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marje526
11-05-2008, 10:01 PM
Hello everyone!! My name is Marjorie and I'm 29 years old. I've been diagnosed with lupus at the age of 15. I've had 2 really bad flare ups that I almost lost my life. I've been through chemotherapy and I am on tons of medications...It's been 8 years since my last flare up so right now the lupus is on remission and things are pretty good but the lupus affected my kidneys and now I'm on dialysis which I started last year. So now I've just been struggling with the fact that I have to go to dialysis 3 times a week. which I hate. Life has been a struggle dealing with this illness. I don't know who I could talk to that would understand the way I feel. Lupus changed my life completely not only on the inside but on the outside. Being on prednisone, made me gain weight. so now I have stretch marks on places I don't want, I bruise easily and everywhere so I'm not able to wear the clothes I want because I'm embarrassed what people will think or say. It just really sucks cuz I don't have the confidence that I used to have. I just want to be able to meet people in my area (san jose) who know or understand the way I'm feeling. :?

Saysusie
11-06-2008, 01:15 AM
Hi Marjorie :lol:
I am not in your area, but I completely understand how you are feeling. To be so young and have to deal with so many health issues because of Lupus.
I know this is no comfort, but you should not let what others think about you determine your self-worth or your beauty. There is no single person on this earth whose body does not have flaws. We cannot deprive ourselves of those things that make us happy because we think that we should be flawless or because we are concerned with what others think. Those other people do not put food on your table, they do not pay your rent, they do not drive you to the hospital, they do not clothe you, and they do not comfort you when you need it! Therefore, what they think is truly insignificant!
Now, what you think is tremendously important! So, I say...Wear what makes YOU feel good and what is comfortable to you. Now, bear in mind that with Lupus (even in remission with Lupus), you MUST avoid excessive sun exposure. For most of us, this means covering our bodies from head to toe. In the summer, we do this with light weave, loose fitting clothing. But, we are pretty much covered up all of the time. This is out of necessity, not because of what others think of our bodies.
I know that the weight gain with Prednisone can be depressing. But, the symptoms that we suffer without the Prednisone far outweigh the weight gain. So, we take the lesser of the "evils", so to speak!
I do not have much experience with dialysis, so I cannot offer you much comfort in that area. I can only tell you that I, and everyone else her, truly understand how this disease can completely change your life. We try very hard to make some of those changes positive ones. It is easier when you find people who are understanding, supportive, comforting, and informative. You've found all of that here! Others will be along to give you their support also!
Welcome to our family

Peace and Blessings
Saysusie

KathyW1958
11-06-2008, 04:03 AM
Hi Marjorie,
Welcome to the site. Saysusie is right. Don't feel like you have to be ashamed of our body and don't worry about what others think of you. Like Saysusie said everyone has flaws, so they have no room to judge you. I am sorry to hear that the Lupus damaged your kidneys. Are you on a transplant list? I hope that you keep posting.

Hugs,
Kathy

marje526
11-06-2008, 06:31 PM
thank you both for understanding how I feel. I guess, I feel this way because I never really got to enjoy life since I was always getting sick and now that I'm getting older I still haven't found the right person who will accept me for what I am. I want to be able to get married and have kids but I don't think I can have kids. I wish I could meet people in my area that feel the way that I feel. Do you know any support groups or local lupus groups in my area?

frekkuls
11-06-2008, 06:40 PM
Welcome Marjorie!
I wanted to commiserate the loss of your wardrobe. I have gained weight too, and lost most of my hair, but it's really the new wardrobe that I'm depressed about. I don't want to come off as shallow, but with all the illness, pain, and change Lupus has brought into my life.....I miss my clothes!! The most skin I expose now is my finger tips.

But the unforturnate truth is that I feel much better physically since I changed my clothing to complete coverage. It's been worth it, but I still feel sad. :cry:

Now it's my goal to compensate by creating dramatic 'eccentric' outfits. If I can't be sexy.....I shall be flambouyant!!!!

We are still beautiful!!!
Peace, Love, and Light
Frekkuls