Lupus

[digideb]

I was just diagnosed with lupus yesterday & was curious if anyone else here deals with this disease. If so, any advice or resources you'd care to share? If not publicly, feel free to PM me. Thanks!

[Megan Turnidge]

I'm so sorry, Deb. I don't have any advice, but I just wanted to give a (hug) and I hope your lupus is well-managed and doesn't flare up on you too much. :hugs:

[digideb]

Thanks Meeegs! I definitely need hugs! :)

[MommaTrish]

My doctor has talked to me about it and going through tests for it if the medicine I'm on doesn't manage all the pain I've had.

[scrap2day]

Sending {{{hugs}}}.

[Libby Pritchett]

*HUGS* I haven't had any experience with lupus, but my friend Heather has. I'll direct her to this thread.

[newfiemountiewife]

Debster, I know you've been going through a heck of a time lately, and though it might not be the best outcome, I'm partially glad, because you have something to go on now. It must be somewhat of a relief that you know what's going on now!

Lots of hugs to you...love you lots!

[digideb]

Trish, I really hope for your sake that it is not lupus. I'll be keeping you in my prayers!
Thanks Libby. I'll be looking forward to seeing what she has to say. :)
You're absolutely right, Jamester! It's a huge relief to have a diagnosis!! & love you too!
Thanks for all the hugs! :wub:

[CA Dreamer]

Deb, I am so sorry to hear this news. Praying for you. Sending you hugs. Hoping there is some peace in having a firm diagnosis.

[g8rbeckie]

I'm sorry Deb :(

No advice from me, just here to share a few {{{{{{{hugs!}}}}}}}

[kresta]

I'm so sorry, Deb. Lots of ((hugs)) & ^prayers^.

[Sarah8914]

Debster, I know you've been going through a heck of a time lately, and though it might not be the best outcome, I'm partially glad, because you have something to go on now. It must be somewhat of a relief that you know what's going on now!


That's what I was thinking too. Some answers at least!

I'm sorry though, I don't even know much about it, but now I'm going to look! love ya girl!

[LenaGardner]

Oh wow. I am so sorry Deb! I have had joint pain now for 7 years and with every new flare up/new doctor, etc they re-test me for lupus and RA but all the tests come back negative every time. I was finally diagnosed after 5 years with NSRRA (non serum reactive RA). I don't have any advise for you but I do know what a relief it is to have a diagnosis no matter how unpleasant it is. Much easier to fight when you know the enemy. (((hugs))) sweetie!

[Darcy Baldwin]

aww, Deb :hugs:

I know it's not what you want to have, but I know it's a relief to have a diagnosis so you can fight something you know..instead of something unknown.

[adrianka]

*hugs*

I agree that it's better to KNOW what's going on. Been through a inexplicable pain history some time ago and the most frustrating thing was not to know.

*hugs some more*

[mommy2twins]

Big hugs to you Deb! I was also recently diagnosed with an auto immune disease called wegeners granulomatosis. It affects the small blood vessels. The disease affected my sinuses, lungs and kidneys. I spent pretty much the month of January in the hospital. I am on medication (steroid and chemotherapy drug) which is taking it's toll and my body is still adjusting to it all. Auto-immune diseases SUCK!!! I have my good and bad days. I know I don't have the same diagnosis but I can be here for support or someone to vent if you need - PM me anytime! I am sure we are feeling alot of the same rollercoater emotions. Like others have said, you have a diagnosis now and the dr's can work towards treating it. I will keep you in my prayers for healing and strength!

[joelsgirl]

So sorry Deb! I hope you are able to get some help for your pain.

[digideb]

Thank y'all SO much ladies! Y'all are all such an encouragement! Thanks for all the hugs & prayers! They mean the world to me!
mommy2twins, I don't even know your first name. lol But, I just wanted to say thanks & I am so sorry you're having to deal with that! Yes, it is definitely hard physically, but the emotional effects are just as strong! I'll be praying for you as well!

[Leah]

Deb...my Mom was diagnosed with Lupus 6 years ago. That was an awful year for her. She's never had a year like it since though - almost as if it went in to remission. She has the occasional lapse, but it's not as severe.

Once they found the right meds, it's been manageable.

My parents are away right now until the end of March, but I'll see if I can ask her the name of the book that she found really helpful.

[digideb]

Leah, thank you SO much! I'm sorry your mom has to deal with lupus as well, but so glad she's doing pretty well! That's one thing the doctor told me, is it is a disease of flares & remissions. So, that makes total sense. I'd love to know the name of the book. There are SO many out there!

[mommy2twins]

Oh sorry I did not put my first name. It's Dawn. I don't post much but I really wanted to respond to your post.:)

[digideb]

Oh no problem. Thanks, Dawn! :)

[deepounds]

Deb, I'm another one who has no info to offer, but I AM sending you a boatload of ((((((hugs)))))). Hang tough!!

[digideb]

Thanks Dee! :)

[Jazz2000]

Big hugs for you Deb! Sorry I can't offer you any advice. What I do know is that there are several types of Lupus. I had a friend that was diagnosed - she found out while she going through IF. I have a blood clotting disorder and I know they tested me for one type of Lupus b/c it causes blood clots.

[DawnMarch]

(((Hugs))), Deb! I'm sorry to hear you are having to deal with that. I hope they will be able to get it managed quickly!

[~Julie~]

I have no advice but wanted to give you hugs.

[sevenupps]

I'm sorry, Deb! I haven't checked in so I didn't see this thread until tonight.

I was diagnosed with Lupus a little over two years ago. A place online that I found that can answer a lot of your questions and that can educate your friends and family is The Lupus Foundation of America (http://www.lupus.org/newsite/index.html). It helped me a lot when I was first diagnosed and had tons of questions.

Another cool site is But You Don't Look Sick (http://www.butyoudontlooksick.com/) It has some great insight into dealing with chronic illnesses. The article that Libby and I love is The Spoon Theory (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/)
This is a great way to explain to others about the fatigue and dealing daily with Lupus or other chronic diseases.

Do you have a good doctor that listens to you and you feel comfortable with? That is so important! You want to take the least meds for the most relief and having a doc that will help you do that is invaluable.

Also the advice you will get about eating as healthy as possible, exercise, and plenty of rest is all true. Every little effort you make helps you feel less like the Lupus controls your life.

The hardest thing for me was admitting my limitations to others, and myself. Taking care of yourself is really important but that is sometimes very hard, as I'm sure you know. PM me if you ever need to vent! I'm a good listener and I probably have been there. :D

(((((BIG HUGS!))))) Take some time to let it all sink in. If you need me, just let me know!

[nanienamou]

I just saw this. :( I have no advice, but I send you positive thoughts.

[digideb]

Thanks ladies!
Heather, I'll respond to you via PM.