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Creekbank
07-19-2013, 10:04 AM
Hello everyone, I am new to the Lupus Forum. It has been almost a year that I have really been fighting the symptoms and pain. I have yet to receive a definite diagnosis of Lupus, they just say I have some sort of Auto-Immune disorder. After much research, I have come to conclude it is most likely Lupus. I am a stay at home mom of 2 kids and it is really tough some days. I don't have a support group location close to me, so I am going to try this. Thanks in advance to anyone who responds to me. I am hoping to just find some people who deal with the same things I do.

shelly
07-19-2013, 08:18 PM
Welcome to this site. I think most of us struggled at one point to get a definate diagnosis. Dont give up. Try different doctors if you arent getting answers. Just try to take the time you need to deal with your illness. Its tough when you have kids but u have to take care of yourself first or you wont be good for anyone else. I wish you luck in dealing with this and know you can get a lot of questions answered here.

rob
07-20-2013, 06:59 AM
Welcome to WHL Creekbank!

Please make yourself at home.

Creekbank
07-22-2013, 04:48 AM
Thank you Shelly! I try very hard to be positive and not give up. I am having a rough time now with a major flare. I have only had about 3 or 4 weeks of good in the last year. This flare is by far the worst. I am lucky, as I have a son 12 and he understands the disease and what it does to me, but my 4 year old doesn't understand why mommy is sick all the time. It really breaks my heart. How long have you been dealing with Lupus? I am glad I decided to join, as I can use some friends that have experienced the same things I have.

Creekbank
07-22-2013, 10:39 AM
Shelly,
Thank you for the response. I am struggling to make myself take time for me and the illness. My life before the illness has been so busy. I never sat down or made time for me, that made me happy. Now, I find it a struggle to do a fourth of the things I did before Lupus entered my life. How long have you been dealing with your illness? Do you find it a struggle to get through the day? I am so glad I found this site.

Thanks again.

shelly
07-27-2013, 06:31 PM
I have had it forever. I was diagnosed in 2000. There have been some decent times but since 2010 it seems like I have a major problem at least once a year. I had one event of complete renal failure with no explanation. A couple days in the hospital and one dialysis treatment and that was over. I got a very bad case of bacterial pneumonia that they couldnt identify and they had to put me on like support for 7 days to let my lungs rest. That really pulled me down. When they woke me up I was so weak I couldnt even raise my hand up. When I did go home I was on oxygen for a while. I had permanent lung damage and now have copd and have to use inhalers every day. My luck just hasnt been good lately. I finally did get my disability approved so that was one good thing. Most of my problems though are mainly muscle pain and a very bad problem with skin rashes. I have a great support system. I live with my daughter, 26, and my son, 22. My parents and sister are always around helping me. Do u have any supportive adults that can help you out? I dont know what I would do without their help.

Saysusie
07-29-2013, 12:49 PM
Hello and Welcome to our family;
You have already gotten to know some of our members. I just wanted to make sure that I also welcomed you.
Many of us have struggled to find our "new normal" with this disease. The important thing to try to remember is not to mourn too deeply over your previous normal! Try to make your "new normal" one that allows you the time to get recuperative rest so that you can be with your children and do things with your family in a newly managed way. You may find that there is "joy" to be had in your "new normal".
We are here to help you in any way that we can; to give you some ideas, to offer you advice, to share our experiences, to provide you with information, and to give you comfort, support, and understanding.

Again, Welcome

Peace and Blessings
Namaste
Saysusie

spotted D
07-29-2013, 09:33 PM
Hi, I just joined this because I need someone who understands.I do know starting to get help right away and taking care of you first is imparative. I haven't, put kids first always! Now, I can barly do it

Creekbank
07-30-2013, 09:55 AM
I have the same problem. I have yet to make myself understand to stop and rest. I have always been a person to do from morning until night. It is difficult to stop when you have kids and the things you need to do. Let's not mention the things you want to do. For me, it's hard to admit that sometimes I just can not do it. I personally struggle with this. I hope you get over this quickly.

Creekbank
07-30-2013, 09:56 AM
Thank you for the welcome wishes. I am go glad I decided to join a support group.

Creekbank
07-30-2013, 10:03 AM
I am fortunate to have a wonderful husband who supports me. I hope you are having better days. I am suffering with Lung issues now. I have had problems with pain in my whole body. Have you found anything that helps reduce your flares? I have heard that sometimes a person can tell when a flare is coming, have you experienced that?
Thanks for sharing the information.