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02/26/2009 08:24 AM

I HATE LUPUS!!!!!!!!

Posts: 72

Today is the 3rd day that I have been in my house. I'm exhausted, have fevers, joint pain and I hate having this disease. The majority of my friends and family can't understand why I can't get up and I just can not go on explaining it anymore. I was diagnosed 2 months ago and I feel like it's never going to get better. I have been seeing a chronic illness therapist and she told me that I would have to stop looking at my life the way it was before and learn to deal with these new parameters. That would be fine, if the parameters didn't change every two hours!!! I can be feeling great in the morning and then BOOM, no more energy (yes, I read the spoon story!). It's unreal. I want to feel somewhat normal and get back to living..... I've been on plaquenil for 2 months and I am hoping that it will start working soon.....thanks for letting me vent Wink

02/26/2009 09:42 AM


I was dx. with lupus about three years ago. When I was first dx. I was in so much pain. So hard to deal with my new life with lupus. I have pain everyday. Always something new to deal with.

The last couple of weeks once again dealing with fevers, joint and lung issues. The little energy I had is one. Even hard to walk to the bathroom,, so tired.

I try to write all my feelings in a journal. I try to look at things a different way. I know everyday is a struggle, but there is some good out of it all. I enjoy the small things. I enjoy reading. So I'm able to read a lot now!! LOL

Just rest as much as you can. Don't rush. I know its hard to give up the old life. But you need to to start a new. You will find things to make your life better. You will cry and scream for your old life, but there is a new life with lupus waiting for you. Take care. Gen

02/26/2009 01:40 PM
Posts: 6150
Group Leader
I'm an Advocate

Very well put Gen! I have been living with lupus for 15 years and has changed. I also write everything in a journal and that seems to help. I still have my ups and downs but I try to be positive because I believe that helps. Everyday there is something new happening to my body and of course I chalk it up to lupus. In the beginning it was very dificult for me becasue I had two young children and they really had to grow up fast and my daughter at that time was 8 and she was taking care of me and she still does when shes home visiting even my 70 year old mother takes care of me and it should be the other way around I should be taking care of her. Jesmicole I agree with your therapist your life is different and maybe dwelling on your old life is making it that much harder for you and believe me I know because I was where you are at one time. It does take time to learn to live with an illness like lupus but you will and we are here for you anytime you need to vent because that is part of the healing process. Hang in thereSmile


02/26/2009 08:23 PM
Posts: 37

I just recently started writing a journal and I have noticed that it has helped lift my spirits a bit. It takes a little weight off my shoulders because I'm getting my thoughts/feelings down on paper and out of my system. This group is awesome and we are always here for you no matter what. I've had so many ups and downs myself with battling Lupus for almost 9 years now and I'm still amazed by what and how this disease effects my life. I'm really tired myself now so I'm going to bed but I hope you see good results with your meds soon. Take Care.

02/27/2009 11:47 AM
Posts: 85

Hey Jesmicole,

Just wanted to let you know that that I feel the same way about having Lupus. I have had it for 15 year and it seems like you never get used to the rollercoaster ride of emotions. I have learned that you need to take it a day at a time and make the most out of the good days. I love this support group too because they always have kind words and seem to have a way of making you feel better when you're down. We are all here for you even if you just need to vent. I know it makes me feel better when I can talk to people who know exactly how I feel. Hope you start feeling better soon.


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