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Newbie with lots of questions

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Posted 3/23/2008 4:02 AM (GMT 0)
Hello, let me introduce myself.  I'm Teresa, 28 mom to a darling almost 18 month old and wife to a great hubs.  I'm an animal nut and raise JRT's and Miniature horses.

I honestly haven't felt like myself since I had my son, jsut the run down achy feeling.  And I put it off as just being tired and adjusting to being a new mom.  Well after a year I went back to my doc she ran every test under the sun and I just got my results back.  I came up moderatly positive for Lupus.  She has put me on prednisone (as well as other antibiotics cause when I went in to meet with her about the results I found out I have walking pnuemomia), and I have to go back in a month for a recheck of my levels to see if I'm still positive. All she'd tell me about Lupus was that it can make your joints swell up, and if I came back positive then I'd have to meet with a rumatloigist.  Iv'e tried to look different stuff up on the net but can't find much out.  SO I googled a forum and found this one. And hope that there may be someone else that has gone through this and can offer any adivce? We aren't (or weren't) done having children and would like one more at least, but I'm worried about it now.  Also how long does it take before you get your energy back and quit feeling like crap??? TIA for anyone's help.

Posted 3/23/2008 2:11 PM (GMT 0)

Welcome Teresa,

Trust me, everyone here knows your frustration. The best website I have found for information is www.lupus.org. They have a ton of info you can read about lupus, and also have a free e-news letter you can sign up for. They also have a list of books that are good to read so you can educate yourself. I just wrote down the names and went to check them out at the library. They were very helpful, and prompted me to ask questions I never thought of asking. Sometimes, doctors just don't want to tell you things because they think you can't handle or understand what they are telling you. Don't be afraid to demand answers. You should be able to have another child, but you will be closely monitored. I had a beautiful girl after I found out about my diagnosis. As for feeling good again, noone can give an exact answer for that. It depends on you taking care of yourself and what meds your doctor prescribes for you. Good luck with your next appointment, and let us know how it went.

Posted 3/23/2008 9:57 PM (GMT 0)
Hi Teresa, welcome to the group. Seeing a rheumatologist is a good thing. Just be sure to get one that knows about autoimmune diseases.
Pnemonia will cause you to feel the same symptoms. Being achy and tired. Who knows how long you have unknowingly had that. On the other hand If you test possitive for antinuclear antibiodies it could be caused from somthing or it could be caused from nothing. Some people test possitive and are sick some people test negative and are sick. That's where keeping good notes and having a good rhumy really helps out. It can take weeks to years to get a proper diagnosis. I would think that you should start feeling a little better with the steroids and the antibiotics in short order. predisone is a nasty drug but has saved many lives. What dose do they have you on? I have a horrid time trying to sleep on anything higher than 10mg. Not to mention the incredible munchies!
I know it's hard to do but try not to get to stressed at this point. If you do have Lupus stress is not a good thing. Of course we all have stress but try not to worry if you can help it. Let's just hope that you don't have anything more than a long over due need for antibiotics.
If you have other questions feel free to ask. I'm sure others will come along with other links for you to check out.
good luck
keep us informed
carol
Posted 3/23/2008 11:06 PM (GMT 0)
Welcome Teresa. I see you have gotten some good information from mygrljes and Carol. Trying to figure out if you have lupus can be a long and frustrating process, but hopefully docs will be able to figure this out for you pretty quickly and you won't be left in diagnosis limbo for too long. Lupus can be so hard to diagnose because the symptoms are present in a lot of illness and there are no specific blood tests - just blood tests that help in making the diagnosis. There is a lot of good information about lupus including lupus.org, but it can also be pretty overwhelming. Most people with lupus can live fairly productive lives, although a lot of us have to slow down and make some adjustments and re-set priorities. I used to be really into running, but haven't been able to do that since I got sick. It was pretty hard to deal with at first, but over the years I have found other things that I enjoy doing. Getting on the right combinations of meds that works for you is key in starting to feel better. Please ask any questions you have - we're here to try to help. This is a great group of people here who will be here for you through all the ups and downs of this whole thing. Take care and I'm glad you joined us.
Posted 3/24/2008 12:06 AM (GMT 0)
make sure the rheumetologist you see is a lupus expert. Not all rheumys are experts on lupus.
Posted 3/24/2008 2:01 AM (GMT 0)
Greetings Teresa!

I am so happy you found us. I see many of our members have already given you great advice. I had a positive ANA when I was in my early thirties and, then, I wasn't officially diagnosed until I was 43! And, when I was diagnosed, I had a negative ANA.

Hippi is correct, everyone reacts differently to lupus. Some have it worse than others. I know that I have made a lot of changes since I was diagnosed and it was depressing at first. Now, three years later, I am doing better and I have found other projects and activities that I enjoy.

You have found the right site for your questions. Please stop by often! My thoughts and prayers are with you!
Posted 3/24/2008 5:41 PM (GMT 0)
Thanks guys.  I tried the lupus.org site and geese couldn't make heads or tails of it, the message board I couldn't get anyone to reply to my posts.  I'm glad I foudn this one.

I sure hope I don't have to slow down too much, I love being outside with my little hroses and yard and playing with my son. Although latly I've been perfectly fine to jsut sleep. lol But that's getting annoying really fast, as nothing is getting done, not to mention I've got an adorable little mini foal out in the pens that needs to be messed with.

She currently has put me on prednisone.  I took 4 pills for 3 days and am on the 2 pills for 3 days right now, then I'll go to 1 pill for 3 days and then a 1/2 a pill for I think it's 12 days.  They are 10 mg each.

I've had the munchie since being on it, which is fine I'm a bit underweight at 5'2" and 100 lbs soaking wet, so could stand to gain 20 lbs or so. LOL The sleeplessness hasn't hit me yet though.

Thanks again for your help, I'll be sure to find a rhumatologist that knows and will def ask her about it when I go back.   

Posted 3/24/2008 10:32 PM (GMT 0)
Hi Teresa,

   Welcome to the forum. I'm glad you found us and your educating yourself on lupus. Like the others said, we are all different in our symptoms and reactions to meds. I hope you find a good rheumy and get on the right treatment plan that will help you feel better.

    The horses sound wonderful. My brothers and I had horses when we were younger. You have to be very careful of the sun.  If your outside make sure its early in the morning or late evening with good sunscreen and protective clothing on. I was always an outdoor person as well and that has been the hardest thing for me to deal with.

   Ask all the questions you want. We will help you in anyway we can. Please take care and keep us updated. You will be in my thoughts and prayers.

                                                                  Babs

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