View Full Version : New to lupus and website

10-16-2005, 02:37 PM
Hello - I happened upon this website about 6 weeks ago in the middle of doing some research. I am currently between a lupus and/or rheumatoid arthritis diagnosis, and I am 28 years old. I just got married 4 months ago, and had spent all my life as a ballet dancer up until 2 years ago when the "back and knee pain" got to be too much. I lost my grandfather 4 weeks ago, and I'm pretty sure that I'm driving my new husband mad with "everything" that is going on with me! I've been reading a lot of books that encourage joining a support chat group, so here I am. I've read a lot of the postings, and many make me cry - I know I have a very mild case of this "rupus" as my doctor called it at my most recent follow up appointment. I guess I don't really have much to say or many questions at this point - I think I'm just looking for words from those of us that have been here and are doing this. Thanks!

10-16-2005, 04:57 PM
Many gentle hugs of welcome, trevi!

Here, you're among many many people who understand the frustration of not quite having a diagnosis, of not quite knowing what each day will bring.

A website that may help your husband understand what you are facing with fatigue is www.butyoudontlooksick.com , on it, look for the "spoon theory" - I've used that repeatedly and it says so much!

Having been a dancer, you'll understand the importance of gentle stretches and keeping your body as gently exercised as you can. Follow your doctor's lead on that, but do your best to stay relatively active. It does help overall.

Listen to your body - eat appropriately. What that means for you may vary. Some swear by diets low in nightshades (potatoes/tomatoes), others on no gluten or no wheat. For many, such changes lessen pain. I eat all of those items, but I've cut all meats except seafood from my diet, and try to eat very high fruit and vegetable. For me, that has worked well

Also, listen to yourself as well - if depression persists, talk to your doc. That is a clinical, chemical condition - not "crazy".

My case of lupus is mild as well - blessedly mild. I've learned so from those on this and other boards, and am sure you will as well. We can live happily and successfully for many many years - I read once that over 80% of us live a "normal" life span - that's a good set of odds.

10-17-2005, 04:50 AM
Welcome!! Glad you found us, but sorry you had to. It's been awesome for me knowing I wasn't alone or crazy and that others do understand what I am feeling. {{{HUG}}} I can totally relate to the limbo thing, it took a while to get a diagnosis. Sounds like you might have a good dr tho that is willing to check everything. That's a good thing.
Please try looking at that site Hatlady mentioned. The Spoon Theory is THE best description I have ever heard about living with this.
Glad you are here, stop by often. {{HUG}}

10-18-2005, 09:58 AM
Hi and welcome Trevi;
I also wanted to take the time to welcome you to our forum and to our family. I agree, wholeheartedly, about the spoon theory (I even wear one of her spoon pins) and I also use the theory as a form of barometer when explaining what kind of day I am having!!
You will find that everyone here is generous, understanding, welcoming and will offer you comfort and support. :lol:
I wish you the best and again...welcome

Peace and Blessings

10-19-2005, 10:21 AM
Good morning, All!

I want to thank you all for the super warm welcome...it really touches my heart, and I am very thankful. I will certainly check out the spoon theory tonight when I get home from work...actually, after I get home from my first yoga class (after work)! Hopefully the gentle stretching of yoga will be helpful for me.

I've actually been trying to get in to see a nutritionist, but I think the one I picked isn't going to work for me. She's a champion at phone tag, and at this point, even over the phone, I don't feel very comfortable with her. But I have heard that diet has a lot to do with how you feel, so I'm certainly going to give it a shot.

My other big concern at this time is my rheumatologist. I feel that he doesn't really listen to me. At one appointment, I was telling him about the knee pain I have during the night, and not one minute later, he turned to me and asked, "So, any pain in your knees?" I know it's trial and error in finding a good doctor, so my search continues!

Again, thank you all for responding, and for the encouragement - you've really made my day!

10-19-2005, 04:57 PM
Had to laugh our loud!

"So, any pain in your knees?"

Oh my. Yes, the search continues!