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Posted 2/9/2008 2:44 AM (GMT 0)

Hi everyone,

 

I am 28 years old and I was recently diagnosed with Lupus.  This came after years of searching so I thought it would ultimately be a relief when they gave it a name; but I don't feel relieved I feel scared.  I had planned to attack and beat whatever it was that was making me sick, but now I realize that it will never go away.  The thought of feeling like this forever is terrifying.  I have been reading this site for a long time and it has often helped me feel less alone or like somebody truly understood, I thought I would finally introduce myself.  I started getting sick about 9 years ago, my husband, family and friends have been very supportive but it’s nice to chat with people who experience similar things, so thank you all.  I 

Posted 2/9/2008 2:52 AM (GMT 0)
Hi, catzz

Welcome to the site...You are not alone and it has taken a lot of us years of doctors before diagnosing.

My saying is just enjoy what you can....the rest will came later
Posted 2/9/2008 4:23 AM (GMT 0)
Welcome Catzz, Glad you decided to start posting. I'm sure that you can give us some tips and everyone here is helpful when you have questions. You won't always feel like this. Sometimes you will feel better and sometimes you will feel worse (sorry). But you will learn how to function w/i your new limitations. This forum is great for helping us keep things in perspective and there is lots of encouragement here. Glad you joined us!! Blessings!
Posted 2/9/2008 3:34 PM (GMT 0)
Greetings, Catzz!

It is nice to know we can be encouraging and helpful to you and, possibly, others who have not come forward yet. How you deal with this disease can certainly have an impact on how you feel. Like Rosie said, you will feel better some days and worse on others. This is, probably, the most annoying part of lupus and RA for me. Just remember to pace yourself and listen carefully to your rhuemy who will help guide you through the ups and downs. And, most importantly, remember that you are not alone in this. We will be happy to answer any questions and share our experiences to help you adapt to these ups and downs.

Again, welcome, and my prayers are with you!
Posted 2/9/2008 5:36 PM (GMT 0)
Hi Catzz and welcome. I'm really sorry to hear how long you have been sick. Getting a diagnosis can be both a bit of a relief but it can also be overwhelming, especially when you have a disease that has no cure. Don't give up hope though, like the others said, you can go through periods of time where you will feel pretty good and there is always the chance of remission. Hopefully your doc will get you on some meds that will help to decrease your symptoms. I'm glad you have found this site helpful - we have a great group of really supportive people here. I agree with you that it is really nice to come to a place where people really do understand what you are going through. Please ask any questions you have. Take care and I'm glad you joined us.
Posted 2/9/2008 8:38 PM (GMT 0)

Hi Catzz, I like you had a long road before I was finally diagnosed. Unfortunately my family and most of my so called friends decided I was making it all up to get attention. My husband was the only one who actually saw what was going on. I also had a pretty good idea what was wrong with me, given the fact autoimmune diseases run in my family and that the student doctors all seemed to think lupus fit my situation only to be shot down by their supervising doctor(s) all because my ANA was negative. I actually had a single positive ANA test only after treatment began and that was very low positive. I also got my diagnosis 2 years ago when I was 28, though a few months later I turned 29. Treatment will help you feel better. You will have good days and bad days, and you will need to learn to listen to your body and what your limitations are. I was in my early teens when I met 4 of the criteria, but have never really been what most people consider healthy or normal.

I suggest you look at The Lupus Book by Dr Wallace. It might help you understand more.

Finally, WELCOME to our little support group that has for some become a substitute for family at times.

Posted 2/10/2008 1:04 AM (GMT 0)

Hi Catzz...

Welcome!  Glad you posted...but sorry you are not well.  It is all overwhelming at the beginning...but try to learn as much as you can...the people here are a WONDERFUL resource.  I was diagnosed in July, 2007 and joined this community in October 2007.  I have posted many questions and learned so much here.  And, then, there is the occasional "vent"...which all of us need to do.  And, you won't get judged...everybody here has "walked in those shoes".

You will have your ups and downs...  My best piece of advice is learn to pace yourself and listen to your body.  When you are tired - rest.

~Kim 

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