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Ruby
11-28-2006, 09:53 PM
Hi, new to this website. Have probably had SLE all my life, but diagnosed 4/05 after being sick for a few years and had a stroke. I'm 41, have two kids and a wife. Been active with my children's schools..one boy with cerebral palsy 11, and active daughter 8...PTA mom, etc....have a supportive husband and only learned about this site this week.

On lots of medications, but thankfully since being diagnosed have not had any long bouts of illnesses...only short illnesses as I work very closely with all of my doctors. My stroke caused me to lose some perriferal vision in my left eye, but luckily can still see enough to safely drive...no speech or motor loss from my stroke...SLE related.

When I was sick for a few years, I just ignored all the symptoms...If I had only read or known about the symptoms of lupus, I could have diagnosed myself as I had over 9 of the symptoms. Butterfly rash, discord rash, sick and fatigued for months and years....fevers, etc....

I think it's a blessing for me though because now I know why and what to avoid....stress, sun, and exposure to germs. I was a heavy volunteer in the schools working with many children and other parents, now I just take it easy, and pick and chose what I do, and with who.....and where...conditions of the area where I volunteer...make sure I don't have too much exposure to children as my team of doctors have stessed to me I have to limit my time in the "germ factory" of being in the schools.

Glad to know of this site...more local. Thanks for having one here....
Take care,
Ruby

MARYCAIN
11-29-2006, 06:40 AM
I hope you will feel at home here! :)

Saysusie
11-29-2006, 10:04 AM
Hi Ruby :lol:
I am glad that you've joined us. Like many of us, you have suffered with symptoms long before you were officially diagnosed. I can relate to trying to be a mother, wife, employee etc. while dealing with the ups and downs of this disease. However, I am very happy that you've found the importance in moderation and in avoiding those things that can lead to a flare.
You will find many understanding, kind and informative people here and I hope that we are able to provide you with the comfort of knowing that you are not alone!
Once Again...Welcome
Peace and Blessings
Saysusie

Flowermom
12-14-2006, 11:12 AM
Hi Ruby,
I'm from SF too and very active in school w/both of my girls. I'd have to say being around the kids doesn't necessarily make your lupus worse, even though they are petrie dishes. I think you might consider staying close to your kids, they love it when we're there at school and it makes you feel good too. I'm sorry about the lupus, I was diagnosed in '95 but really probably had it for 9 years previous to that. Most doctors thought I was just depressed (which I was because I was always so tired!). Now I blend my Eastern and Western Meds together by going to acupuncture (I know a great one on Valencia and taking some meds from my doc at UCSF. I pretty healthy at this point and have been since my first daughter was born, 7 years ago. My little girl is 5 1/2. The hardest thing for me right now is being tired and not being able to play with them as much as I'd like. In fact it kills me when I'm laying in bed and my older daughter mentions I'm always laying down. My husband is sweet he takes them out on the weekends and keeps them busy and happy. I couldn't put my outside ornaments up this year which disappointed the girls, but, oh well it could be worse.
We have a great support group here if you ever need it, run by Barbara Dangerfield and held at Kaiser on Geary. Take care and Happy Holidays!
Tracy

Ruby
12-14-2006, 05:23 PM
yes, this is a great website and i feel good to have a local one.
Before I was on the Uk version but it's nict to interact with local people. I've been to several lupus support groups at Kaiser and was able to volunteer at the lupus walk with my daughter.

Have tried accupuncture but not TCM as of yet. Tired of all the pills I'm on and don't like the taste of TCM but right now I feel good and don't want anything extra.

I love volunteering at school..both my kids are in SFUSD and I stay as active as my health allows and keep my distance from the kids at school and make sure I have personal space to feel safer from catching any germs because I was like a sponge and caught every virus from being in the building.

I do what I can and life is so much better for me now that I have been diagnosed because my health can be better monitored and managed with the medication and have only been sick a handful of times and shorter duration. Previously before being undiagnosed, unmanaged, unmedicated and months after month of being sick for several years.

Take care and hope to hear from you again. Happy Holidays! :wink:
Ruby

Saysusie
12-18-2006, 08:38 AM
Hi ruby :lol:
Yes, I imagine that most of us can relate to being glad to finally have a diagnosis and being put on treatments to manage our illness. It feels good to know that we were not losing our minds, that there was truly something wrong with us and it has a name and has treatments.
It is funny how we celebrate that isn't it?? "What a relief to know what I have and to be able to do something about it!!"
I am happy that you can continue to volunteer and that your sick days have been reduced!! I wish you the very best and hope that you continue to join us here as often as you like!

Peace and Blessings
Saysusie