I think the discussion somehow ended for my last post, so I am hoping that this will reach all those who responded to my posts about my friend with lupus. Sorry I wasn't online until now -- between the holiday prep and having to coordinate/help with a sudden move over the weekend for a family who lost their home during Hurricane Sandy, it was even more crazy than usual!
Anyway, I have read through your many and varied answers, and have been helped tremendously!!! I was hoping to learn more about lupus through this network, and I have.
For those who interpreted my messages as uncaring or not compassionate towards my friend, I apologize. We have been friends for many years, and I love her dearly. I assure you that she is very much loved and cared for by her entire family! There have been many tears shed as those who love her have watched her struggle and seen her decline. All of our counseling sessions up until this point have dealt mostly with her and her needs. Our last session was the very first time anything was addressed in reference to perhaps needing to have her medications re-assessed because we could see she was struggling. It was her extreme reaction that made us realize that perhaps this "iceberg nerve" we had apparently touched was deeper than we had realized. From there, pieces started to fall into place. But I "hear" what you are saying and assure you that keeping our love and respect for her in the forefront is what will happen no matter what is decided :)
Thank you so much to all of you who have shared such personal information. While I realize that only her doctor will be able to figure this out, you have helped to clarify what questions need to be asked, and have confirmed the urgency of the situation. I can't tell you what a huge relief this is. I had no idea there were so many dangers and complications -- not just from medications but from lupus itself. Thank you, thank you for reaching out to me and spending time helping someone you don't know. I am now re-reading through everything, and will be printing everything out so we don't miss anything. I feel like finally there is some solid ground under us.
Despite the frightening possibilities, you have given me far more hope than I had when I first posted my situation. I am grateful to you. Thanks again and God bless each one of you!
I've just looked at the first thread you added and i do apologise for not adding to it but members on here have given excellent comments regarding Lupus and covered all aspects but "Julie" did mention about the central nervous system which affects the brain and she's totally correct on that issue besides vasculitis of the brain causing problems also.
Lupus is one life changing disease which it's we all at different degree's and with what autoimmune diseases are involved also makes issues alot harder to deal with.
Kristin regarding medication with Lupus it's getting the correct mixture and dosage to help we and alot of meds stretch to helping we 1-2yrs down the line before we need moving on to something stronger but not all of them if a patient is feeling better with what they're on and going into remission for member's is lovely news to hear...it's not very often but when it does happen, there's better days ahead for them.
Your friend just needs total support and having a caring and loving family besides friends helps Lupus patients such alot.
Thank you for your lovely comments regarding our members help besides information...as it's appreciated dearly, we're all here to help one another best as possible.
We all learn from each other, and discussions help us as much as we get a chance to help others. I think it is wonderful of you to research lupus and help your friend! I wish my family would join in and do the same for me : ) Like Terri says, this disease affects us all so differently. I'm having more issues now and its frustrating, I thought with the medication I should be getting better not worse.
Please keep us updated with your friend's situation, we are all praying for her. Love, Trisha
Everyone, I wanted to let each and every one of you know that I have been reading through everything you sent. Trisha, Sheila, Faye, Mia, Queenie, Clara, Nurse93, USAGURL, jujubeee, Julie, Terri, siskiyousis, and Brynn -- if I left your name out by accident, I apologize, but assure you I have been reading EVERYTHING!! Brynn, I may take you up on the direct contact offer! I am trying to process everything that I've seen so far, and I am indeed coming up with a few more questions. While I am afraid to wait too long, experience has taught me that it's better to take enough time to make a wise decision before I do ANYTHING! Again, I am grateful that you would be willing to share such personal and painful experiences with someone you don't know. I wish I could convey to you what a tremendous help this has been.
Your welcome and weexpressing personal opinions helps other members but also releases alot of stress from ourselves besides and if it's helping you in the process all the better and any questions you have furthur...FIRE AWAY and we'll help best possible.