Not married, doubt if I ever will be. Have two cats, Ben and Jerry.
4. Diagnosed September 22, 1999 (tattooed on my arm with a butterfly).
5. Raynauds, sjogrens, maybe developing a bit of psoriasis.
 
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renalupie1 replied to lupiesuzy's response:
I like the butterfly tattoo idea!
 
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lisaisweavebee replied to lupiesuzy's response:
I like the butterfly tattoo too!
 
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Kat_bet responded:
1. What stat doe you live in and do you like it? I live in North Carolina, and I love it. We get all four seasons, just long enough that you don't get tired of them. There's everything from beach to mountains, and the slower, friendlier southern way of life.
2. Age both actual and how old you mentally feel. I'm 53 years old, and often feel older than my 75 year-old mother.
3. Married/kids? I'm married for 30 years and still going strong. I have two grown kids; a son who is 27, and a daughter (also with lupus) who is 25. I also have two dogs, one of which is my service dog.
4. How long have you had lupus? I was diagnosed in 2004, bur, like most of us, I know I had it long before that. I had many symptoms by late in high school.
5. As lupus loves to throw a party, do you have any other autoimmune diseases? Yes, I have fibromyalgia. I also have mild psoriasis, that was basically mentioned once by my doctor & I ignored it, because I didn't want to add a dermatologist to my list of doctors. Didn't know it was autoimmune. Huh.
 
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Kat_bet replied to lisaisweavebee's response:
I like the butterfly as well. I've never considered getting a tatt, but I think I would like one modeled after the Walk for Lupus Now butterfly.
 
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anowlin replied to Lupylisa44's response:
Lupy, Where in Colorado do you live? I'm in the Springs. I love CO because of the weather, winters don't get near as cold as Chicago (lived there for 25 years). I also love Colorado because of the mountains and in the Springs, a 20 minute drive and you're in another world.

I don't look 59, but ONE gander in my direction will show a woman who limps and whose joints freeze. So when I stand up after just 10 minutes sitting, I hobble, I can't put right foot in front of left in front of right. There's no walking for about 5 minutes.

Mentally, MOST times, I'm sharp as a tack. There are the occasional fog periods; or sheer forgetfulness. My husband is always there to fill in the blanks.

No children. That's probably my greatest sadness in life but premature ovarian failure from lupus made children impossible. Lupus was such a thief there which is too bad; and I feel the BOTH of us would have made wonderful parents. Don't get me started on the losses I've felt for the last 30 years. Thank you, lupus.

I was diagnosed w/ lupus in 2002; before that, I had Sjogren's Syndrome. After the lupus dx, things were changed to SLE w/ secondary Sjogrens.

There's also epilepsy, pulmonary hypertension, osteonecrosis, several blood clotting disorders. But, a cardiac cath several months ago reveled clean coronaries! Some relief in that knowledge, but my cardiologist thinks that are other things wrong with my heart.

Other mixed connective tissue diseases. I understand Factor V is autoimmune, Sjogren's Syndrom, ITP, hypothyroidism; I'm sure there are others, but those are the 'frontrunners!' Annie
 
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leecat41 replied to lupiesuzy's response:
cool idea!
To do what is right is not always easy, to do what is easy is not always right.
 
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Lupylisa44 replied to anowlin's response:
Annie:

I'm just outside of Boulder. I know what you mean about the more temperate climate-it makes a huge difference! I lived in Detroit for 36 years of my life and it darn near killed me!

As for kids: I always wanted children, but didn't get married until I was 35 and by then it was too risky because my lupus was flaring pretty badly, then I had to get cytoxan which killed my ovaries. I look at how all the kids are these day,( by that I mean spoiled, entitled and rude) and I am glad I didn't have any, I couldn't have handled it physically or financially either. Everything happens for a reason and I figure that I wasn't meant to have kids. I am "Aunt Lisa" and godmother to several children and I am good with that. Plus my dogs are just like my kids!

Lupus is a thief, it takes and takes. For me it's all about trying to keep a positive attitude, albeit difficult at times, and be grateful for what I do have.

Lupylisa
With love, with patience and with faith, we'll make our way.
 
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TNDixChix responded:
Hello! This is my first visit to this site and it looked like a good place to start.
I live in Cleveland TN which I like quite a lot. I was born in TN and grew up in NC.
I am 42 in actual years, 16 in my head, and feel 60 most of the time.
I have been married for 23 years and my only child, a son, is 21.
I have offically been diagnosed with Lupus since Sept of 2009, but I have had Fibro since my mid-20's. I believe my Lupus probably started about 10 years ago, but was masked by the Fibro. It finally progressed enough that with symptoms and several ANA tests they made it "offical".
 
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deewalt2911 responded:
Hi, My name is Denise and I live in New York (upstate 15 minutes from Rhinebeck) Yes I like it because it reminds me of my original home which is the island of Jamaica. There are lots of trees, animals and farms. I turned 41 years old this year and I feel 41 years old. I often run back in mind and hide out at the age of 18 years old when I was invincible!! When lupus has its foot on my neck, I feel much like Im sure I will in 41 more years. I am married and I have one son who is 19; my daughter would have been 21 this year had she lived. I celebrate her by never forgetting to mention her because she was a potential member of this family and I will see her again I am sure. I was formally diagnosed with lupus early this year. I was diagnosed in December of 2009 but the doctor took it back after some of her tests were negative. She tried to convince me that a positive ANA and elevated SED rates along with Ig proteins that were off ; were all "normal". Anyway, the doctors are convinced that I've had since I was in my teens or maybe even before. I was formally diagnosed with "ndifferentiated connective tissue disorder indicative of lupus". What that means is that I have several overlapping autoimmune disorders; psoriatic arthritis, RA, lupus, sjogrens, raynauds and fibromyalgia.
I am happy to make all your acquaintances.


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