View Full Version : Just DX with Systemic Lupus

07-31-2004, 11:32 PM
I have not yet begun to deal with this. Im so confused and angry. The sad part about this disease is that you never know how its going to hit you. Im on pins and needles.

I went to the doc on friday and he said to me my labs were back. he proceeded to say that he doesnt believe in sugar coating; YOU GOT SYSTEMIC LUPUS AND THE DISCOID LUPUS WAS A SYMPTOM. I cant remember what he said after that; I just had this slight grin on my face and was just not hearing. I know he said that I have to be supervised and monitored every 3 months. Anyway, I ended up calling him the next day; how I drove home was beyond me. I dont even remember getting in the car. I have to face my family and tell them and I am really having a hard time. They just think i have Discoid Lupus which was my original dx. Gosh I just lost my sister 3 months ago unexpectedly and my brother just had heart surgery...Life can be so unfair. I refused to tell my mother. She is 70 yrs old; she just buried her eldest daughter, I can't see her suffer and worry about me during her last years.



08-01-2004, 07:59 AM
Angie, You have to be able to talk to somebody. I am scared too, but keeping it inside can make us sicker, I think. Maybe once you have talked it out with someone, it will be easier to share with your family. You need their support and understanding. I wish you luck!

08-01-2004, 08:24 AM
thanks Donna.

Im trying to find a good time and day and its so hard.

But I plan on telling my sister today; hopefully I can find the courage.

Thanks for responding

08-01-2004, 09:51 PM
Did you talk to your sister? If you did, how did it go? If you didn't....why? I will say a prayer for you tonight!

08-02-2004, 09:20 AM
Thank you for your support.

I finally mustared enough courage and asked my siblings to meet me at my sister's home. They were curious and anxious. They thought I was going to annouce wedding plans...lol Boy don't I wish!

Anyway, I needed the extra support; especially for my sister. We are very close and she is my best friend and mentor. Before I could say anything I was just sobbing uncontrollably. Anyway I finally said it, "I now have systemic Lupus!". They were devastated and shocked. We all hugged and discuss the disease and a plan of action. I just hated telling them and burdening them with this. As a family this year we have been through so much. I hate lupus and what it has done.

Basically, are plan of action is this:
get a second opinon
get some group counseling
we all decided to join YMCA (cardo, aerobics, water aerobic, etx
I will get a nutritionist beause I am 50 lbs over weight; due to eating..

So that is it for now. I will keep coming back here, because I have recieved lots of support from people who have responded and the replies that I have read for other people.

Thank you!

08-02-2004, 09:37 AM
Good for your family for coming together with a "plan of attack". You must have a great family. I've had SLE with kidney involvement dx for 8 months now, on pretty severe meds, but the support of my family and friends has made me feel like the luckiest girl in the world.

Might I suggest you all get involved with your local Lupus Foundation? Often, they have support groups, and I'm doing a Lupus walk fundraiser in a couple of months through my local organization, which helps me feel like I'm making a difference. Also, my family volunteered to be part of some studies to help identify Lupus genes, which will hopefully lead to better medications. There haven't been new ones developed for Lupus in almost 40 years! For people with kidney disease, there are not many options.

Good luck! I'll be thinking of you!


08-02-2004, 12:23 PM
Thank you for your response! Everyone on here has been so great!

How are you feeling? I donated a Kidney last year to my brother. It wasn't until a few months later that I got dx'd with Lupus. I feel very lucky to have the family that I have. They are very supportive. Thanks for the idea of joining the local Lupus Chapter. I would like very much to be apart of that. Where are you located? I would love to take part in a walk a thon for lupus. Maybe we can drum up enough people and get it national..., hmm I love that Idea. What do you think?

Getting back to you; how are you coping? You are also lucky to have a supportive family.. Yippee. Today feels like a new day! I hope that we can continue to exchange emails. Im ready to listen and write.

I hope to chat with you, have a good day and a great tomorrow!

08-02-2004, 05:35 PM
For those interested in national Lupus Walks. The Alliance for Lupus Research holds walks throughout the country. I participated in one this past April in Sarasota, Florida. Our location alone raised $90,000 for Lupus research. Please check out their website - Alliance for Lupus Research. We had a great time in Sarasota. It made me feel like I was fighting back! 8)

08-02-2004, 06:43 PM
Hey CK

Thanks I will look up the Alliance on the web today.

08-16-2004, 09:50 AM
I'm doing a Lupus Walk in October in Seattle, WA. There is also one in September in Portland, OR. The Pacific NW Lupus Foundation puts it on and most of the money goes toward local support. I'm really looking forward to it.

I'm doing well - my Lupus Nephritis is in a holding pattern that is ok for now. I see my Nephrologist about every two weeks - this time I got to go almost a month, because I was out of town, and then he was out of town! He was dissapointed, but I was kind of happy for the vacation from Dr. appointments!