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New Member

Date Joined Sep 2008
Total Posts : 4
   Posted 9/8/2008 2:57 PM (GMT -6)   
Hi there everyone. I'm a new member, posted a couple times under Carol's post, so I should do the introduction thing so I don't just crash the board as a stranger.

I'm 46, have SLE, was dx'd in summer 2005 after 1.5 years of observation. I'd had symptoms for 8 to 10 years, but never pursued a cause, at least until I couldn't ignore it anymore. I had joint, neuro, skin and bloodwork abnormalities. I'm on Plaquenil and topical steroids, and have been on inhaled steroids from time to time.

Within the last couple years I was dx'd with SPAH, secondary pulmonary arterial hypertension. It's a rare but serious complication of lupus (even more so of scleroderma, which I don't have). It was caught early, though the effects on the heart were already apparent, as it overworks the right side of the heart. I was able to really slowly start on an exercise program and creep up to jogging for 40 minutes 3 to 4 times a week. Something is released during exercise that lowers the pressures in the pulmonary artery and has staved off this complication for now. This was a big huge answered prayer by a God who is clearly powerful enough to do anything. BTW, this was incorrectly diagnosed as emphysema by my GP, even tho I'd never smoked. Then I went to a real doctor, a pulmonologist who actually knew what he was doing and knew something about lupus and its effects.

In life, I'm an RN in newborn intensive care for 21 years now, still working night shift--I know, bad idea, but it works out with the family. I have four kids, ages 9 to 19, and I home school the 9 and 13 year olds. I love animals, and have a website with pics of some of my more exotic ones at I'm also a pretty poor excuse for a financial secretary at my church. blush

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 9/8/2008 6:16 PM (GMT -6)   
Hi Di,
   Welcome to the forum. I'm sure the others will be along soon to welcome you as well.
   It sounds like you have been through alot. I'm glad to hear you finally got the right dx with the right treatment plan to help you.
   You have definately got you hands full with working full-time, 4 kids and being sick. I hope you find time to rest and do something for yourself in your busy schedule.
   Just wanted to say hi and hope to see more posts from you soon. Take care and keep us updated. You will be in my thoughts and prayers.
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 9/8/2008 7:49 PM (GMT -6)   
Hello Di,

Welcome to the forum!!

Thanks for the great introduction. Nice to get to know you and I'm glad you found us!!

I'm sure we'll be "picking your brain" from time-time! ha haaaa I hope you find some good info here as well!!


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 9/8/2008 9:23 PM (GMT -6)   
Hi Di, it's carol. I feel like I kind of know ya already lol. Wow you got a lot going on. But it sure sounds like a great life if ya don't weaken. I'll have to check out your website. The past 4 months I have nursed 2 baby birds from 1 day or 2 old until they finally were released. Than a 2 1/2 week old kitten. today was her first day of eating food instead of just her little bitty bottle.( I was so proud)! My brother said I should just open a sanctuary. lol. Unfortunately on my bad days they all still need attention and they don't care if I've had my coffee yet or not! Anyway I'm so glad you introduced yourself and I look forward to getting to know you better.
welcome carol

Possible scleroderma.  stage 4 COPD,  Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
 Did you ever know that your my hero?

New Member

Date Joined Sep 2008
Total Posts : 4
   Posted 9/10/2008 8:57 AM (GMT -6)   
Thank you for the nice welcomes!

Carol, I have osteoporosis too, dx'd at 38. Actually, as of the last dexa, I was just barely back into the osteopenic zone, so that was good. Need to get back on Boniva so my MD can relax...

Babs--I don't work full time. I work two 12-hour shifts a week, but because it's night shift, it takes about 3 days to recover. I'd be much better off doing full time days, if only that worked with my family. I really don't feel like I've been through that much. I had 40 years of good health--some people never have even one. Working in any intensive care unit kind of gives you a whole new perspective on things.

Veteran Member

Date Joined Mar 2006
Total Posts : 2570
   Posted 9/10/2008 9:16 AM (GMT -6)   
Hi Di, and welcome to the forum,

I'm glad you finally found a good doctor. That seems to be a common thread around here and many of us share your frustration at trying to get an accurate dx or any dx at all for that matter.

You must have the energy of two people to manage all that you have on your plate and I think it's great that you don't let anything get in your way. I can tell that you'll be a great asset to our forum and I hope you'll stick around. Thanks for sharing.

Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin

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