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04/28/2012 06:08 PM

New to the group and a little scared.

mlgirl
mlgirl  
Posts: 14
Member

Hi, I have been diagnosed with SLE for 5 years and it just keeps getting worse. I've been on just about every treatment and currently am taking Cellcept and have never since day one been off of prednisone. I have just been approved (by my insurance) to start Benlysta. I have two children and a very supportive husband. Just so worried about the toll it is taking on all of us. Is life ever going to be normal again? How do you all cope?
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04/28/2012 07:21 PM
mumeva
mumeva  
Posts: 6295
Group Leader
I'm an Advocate

Hi migirl....Welcome to this fantastic support site where you will meet some wonderful, caring and compassionate members who know what it's like to live with Lupus on a daily basis. There are several members here that are taking Benlysta and having great success with it........one of them is another group leader (NurseBlack) you can go onto her profile and either send her a PM (Private Message) or you can click on her profile and read hr diary....she has been keeping a diary of her Benysta treatments. I am glad to hear you have great support at home as we do need this, this site will also give you much needs support from those who are living with this illness and understand the daily struggles. Any time you need to vent, cry or just to share or ask questions please feel free to post often.

Eva


04/28/2012 07:54 PM
redhairali
redhairali  
Posts: 3844
Group Leader

Hi and welcome, look like Eva already gave you great info. This is a wonderful group and I hope you post often.

Alison


04/29/2012 03:58 AM
hawakeita
hawakeita  
Posts: 1913
Senior Member
I'm an Advocate

Welcome! You've come to the right place. Hope to see you here often. We are all here for you.

04/29/2012 04:01 AM
hawakeita
hawakeita  
Posts: 1913
Senior Member
I'm an Advocate

As for your question about coping. I have no idea. I just know that each day, I just keep going. I have a young child at home, and no matter how much I love her and think she's amazing, she completely exhausts me and brings me to my wit's end. My husband is not around much, but will finally be graduating and I'm hoping he'll have more time to help out with her and housework and stuff.

A woman came and stayed with me for a few days. She was in transit and stopping through NYC and needed a place. I love having people over and staying with me. Somehow I just think it helps. Her reaction to watching me deal with my child was pretty priceless, "I have no idea how you get out of here each morning to get to work on time." And she witnessed it, and she has no idea, so how can I have any idea? We just do it, I guess.


04/29/2012 06:17 AM
Sharlene
 
Posts: 502
Member

That sounds like the answer I gave my present doctor when he looked at my hip x-rays after 18 yrs. of Prednisone, but no Fosomax or extra Calcium. He said, "I don't even know how you walk." I said, "I just do." (It broke shortly after.)

04/29/2012 12:14 PM
hawakeita
hawakeita  
Posts: 1913
Senior Member
I'm an Advocate

OMG - I laughed so hard reading Sharlene's response that my little girl asked me, "Mama, what happened?" I love this site. It really keeps me going. Maybe that's the answer to the cope question - keep coming here, and being able to find humor somewhere. Smile

04/29/2012 02:57 PM
okeesgirl
okeesgirl  
Posts: 29
Member

Hi, I am also new to the group and new to being diagnosed with lupus (it has always been there looking back); anyway, I want to say to you that we have a great challenge in the form of lupus!! But we can engage in the process of creating our own unique sense of normalcy. We can also look for creative ways of coping. But having recently started my own process of making sense of my life since lupus, I can say to you that there is hope. Just hang in there, seek help and support in positive places and know your needs, do let anyone define or dictate those needs to you. Also do not let anyone contribute to you second guessing yourself or feeling guilty. You have lupus; you ... not them. Willing to talk whenever you need support. I also have SLE by the way. Recently diagnosed; less than three years.

04/29/2012 03:35 PM
Looopie
Posts: 2272
Senior Member

I agree with you okeesgirl. Don't let people dictate what you ought or not to do. After all, you have lupus, not them, and it is your body. How could anyone know how you feel or doubt how well or sick you are !

04/29/2012 07:24 PM
mlgirl
mlgirl  
Posts: 14
Member

Wow I was worried no one would answer. I guess I've been trying to live like I wasn't really sick. It's so hard when you (more or less) look well on the outside for people to understand. I'm now 7 weeks post-op and spent the last 4 weeks almost completely in bed. Just getting up and moving drains me. I suppose the fact that I will start infusions in about 2 weeks has me reevaluating myself. It seems so big things keep getting worse, my kidneys are now involved. I just feel a bit overwhelmed, I appreciate everyone listening.
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